Autism spectrum disorder (ASD) is a developmental disorder that affects communication and behaviour. Although autism can be diagnosed at any age, it is said to be a “developmental disorder” because symptoms generally appear in the first two years of life.
According to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), a guide created by the American Psychiatric Association used to diagnose mental disorders, people with ASD have:
· Difficulty with communication and interaction with other people
· Restricted interests and repetitive behaviours
· Symptoms that hurt the person’s ability to function properly in school, work, and other areas of life
Autism is known as a “spectrum” disorder because there is wide variation in the type and severity of symptoms people experience. ASD occurs in all ethnic, racial, and economic groups. Although ASD can be a lifelong disorder, treatments and services can improve a person’s symptoms and ability to function. The American Academy of Pediatrics recommends that all children be screened for autism. All caregivers should talk to their doctor about ASD screening or evaluation.
Autism is a spectrum disorder, meaning that there is a wide degree of variation in the way it affects people. Every child on the autism spectrum has unique abilities, symptoms, and challenges. Learning about the different autism spectrum disorders will help you better understand your own child, get a handle on what all the different autism terms mean, and make it easier to communicate with the doctors, teachers, and therapists helping your child.
Understanding autism spectrum disorders
Autism is not a single disorder, but a spectrum of closely related disorders with a shared core of symptoms. Every individual on the autism spectrum has problems to some degree with social interaction, empathy, communication, and flexible behaviour. But the level of disability and the combination of symptoms varies tremendously from person to person. In fact, two kids with the same diagnosis may look very different when it comes to their behaviours and abilities.
If you’re a parent dealing with a child on the autism spectrum, you may hear many different terms including high-functioning autism, atypical autism, autism spectrum disorder, and pervasive developmental disorder. These terms can be confusing, not only because there are so many, but because doctors, therapists, and other parents may use them in dissimilar ways.
But no matter what doctors, teachers, and other specialists call the autism spectrum disorder, it’s your child’s unique needs that are truly important. No diagnostic label can tell you exactly what challenges your child will have. Finding treatment that addresses your child’s needs, rather than focusing on what to call the problem, is the most helpful thing you can do. You don’t need a diagnosis to start getting help for your child’s symptoms.
There is understandably a great deal of confusion about the names of various autism-related disorders. Some professionals speak of “the autisms” to avoid addressing the sometimes subtle differences among the conditions along the autism spectrum. Up to 2013, there were five different “autism spectrum disorders.” The differences among those five were hard to understand for parents trying to figure out which—if any—of these conditions affected their child. The American Psychiatric Association attempted to simplify matters by combining the pervasive developmental disorders into a single diagnostic classification called “Autism Spectrum Disorder” in the latest edition of the diagnostic bible known as the Diagnostic and Statistical Manual of Mental Disorders. Since many people were diagnosed prior to the change in the classification system and since many professionals still refer to the pre-2013 labels, we summarize them here for your reference. For purposes of clarity, we emphasize that all of the following conditions are now encompassed under the umbrella classification “Autism Spectrum Disorder” (ASD).
The three most common forms of autism in the pre-2013 classification system were Autistic Disorder—or classic autism; Asperger’s Syndrome; and Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS). These three disorders share many of the same symptoms, but they differ in their severity and impact. Autistic disorder was the most severe. Asperger’s Syndrome, sometimes called high-functioning autism, and PDD-NOS, or atypical autism, were the less severe variants. Childhood disintegrative disorder and Rett Syndrome were also among the pervasive developmental disorders. Because both are extremely rare genetic diseases, they are usually considered to be separate medical conditions that don’t truly belong on the autism spectrum.
In large part due to inconsistencies in the way that people were classified, all of the above-named variants of autism are now referred to as “Autism Spectrum Disorder.” The single label shifts the focus away from where your child falls on the autism spectrum to whether your child has Autism Spectrum Disorder. If your child is developmentally delayed or exhibits other autism-like behaviours, you will need to visit a medical professional or a clinical psychologist who specializes in diagnostic testing for a thorough evaluation. Your doctor can help you figure out whether your child has Autism Spectrum Disorder and how severely he or she is affected.
Causes and Risk Factors
While scientists don’t know the exact causes of ASD, research suggests that genes can act together with influences from the environment to affect development in ways that lead to ASD. Although scientists are still trying to understand why some people develop ASD and others don’t, some risk factors include:
· Having a sibling with ASD
· Having older parents
· Having certain genetic conditions—people with conditions such as Down syndrome, fragile X syndrome, and Rett syndrome are more likely than others to have ASD
· Very low birth weight
How Early Intervention Can Help Your Child With Autism
Common knowledge says that parents, upon receiving an autism diagnosisfor their child, should run—not walk—to the nearest early intervention center.
Early intensive intervention, it is said, is the key to “optimal outcomes” for children with autism. Scientists have long known that the brain grows quickly between the ages of zero and three, which suggests that early intervention would be an ideal way to treat a childhood disorder.
But what does the science say about the outcomes of early intervention for children with autism?
At least one study suggests that about 14% of children with autism who undergo two intensive years of a program called the Early Start Denver Model will improve radically. In fact, those children would no longer qualify for autism diagnoses if they were being evaluated at a later age. A similar program called LEAP had similar outcomes. There is even some evidence that these programs can change the way the brain functions.
There are, however, a few caveats to this finding.
- First, of course, is the fact that the vast majority of children who undergo intensive early intervention do improve radically. Yes, their symptoms may improve, but they may still have very significant delays and challenges.
- Second is the finding that even those children whose autism symptoms improve radically are left with developmental and/or behavioural challenges. In fact, those children are often diagnosable with disorders such as ADHD, learning disabilities, intellectual disability, and so forth.
- Third, an accurate autism diagnosis is, by definition, a lifelong diagnosis. Symptoms that are difficult to identify in a 6-year-old can become serious challenges in a 20-year-old. Problems with pragmatic speech, anxiety, and repetitive behaviours often emerge as people are exposed to more complex and challenging situations.
Studies suggest that certain types of intensive early intervention do make a difference for at least a couple of years following the treatment. To what degree such improvements will last past age six is, at present, unknown.
While there are solid practical reasons for early intervention, there are few research studies that show that earlier intervention offers more hope of improvement than later intervention.
One small study looked at a program called “Infant Start.” The treatment was administered by parents over a six-month period to 6- to 15-month-old infants who exhibited marked autism symptoms, such as decreased eye contact, social interest or engagement, repetitive movement patterns, and a lack of intentional communication. Six out of seven infants in the study improved dramatically.
Does this mean all infants with delays should get intensive early intervention? At this point, we really don’t know.
In fact, Geraldine Dawson, Ph.D., Professor of Psychology and Director of the University of Washington Autism Center, makes the following point: “For all we know, a child with a developmental delay may have a longer window of opportunity for growth. I think it’s not helpful to alarm parents in that way. I’ve seen kids who start late and quickly catch up—a lot of kids with intensive early intervention who progressed slowly and then took off in elementary schools.”
Early intervention is clearly a good idea. But it’s by no means clear that the earlier and more intensive the intervention, the better the outcome. Parents who rush to early treatment with the hope that their child will quickly “recover” from autism may be disappointed—while parents who waited “too long” may see surprisingly positive outcomes.
But why wait?
It makes sense to treat a child with autism as early as possible. The reasons are both research-based and common-sensical:
- Toddlers and preschoolers have no other obligations, so their whole day can be devoted to therapy (as opposed to academics).
- Two-year-olds have few ingrained habits, so it’s relatively easy to stop negative behaviours before they become intractable.
- Helping children to learn socially acceptable behaviours at a very young age is a great idea whether they have autism or not.
- Early intervention is almost always provided free of charge, so there is no financial risk.
- Even if, for some reason, your child has been inaccurately diagnosed with autism, the types of early intervention programs offered to kids on the spectrum are usually fun, play-based, and risk-free. You don’t need to worry that your child will receive potentially harmful treatments.
How well does such therapy work? That depends on the child. As each individual child has his own profile, abilities, and challenges, each child will have his own outcomes. But even a little progress is far better than none, especially when that progress comes in the form of new communication skills that allow a child to express his desires and needs.
Yes, early intervention is a good idea. There is nothing to lose and everything to gain from getting a child with autism into age-appropriate therapy as early as is feasible. Having said this, however, it is important to remember that early intervention is unlikely to wipe out autism symptoms. And even if your child’s symptoms improve significantly, there is a very good chance that other behavioural, developmental, and/or intellectual symptoms may remain.
Autism is a “spectrum disorder,” meaning that people with autism may have a wide range of mild, moderate, or severe symptoms. But do all people with an autism spectrum diagnosis have the same disorder, no matter what their symptoms?
From 1994 to May 2013, the autism spectrum was represented by five autism spectrum diagnoses in the fourth version of the official Diagnostic Manual. They included Asperger syndrome, Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), Autistic Disorder, Childhood Disintegrative Syndrome, and Rett Syndrome.
Unfortunately, these diagnoses were confusing. Not only were they difficult to define, but different practitioners selected different diagnoses for the same patients. To clarify their diagnoses, practitioners (as well as teachers and therapists) used terms like “severe autism,” “mild autism,” and “high functioning autism.” These terms, however, aren’t true diagnoses at all; they’re just descriptions. And while they were intended to help parents and teachers better understand a child’s status on the autism spectrum, each practitioner had their own idea of what “mild” or “severe” might look like.
In 2013, the fifth version of the Diagnostic Manual was published. In the DSM-5, there is just one “autism spectrum disorder.”
Everyone with an autism diagnosis, no matter what his or her symptoms, is now lumped under that single diagnosis. Three levels of autism, along with descriptors such as “nonverbal” are intended to make diagnosis easier and clearer.
But that doesn’t mean we’ve stopped using the older or informal terms, some of which are a bit clearer than Autism Spectrum Disorder Level II. In fact, even doctors and other practitioners are likely to use terms like Asperger Syndrome while using the new autism spectrum code for billing purposes.
Welcome to the complex world of many autisms.
The “autism spectrum” describes a set of developmental delays and disorders which affect social and communication skills and, to a greater or lesser degree, motor and language skills. It is such a broad diagnosis that it can include people with high IQs and mental retardation. People with autism can be chatty or silent, affectionate or cold, methodical or disorganized.
Until May 2013, official diagnoses within the autism spectrum included autistic disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS), Asperger syndrome, Childhood Disintegrative Disorder, and Rett Syndrome.
Today, there is just one Autism Spectrum Disorder, with three levels of severity—but many therapists, clinicians, parents, and organizations continue to use terms like PDD-NOS and Asperger syndrome.
“Pervasive Developmental Disorder” is a formal term that, between 1994 and 2013, meant exactly the same thing as “autism spectrum disorder.” If your child was diagnosed before 2013 you may have heard this term from an evaluator or doctor, but it is no longer in general use.
- The term Pervasive Developmental Disorder is no longer in general use
- The term was synonymous with autism spectrum disorder
- People with PDD have a wide range of developmental differences which can be mild or severe
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Asperger syndrome describes individuals at the highest-functioning end of the autism spectrum. The term—and the diagnosis—was removed from the diagnostic manual in 2013, but virtually everyone in the autism community continues to use it because of its usefulness in describing a very specific group of people.
People with Asperger syndrome generally develop spoken language in the same way as typically developing children but have a tough time with social communication.
These difficulties become more obvious as they get older and social expectations increase. Because people with Asperger syndrome are often very intelligent – but “quirky” – the disorder is sometimes nicknamed “geek syndrome” or “little professor syndrome.”
- Asperger syndrome is no longer a valid diagnosis
- Asperger syndrome was and is still often used to describe people with “high functioning” autism
- Most people with the symptoms of Asperger syndrome are of normal or above normal intelligence with strong verbal skill and significant difficulties with social communication
- Many people with Asperger syndrome have significant sensory challenges
- People with the symptoms of Asperger syndrome are now considered to have Level 1 Autism Spectrum Disorder
The term “mild autism” is not an official diagnosis. It’s simply a more descriptive term than “Asperger syndrome” or “autism.” Generally speaking, when people use the term mild autism they are referring to individuals whose symptoms fit an autism spectrum diagnosis, but who has strong verbal skills and few behavioural issues.
Those individuals may, however, have significant problems with social communication. They may also have problems coping with too much sensory input (loud noise, bright lights, etc.).
- Mild autism is essentially similar to or identical to Asperger syndrome
- People with mild autism may be difficult to recognize until they are under stress or coping with complex social situations
- Most people with mild autism are now considered to have Level 1 Autism Spectrum Disorder
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Like “mild” autism, high functioning autism (sometimes shortened to HFA) is a made-up term that’s become more and more commonly used. At one point (before 2013), the term was used to distinguish “autism” from “Asperger syndrome.”
The official distinction made by practitioners before 2013 was that people with HFA had or have speech delays while people with Asperger Syndrome have normal speech development. Of course, these days there IS no Asperger syndrome, making the distinction moot.
- High functioning autism, like mild autism, is similar to Asperger syndrome and would now be termed Level 1 Autism Spectrum Disorder
- Unlike people who were diagnosed with Asperger syndrome, people with HFA developed language slowly or idiosyncratically
- Like Asperger syndrome and mild autism, HFA is a real and significant disability which can lead to challenges in managing social situations, school demands, work expectations, or recreational activities.
“Pervasive Developmental Disorder Not Otherwise Specified” is a mouthful of words that, until 2013, were used to describe individuals who didn’t fully fit the criteria for other specific diagnoses but are nevertheless autistic. Because there is no easy way to define the symptoms of PDD-NOS, which may range from very mild to very severe, the diagnostic category no longer exists, though a new diagnosis, Social Communication Disorder, may become a similar “catchall” category.
- As of 2013, PDD-NOS is no longer a valid diagnosis
- PDD-NOS was a “catchall” for disorders with autism-like symptoms that didn’t fit the full criteria for
- People with PDD-NOS could have mild or severe symptoms
- Those people who were diagnosed with PDD-NOS prior to the DSM-5 will now have an autism spectrum diagnosis and may be diagnosed at Level 1, 2, or 3 depending on the severity of symptoms
Severe autism is not an official diagnosis; instead, it is a descriptive term along with profound autism, low functioning autism, and classic autism.
People with “severe autism” are often non-verbal and intellectually disabled, and may have very challenging behaviours.
- Severe autism is usually diagnosed as Level 3 Autism Spectrum Disorder
- Severe autism is extremely challenging and may include aggression and other difficult behaviours
- Most people with severe autism never gain meaningful use of spoken language
- Some people with symptoms of severe autism do gain the ability to communicate through signs, picture boards, or other means
Rett syndrome is a genetic disorder that affects only girls. It is the only one of the former autism spectrum disorders that can be diagnosed medically (so far); as of May 2013, it is no longer included in the Autism Spectrum.
Girls with Rett syndrome develop severe symptoms including the hallmark social communication challenges of autism. In addition, Rett syndrome can profoundly impair girls’ ability to use their hands usefully.
- Rett syndrome is no longer part of the autism spectrum
- Rett syndrome is a genetic disorder which can be medically diagnosed
- Rett syndrome impacts only girls
- Symptoms of Rett syndrome include social communication challenges and the loss of purposeful use of one’s hands
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The broad autism phenotype includes those people with the merest touch of autism. This is sometimes described as having “shadow symptoms.” These sub-clinical symptoms can include social awkwardness, anxiety, a preference for sameness and routine, and an unusual degree of discomfort around bright lights, loud noise, and other sensory “assaults.”
Such mild symptoms, which are recognizable but which do not significantly impair daily functioning, are common among family members of people with full-blown autism. Is this really autism? Or just a personality type? As with many issues related to autism, it depends on whom you ask. Either way, it is often helpful for people with such symptoms to seek help with building social communication skills and coping with sensory challenges.
- There is a “broad autism phenotype” which includes people with milder autism-like symptoms
- Many people with such symptoms have children or other relatives on the autism spectrum
- Many of the treatments available for autism can be helpful for people with milder versions of the same symptoms
Every person with autism receives the same diagnosis: autism spectrum disorder (ASD). But autism is a spectrum disorder, meaning that a person can be mildly, moderately, or severely autistic. What’s more, while everyone with autism has certain core symptoms, many people also have additional associated symptoms such as intellectual or language impairments.
To help clinicians (and others) better describe individual cases of autism, the creators of the official diagnostic manual (DSM-5) developed three “levels of support.” Clinicians are expected to diagnose people with autism at level 1, level 2, or level 3. These levels reflect individuals’ ability to communicate, adapt to new situations, expand beyond restricted interests, and manage daily life. People at level 1 need relatively little support, while people at level three need a great deal of support.
The autism spectrum is incredibly wide and varied. Some people with autism are brilliant while others are intellectually disabled. Some have severe communication problems while others are authors and public speakers.
To address this issue, the DSM-5 diagnostic criteria includes three “functional levels,” each of which is defined based on the amount of “support” an individual requires to function in the general community.
By providing an autism spectrum diagnosis with a functional level, at least in theory, it should be possible to draw a clear picture of an individual’s abilities and needs.
Here are the three levels, as described in the DSM:
ASD Level 3: “Requiring Very Substantial Support”
Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning, very limited initiation of social interactions, and minimal response to social overtures from others. For example, a person with few words of intelligible speech who rarely initiates interaction and, when he or she does, makes unusual approaches to meet needs only and responds to only very direct social approaches.
Inflexibility of behaviour, extreme difficulty coping with change, or other restricted/repetitive behaviours markedly interfere with functioning in all spheres. Great distress/difficulty changing focus or action.
ASD Level 2: “Requiring Substantial Support”
Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions; and reduced or abnormal responses to social overtures from others. For example, a person who speaks in simple sentences, whose interaction is limited to narrow special interests, and who has markedly odd nonverbal communication.
Inflexibility of behaviour, difficulty coping with change, or other restricted/repetitive behaviours appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress and/or difficulty changing focus or action.
ASD Level 1: “Requiring Support”
Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions and clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to-and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful.
Inflexibility of behaviour causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper independence.
As you have probably already realized, the three autism “levels” raise as many questions as they answer. For example:
- What type of “support” did the American Psychiatric Association have in mind when it developed these functional levels? An aide? A personal care assistant? A 1:1 school aide? A job coach? A college advisor?
- In which situations do people at various levels require “support?” Some people with autism do fine at home but need help in school (where demands are specific and intense). Other people with autism do well at school but need help in social and work settings.
- Some people with autism have received sufficient therapy to appear close to typical when interviewed by a single adult but have significant issues when interacting with peers. What type of support might they need?
- Do the levels of support refer back, in any way, to services provided? (The answer, so far, appears to be “sometimes.”)
- Anxiety is a very common trait among people with higher functioning autism, and this can cause extreme challenges in typical settings. If a person is bright, verbal, and academically capable—but anxious and depressed, and thus in need of significant support in order to function in a job or school—where does he fit into the picture?
Signs and Symptoms of ASD
People with ASD have difficulty with social communication and interaction, restricted interests, and repetitive behaviours. The list below gives some examples of the types of behaviours that are seen in people diagnosed with ASD. Not all people with ASD will show all behaviours, but most will show several.
Social communication / interaction behaviours may include:
· Making little or inconsistent eye contact
· Tending not to look at or listen to people
· Rarely sharing enjoyment of objects or activities by pointing or showing things to others
· Failing to, or being slow to, respond to someone calling their name or to other verbal attempts to gain attention
· Having difficulties with the back and forth of conversation
· Often talking at length about a favorite subject without noticing that others are not interested or without giving others a chance to respond
· Having facial expressions, movements, and gestures that do not match what is being said
· Having an unusual tone of voice that may sound sing-song or flat and robot-like
· Having trouble understanding another person’s point of view or being unable to predict or understand other people’s actions
Restrictive / repetitive behaviours may include:
· Repeating certain behaviours or having unusual behaviours. For example, repeating words or phrases, a behaviour called echolalia
· Having a lasting intense interest in certain topics, such as numbers, details, or facts
· Having overly focused interests, such as with moving objects or parts of objects
· Getting upset by slight changes in a routine
· Being more or less sensitive than other people to sensory input, such as light, noise, clothing, or temperature
People with ASD may also experience sleep problems and irritability. Although people with ASD experience many challenges, they may also have many strengths, including:
· Being able to learn things in detail and remember information for long periods of time
· Being strong visual and auditory learners
· Excelling in math, science, music, or art
Keep in mind that just because your child has a few autism-like symptoms, it doesn’t mean he or she has Autism Spectrum Disorder. Autism Spectrum Disorder is diagnosed based on the presence of multiple symptoms that disrupt a person’s ability to communicate, form relationships, explore, play, and learn. (Note: In the DSM-5, the latest version of the diagnostic “Bible” used by mental health professionals and insurers, deficits in social interaction and communication are lumped together in one category. We present problems with social skills separately from problems with speech and language, to make it easier for parents to quickly identify symptoms.)
Basic social interaction can be difficult for children with autism spectrum disorders. Symptoms may include:
- Unusual or inappropriate body language, gestures, and facial expressions (e.g. avoiding eye contact or using facial expressions that don’t match what he or she is saying)
- Lack of interest in other people or in sharing interests or achievements (e.g. showing you a drawing, pointing to a bird)
- Unlikely to approach others or to pursue social interaction; comes across as aloof and detached; prefers to be alone
- Difficulty understanding other people’s feelings, reactions, and nonverbal cues
- Resistance to being touched
- Difficulty or failure to make friends with children the same age
Many children with Autism Spectrum Disorder struggle with speech and language comprehension. Symptoms may include:
- Delay in learning how to speak (after the age of two) or doesn’t talk at all
- Speaking in an abnormal tone of voice, or with an odd rhythm or pitch
- Repeating words or phrases over and over without communicative intent
- Trouble starting a conversation or keeping it going
- Difficulty communicating needs or desires
- Doesn’t understand simple statements or questions
- Taking what is said too literally, missing humor, irony, and sarcasm
Children with Autism Spectrum Disorder are often restricted, rigid, and even obsessive in their behaviours, activities, and interests. Symptoms may include:
- Repetitive body movements (hand flapping, rocking, spinning); moving constantly
- Obsessive attachment to unusual objects (rubber bands, keys, light switches)
- Preoccupation with a narrow topic of interest, sometimes involving numbers or symbols (maps, license plates, sports statistics)
- A strong need for sameness, order, and routines (e.g. lines up toys, follows a rigid schedule). Gets upset by change in their routine or environment.
- Clumsiness, abnormal posture, or odd ways of moving
- Fascinated by spinning objects, moving pieces, or parts of toys (e.g. spinning the wheels on a race car, instead of playing with the whole car)
- Hyper- or hypo-reactive to sensory input (e.g. reacts badly to certain sounds or textures, seeming indifference to temperature or pain)
Children with Autism Spectrum Disorder tend to be less spontaneous than other kids. Unlike a typical curious little kid pointing to things that catch his or her eye, children with ASD often appear disinterested or unaware of what’s going on around them. They also show differences in the way they play. They may have trouble with functional play, or using toys that have a basic intended use, such as toy tools or cooking set. They usually don’t “play make-believe,” engage in group games, imitate others, collaborate, or use their toys in creative ways.
Related signs and symptoms of Autism Spectrum Disorder
While not part of autism’s official diagnostic criteria, children with autism spectrum disorders often suffer from one or more of the following problems:
Sensory problems – Many children with autism spectrum disorders either underreact or overreact to sensory stimuli. At times they may ignore people speaking to them, even to the point of appearing deaf. However, at other times they may be disturbed by even the softest sounds. Sudden noises such as a ringing telephone can be upsetting, and they may respond by covering their ears and making repetitive noises to drown out the offending sound. Children on the autism spectrum also tend to be highly sensitive to touch and to texture. They may cringe at a pat on the back or the feel of certain fabric against their skin.
Emotional difficulties – Children with autism spectrum disorders may have difficulty regulating their emotions or expressing them appropriately. For instance, your child may start to yell, cry, or laugh hysterically for no apparent reason. When stressed, he or she may exhibit disruptive or even aggressive behaviour (breaking things, hitting others, or harming him or herself). The National Dissemination Center for Children with Disabilities also notes that kids with ASD may be unfazed by real dangers like moving vehicles or heights, yet be terrified of harmless objects such as a stuffed animal.
Uneven cognitive abilities – ASD occurs at all intelligence levels. However, even kids with normal to high intelligence often have unevenly developed cognitive skills. Not surprisingly, verbal skills tend to be weaker than nonverbal skills. In addition, children with Autism spectrum disorder typically do well on tasks involving immediate memory or visual skills, while tasks involving symbolic or abstract thinking are more difficult.
Approximately 10% of people with autism spectrum disorders have special “savant” skills, such as Dustin Hoffman portrayed in the film Rain Man. The most common savant skills involve mathematical calculations, calendars, artistic and musical abilities, and feats of memory. For example, an autistic savant might be able to multiply large numbers in his or her head, play a piano concerto after hearing it once, or quickly memorize complex maps.
Doctors diagnose ASD by looking at a person’s behaviour and development. ASD can usually be reliably diagnosed by the age of two. It is important for those with concerns to seek out assessment as soon as possible so that a diagnosis can be made, and treatment can begin.
Diagnosis in Young Children
Diagnosis in young children is often a two-stage process.
Stage 1: General Developmental Screening During Well-Child Checkups
Every child should receive well-child check-ups with a pediatrician or an early childhood health care provider. The American Academy of Pediatrics recommends that all children be screened for developmental delays at their 9-, 18-, and 24- or 30-month well-child visits and specifically for autism at their 18- and 24-month well-child visits. Additional screening might be needed if a child is at high risk for ASD or developmental problems. Those at high risk include children who have a family member with ASD, have some ASD behaviours, have older parents, have certain genetic conditions, or who were born at a very low birth weight.
Parents’ experiences and concerns are very important in the screening process for young children. Sometimes the doctor will ask parents questions about the child’s behaviours and combine those answers with information from ASD screening tools, and with his or her observations of the child. Read more about screening instruments on the Centers for Disease Control and Prevention (CDC) website.
Children who show developmental problems during this screening process will be referred for a second stage of evaluation.
Stage 2: Additional Evaluation
This second evaluation is with a team of doctors and other health professionals who are experienced in diagnosing ASD.
This team may include:
· A developmental pediatrician—a doctor who has special training in child development
· A child psychologist and/or child psychiatrist—a doctor who has specialized training in brain development and behaviour
· A neuropsychologist—a doctor who focuses on evaluating, diagnosing, and treating neurological, medical, and neurodevelopmental disorders
· A speech-language pathologist—a health professional who has special training in communication difficulties
The evaluation may assess:
· Cognitive level or thinking skills
· Language abilities
· Age-appropriate skills needed to complete daily activities independently, such as eating, dressing, and toileting
Because ASD is a complex disorder that sometimes occurs along with other illnesses or learning disorders, the comprehensive evaluation may include:
· Blood tests
· Hearing test
The outcome of the evaluation will result in a formal diagnosis and recommendations for treatment.
Diagnosis in older children and adolescents
ASD symptoms in older children and adolescents who attend school are often first recognized by parents and teachers and then evaluated by the school’s special education team. The school’s team may perform an initial evaluation and then recommend these children visit their primary health care doctor or doctors who specialize in ASD for additional testing.
Parents may talk with these specialists about their child’s social difficulties including problems with subtle communication. These subtle communication issues may include problems understanding tone of voice, facial expressions, or body language. Older children and adolescents may have trouble understanding figures of speech, humor, or sarcasm. Parents may also find that their child has trouble forming friendships with peers.
Diagnosis in adults
Diagnosing ASD in adults is often more difficult than diagnosing ASD in children. In adults, some ASD symptoms can overlap with symptoms of other mental-health disorders, such as anxiety or attention-deficit/hyperactivity disorder (ADHD).
Adults who notice the signs and symptoms of ASD should talk with a doctor and ask for a referral for an ASD evaluation. While testing for ASD in adults is still being refined, adults can be referred to a neuropsychologist, psychologist, or psychiatrist who has experience with ASD. The expert will ask about concerns, such as:
· Social interaction and communication challenges
· Sensory issues
· Repetitive behaviours
· Restricted interests
Information about the adult’s developmental history will help in making an accurate diagnosis, so an ASD evaluation may include talking with parents or other family members.
Getting a correct diagnosis of ASD as an adult can help a person understand past difficulties, identify his or her strengths, and obtain the right kind of help. Studies are now underway to determine the types of services and supports that are most helpful for improving the functioning and community integration of transition-age youth and adults with ASD.
Changes to the diagnosis of ASD
In 2013, a revised version of the Diagnostic and Statistical Manual of Mental Disorders (DSM) was released. This revision changed the way autism is classified and diagnosed. Using the previous version of the DSM, people could be diagnosed with one of several separate conditions:
· Autistic disorder
· Asperger’s’ syndrome
· Pervasive developmental disorder not otherwise specified (PDD-NOS)
In the current revised version of the DSM (the DSM-5), these separate conditions have been combined into one diagnosis called “autism spectrum disorder.” Using the DSM-5, for example, people who were previously diagnosed as having Asperger’s syndrome would now be diagnosed as having autism spectrum disorder. Although the “official” diagnosis of ASD has changed, there is nothing wrong with continuing to use terms such as Asperger’s syndrome to describe oneself or to identify with a peer group.
Getting an autism spectrum disorder diagnosis
The road to an ASD diagnosis can be difficult and time-consuming. In fact, it is often two to three years after the first symptoms of ASD are noticed before an official diagnosis is made. This is due in large part to concerns about labeling or incorrectly diagnosing the child. However, an ASD diagnosis can also be delayed if the doctor doesn’t take a parent’s concerns seriously or if the family isn’t referred to health care professionals who specialize in developmental disorders.
If you’re worried that your child has ASD, it’s important to seek out a clinical diagnosis. But don’t wait for that diagnosis to get your child into treatment. Early intervention during the preschool years will improve your child’s chances for overcoming his or her developmental delays. So look into treatment options and try not to worry if you’re still waiting on a definitive diagnosis. Putting a potential label on your kid’s problem is far less important than treating the symptoms.
In order to determine whether your child has autism spectrum disorder or another developmental condition, clinicians look carefully at the way your child interacts with others, communicates, and behaves. Diagnosis is based on the patterns of behaviour that are revealed.
If you are concerned that your child has autism spectrum disorder and developmental screening confirms the risk, ask your family doctor or pediatrician to refer you immediately to an autism specialist or team of specialists for a comprehensive evaluation. Since the diagnosis of autism spectrum disorder is complicated, it is essential that you meet with experts who have training and experience in this highly specialized area.
The team of specialists involved in diagnosing your child may include:
- Child psychologists
- Child psychiatrists
- Speech pathologists
- Developmental pediatricians
- Pediatric neurologists
- Physical therapists
- Special education teachers
Diagnosing Autism Spectrum Disorder is not a brief process. There is no single medical test that can diagnose it definitively; instead, in order to accurately pinpoint your child’s problem, multiple evaluations and tests may be necessary.
Getting evaluated for Autism Spectrum Disorder
Parent interview – In the first phase of the diagnostic evaluation, you will give your doctor background information about your child’s medical, developmental, and behavioural history. If you have been keeping a journal or taking notes on anything that’s concerned you, share that information. The doctor will also want to know about your family’s medical and mental health history.
Medical exam – The medical evaluation includes a general physical, a neurological exam, lab tests, and genetic testing. Your child will undergo this full screening to determine the cause of his or her developmental problems and to identify any co-existing conditions.
Hearing test – Since hearing problems can result in social and language delays, they need to be excluded before an Autism Spectrum Disorder can be diagnosed. Your child will undergo a formal audiological assessment where he or she is tested for any hearing impairments, as well as any other hearing issues or sound sensitivities that sometimes co-occur with autism.
Observation – Developmental specialists will observe your child in a variety of settings to look for unusual behaviour associated with the Autism Spectrum Disorder. They may watch your child playing or interacting with other people.
Lead screening – Because lead poisoning can cause autistic-like symptoms, the National Center for Environmental Health recommends that all children with developmental delays be screened for lead poisoning.
Depending on your child’s and symptoms and their severity, the diagnostic assessment may also include speech, intelligence, social, sensory processing, and motor skills testing. These tests can be helpful not only in diagnosing autism, but also for determining what type of treatment your child needs:
Speech and language evaluation – A speech pathologist will evaluate your child’s speech and communication abilities for signs of autism, as well as looking for any indicators of specific language impairments or disorders.
Cognitive testing – Your child may be given a standardized intelligence test or an informal cognitive assessment.
Adaptive functioning assessment – Your child may be evaluated for her/his ability to function, problem-solve, and adapt in real-life situations. This may include testing social, nonverbal, and verbal skills, as well as the ability to perform daily tasks such as dressing and feeding him or herself.
Sensory-motor evaluation – Since sensory integration dysfunction often co-occurs with autism, and can even be confused with it, a physical therapist or occupational therapist may assess your child’s fine motor, gross motor, and sensory processing skills.
The DSM is the official publication of the American Psychiatric Association which defines psychiatric and developmental disorders. While it has no legal status, the DSM does have an enormous impact on the way insurers, schools, and other service providers think about and treat autism.
Until 2013, the DSM described the autism spectrum as a disorder that included five distinct diagnoses. Asperger syndrome was, essentially, a synonym for “high functioning autism,” while autistic disorder meant almost the same thing as “severe autism.” People with PDD-NOS had some but not all of the symptoms of autism (but those symptoms could be either mild or severe). Rett syndrome and Fragile X syndrome, rare genetic disorders, were also considered to be part of the autism spectrum.
Then, in May 2013, the DSM-5 was published. The DSM-5, unlike the DSM-IV, defines autism as a single “spectrum disorder,” with a set of criteria describing symptoms in the areas of social communication, behaviour, flexibility, and sensory sensitivity. Anyone who had already been diagnosed with one of those disorders was “grandfathered” into the new autism spectrum disorder. A new diagnosis, social communication disorder, was created to classify people with very mild versions of autism-like symptoms.
Drugs and Medications for Autism Symptoms
Treatment for ASD should begin as soon as possible after diagnosis. Early treatment for ASD is important as proper care can reduce individuals’ difficulties while helping them learn new skills and make the most of their strengths.
You’ve read that there’s no known medical cure for autism, yet your doctor is prescribing medication. What’s that about? The answer is simple. Your doctor is not treating autism: he or she is treating specific symptoms of autism. Often, when symptoms are treated, people with autism are better able to learn, communicate, and generally connect with others.
Not everyone with an autism spectrum disorder has the same symptoms, and not all symptoms can be treated with pharmaceuticals. Most often, when drugs are prescribed for people with autism, they are intended to address specific symptoms including behavioural issues, anxiety, depression, obsessive-compulsive disorder, attentional issues, hyperactivity, and mood swings from issues such as bipolar disorder.
Selective serotonin reuptake inhibitors (SSRIs) are prescribed for anxiety, depression, and/or obsessive-compulsive disorder (OCD). Of these, only Prozac (fluoxetine) has been approved by the Food and Drug Administration (FDA) for both depression in children age 8 and older and OCD in children 7 and older.
Lexapro (escitalopram) is also approved for kids with depression that are age 12 or older. Three SSRIs that were approved for OCD are Luvox (fluvoxamine) for kids age 8 and older; Zoloft (sertraline) for children age 6 and older; and Anafranil (clomipramine) for kids age 10 and older. Wellbutrin is an antidepressant that works differently from the SSRI class of antidepressants and is not approved for pediatric use.
The FDA has issued an advisory to patients, families, and health professionals to closely monitor adults and children taking antidepressants for signs of suicide. This is especially important at the beginning of treatment or when doses are changed.
Many autistic children have significant behavioural problems. Some can be managed by non-pharmaceutical treatments such as applied behaviour analysis (ABA), Floortime therapy, etc. But when behaviours are out of control or dangerous, it may be time to consider antipsychotic medications. These work by reducing the activity of the neurotransmitter dopamine in the brain. There are two types of antipsychotics, including:
- Older antipsychotic medications such as haloperidol, thioridazine, fluphenazine, and chlorpromazine, may be effective in treating serious behavioural problems. But all, including haloperidol, can have serious side effects such as sedation, muscle stiffness, and abnormal movements, so these medications are only used if newer antipsychotics don’t do the job.
- Some of the newer “atypical” antipsychotics may be a better choice, particularly for children. One recent study showed that Risperdal (risperidone) and Abilify (aripiprazole) worked well to help control aggression and irritability in children. Both are FDA-approved to treat irritability in kids with autism; Risperdal is approved for children who are 5 or older, and Abilify is approved for kids 6 and up.
One in four people with autism spectrum disorder (ASD) also has a seizure disorder. Usually, they are treated with anticonvulsants such as Tegretol (carbamazepine), Lamictal (lamotrigine), Topamax (topiramate), or Depakote (valproic acid).
The level of the medication in the blood should be monitored carefully and adjusted so that the least amount possible is used to be effective. Although medication usually reduces the number of seizures, it cannot always eliminate them.
Stimulant medications such as Concerta (methylphenidate) and Strattera (atomoxetine) used safely and effectively in people with attention-deficit hyperactivity disorder (ADHD) have also been prescribed for children with autism. These medications may decrease impulsivity and hyperactivity in some children, especially those with higher functioning children.
Adderall (dextroamphetamine and amphetamine) is another stimulant that’s often used in the same way as Concerta or Strattera to help with attention, focus, and behaviour issues. Clorpres (clonidine), an antihypertensive, is sometimes prescribed for hyperactivity and impulsiveness as well.
All pharmaceuticals described in this article have the potential for side effects. Some, when prescribed for autism, are prescribed “off-label,” meaning that they’re prescribed for purposes other than that for which they were approved. Just remember that no pharmaceutical intervention comes without potential risks.
Because of the risk of any pharmaceutical intervention, it makes sense to use drugs only if and when symptoms are severe or uncontrollable by other means. Even then, it’s critically important that you consult a medical doctor with experience in autism and, if appropriate, pediatrics.
Be sure that you understand the potential side effects. Ask your doctor whether any of these side effects could be dangerous and be sure you know what to do if any problems arise. Make a follow-up appointment too so your doctor can assess the success of the treatment and recommend any changes to the dosage.
The wide range of issues facing people with ASD means that there is no single best treatment for ASD. Working closely with a doctor or health care professional is an important part of finding the right treatment program.
A doctor may use medication to treat some symptoms that are common with ASD. With medication, a person with ASD may have fewer problems with:
· Repetitive behaviour
· Attention problems
· Anxiety and depression
Read more about the latest news and information on medication warnings, patient medication guides, or newly approved medications at the Food and Drug Administration’s (FDA) website athttps://www.fda.gov/.
Pivotal response training (or treatment), also known as PRT, is a unique form of behavioural therapy for children with autism. It uses behavioural techniques in a natural setting to help children generalize new skills and apply them in the real world. PRT was developed by Drs. Robert and Lynn Koegel, and it offers a way to bring applied behavioural analysis (ABA) out of the therapist’s office and into the real world.
The Koegel Autism Center at The Gevirtz School at the University of California, Santa Barbara differentiates PRT from ABA in this way: “Rather than target individual behaviours one at a time, PRT targets pivotal areas of a child’s development, such as motivation, responsivity to multiple cues, self-management, and social initiations. By targeting these critical areas, PRT results in widespread, collateral improvements in other social, communicative, and behavioural areas that are not specifically targeted.”
In addition to targeting multiple areas of need at the same time, PRT also builds on a child’s interests—rather than working on activities selected entirely by the therapist.
The first person to experiment with and write about behaviourism from the psychological perspective was Pavlov, whose famous experiments with dogs showed that an animal (or person) could be taught to behave in a particular way through conditioning.
John Watson developed some of the principles of behaviourism and wrote in 1913 that the goal of it, in theory, is “the prediction and control of behaviour.” Watson is also quoted as saying, “Give me a dozen healthy infants, well-formed, and my own specified world to bring them up in and I’ll guarantee to take anyone at random and train him to become any type of specialist I might select—doctor, lawyer, artist, merchant-chief and, yes, even beggar-man and thief, regardless of his talents, penchants, tendencies, abilities, vocations, and race of his ancestors.”
While Watson first posited the theories behind behaviourism, it was B.F. Skinner who popularized behaviourism through his writings including the utopian novel “Walden Two” about a community built on behaviourist principles. It was Skinner who developed behavioural techniques called “operant conditioning” based on reinforcement and punishment. He also popularized behaviourism as a major focus of psychology during the middle of the 20th century.
Autism was not named as a distinct disorder until 1943 when Dr. Leo Kanner published a paper called “Autistic Disturbances of Affective Contact.”For decades, autism was thought of as a strictly behavioural disorder caused by environmental factors (mainly bad parenting). As a result, many of the treatments developed for autism were behavioural.
In 1987 Ivar Lovaas, a psychologist, wrote a paper entitled “Behavioural Treatment and Normal Educational and Intellectual Functioning in Young Autistic Children.” The paper reported on a study in which children with autism received 40 hours a week of intensive behavioural therapy for two to six years. Lovaas found that the vast majority of children in the study saw significant improvements in their behaviour. More impressive, perhaps, he also found that the children’s social and cognitive skills improved.
Lovaas became the “father” of applied behavioural therapy (ABA), a technique which quickly became the “gold standard” of autism therapy. Based on Lovaas’s ideas, most behavioural therapy for autistic children was (and often still is) provided in a clinician’s office in a one-on-one situation. After evaluating the child, a set of goals and milestones are created and the therapist works with the child to master each milestone.
When the child masters a skill, she is rewarded with a reinforcer (a reward). While ABA initially used aversive techniques (punishments) when a child failed to learn a skill, aversives are very rarely used today. This specific form of ABA—intensive, therapist-initiated, one-on-one therapy in an office setting—is sometimes called “discrete trials.”
While Lovaas-style ABA had and still has its supporters, the approach became less popular for several reasons.
- The intensive nature of Lovaas-style ABA is very expensive and makes it difficult for children with autism to participate in daily activities of life.
- While some children undergoing intensive ABA gained a wide range of skills, many had less impressive outcomes.
- Autistic self-advocates spoke up, describing Lovaas-style ABA (particularly but not exclusively with aversive methods) as disrespectful and, in some cases, emotionally damaging.
- Parents and other advocates began to question the value of teaching “appropriate” behaviours without helping children to understand or engage with the purpose behind those behaviours.
- New developmental treatments began to emerge, which focused on the idea that taught behaviours are less meaningful to an autistic child than emotional and social engagement.
ABA researchers and theorists began exploring new directions for behavioural therapy. Several highly regarded pioneers in the field were interested in merging child-led, developmental techniques with tried-and-true behavioural techniques. Their hope was to not only teach behaviours and skills but also to engage the autistic child emotionally and socially.
Cannabidiol, sometimes called CBD, is a chemical compound found in the cannabis plant. Since it does not include THC, the psychoactive component of cannabis, CBD does not induce a “high.” It can, however, help to reduce anxiety and lower stress levels—symptoms that are common among people with autism.
Currently, there is some evidence that CBD can help to alleviate specific symptoms and improve behaviour in children and adults on the autism spectrum, but research into the safety and efficacy of CBD is in its earliest stages.
CBD can be derived from hemp or cannabis (the marijuana plant) and is now legal in many states in the United States and in many countries around the world. It can be purchased without a prescription as an oil, tincture, pill, or chewable pill online and is also an ingredient in edibles ranging from coffee to pastries. It comes in many dosages and at many price points.
Claims for CBD range from the realistic to the absurd. Some websites and companies claim, for example, that CBD can cure cancer (it can’t). On the other hand, CBD does seem to alleviate some untractable symptoms of disorders such as epilepsy, sleeplessness, and anxiety—all common issues for people with autism. According to Harvard Health Publishing, “the strongest scientific evidence is for its effectiveness in treating some of the cruelest childhood epilepsy syndromes, such as Dravet syndrome and Lennox-Gastaut syndrome (LGS), which typically don’t respond to antiseizure medications.
In numerous studies, CBD was able to reduce the number of seizures, and in some cases it was able to stop them altogether. Recently the FDA approved the first-ever cannabis-derived medicine for these conditions, Epidiolex, which contains CBD. CBD is commonly used to address anxiety, and for patients who suffer through the misery of insomnia, studies suggest that CBD may help with both falling asleep and staying asleep.”
CBD is not helpful for everyone who uses it, and, in rare cases, it can cause side effects such as sleepiness or nausea.
Neither CBD nor any other drug can remove or cure core symptoms of autism, which include social communication challenges, sensory dysfunction, and restricted, repetitive behaviours. CBD can, however, help to alleviate disorders often associated with autism such as epilepsy, anxiety, sleeplessness, and stress.
By relieving the associated disorders, CBD may help reduce some of the most problematic aspects of autism.
For example, it may cause better sleep and lower anxiety (which can reduce aggressive behaviours), fewer seizures (which can lessen stress and make it easier to interact socially), and lower anxiety to make it easier to learn and use social communication skills.
It’s also important to note that sleeplessness and aggression are particularly difficult symptoms for parents, who can quickly find themselves exhausted and overwhelmed. Aggression, in particular, is one of the most challenging behaviours common to autism—often times, this is a reason a parent may place their child with autism in an institutional setting.
A few full-scale studies have explored the impact of CBD on children with autism—none, however, have explored its impact on adults on the spectrum. One of the largest such studies took place in Israel. The report includes the following finding:
“In 2014, The Ministry of Health began providing licenses for the treatment of children with epilepsy. After seeing the results of cannabis treatment on symptoms like anxiety, aggression, panic, tantrums and self-injurious behaviour, in children with epilepsy, parents of severely autistic children turned to medical cannabis for relief.”
The results of the study were encouraging. Most of the children involved saw improvement in anxiety, anger, and hyperactivity.
In addition (and perhaps as a result), they also saw significant improvements in social communication, sleep, and self-injury (a small percentage, however, worsened with treatment). A tremendous bonus is the fact that there were few side effects, and those that did appear (sleepiness and change in appetite) were mild.
Additional studies have provided similar results: CBD has proved to be helpful in a majority of cases in lessening emotional and behavioural issues and can even help to improve social communication skills. These preliminary findings, along with the low incidence of significant side effects, are very encouraging. Studies are ongoing in clinics and research centers around the world.
Given all of the positive findings for CBD and the low risk associated with it, it may make sense to try using it with your child with autism (or trying it yourself if you are an adult with autism). Before buying a bottle of CBD oil, however, it’s important to follow these steps:
- Check with your child’s (or your) doctor to be sure that no allergies or sensitivities exist that could cause a reaction to CBD.
- Check to be sure that CBD is legal in your state, province, or country.
- Research sources of CBD to be sure the brand you’re using is well-regarded and properly licensed.
- Take careful notes to be sure you have baseline information about your child’s (or your own) behaviours and symptoms so that you can make a useful comparison before and after using CBD.
CBD comes in many forms and at many dosage levels. Oils taste somewhat bitter, which is why many people prefer chewable candy-like options; of course, it’s important to keep candy-like drugs and supplements out of the reach of children.
In general, it’s best to start with a lower dosage. In fact, studies of CBD for other disorders such as migraine suggest that a lower dose may be more effective.
Lower doses are also more easily tolerated than a higher dose.
When you start using any new supplement, drug, or treatment, it’s important to be sure your child’s doctor is aware of the new treatment and has no concerns about it relative to your child’s health as well as let everyone working with your child know that you’ve started something new and ask them to look for and report any changes in behaviours or skills.
Take careful notes of any changes you see yourself so you can easily review your records to determine how helpful the new treatment really is and keep an eye open for any troubling side effects. Be sure to communicate any side effects to a doctor or healthcare professional immediately.
A Word From Verywell
Children with autism grow and learn every day, simply because they are maturing. As a result, there is no simple way to determine whether a change in behaviour or an increase in skills is due to a particular treatment or to ordinary maturation. This reality makes it very easy to see a change in behaviours and inaccurately attribute them to the newest treatment you’ve tried. By far, the best way to know whether a particular treatment is truly effective is to be rigorous about evaluating your child before and after its use.
To do this, you’ll need to create or find and use a numerical scale (1 to 5 for instance) to measure your child’s behaviour. For example, is today’s angry outburst at a level 8 or a level 3? By carefully evaluating the impact of a new therapy, you can eliminate the likelihood that you’ll make decisions based on wishful thinking rather than on solid evidence.
Starting Your Autistic Child on a Gluten and Casein Free Diet
While mainstream medical practitioners rarely recommend special diets for autism, many parents will hear of the success of such diets through websites, books, friends, and conferences. The science around such diets is sketchy, but there are plenty of anecdotal stories of special diets having a profound and positive impact on children with autism.
The gluten (wheat) free, casein (dairy) free diet is the most popular of the specialized diets, and there is evidence that the diet is often helpful in lessening autistic symptoms such as impulsive behaviours, lack of focus, and even speech problems. But wheat and dairy are a part of almost everything we serve in the United States, and keeping a child away from ice cream, pizza, milk, and most snack foods and cereals is no small task.
So, what does it take to start a gluten-free, casein-free (GFCF) diet?
Removing gluten and casein from a child’s diet is not as simple as saying goodbye to milk and bread. According to Carol Ann Brannon, a nutritionist who specializes in diets for children with autism, gluten is not only ubiquitous but may also find its way into your child’s system through the skin:
“Gluten is found in wheat, rye, barley, oats, spelt, and any derivatives of these grains, including, but not limited to malt grain-starches, malt wash, hydrolyzed vegetable/plant proteins, grain vinegar, soy sauce, and natural flavorings. Casein is found in milk and milk products from mammals. Gluten is in even in Play-Doh, adhesive on stamps and stickers, and many hygiene products. Soy, another common food allergen, is in many foods and hand lotions, make-up, etc.”
According to Brannon, there are two ways to start a GFCF diet: “dive in head first” or the slower, “get your feet wet” approach.
The “dive in head first” parents prefer to go GFCF all at once and decide to place the entire family on the diet. Often, siblings and parents may also experience benefits from the diet. The “get your feet wet” parents opt to go gluten-free first, and then progress to excluding casein-containing foods and beverages.
An increasing number of GF foods are available due to the increase in celiac disease. A parent should select the approach that best suits their personality and their lifestyle. Many parents begin the diet with dread and fear, but soon find it is more manageable than they had imagined. GFCF diet support groups can be a tremendous help to parents. In addition, there are many websites and blogs for parents.
In general, says Brannon, “Children can eat a wide variety of meat, chicken, eggs, fruits, and vegetables—anything that does not contain wheat gluten or casein. It is generally recommended that organic, whole GFCF foods be consumed whenever possible.”
GFCF advocates caution that even a little bit of wheat or dairy could have a big impact on a child with autism. To avoid accidentally eating the wrong foods, it’s important to read labels carefully—wheat and dairy are often “hidden” ingredients in packaged products. It’s also very important to inform teachers, therapists, and other adults in your child’s life that he is now wheat and dairy free.
Can gluten or casein (wheat or dairy) actually cause autism? Books and websites galore recommend that people with autism eliminate wheat and dairy from their diets. Some therapists, parents, doctors, and writers swear they know a child who, as a result of this diet, has completely “recovered” from autism, and the child no longer qualifies for an autism spectrumlabel. Mainstream doctors and researchers, however, tend to be skeptical about claims of “cures” as a result of a dietary change.
Could wheat and dairy actually be the culprits for at least some cases of autism?
A popular theory follows this logic:
- Wheat gluten and casein contain proteins which break down into molecules that resemble opium-like drugs.
- Children with autism have compromised digestive systems, including “leaky gut.” Leaky gut syndrome is a somewhat controversial diagnosis; in essence, it means that a person’s intestines are unusually permeable, allowing extra-large molecules (such as proteins) to leave the intestines. Thus, instead of simply excreting these large opium-like molecules, autistic children absorb the molecules into their bloodstreams.
- The molecules travel to the brain, where they induce a state similar to that of a drug-induced “high.”
- When wheat and casein are removed from the diet, the child no longer experiences the high, and his or her behaviours and abilities radically improve.
A corollary to this theory states that when a child’s preferred diet is mostly items containing wheat and dairy (pizza, crackers, milk, ice cream, yogurt, sandwiches, in short, what we often think of as “kid food”), that proves that the child is addicted to the opiate-like molecules and would benefit from the GFCF diet.
It’s not easy to track down evidence for each element of the opiate theory. Here, however, is the information I’ve been able to glean so far:
- Wheat and dairy do in fact break down into peptides which, in fact, look a lot like opium-like drugs. These are called gluteomorphines and casomorphins.
- Some children with autism (though by no means all) do have gastrointestinal issues. A subgroup of these children has leaky intestines.
- Some studies show that the peptides in question are found in unusually high amounts in the urine of autistic children, but those studies included only children with existing gastrointestinal issues. A study that included a broader group of autistic children did not show an increased level of peptides in the urine.
- There have been studies showing that the brains of rats injected with casomorphins are activated in areas affected by autism (though there are still big questions about which areas of the brain really are affected by autism, which makes me question the outcome of that particular study).
- I could not find any evidence to show that gluteomorphines and casomorphines actually cause autistic-like behaviours. Several studies have looked at the impact of Naltrexone (not approved in the U.S.) – a drug which blocks the impact of gluteomporphines and casomorphines on the brain. The researchers found that there was little support for the idea that Naltrexone is effective in treating symptoms of autism.
- Many studies have shown that a GFCF diet is effective in treating symptoms of autism, though quite a few equally credible studies seem to show otherwise.
To verify my own research, I checked in with Dr. Cynthia Molloy, M.D., Assistant Professor of Pediatrics at the Center for Epidemiology and Biostatistics Cincinnati Children’s Hospital Medical Center. Here is her response:
- The dietary proteins could reasonably have an impact on GI issues, but even that has not been clearly demonstrated. There is no empiric evidence to support a causative relationship between these proteins and autism. It is conjecture to draw the conclusion that a child is experiencing an opiate effect from foods because he craves them.
Weighing all of this evidence, it is my opinion that the opiate theory of autism holds very little water, though the GFCF diet itself may hold some promise.
GFCF diets are difficult and expensive to administer. They require a lot of dedication and knowledge, and most professionals suggest that the diet is implemented over at least three months. Given all of this, it’s possible that parents who desperately want to see improvement could report improvement that may or may not actually be present. In addition, many children do gain new skills over the course of three months, with or without special diets.
But there’s more to the story that just wishful thinking. Allergies to glutenand casein are not uncommon, and those allergies often manifest themselves in diarrhea, constipation, bloating and other symptoms. About 19 to 20 percent of autistic children seem to have significant gastrointestinal issues.
If these issues are caused by gluten and/or casein, then they would certainly be significantly improved by the diet. By removing a source of constant discomfort and anxiety, parents may well be opening the door to improved behaviours, better focus, and even lowered anxiety.
Autism isn’t like most disorders: there is no single known cause, no therapy that is effective for everyone, and no known cure. That puts you, the caregiver, in the driver’s seat.
No practitioner can tell you that any specific path is the absolute right direction for your child—which also makes your situation much more complicated because you can’t simply look for the “best” treatment and insist that your child should receive it. With this in mind, it’s important to remember some key facts about autism treatments.
- While early intervention (treatment before school age) is a very good idea, there is no specific time period that you could potentially “miss out on” for treating autism. People with autism gain skills and abilities throughout their lives.
- If a therapist makes a great connection with your child, your child will probably make progress.
- If your child is autistic, he won’t become more autistic as a result of the wrong therapy. On the other hand, children with autism have amazing memories, so a bad experience can have lasting implications for cooperation and engagement.
- They do not, however, have an obligation to provide the therapies you prefer or to ensure that your child works only with people you’ve approved.
- This means that you can learn to provide the therapies yourself in your own home.
- Though, some medications can help alleviate symptoms such as anxiety and aggression. Similarly, while dietary changes can help alleviate painful gastrointestinal issues, they will not have an impact on the core symptoms of autism.
- Unfortunately, many people take advantage of others in exchange for unproven, painful, and/or potentially dangerous “autism treatments.” If it sounds too good to be true it probably is—investigate very thoroughly before saying yes to a treatment that isn’t recommended by a trustworthy professional.
Perhaps most importantly, your child with autism can and will grow and progress just like any other child—and in many cases with or without any given therapy. The fact that your child is gaining skills may or may not be attributable to a particular therapy. It’s up to you to determine what’s working and what isn’t.
There is a saying that “autism is a marathon, not a sprint.” It’s a good saying to bear in mind as you take your first steps along the road with your child. It’s very tempting to try everything as soon as possible and to say “yes” to every opportunity, but the reality is that you can quickly overwhelm both your child and yourself. By planning your route and taking a deliberate path, you can help your child now and for the future.
Behavioural, psychological, and educational therapy
People with ASD may be referred to doctors who specialize in providing behavioural, psychological, educational, or skill-building interventions. These programs are typically highly structured and intensive and may involve parents, siblings, and other family members. Programs may help people with ASD:
· Learn life-skills necessary to live independently
· Reduce challenging behaviours
· Increase or build upon strengths
· Learn social, communication, and language skills
What Is the Best Treatment for Autism?
There are many treatments for autism, but there is no cure. There is no single treatment that can alleviate the core symptoms of autism either. However, there are therapies and medications that can have a significant positive impact on children and adults on the autism spectrum—as well as therapies and medications that can actually cause harm.
For most families, choosing the best therapies is a process of trial and error, with final decisions depending on a variety of factors such as availability, cost, and the abilities, challenges, and interests of the person on the autism spectrum.
In general, children with autism are best served by therapies that:
- start as early as possible
- are provided intensively (for multiple hours per week)
- are based on research
- have clear goals and milestones
- are provided by a qualified therapist who connects well with your child (and with the parent)
- engage a child in a positive way (your child should enjoy therapy)
- address the core symptoms of autism: social skills, sensory dysfunction, emotional regulation, verbal and non-verbal communication, physical challenges, play skills, attentional issues, mood issues, or focus
There are plenty of options available, and many therapies that can work well for any given child.
Autism therapies, when paid for out of pocket, can be prohibitively expensive. Top-notch therapists can charge $60 to $100 an hour (in some cases even more), and many therapies are most effective when provided for many hours a week. For many families, the “best” autism therapies are those that are both available and free or low-cost.
While there are dozens of autism therapies, only a few are provided through schools or paid for through medical insurance. While these are not necessarily the only effective therapies they are, for obvious reasons, the most popular. If you’re low on funds, these therapies can be the best available. Often, in combination with other treatment types, they can be quite effective.
Many people with autism take medications that reduce anxiety, increase focus, or manage aggression. These medications, generally prescribed by physicians, can be a cost-effective means of managing difficult symptoms. In some cases, medication isn’t necessary, but when it is helpful, it can make a world of positive difference for a child on the autism spectrum.
Be sure to work closely with your healthcare provider or doctor to monitor the effects of the medications, however. With all types of treatment (including medications), what works well for one person on the spectrum may not work well—or may even be harmful—for another person.
Speech therapists address a range of issues for autistic children. They help people who begin speaking later than average to acquire spoken words. In addition, they also help higher functioning children to ask and answer questions, use appropriate prosody and body language, and, for more advanced learners, recognize jokes, sarcasm, teasing, and friendly “joshing.”
Occupational therapists for children with autism are usually provided through the school and/or paid for through insurance. Today’s occupational therapists help children with a variety of developmental challenges. Many have a wide range of skills and training that allow them to work on sensory challenges, interactive play skills, cooperative interaction, and much more.
Physical Therapy (PT)
PT is usually prescribed by a medical doctor. As a result, it is usually paid for by health insurance and/or provided through the school. At first glance, it may not seem obvious why a child with autism would need physical therapy—but the reality is that most autistic people have low muscle tone and compromised motor skills and coordination.
PTs can also work with children in a natural environment such as a playground or gym, helping them to build the skills they need to join in physical games.
Applied Behavioural Analysis (ABA) and related therapies are usually considered to be the “gold standard” of autism-specific treatment. Many districts offer ABA classrooms or provide ABA therapists as part of a special needs school program. ABA can teach skills and behaviours that are critically important to success in a typical school or work environment.
For some high functioning children with autism, a psychologist with autism experience can help sort out feelings, suggest techniques for handling frustrations, or otherwise help a child cope with the reality of being different.
Your child is receiving therapies through school and/or health insurance, but you feel she’s not progressing at a reasonable rate. Or, you’ve watched the school therapists at work and feel that their approach is not right for your child. You may have even asked the school for specific therapies and they haven’t been helpful in providing outside resources.
If any or all of these issues sound familiar, you may want to consider paying out-of-pocket for therapies that can be helpful depending on your child’s interests and learning style.
While behavioural therapies work on skills and behaviours, developmental therapies can help your child build emotional skills and relationships, expand abstract thinking, and bond with others. Some of the best-regarded developmental therapies including Floortime, Relationship Development Intervention (RDI), and Social-Communication, Emotional Regulation, and Transactional Support (SCERTS).
Parents will have to pay for these therapies out of pocket at first, but the good news is that most parents will be able to provide the therapies themselves once they get the hang of how they work.
Social Skills Therapy
While some schools offer rudimentary social skills therapy, it’s a rare school that provides in-depth social thinking programs. Social thinking is tough for autistic children because it requires “theory of mind,” or the ability to imagine what another person might be thinking or feeling.
There are many different social skills and social thinking programs available; it’s worth your while to explore them before making a selection. The right social skills group can help your child make connections, build friendships, and find a social circle.
If your child is interested in music, visual arts, acting, or dancing, she may respond well to arts therapies. While you will have to pay out of pocket, you may find that arts therapies help your child to expand his boundaries and even build skills that can be used in settings such as band, drama club, or chorus.
From hippotherapy (therapeutic horseback riding) to support animals and service dogs, animal therapy has been found to have a significant positive impact on children with autism. Animal therapy can help children build confidence, expand their social skills, and even increase core body strength. Some animal therapies are paid for by some insurance policies but expect to pay some amount out of pocket.
In some cases, children with autism do have intolerances to certain foods. In other cases, they are such picky eaters that they lack essential vitamins and minerals in their diets. It may be worth consulting your pediatrician to check into any diet-related challenges that may be impacting your child’s physical comfort or mental state.
Since there is no known cause or cure for autism, there are many so-called “treatments” or “cures” out there that may sound like they will be effective—but in reality, some of these are hoaxes that can be useless or even risky. Many such treatments are built around debunked or unproven theories about the cause of autism.
Some popular theories include the idea that autism is caused by vaccines, by poor diet, by a lack of a particular nutrient, by pathogens or parasites in the gut, and more. The outcome of using these therapies or treatments can be devastating, both physically and financially.
Chelation (using drugs to remove heavy metals from the body) was developed to treat certain types of toxicity such as lead and mercury poisoning. Some parents use chelating drugs to treat their children with autism based on the belief that their autism is a result of heavy metal poisoning. Chelating drugs are potent and can be risky, especially if used improperly. They are also useless for improving the symptoms of autism.
MMS is a chemical compound that contains some of the same chemicals as bleach. This so-called “miracle cure” actually has no research to back its claims to cure any physical or mental conditions. It was popularized by various testimonials of participants, but due to the fact that it contains a type of bleach, this is really a potentially lethal substance to use.
Detoxifying clay baths are supposed to draw toxins out of autistic children, thus curing of them of the disorder. Although less risky and less costly than other ineffective therapies, clay baths will simply make your child’s skin a bit smoother. They will have no impact on all on his autism.
In addition to these particularly popular methods of targeting people with autism or people who have a loved one with autism to spend their money on ineffective treatments, there are dozens of similarly pricey, useless, and potentially risky products available on the market.
A few further examples include hyperbaric oxygen chambers, stem cell therapy, raw camel milk, and homeopathic medicines. While some of these are more expensive and riskier than others, all are based on flawed ideas about what causes or treats the symptoms of autism.
As you start to research treatments, you will find many types of behavioural and developmental therapy, social skills training, and so forth. Many of these are legitimate therapies that are based on research but include unique elements developed by individual therapists or groups. A few examples include:
- a form of behavioural therapy that is used in natural settings and incorporates some developmental elements
- a tool created to support social skills training programs
- a curriculum created by a well-regarded therapist to work on specific challenges facing autistic children in social settings.
All of these, and many others (the Denver Model, SCERTS, and more) are worth exploring if you have the interest and money to do so and feel that the particular approach may be appropriate for your child.
Pivotal Response Training is solidly based in behaviourism but borrows from developmental theory. As a result, it is both similar to and different from “classic” ABA.
Like ABA, PRT focuses on behavioural as opposed to emotional growth. Unlike ABA, however, PRT focuses not on individual behaviours (labeling an object, for example) but on “pivotal” areas of child development. This approach makes it possible to improve social, communicative, behavioural, and cognitive skills all at the same time. There are four pivotal areas. They include:
- Response to multiple cues
- Initiation of social interactions
Like ABA, PRT therapists use “reinforcement” (rewards) to motivate children with autism to learn new skills. Unlike ABA therapists, however, who may give candy or toys as motivators, PRT therapists use “natural reinforcement” to encourage compliance.
In other words, while an ABA therapist may reward a child with a candy treat for putting on his coat when asked to do so, the PRT therapist would be more likely to take the child outside to play. Putting on the coat leads naturally to the opportunity to play outside.
Like ABA, PRT therapists use multiple trials that start with a prompt (antecedent) to do the desired behaviour (for example, the therapist tells the person with autism to put on the coat). Unlike ABA, PRT therapists reward not only success but also good attempts at success (starting to put on the coat or putting it on incorrectly). The theory is that rewards for “good tries” increase a child’s motivation to keep trying, even when the work is difficult.
PRT starts with an evaluation to determine a child’s challenges and strengths in the pivotal areas of motivation, response to multiple cues, self-management, and initiation of social interactions.
The PRT therapist will set appropriate goals for the child, and will likely recommend a particular number of hours of therapy per week (25 hours is typical).
The basic structure of PRT is similar to that of ABA: a set of repeated behavioural trials consisting of antecedent, behaviour, and consequence. Because the setting is natural, the motivators are selected by the child, and any attempt at compliance is rewarded. This makes the experience generally much more fun for a child than typical ABA.
A child who is having fun is, of course, is more likely to engage, learn, and connect socially to the people around him.
PRT sessions can occur in almost any setting but are usually most effective in situations that include multiple peers and opportunities for building and exercising new skills. PRT methods can be taught to parents, siblings, and other supportive individuals in an autistic child’s circle, making it possible to integrate the approach across all aspects of daily life.
Many studies have found PRT to be effective at various levels. In other words, some children make great strides using PRT while others have only moderate improvements. The reality is that no autism treatment leads to a “cure,” but studies suggest that PRT can help your child to gain new skills.
One randomized study, for example, found that “specific instruction in PRT results in greater skill acquisition for both parents and children, especially in functional and adaptive communication skills.”
Another found that “The results indicated that verbal communication improved as a consequence of the intervention, with concomitant improvements in untreated areas for all participants. Following the intervention, symptoms of autism decreased and parents reported satisfaction with the program’s ease of implementation and observed child gains.”
As with most autism therapies, the likelihood and extent of improvement depend on a number of factors which really don’t relate to the specific therapy. Some key factors include:
- the quality of the evaluator and therapist
- the number of hours of therapy per day or week
- the ability of a child’s school and family to adopt the therapeutic principles and use them outside of therapy sessions
- the child’s level of motivation and engagement
- the child’s strengths and challenges (children who start out with stronger skills are more likely to build skills, no matter what therapy is used)
While classic ABA therapy is available almost everywhere, PRT therapy can be harder to find. That’s because PRT was developed recently, and training programs are still expanding. There are several options for finding PRT therapists or therapy.
- Check with your local pediatrician, neurologist, autism clinic, or psychologist; often they can refer you to a local resource.
- PRT training on-site is only available in California at the Koegel Autism Center, but the Koegel Center does offer options for parents including manuals, books, videos, and (in some cases) online parent training.
- Use a search engine to search for PRT therapy in your area.
- Ask local parent support groups whether they can suggest resources in your area.
In addition to accessing private PRT therapy (which may or may not be funded through your healthcare provider), it’s also worthwhile talking with your child’s school team. Some schools are willing and able to implement PRT during the school day as part of your child’s “Free and Appropriate Education.”
Before diving into any type of autism treatment, always do basic research to be sure the approach is built on a real understanding of autism, is supported by legitimate research and is provided by well-regarded therapists. If you are unsure, ask your pediatrician or a therapist whose judgment you trust—solely relying on other parents or in-person or online personal testimonials for medical information can lead to poor decisions.
How do you communicate with a person who has no ability to talk or use sign language? Many people with autism communicate using picture cards. Whether cut from magazines, printed out from CDs, or purchased as a set, picture cards offer autistic individuals the ability to communicate needs, desires, and even ideas without the need for spoken language.
Since many people on the autism spectrum tend to learn visually, it makes good sense to start communicating with images. Just as important, images are a universal means of communication and they are just as understandable by strangers or young peers as by parents or therapists.
Recreational therapy is the process by which children and adults with autism can learn about, participate in, and even excel in activities that they actively enjoy—while building social, physical, and cognitive skills in community settings.
According to the National Council for Therapeutic Recreation Certification, “The purpose of the RT process is to improve or maintain physical, cognitive, social, emotional and spiritual functioning in order to facilitate full participation in life.”
In addition, the Council states, “Recreational therapists treat and help maintain the physical, mental, and emotional well-being of their clients by seeking to reduce depression, stress, and anxiety, recover basic motor functioning and reasoning abilities, build confidence, and socialize effectively.”
Verywell / JR Bee
Children on the spectrum may be in various therapies for hours every day. In fact, most children with autism receive speech, occupational, and behavioural therapy in school. Many are also in social skills therapy groups and may participate in other therapeutic programs such as floortime play therapy or relationship development intervention (RDI). On top of all this, they may also visit a psychiatrist or psychologist, go through evaluations with developmental pediatricians, or see a developmental neurologist.
With so many types of therapy already on their schedules, why add yet another form of therapy to the list? Dr. Rhea Fernandes, Senior Vice President and Chief Operating Officer at Devereux Advanced Behavioural Health explains:
“Recreation is about engaging in activities and experiences which produce feelings of enjoyment and satisfaction; it connects us with opportunities to experience our own creativity and to achieve and master new skills and to build meaningful relationships with others in doing so. It’s needed as part of the human condition: we all value recreation; it’s part of being human.”
Recreation therapy is also a very useful tool during the transition between childhood and adulthood.
Through recreation therapy, young adults can begin to discover their own recreational interests, strengths, and preferences. Recreation therapists can also suggest resources, provide support, and serve as liaisons to help young adults on the spectrum to find appropriate programs and/or integrate into community opportunities.
Says Dr. Fernandes, “Recreation therapy can help with the process of crystallizing an individual’s leisure identity, developing a sense of self and self-efficacy, improving pro-social adaptive skills, and gaining mastery over one’s own environment.”
According to Dr. Fernandes, “A good working definition of recreational therapy would be activities that utilize various modes of expression from the arts and performing arts to physical activity that help to stimulate overall health and well being of people with special needs. It includes art therapy, drama therapy, aquatics, equine therapy—all are special activities that fall under the larger umbrella of recreational therapy.” These activities are meant to work toward relationship-building.
Recreational therapy sessions are goal-oriented, but unlike more traditional techniques such as physical therapy (often recommended for children on the spectrum), they work toward a wide range of physical, social, and emotional goals in settings where clients can pursue their interests and strengths.
Where It Takes Place
Settings can range from hospitals or day programs to community locations such as swimming pools, gyms, art centers, skating rinks, theaters, or YMCAs. Depending on the needs and abilities of the client, recreational therapy may be provided 1:1, in the context of special needs programs, or as part of an inclusive community program.
The Steps of Therapy
As with most forms of therapy for children with autism, recreational therapists go through a series of steps:
In order to develop a program that will effectively meet a person’s needs, a recreational therapist will observe the individual in one or more settings and conduct evaluations to determine the individual’s recreational interests, strengths, and challenges as well as strengths and challenges that could potentially be improved or remediated through therapy.
The only way to determine whether a particular therapy is effective is to know where they started and where they’re headed. A recreational therapist will focus on specific skills and record the individual’s current status and measurable goals. A goal might, for example, relate to the ability to kick a ball, cheer on a teammate, manage frustration, or stay focused on an activity for a period of time.
In some cases, recreational therapists work directly with clients; in other cases, they formulate plans to integrate the recreation into an individual’s program and support others as they execute the plan. A recreation therapist might work with a physical or occupational therapist, a community-based instructor, a parent, or a teacher to provide the tools for integrating the recreation into an individual’s daily life.
Credentialed recreation therapists are known as Certified Therapeutic Recreation Specialists (CTRS). To become a CTRS, an individual must earn a bachelor’s degree, go through a clinical internship, and pass a national competency exam overseen by the National Council for Therapeutic Recreation Certification (NCTRC). In addition, some states require licensing. Recreation therapy, however, is still a small field—there are only about 19,000 practicing recreation therapists in the United States.
While it may be tricky to find a credentialed recreation specialist in your area, other types of therapists may be able to fill the same niche.
For example, a credentialed art, music, or drama therapist may be able to provide recreation therapy even without the official NCTRC seal of approval. The same is true for occupational or physical therapists who may support individuals in activities ranging from swimming and horseback riding to team sports.
If you do pursue this route, though, take time to interview the therapist in-depth to be sure that they are working on a wide range of physical, emotional, and intellectual skills rather than sticking entirely with physical competencies such as “throw a ball underhand,” and similar tasks.
It’s helpful to know that, in many cases, insurance or school districts will pay the costs associated with physical, occupational, and social skills therapy but may not pay for someone with the title of “recreation therapist.” In fact, in most cases, recreation therapists are hired not by individual families but by organizations and institutions.
For many families, formal recreation therapy is either locally unavailable or financially impractical. When that’s the case, there are other options for helping a child, teen, or adult with autism to develop recreational interests and skills. Here are just a few ideas to consider:
- Work with your child’s in-school therapists to select appropriate activities and pinpoint community resources.
- Check in with local autism support groups—in some cases, other parents know of programs and resources, or you may find others interested in starting up recreational opportunities.
- Drop in at your local YMCA to see what kinds of programs and supports they may be able to offer.
- Make good use of programs such as Special Olympics and Challenger Club, which support individuals with special needs including autism as they build physical and social skills as well as relationships.
Once you learn your child has an autism spectrum diagnosis, you want to do whatever you can to help. In many cases, you’ll learn about early intervention programs and therapies that you can access for little to no money through your school district, county, or state. If you start digging even a little bit, you’ll learn about a huge range of additional therapies available (most for a significant fee) which might or might not be safe, helpful, or appropriate for your child.
While any or all of the available therapies and treatments may sound promising, the reality is that every child with autism is different. Some will thrive with treatment A, B, or C while others will improve only slightly—and still, others will see no improvement at all. What’s more, while some treatments are well-researched, others are marginal or even questionable in terms of effectiveness and safety.
It can be very difficult to choose among treatments, and even harder to know which are the most effective for your particular child. There are, however, methods for making the smartest possible choices.
Within the autism community, the term PECS (usually pronounced “pex”) has become synonymous with picture cards of any type. And, just as “kleenex” has come to mean the same thing as “tissue,” PECS has lost much of its brand association. But PECS is actually a trademarked program of Pyramid Educational Products, a small corporation founded in the 1980s by Lori Frost and Andrew Bondy.
Pyramid Products does produce a fair number of picture cards, though they’re by no means the largest collection of images available. They also produce velcro-lined books designed to hold velcro-backed pictures; but, again, these are not the most attractive or comprehensive picture card products on the market.
Much more significant to the PECS philosophy is not the specific picture cards or their holders, but rather the process by which non-verbal children (and adults) are taught to use these cards. Over time, claim the makers of PECS (and their claims are backed by experience and research), children who use PECS build independent communication skills. At the same time, apparently as a by-product, many children also gain significant spoken language.
If you choose to use PECS (as opposed to just offering picture cards as a tool for communication) you must be trained through Pyramid Products. Their training program prepares you to work with a learner through six phases:
- In Phase one, the trainer (that’s you) works with the learner and their caregivers to figure out what might be most motivating to that individual learner (a ball, toy, food, etc.). Cards have created that picture that motivating item and a pair of trainers helps the learner discover that, by handing over the card, they can get the desired object.
- In Phase two, the trainer moves farther away from the learner, so that the learner must actually come over to the trainer and hand over the card. This is a life skill lesson in seeking and obtaining another person’s attention.
- Phase three requires the learner to discriminate among multiple pictures when requesting an item. For some learners this is easy, for others, it’s tougher. Some learners learn best with photos, and others with graphic images that approximate the appearance of an object.
- Phase four starts learners in the process of building sentences through “sentence strips.” Instead of a single picture, they may drop an “I want” starter on the strip to create the sentence: “I want a ball.”
- Phase five challenges learners to build questions using sentence strips, starters, and pictures.
- In Phase six, learners are taught to comment on the world around them by responding to questions such as “what do you hear?” “what do you see?” They learn to use descriptors (“the big green ball”) and more complex pictorial language.
This learning process may take weeks, months, or years to complete. Throughout, learners are encouraged to use PECS in various different settings and with different partners.
Picture-based communication is very nearly free. All you need is a magazine full of pictures, a pair of scissors, a looseleaf notebook and some velcro. PECS, on the other hand, can be quite pricey: several hundred dollars for the initial training, hundreds more for ongoing consultations, and so forth. Is it worth it?
According to Pyramid Products, the difference between the PECS approach and simple picture-based communication is considerable. Most importantly, the difference lies in providing the learner with the tools to communicate spontaneously and independently. In addition to simply making communication smoother, the process can also:
- Decrease negative behaviours that were caused by frustrations;
- Increase availability for learning and interaction;
- Increase relatedness and emotional closeness;
- Build spoken language skills (this is not a direct outcome of PECS, but seems to occur as PECS skills increase).
In the United States, once a child is diagnosed with autism spectrum disorder, he or she is eligible for a range of services funded by the state. These range in cost and quality depending on location. Insurance policies will also pay for certain treatments, again depending on the specific policy.
In general, your child will probably be offered at least some (if not all) of the following therapies, either through the school district or through an early intervention program:
- All children with autism, even those with spoken language, can use help with verbal and non-verbal communication.
- Some therapists use a form of play therapy to work on social communication and sensory issues, while others work on more academic skills such as pencil grasp and cutting with scissors.
- Applied Behavioural Therapy (ABA) is by far the most common form of autism-specific therapy provided in a school setting. ABA therapists reward appropriate behaviours, thus building specific skills ranging from sitting still in a classroom to interacting socially with classmates. There are many different forms of behavioural therapy, but ABA is the most common.
- Depending on circumstances, your child may also be offered any of a range of fairly common therapies such as physical therapy, social skills therapy, play therapy, feeding therapy, cognitive behavioural therapy, and more. While some are provided through the schools, others may (or may not) be paid for by your insurance.
Very young children may receive these therapies at home—school-age children receive therapies at school.
In addition to the many therapies your child may be offered through various agencies and policies, you will also discover additional therapies that you can provide yourself or pay for out of pocket. These include:
- developmental therapies such as Floortime, RDI, and Son-Rise
- art therapies including music, art, dance, and drama
- “biomedical” therapies ranging from hyperbaric chambers to stem cell therapy
It is very easy for an autistic child to wind up receiving three or four different types of therapy per week, with additional new therapies tossed in from time to time to see whether they might be helpful. For example, a child receiving speech, occupational, and behavioural therapies at school may also be offered medication by a developmental pediatrician while her parents also experiment with a gluten-free diet.
When your child is receiving so many therapies, and she suddenly seems to be developing new skills at a rapid pace, which therapy is making all the difference? Often it’s tempting to assume that the most recently introduced therapy is the most effective. After all, the new skills blossomed just days after the new therapy was started.
The reality, however, is that association is not the same thing as causation. In other words, the fact that one thing happened after another does not mean that the first thing caused the second. Under ordinary circumstances, this seems obvious. For example, you can eat a hamburger and then win a race without believing that the hamburger caused you to win the race. Autism, however, is a mysterious disorder and as a result, it’s easy to see connections where there are none.
To determine whether a particular therapy is really effective, follow these tips.
- If your child is about to start taking a pill to reduce anxiety, work with your doctor and other people in your child’s life to determine how anxious your child is, when and where the anxiety occurs, and how it is usually alleviated. You can do this by keeping a journal or records over the course of a couple of weeks. Do the same thing if you’re about to start speech, occupational, or any other kind of therapy. Ideally, your practitioner should do this as a matter of course, but if she/he doesn’t, you’ll need to insist or do it yourself.
- Many therapists just work with your child where she is with the goal of “getting better.” As there’s no agreed-upon definition of “getting better,” there’s no way to measure outcomes. As a result, you may disagree about whether the therapy is effective. Work with therapists to set realistic short and long term goals so you can use data to see if your child is reaching those goals.
- Rather than intuitively saying “He’s less anxious,” continue to keep tabs on anxiety levels throughout the day. Use a scale that allows you to compare results (1 through 10, for example) so you can actually see that your child was at a level eight every day but is now at a level three.
- Very often, a brand new therapy can appear to have a huge positive impact almost instantly. It’s not unusual for this apparent effect to be, at least in part, the result of wishful thinking on the parents’ part. Keep records, and don’t jump to conclusions.
- While many therapies can be helpful, it’s best to add them one at a time. Give at least a few months to determine whether any given therapy is really making a difference.
- You may find that your child gains significant skills for a period of time and then seems to plateau. This is normal for children with and without autism. No child continues to build skills and abilities at the same rate throughout his life. If a particular therapy and/or therapist is working well for your child, stick with it for a while even if results slow down.
The SCERTS Model for Children With Autism
SCERTS is an overarching approach to autism education created by a multidisciplinary team of experts. The letters in the name stand for Social Communication, Emotional Regulation, and Transactional Support—the critical elements of the SCERTS program.
SCERTS is not a therapeutic technique; rather, it is a model for engaging autistic children which, when properly applied, “provides specific guidelines for helping a child become a competent and confident social communicator while preventing problem behaviours that interfere with learning and the development of relationships.”
Illustration by Brianna Gilmartin, Verywell
Imagine Jimmy, a 7-year-old with moderately severe (Level II) autism in a typical school setting. Here are just a few of the therapeutic experiences he might have in the course of a day:
- Academic programs in a general classroom with 1:1 support
- Academic programs in a support or “autism” classroom with a special education teacher and aides
- Speech therapy from the school therapist
- Occupational therapy from the school therapist
- ABA (Applied Behavioural Analysis) therapy from a school therapist or consultant
- Social skills therapy inside or outside of the school, offered by any of a range of therapists
- Physical therapy, possibly in school, usually from an outside therapist
- Additional therapies (Floortime, RDI, etc.) provided privately, usually outside of school
- Social and/or recreational activities in the general community or provided through a special needs program such as Challenger Club, with or without additional supports
Every one of Jimmy’s parents, teachers, and therapists is focused on teaching or expanding a different set of skills. Each has a different set of tools, a different set of goals, and a different set of benchmarks for measuring success.
For example, Jimmy’s general education teacher may be focused on phonics while his in-class aide may be most concerned with keeping disruptive behaviours in check. His speech therapist is working with Jimmy on spoken language and non-verbal communication skills. The occupational therapist at school is worried about Jimmy’s handwriting skills, while his ABA therapist wants to be sure he has learned how to complete specific tasks such as putting his coat away and lining up for the bus. At his Floortime and social skills sessions, Jimmy may be working on asking and answering questions, engaging in interactive play, or building abstract reasoning skills.
Outside of school and therapy, Jimmy’s parents may have very different goals. They may, for example, want to help him learn to sit still during a haircut or eat at a restaurant. They may want to support him as he participates in sports activities or learns to swim.
While all of these individuals may turn up at IEP meetings, it’s nearly impossible to integrate all of the activities, benchmarks, goals, and outcomes into a single, seamless program that’s appropriate for Jimmy. As a result, most students wind up with a collection of discrete therapies with unconnected goals, all of which are implemented separately over the course of any given day or week.
SCERTS was developed to address this issue, by providing “a systematic method that ensures that specific skills and appropriate supports, stated as educational objectives, are selected and applied in a consistent manner across a child’s day” in order to achieve “authentic progress,” defined as the ability to learn and spontaneously apply functional and relevant skills in a variety of settings and with a variety of partners.
SCERTS is a tool for aligning approaches from many different therapies including (for example) TEACCH, RDI, Hanen, and Floortime, with the goal of achieving:
- Functional, spontaneous communication (pre-verbal or verbal)
- Social and play skills (use of toys, interaction with peers)
- Generalized skills (many children with autism learn skills in one context at a time, and SCERTS helps children to understand, for example, that hitting is wrong not only in school but in any other context).
- Positive approaches to address problem behaviours
- Functional academic skills when appropriate.
SCERTS is child-centered and builds on developmental rather than behavioural theories. As a result, while it incorporates “naturalistic” forms of ABA, it specifically rejects classic ABA, also called “discrete trials,” because it is adult-directed and adult-initiated.
SCERTS goals are somewhat different from typical IEP goals because they integrate multiple aspects of a child’s development and life experience. Thus, for example, a speech therapy goal for a child with autism might be to “establish the general use of vocalizations,” while a SCERTS goal for communication might be “establish the general use of vocalizations directed to others to express intentions and emotional states.”
Another major difference between SCERTS and IEP goals is the requirement that SCERTS be implemented not only in a school or therapeutic setting but also at home and in the community. In other words, children work toward SCERTS goals all day, every day, no matter where they are or what they’re doing.
In addition, SCERTS goals are transactional and emotional rather than academic. Thus, while meeting SCERTS goals will help a child to learn, communicate, and behave appropriately in school, they are not specific to any particular academic discipline.
The individuals involved with created SCERTS are all researchers; as a result, there have been quite a few formal evaluations of SCERTS outcomes. In general, outcomes show positive changes in social communication and emotional behaviours, the two primary focuses of SCERTS.
SCERTS consultants are hard to come by, especially outside of Rhode Island where it was developed. The SCERTS group does, however, offer a clinical manual as well as training events which are intended for SCERTS teams (including school, community, and family members).
The decision to implement SCERTS often starts with the family. When that is the case, it requires ongoing dedication, advocacy, and management to be sure that the program is implemented across all parts of a child’s life and that training is provided to therapists and teachers as the child moves from grade to grade and school to school.
Animal and Pet Therapies for Autism
There is no cure for autism. There are, however, many therapies that can help treat either core or co-morbid (related) symptoms. While some of these therapies are risky, expensive, or both, animal-assisted and pet therapies are risk-free and either low cost or free. Even better, people with autism who are comfortable with and supported by animals are not alone. By becoming animal lovers, they have joined the ranks of millions of other people who share their passion and interest. This, for many autistic people, is a significant benefit—finding a group with a shared interest can be life-changing.
Studies on autism and animals are almost universally positive. While pets, service dogs, and animal-assisted therapies won’t cure autism, they do help people with autism to cope with anxiety, engage more fully with other people, and even build communication skills. One study suggested that autistic people smile a lot more when they’re around animals.
Any kind of animal can provide emotional, physical, or social support; in general, however, mammals make better therapeutic animals than reptiles, birds, or amphibians. Fish can be calming, but can’t provide the kind of interactions that build skills. No matter which type of animal is chosen, however, there are five ways in which animals can work with autistic people of any age.
Illustration by Brianna Gilmartin, Verywell
- Service animals are almost always dogs, and certain breeds are most commonly selected to be trained for service. Service animals work with children or adults with autism to help them navigate physical space, avoid negative interactions, or calm their emotions. Because they are highly trained “professionals,” service animals can be costly—but there are many sources of funding available.
- Therapy animals may be any species; cats, dogs, Guinea pigs, parrots, horses, and many other animals can help people with autism to build social communication skills, manage their emotions, and (for children) build play skills. Therapy animals are also used to support positive social interactions with typical peers.
- Emotional support animals are often pets. They are animals that make it easier for an autistic person to manage stressful situations such as travel, school, or medical interventions. Typically, emotional support animals must be certified by a clinician in order to be allowed into settings (such as schools) where animals are rarely allowed.
- For many people with autism, pets provide a unique type of social bond that’s available through no other means. Research supports the theory that pets promote “prosocial” behaviours such as shared interactions and shared smiles. The arrival of a pet is, according to one study, an especially beneficial moment.
- While hippotherapy is a form of animal therapy, it is unique in several ways. Not only has it been studied more intensively than other forms of animal therapy, but it can support both physical and social/emotional skills. In addition, of course, becoming a skilled horseback rider has many other long-term social and physical benefits.
It’s important to note that one form of animal therapy—interaction with dolphins—has been studied and found to be helpful. Unfortunately, while people with autism may have a positive experience with dolphins, the dolphins themselves are overly stressed by the experience. This has led to some negative outcomes both for the autistic individuals and for the dolphins. In addition, dolphin interactions are expensive and almost impossible to continue over time; it’s tough to bond with an animal that lives in the ocean!
Trained service and therapy animals are usually owned by the individual with autism. While they are expensive (because of their special training), they are often available through nonprofits that cover the majority of the cost. Service dogs are allowed in virtually any public setting.
Autistic people working with service dogs must be able to communicate with and control the dog, which means service dogs are not appropriate for every person on the spectrum. Depending on the circumstances, here are some of the things a service dog might do for its autistic human owner:
- Recognize emotional upset and help calm the owner
- Stop the owner from self-harming or potentially harming others
- Reduce anxiety by lying across the owner’s lap and applying pressure
- Improve sleep
- Protect autistic people who are likely to elope (wander) or otherwise step into the way of danger
- Recognizing and responding to seizures or other co-morbid symptoms
There is limited research into the efficacy of service dogs for autistic children or adults; in one study, parents noted positive impacts both for their child and for themselves.
Therapy animals are animals of any species that are brought into a therapeutic setting, school, hospital, or office. Therapy animals can be cats, dogs, birds, or even rodents. Therapy animals are often calming to people with autism and can help those individuals become more emotionally and intellectually available for therapy. They can also:
- Provide a focus for social communication
- Help build important skills such as joint attention and emotional reciprocity
- Support play therapy and other approaches to building social communication skills
- Provide motivation for learning a range of behavioural and practical skills
- Help people with autism by providing physical outlets to calm sensory cravings and emotional anxiety, thus helping to make people more open to therapeutic experiences such as social coaching.
One study evaluated the impact of animal-assisted play therapy (AAPT) on a boy with autism; the findings were encouraging. Findings from a randomized study in which animals were involved in behavioural therapy found “significant improvement in social communication skills in children with ASD participating in AAT compared to children with ASD not receiving AAT.”
Studies find that autistic people who have pets and/or emotional support animals gain in measurable ways from the experience. No matter what the species, pets can:
- Provide an easy, always-available self-calming mechanism
- Help smooth social communication
- By lowering anxiety, help autistic people to access challenging locations such as airports, lecture halls, large restaurants, etc.
Emotional support animals are essentially pets that provide comfort and have been certified by a professional as being necessary to the emotional well-being of the owner. Such certifications can come from a doctor, therapist, or other professional. With the right documentation, emotional support animals are usually allowed to accompany their owners—though there are some limits, depending on the size and temperament of the animal.
A large study used well-established metrics to evaluate the impacts of pets on children with autism. This study found significant gains in two specific areas of social/ communication: “offering to share” and “offering comfort,” noting that “these two items reflect prosocial behaviours.” They also found that the impacts were most significant when the pet arrived when the child was old enough to recognize the event.
Hippotherapy (sometimes called equestrian therapy) is therapeutic horseback riding and horse care. Hippotherapy is a well-established technique and is often paid for by insurance companies. While some people with autism find horses intimidating, those who do enjoy the experience can gain a great deal through hippotherapy.
- Sitting on horseback can help build physical strength and tone muscles; this is important as many people with autism have low muscle tone.
- Guiding and communicating with a horse can help to build social communication skills. The autistic person must think through and communicate their desires, a major step for many autistic children.
- As they build skill, autistic people can participate in more advanced forms of horseback riding. Depending on their interests, some become involved in trail riding, dressage, and horse care.
- Surprisingly, hippotherapy actually has a positive impact on autistic individuals’ social understanding use of spoken language. One studyfound significant improvements in social cognition, social communication, total number of words, and new words spoken. Another study found a longterm reduction in “irritability behaviour” as a result of hippotherapy.
Service animals are available through organizations set up to train both the animal and its human owner. 4 Paws for Ability offers an autism assistance dog program that includes some financial support. It’s worth your while to look around, ask a lot of questions, and search for financing options in your region.
Animal-assisted therapists are available in many locations, and quite a few therapists in schools and clinical settings use animals to help their clients feel calmer and more at home. Ask around locally to find out what kind of options are available.
Pets and emotional support animals can be found anywhere you live, whether at your local animal rescue shelter or at a pet store. It’s important, of course, to select an animal with which your child is likely to bond. To do this, you’ll want to introduce your child to the animal and observe the behaviours of both the child and the animal to be sure there’s a good match. Watch closely to see that the animal is not intimidated by your child (or vice versa) and that the animal is calm, healthy, and responsive. If possible, come back more than once to be sure that your child’s connection with the animal continues over time.
Benefits of Play Therapy and Autism
Young children learn through play. Typically developing children use play to build physical and social skills, to try on different personalities and characters, and to forge friendships. Autistic children, however, may play in very different ways. They are more likely to play alone, and their play is often repetitive, with no particular goal in mind. Left to themselves, autistic children often stay stuck in a rut, unable to explore their own abilities or interests.
Play therapy is a tool for helping autistic children become more fully themselves. It can also, under the right circumstances, be a tool for helping parents learn to relate more fully to their children on the spectrum.
Play therapy was originally conceived as a tool for providing psychotherapy to young people coping with trauma, anxiety, and mental illness. In that context, play becomes a way for children to act out their feelings and find coping mechanisms.
This type of play therapy is still popular; however, it is not the same thing as play therapy as used for children with autism.
Many specialists offering something called “play therapy” to children with autism are actually providing something akin to Floortime Therapy. Floortime is a play-based technique which builds on autistic children’s own interests or obsessions to develop relationships and social/communication skills. The Play Project is another therapeutic approach which uses play as a tool for building skills in autistic children. Like floortime, it builds on children’s own interests.
It is possible to be officially credentialed in Floortime therapy through a certification program that includes a wide range of content. This certification is offered through the Interdisciplinary Council on Developmental and Learning Disorders (ICDL) but is not recognized by any of the national therapeutic associations. Thus, most “play therapists” are not so much credentialed as they are experienced and/or trained. Of course, as with all autism treatments, the onus is on the parent to investigate the therapist’s background, training, and references, and to closely monitor progress.
Autism is largely a social-communication disorder. Children with autism find it extremely difficult to relate to others in typical ways. Instead of, for example, pretending a doll is really a baby, they may focus intensely on objects, use them for self-stimulation, and become entirely self-absorbed.
Play is a wonderful tool for helping children (and sometimes even adults) to move beyond autism’s self-absorption into real, shared interaction. Properly used, play can also allow youngsters to explore their feelings, their environment, and their relationships with parents, siblings, and peers.
Very often, too, play therapy can allow parents to take an active role in their autistic child’s growth and development. Play therapy can be taught to parents, and, over time, parents can become their child’s therapist while also building a stronger, more meaningful relationship.
A good play therapist will get down on the floor with your child and truly engage him through the medium of play. For example, the therapist might set out a number of toys that a child finds interesting, and allow her to decide what, if anything, interests her. If she picks up a toy train and runs it back and forth, apparently aimlessly, the therapist might pick up another train and place it in front of the child’s train, blocking its path. If the child responds, whether verbally or non-verbally, a relationship has begun.
If the child doesn’t respond, the therapist might look for high-interest, high-energy options to engage the child. Bubble blowing is often successful, as are toys that move, squeak, vibrate, and otherwise DO something.
Over time, therapists will work with the child to build reciprocal skills (sharing, turn-taking), imaginative skills (pretending to feed a toy animal, cook pretend skills) and even abstract thinking skills. As a child becomes better able to relate to others, additional children may be brought into the group, and more complex social skills are developed.
Many parents find they can do play therapy on their own, using videotapes and books as a guide. Others rely on the experience of trained play therapists. And still, others choose to simply bring their children to a play therapist or have the therapist come to their home. In any case, play therapists can provide parents with tools to connect with and have fun with their children on the autism spectrum.
Play therapy may be offered through a local early intervention program as a free service, or it may be incorporated into a special needs preschool program. It’s unlikely to be incorporated into a school-age public school program, though it may be possible to make the case that such a program is appropriate for your child. Outside of these programs, it is unlikely that play therapy will be covered by any kind of insurance, so it is up to the parent to find and pay for the therapist.
If you are looking for a certified Floortime specialist, go to the Floortime website and look for a local therapist. If you don’t live near a major city, it’s unlikely you’ll find such a person nearby, which means you may need to travel and/or work with the therapist at long distance. This is accomplished through a combination of shared videos and telephone conferences; while not ideal, this can be helpful.
If you’re looking for someone local with experience and skills in play therapy in a more general way, you might find just what you’re looking for in an occupational therapist or child psychologist with a specialty in autism. You might even find a play therapy program (usually a group program) offered through autism clinics, hospitals, or private service providers.
How Art Therapy Helps People With Autism
Art therapy is a risk-free way to help your child connect with their emotions
According to the American Art Therapy Association, “Art therapy is a mental health profession that uses the creative process of art-making to improve and enhance the physical, mental, and emotional well-being of individuals of all ages. It is based on the belief that the creative process involved in artistic self-expression helps people to resolve conflicts and problems, develop interpersonal skills, manage behaviour, reduce stress, increase self-esteem, and self-awareness, and achieve insight.”
There is no single way to provide art therapy; as a result, it can look very different when practiced by and with different individuals. It can be free-flowing or structured, open-ended or goal-oriented. For children and adults with autism, it can be a wonderful way to open doors to self-expression and engagement.
One of the hallmarks of autism spectrum disorders is difficulty with verbal and social communication. In some cases, people with autism are literally nonverbal and unable to use speech to communicate at all. In other cases, people with autism have a hard time processing language and turning it into smooth, easy conversation. People with autism may also have a tough time reading faces and body language. As a result, they may have difficulty with telling a joke from a statement or sarcasm from sincerity.
Meanwhile, many people with autism have an extraordinary ability to think visually “in pictures.” Many can turn that ability to good use in processing memories, recording images and visual information, and expressing ideas through drawing or other artistic media. Art is a form of expression that requires little or no verbal interaction that can open doors to communication.
All too often, it’s assumed that a nonverbal person or a person with limited verbal capabilities is incompetent in other areas. As a result, people on the autism spectrum may not be exposed to opportunities to use artistic media, or the opportunities may be too challenging in other ways (in large class settings, for example). Art therapy offers an opportunity for therapists to work one-on-one with individuals on the autism spectrum to build a wide range of skills in a manner which may be more comfortable (and thus more effective) than spoken language.
Art therapy is a tool for helping clients to access their emotions. By contrast, art classes are intended to provide students with instruction on how to achieve specific artistic effects or goals. While art classes may be appropriate for individuals with autism, they are not a substitute for art therapy.
The research is somewhat sketchy regarding the impact of art therapy on people with autism. The literature consists mainly of case studies and papers describing the observed impact of art therapy programs. Some of the papers written and presented on the subject, however, suggest that art therapy can do a great deal. In some cases, it has opened up a whole world of opportunity to an individual with autism who has significant artistic talent. In other cases, it has created a unique opportunity for personal bonding. Other possible outcomes include:
- improved ability to imagine and think symbolically
- improved ability to recognize and respond to facial expressions
- improved ability to manage sensory issues (problems with stickiness, etc.)
- improved fine motor skills
Qualified art therapists hold a masters degree and are certified by the Art Therapy Credentials Board. Not all qualified art therapists, however, have specific experience working with people on the autism spectrum. Many specialize in working, for example, with trauma victims, individuals with mental illness, etc. To find an art therapist, start with the Art Therapy Credentials Board’s online therapist locator.
When you’ve located a local therapist, call to find out what experience that individual has had with autism spectrum disorders. While extensive experience may not be critical, it is very important that the therapist you choose understands the specific issues, challenges, and strengths associated with autism. It’s important to note that art therapy is not just for young children, or even for children in general. Its usefulness has been established for people of all ages, including adults.
The Risks of Chelation Therapy for Autism
Chelation therapy is a process in which potent medications are used to remove heavy metals from the human body. Chelation has been used successfully to treat lead poisoning among other disorders. Starting in the late 90s, chelation was recommended by some alternative practitioners as a tool for curing autism.
The reality is that chelation neither improves nor cures symptoms of autism. In addition, if used incorrectly and outside of a hospital setting, chelating drugs can be quite dangerous.
Chelation was developed to treat heavy metal poisoning discovered in people who painted naval vessels with lead-based paint. As such, it has been found to be useful for treating poisoning by arsenic, lead, mercury, gold, iron, cadmium, and copper. Some research suggested that chelation could be helpful for cardiovascular disease and cancer, but neither of these uses is supported by research.
Alternative Treatment for Autism
The idea of using chelation as a tool for treating autism grew out of a belief that mercury-containing thimerosal (a preservative) in vaccines was the direct cause of a rapid increase in autism spectrum diagnoses. The theorists reasoned that if mercury was the cause of autism, then removing mercury from the body would cure autism.
The main force behind chelation came from the Autism Research Institute. A group of practitioners working on curing autism developed a set of protocols for a treatment called Defeat Autism Now (DAN!). These protocols were based on the idea that autism is a condition that can be cured through “biomedical” interventions.
However, these theories are not widely accepted in the medical community and have even been found to potentially cause harm. The Defeat Autism Now protocol was discontinued completely for these reasons, among others, in 2011.
Chelation starts with a provocation test in which the patient is given a chelating drug. A chemical analysis of the patient’s urine shows whether unusually high levels of heavy metals are being excreted. On the basis of this test, a practitioner may administer oral or intravenous drugs or even use nasal sprays, suppositories or creams.
All of these treatments have the same function: the medication bonds with the metal ions, making the metals less chemically reactive. The new and less reactive compound becomes water-soluble and is flushed out of the body through the bloodstream.
Chelation, when used appropriately and properly, is administered by a doctor in a medical facility. The process is carefully monitored because it does carry risks. There are many chelating drugs, all of which have significant side effects. The most effective and safe of these includes DMSA (other names are: chemet, dimercaptosuccinic acid, or succimer).
DMPS is another less risky chelating drug (also known as 2,3-Dimercapto-1-propanol, propanesulfonic acid, or sodium dimercaptopropanesulfonate).
Other drugs used for chelation have a much higher likelihood of causing serious side effects. Some of these include:
- Alpha lipoic acid (also known as dihydrolipoic acid, lipoic acid, lipolate or thiotic acid)
- Cysteine (also called acetylcysteine, cystein, cystin, L-cysteine, N-acetylcysteine, or NAC)
- EDTA (also called H4EDTA, diaminoethanetetraacetic acid, edetic acid, edetate, ethylenedinitrilotetraacetic acid, tetrine acid, trilon BS, vinkeil 100, versene acid, or warkeelate acid)
Even when used appropriately in a clinical setting, chelation can have side effects ranging from dizziness and nausea to a headache and diarrhea. When used inappropriately and/or without proper supervision, chelation can have very serious side effects that can be life-threatening. Some of these include:
- Low blood pressure
- Cardiac issues
- Brain damage
- Liver damage
- Kidney damage
- Dangerously low calcium levels
Unfortunately, many parents have chosen to chelate their children at home without medical supervision—this has led to health issues ranging from nausea and diarrhea to even death in one case.
It’s important to understand that heavy metals such as iron and copper are actually essential to the body’s proper functioning.
Over-exposure to certain metals can cause serious problems, but the removal of all heavy metals can lead to similarly serious outcomes.
In 2003, practitioners of the DAN! protocol recorded that they saw many positive changes in people with autism who had taken DMSA, including the “rapid progression of language ability, improved social interaction, improved eye contact, and decreased self-stimulatory behaviours (stimming).”
Similar claims were made in multiple studies. All of these studies have flaws, however. Some of these errors are so significant that they do not provide any meaningful evidence. According to one meta-study, which included studies from multiple databases, “no clinical trial evidence was found to suggest that pharmaceutical chelation is an effective intervention for ASD.” The study went on to claim that the risks outweighed the “proven benefits.”
Among the potential risks of the treatment, the study found included hypocalcemia, renal impairment, and one reported death.
The study concluded, “Before further trials are conducted, evidence that supports a causal link between heavy metals and autism and methods that ensure the safety of participants are needed.”
There is not an accepted and proven link between heavy metals and autism. Therefore, chelation therapy is not only potentially dangerous but also medically unfounded.
Today, chelation therapy remains on the list of alternative treatments for autism. Several well-known organizations, including TACA (Talk About Curing Autism), continue to promote chelation as one of several biomedical treatments for autism. It is still possible to find doctors willing to use chelation on children with autism, and there are still parents willing to try this approach as a last or nearly-last resort.
Chelation, along with many other alternative or biomedical treatments (such as hyperbaric oxygen treatment and stem cell treatment) are unlikely to disappear anytime soon. There are many reasons for this.
Firstly, it is rare for parents to have definitive information about the causeof a child’s autism. While there are many treatments for autism, none cure for the core symptoms. It is true that some children with autism improve dramatically over time—some children even improve to such a degree that they are no longer diagnosable as autistic.
Many children with autism seem to develop more or less normally until after the first year of life. The onset of autistic symptoms often coincides with the administration of specific childhood vaccinations. A minority of children with autism have co-morbid physical issues, such as gastrointestinal and skin problems, which parents assume to be related to their autism.
It is not always clear what a child with autism will respond to and how the condition will change over time. For these reasons and more, not all parents dismiss alternative treatments for autism. However, it is key to discuss any type of treatment with your child’s doctor—equally important is to not overlook the potential and serious risks of therapy such as chelation.
It isn’t easy to separate legitimate therapies from questionable therapies, and it’s very tempting for parents to explore alternative options when mainstream medicine fails their children. The reality is that, in some circumstances, alternative methods of treatment can be helpful—there is no one-size-fits-all approach to selecting autism therapies.
If you are considering a non-mainstream option, however, try using these questions to help guide your decisions:
- Who is recommending this option and what do they have to gain if we accept?
- What do reliable sources such as the CDC (Centers for Disease Control and Prevention) or NIMH (National Institute of Mental Health) have to say about this particular treatment?
- What are the potential risks related to using this treatment?
- What methods are in place to ensure my child’s safety?
- How will we measure changes or improvements in my child’s autism symptoms?
A Word From Verywell
In general, any treatment that the CDC and/or NIMH warns against and which carries a high risk of injury to your child should be avoided. This doesn’t mean, however, that there aren’t any options worth considering outside of those recommended by your pediatrician or offered by your child’s school. It does mean that you, as the parent or guardian, must be extremely careful about exposing your child to a therapy that has the potential for harm.