Autism is a spectrum of disorders that are diagnosed on the basis of an individual's behavior in two realms — social communication and social interaction, and repetitive or restricted patterns of behavior. While autistic people may share some characteristics, there is a huge variation in how the disorder manifests itself. Hence the use of the word "spectrum" in describing the condition. In fact, there is so much variation in autism symptoms that it is commonly said: "If you've met one autistic person, you've met one autistic person."
Asperger's syndrome was considered a subtype of "high-functioning" autism, characterized by the absence of a key symptom of classic autism — developmental delay in speech and language acquisition. However, DSM-5 eliminated this classification of Asperger's and autism is now categorized differently.
The prevalence of autism in the United States has increased dramatically in the past two decades, the most recent available estimate being 1 in 68 children. The disorder is 5 times more common in boys (1 in 42) than among girls (1 in 189).
Autism is an umbrella term for a wide variety of neurological, cognitive, psychological and behavioral characteristics. The use of the word "spectrum" is intended to convey the diversity of these characteristics. However, some experts believe that this is a temporary approach, and that with more research into the genetic and pathophysiological factors underpinning these characteristics, it will get divided into sub-types, and possible different conditions.
Today the accepted definition of autism comes from the Diagnostic and Statistical Manual of Mental Disorders (DSM), the official diagnostic and classification tool for the American Psychiatric Association. In 2013, the fifth edition of this manual (DSM-5) was released and a big change was made to the classification of autism spectrum disorders.
DSM-IV Diagnostic Criteria
Until 2013, the autism spectrum was broadly divided into:
- Classic autism (or Kanner's autism)
- Childhood disintegrative disorder
- Rett syndrome
The only clinical difference between Asperger syndrome (often just called Asperger's) and classic autism was that language acquisition was not delayed in Asperger's and there was no significant delay in cognitive development. Individuals with Asperger's — often called Aspies — often have difficulty in social settings, which ranges from awkwardness to anxiety, lack of empathy (this is debatable) to preoccupation with a narrow subject, and one-sided verbosity. However, as kids grow up, they are able to better cope in a neurotypical world because their cognitive abilities are intact (and, some may argue, often superior).
An Autist's Description
From an excellent autism FAQ, here is an excerpt that discusses Asperger's and autism:
The only difference in diagnostic criteria between Asperger's and Autistic Disorder is "no clinically significant delay in development of language." This has usually been understood to mean that people who begin to use speech by a normal age would be diagnosed with Asperger's, whereas people who do not use speech by a normal age would receive an Autistic disorder diagnosis.
In practice, the terms "high functioning autism" and "Asperger's" are used interchangeably, and many people receive both labels. Some people take issue with this distinction, and claim that there is no true validity behind it. They point to the extreme delay in acquisition of social or pragmatic use of language in people with Asperger's as a clinically significant delay in language, thus invalidating the criteria of "no clinically significant delay in language."
Indeed, individuals diagnosed with Asperger syndrome often interpret language literally. They may have difficulty understanding sarcasm, idioms or figurative speech. This can arguably be considered a delay in language acquisition, so "no clinically significant delay in language" is, to a certain extent, not technically correct.
This was one of the reasons the DSM definition of autism spectrum diagnosis was revised and the diagnosis of Aspergers was dropped altogether.
DSM 5 Diagnostic Criteria
A good guide to the (relatively new) DSM-5 diagnostic criteria for autism can be found here. A summary of the criteria is as follows:
- Social Communication: Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:
- Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction.
- Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated verbal and nonverbal communication, through abnormalities in eye contact and body language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.
- Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people.
- Repetitive Behaviors or Restricted Interests: Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least 2 of the following 4 symptoms:
- Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).
- Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric ritual, insistence on same route or food, repetitive questioning or extreme distress at small changes).
- Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests)
- Hyper or hypo reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects)
With the new criteria defined in DSM-5, Asperger syndrome is no longer a separate diagnosis. The severity of autism is determined based on the severity of the symptoms outlined in the two broad areas.
The MCHAT (Modified Checklist for Autism in Toddlers) is one of the most widely used assessment tools by psychologists and neurologists for the diagnosis of autism. The latest revision is called the MCHAT R/F.
Early intervention is important in autism treatment. Autism treatment options for children usually include:
- ABA therapy: ABA or Applied Behavioral Analysis is used to teach children and young adults a variety of adaptive skills. For non-verbal children, the focus of ABA is often teaching communication. Other kids learn academic skills, social skills or even physical motor planning through ABA techniques. There are many flavors of ABA, like PRT (Pivotal Response Training), ESDM (Early Start Denver Model) and VB (Verbal Behavior). These flavors have considerable overlap in their techniques, the biggest being the use of reinforcements to create incentives for the behaviors you want the child to engage in. Some autistic adults oppose ABA, especially therapy where children are not allowed to stim. (Stimming is a soothing behavior that autistics use when overwhelmed by something in their environment.)
- Speech and language therapy (SLT): It might seem that Aspies (or, more formally, individuals diagnosed with Aspergers) do not need speech therapy. This is often but not always the case. Speech and language therapy includes nonverbal means of communication such as gestures, body language and eye contact. It also includes pragmatic language, which involves the use of language in social situations, listening as part of communication, and socially appropriate exchanges. For example, not interrupting other people when they are talking, recognizing when the other person is interested in the topic of conversation, and reading body language. Sometimes these skills are taught by Speech and Language Pathologists, either in a one-on-one setting or in a social skills group.
- Social skills groups: Many autistic children have challenges with social interaction because they may not know how to interact with peers. Some are genuinely asocial in that they are not interested in other people. But more often they are simply unsure what to say, how to approach their peers and engage in a social exchange. They could even be afraid of what they assume the peer will say to them. Social skills groups are a great resource in such situations. Many such groups work by teaching kids "social scripts" — canned scripts to facilitate short social interactions, with the aim of equipping children enough to make them comfortable trying social interactions. With practice, this gets easier and they are able to generalize these skills to other situations outside the social skills group.
- Occupational therapy: Other disorders like dyspraxia and hypotonia occur more commonly in autistic children than neurotypical children, so occupational therapy is often required to improve fine motor skills and adaptive skills such as writing by hand, tying shoe laces, or toileting.
- Physical therapy: Delayed development of gross motor skills is often observed in autistic children. Some may have trouble with motor planning or other disorders like hypotonia. Physical therapy helps in these cases. Another advantage of physical therapy is that improved hand-eye coordination improves playground skills, which is a great help in socializing with peers.
- Dietary interventions: Children with autism spectrum disorder face a higher than average risk for experiencing gastrointestinal problems.  So dietary interventions help children who may have GI issues. The most common dietary interventions include a gluten-free diet, a dairy-free diet, eliminating food coloring, eliminating MSG, and eating organic food exclusively. A restricted elimination diet (RED) has also been found to be useful for treating ADHD in some children, which is often a comorbid condition for people on the autism spectrum.
- Medication: There is no medication for autism but several disorders like ADHD, gastrointestinal disorders and epileptic seizures are comorbid with the autism spectrum. A study published in the journal Pediatrics concluded that psychotropic medication is commonly prescribed to individuals on the autism spectrum, despite limited evidence of their effectiveness.
Other systems that often help autistic individuals are
- Routine: Knowing what to expect and minimizing surprises can help prevent meltdowns. Making a schedule in advance helps people on the spectrum plan and function better.
- Warning: Sometimes autistic children have a hard time with transitions, especially from preferred to non-preferred activities. It helps to give sufficient warning, e.g. "In 2 minutes it will be time to stop playing and get dressed." Sometimes multiple warnings may be required e.g. at five-, two- and one-minute marks before the transition.
- Visual aids: Some people can consume, interpret and remember information much better if presented in a visual format rather than verbal instructions. For common tasks like using the bathroom or getting dressed, visual aids can sometimes be very effective.
- Social stories: Social stories describe a situation, skill, or concept in terms of relevant social cues, perspectives, and common responses in a specifically defined style and format. More information on social stories is available here.
- Video modeling: Video modeling is a mode of teaching that uses video recording and display equipment to provide a visual model of the targeted behavior or skill. It is similar to social stories but suits some kids better because they may learn better with video. More information on video modeling is available here.
- Sleep aids: Sleep is vital for the development of the brain and for the body to rejuvenate. Many children on the autistic spectrum have trouble either falling asleep or staying asleep through the night. Sleep aids like weighted blankets, or medication like melatonin, can help some kids.
Treatments outside of the mainstream
There isn't a definite known cause of autism, nor is there a "cure". This has led many parents to resort to unconventional methods ranging from benign probiotics to potentially harmful chelation, hyperbaric chambers or methyl-B12 shots and pills. None of these have been scientifically validated, nor are they recommended by the American Academy of Pediatrics. Always consult your pediatrician before administering any medication or procedure to your child.
Autistic Person or Person with Autism?
There are two schools of thought on whether it's better to use "person-first" language, such as "child with autism" or "person with autism". Proponents of person-first language believe that autism does not define the individual, and that respect for the individual is enhanced by use of language that puts the person first.
The other camp, which notably includes many autistic people themselves, believes that autism is a part of their personality. They prefer the use of autistic as a descriptor — "autistic people" is like saying "left-handed people." They feel that "person with autism" is somewhat like "person with diabetes", which makes autism seem like a disease. For them, autism is not a disease but simply a different neurology, one that makes them who they are. This point of view is somewhat analogous to homosexuality. Decades ago, before 1970, it was believed that homosexuality is a mental disorder and the DSM classified it as such. However, it is no longer considered a disorder and gay and lesbian individuals have wide acceptance in society today. In a way, the struggle is similar for autistic individuals to be accepted for who they are instead of society trying to "cure" them. Stimming, being non-verbal, or not making eye contact are some characteristics that make it hard to be accepted in the neurotpyical world. Many autism advocates hope to change that by making society more tolerant and appreciative of neurological differences.
Low-functioning vs High-functioning
Another pair of labels often used is "high-functioning" and "low-functioning" autism, or "severe" and "mild" autism. However, advocates for autistic people feel that such labels should not be used. The "high-functioning" label makes light of the challenges and struggles faced by some autistics, who may appear neurotypical but often have to exert themselves really hard and deal with severe anxiety in order to behave in a way that is not natural to them. For example, suppressing their urge to stim. Conversely, the "low-functioning" label — often used for autistics who are non-speaking — automatically overlooks their strengths and abilities, disrespects them and makes their opinions less likely to be heard. What is wrong with Functioning Labels? summarizes this point of view, with quotes and links to several blog posts — here, here, and here — explaining why it is wrong to use functioning labels.
- Autism FAQ - Lydia Brown, AutisticHoya.com
- Criteria, Guidelines, and Examples for Diagnosing Autism Spectrum Disorder - Laura Carpenter, PhD BCBA, Associate Professor of Pediatrics, Medical University of South Carolina
- Useful Notes: Asperger Syndrome
- Advice for parents of young autistic children
- Brochure: Do I Have Asperger's?
- PRT (Pivotal Response Training) Pocket Guide
- Gastrointestinal Symptoms in Autism Spectrum Disorder: A Meta-analysis - Pediatrics
- Facts about Autism Spectrum Disorders - CDC
- Are There Still Different Types of Autism? - Interactive Autism Network
- What Does the Autism Spectrum Look Like? - The Atlantic