- What is Autism?
- What is the Autism Spectrum?
- What is Asperger's Syndrome?
- What are sensory issues?
- Do Autistic people have empathy?
- Who discovered Autism?
- What causes Autism?
- Is there a cure for Autism?
- What treatments, therapies, or interventions are available for Autistic children and adults?
- What services or accommodations do Autistic students often need or receive in schools?
- What kind of employment opportunities do Autistic people have?
- What kind of research is being done about Autism?
- What organizations represent people interested in or connected to Autism?
- Who comprises the "Autism" or "Autistic" communities?
- Who are self-advocates?
- How should I refer to people affected by Autism?
- What about all this disagreement/arguing/vitriol/tension/hate I see online?
- Why do you capitalize Autistic and sometimes capitalize Autism?
- What is neurodiversity?
- Are Autistic people more likely to be violent or commit violent crimes than non-Autistic people?
- Where can I learn more?
1. What is Autism?
Autism is a neurological, pervasive developmental condition. It is a disability. It is usually considered a disorder. It is not a disease. It is a lifelong condition that spans from infancy to adulthood. Autistic people usually share a variety of characteristics, including significant differences in information processing, sensory processing, communication abilities or styles, social skills, and learning styles.
Some Autistic people are non-speaking (and may be called nonverbal). These people cannot use typical speech to communicate. They often use Adaptive and Augmentative Communication (AAC) devices, keyboards/typing, picture cards, whiteboards, or American Sign Language to communicate instead. Some Autistic people begin to develop normal speech in childhood and later regress and lose some or all speech. Other Autistic people develop limited speech. Still other Autistic people never develop speech at all. Other Autistic people are highly verbal and able to communicate using speech. Some Autistic people develop precocious vocabularies in early childhood.
Many Autistic people engage in self-stimulating behaviors called "stims" or "stimming." Stimming can take many forms. Stereotyped stims are hand or arm flapping and rocking, although stimming can also include pacing, other body movements, verbal stims (repeating certain phrases, humming, singing certain songs), or tactile stimming (rubbing a piece of cloth.) Stimming is a natural response to cope with overwhelming emotions, such as joy, anxiety, anger, or sadness. It is also a coping mechanism for sensory overload--more on that with question 4.
Autistic people tend to understand language literally and explicitly. Idioms are difficult for us to understand. We tend to be very truthful or honest, sometimes even to the point of extreme bluntness. For those of us who have high levels of verbal abilities, the social or pragmatic aspect of language is extremely difficult for us to learn -- and it has to be taught. It is not intuitive, automatic, or natural for us. We find it an entire foreign culture. We can easily come across as arrogant, rude, self-centered, or mean, and will rarely be aware of this unless informed directly. Autistic people have great difficulties with nonverbal communication such as facial expressions and body language, and have trouble understanding social subtleties and subtext.
Autistic people also rely heavily on routine, sameness, or being able to expect something to be or occur a certain way. When a routine is altered or disrupted, an Autistic person may have a meltdown, experience severe anxiety, and will have extreme difficulty adapting to the change.
Some Autistic people are able to live independently, complete post-secondary education (such as university or technical training), and obtain and keep meaningful, competitive employment. Other Autistic people can only do these things with supported employment or living services, or extensive supports in the educational setting. Still other Autistic people may need to live in a group home setting or with a family member or full-time caregiver for the rest of their lives. Many Autistic adults are underemployed or unemployed because they do not have access to appropriate and necessary supported employment services.
Some Autistic people also have co-occurring conditions of mental illness (such as bipolar disorder), behavioral or mood disorder (such as clinical depression or Tourette's Syndrome), learning disability (such as dyscalcula), or intellectual disability (formerly called mental retardation.) Many Autistic people also have conditions like Executive Function Disorder, Sensory Processing Disorder (formerly called Sensory Integration Disorder), prosopagnosia (face blindness), dyspraxia, synesthesia, anxiety disorders, and learning disabilities.
Some Autistic people are misdiagnosed or given simultaneous diagnoses with various conditions like Attention Deficit Disorder (ADD), Attention Deficit Disorder with Hyperactivity (ADHD), Post-Traumatic Stress Disorder (PTSD), or intellectual disability.
The most important thing to remember about Autism is that each individual is truly an individual. No two Autistic people are alike. At best, we share many similar characters, but we have our own personalities, interests, wishes, hopes, dreams, and fears. We also have different neurological and psychological profiles.
2. What is the Autism Spectrum?
The Autism Spectrum, or Autistic Spectrum, is an informal name used both by clinicians and laypeople to describe the variation in phenotype of Autistic children and adults. It is also used to refer to a set of distinct diagnoses used by clinicians that are considered part of the larger Autism umbrella. Some people dislike this terminology and feel that Autism is not a sliding scale or gradient; other people dislike this terminology because they do not consider most highly verbal Autistics to be truly Autistic. Autism Spectrum Disorder is often abbreviated to ASD.
The American Psychological Association (APA) publishes a Diagnostical and Statistical Manual. The current DSM is the DSM-IV, published in 1994. It considers three conditions to be "Autism Spectrum Disorders." Those conditions are Autistic disorder (also called Kanner's Autism or Classic Autism), Asperger disorder (also called Asperger's Syndrome), and Pervasive Developmental Disorder Not-Otherwise-Specified (PDD-NOS).
Many people consider Rett's Syndrome, Childhood Disintegrative Disorder, and Nonverbal Learning Disorder to be Autism Spectrum Disorders or related to Autism.
Some people use terms like "high functioning autism" and "low functioning autism" to differentiate between Autistic people who have higher speaking abilities and Autistic people who have lower speaking abilities; however, some people object to the use of these terms as demeaning and offensive. Others insist that these terms are necessary to understand the full breadth of the spectrum.
3. What is Asperger's Syndrome?
Asperger's Syndrome is one of the three Autism Spectrum Disorders identified in the DSM-IV. It is also called Asperger Disorder or Asperger's Disorder. (Often, people misspell it Aspberger, Aspburger, or Asberger.) Asperger Disorder was added to the DSM-IV in 1994. 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."
In the DSM-5 (the APA changed from Roman numerals to Arabic ones), to be released in 2013 (if I'm not mistaken), the separate three diagnoses of Autistic disorder, Asperger disorder, and PDD-NOS will be removed and replaced with the single diagnosis "Autism spectrum disorder." This proposed change has generated a lot of controversy. Some people are afraid that non-speaking Autistics with lower levels of adaptive functioning skills will be overlooked with the more inclusive criteria, whereas others are afraid that highly verbal Autistics who often have higher levels of adaptive functioning skills will be overlooked with the more inclusive criteria. Others support the change.
4. What are sensory issues?
Sensory issues are caused by Sensory Processing Disorder, formerly called Sensory Integration Disorder. Almost all Autistic people have varying degrees of sensory sensitivity. Sensory issues fall into two primary categories: hypersensitivity and hyposensitivity. Hypersensitivity is when a person is extra-sensitive to certain stimuli; hyposensitivity is when a person seems to be much less affected by certain stimuli. SPD affects all five senses, and it affects everyone differently.
Most Autistic people have aversions to light touch, such as patting the back, stroking hair, or poking, and may reflexively lash out at someone or something making such contact. Many Autistic people have light sensitivity -- to the humming or flickering of fluorescent lights, or to too dim or too bright lighting. Other Autistic people have severe olfactory sensitivity -- and will not eat certain foods or will develop headaches or other problems around certain smells, like cleaning products, wipes, or perfumes.
Too much sensory overstimulation can lead to sensory overload -- a debilitating state in which the affected person is unable to process or respond to any sensory stimuli, including social interaction. I always compare sensory overload to having the infamous "blue screen of death" that Windows PCs get but in my brain--my neurological functions. It is a very painful, inhibiting state. Sensory overload often happens at places like concerts, crowded social events (such as parties or dances), schools, hospitals, or police stations. These sensory issues can make it hard for Autistic children and adults to experience meaningful inclusion.
Some people are better at coping with sensory issues than others. Coping skills are learned, often by trial and error, and sometimes with familial or professional assistance. Many Autistics learn coping skills from one another.
5. Do Autistic people have empathy?
Yes, we do. There was a misconception perpetuated for several decades -- and still fueled by some people today -- that Autistic people are not capable of empathy or empathizing with other people. One of the most common characteristics of Autism is a deficit in the ability to understand nonverbal forms of communication -- including tone or pitch of voice, word choice (such as idioms, colloquialisms, and metaphors), facial expressions, body language, and other subtle communications. Because of that, most Autistic people have a hard time accurately expressing their own thoughts, feelings, or opinions using nonverbal forms of communication. We also have trouble identifying the emotions of others based on subtext or body language.
Therefore, while we have empathy (and a 2009 study showed that Autistic people not only have empathy, but in certain cases, had more empathy on average than non-Autistic people), we may not recognize when to express empathy for someone else, nor will we express it in a way that is expected in the rest of society.
Many Autistic people have a very strong sense of justice -- of right and wrong, and of fairness. Many Autistic people deeply experience sadness, tragedy, and anger at events recounted on the news -- famines, war, genocide, terrorist attacks, or other violent crimes.
6. Who discovered Autism?
American psychiatrist Leo Kanner published a paper called Autistic Disturbances of Affective Contact in 1943 in the English language. In 1944, Austrian pediatrician Hans Asperger published a paper called Die "Autistischen Psychopathen" im Kindesalter (Autistic Psychopathy in Children) in 1944 in the German language. Kanner's research was widely recognized and dominated the field of autism, while Asperger's research, conducted under a Nazi-controlled government during World War II, would not be available in English until the 1980 translation by Lorna Wing.
Later researchers included Bruno Bettelheim, who supported the later disproven theory that mothers caused Autism when they did not love their children, and Bernard Rimland, who railed against Bettelheim and devoted his life to finding a cure for Autism. There was Ivar Lovaas, the clinical psychologist who advocated a behaviorist theory, that would later develop into Applied Behavioral Analysis (ABA), and Eric Schopler, the psychologist who developed the TEACCH program as an alternative to ABA. (More on those later, on question 9.)
7. What causes Autism?
No one knows with certainty the exact cause of Autism. The generally accepted theory is that the cause is complex genetic factors. Multiple studies on twins and families suggest that Autism is genetic, and that multiple genes and parts of several chromosomes are involved in producing phenotypic traits of Autism in an individual.
There are many less credible theories about environmental causes, such as the vaccine-causation hypothesis, which stems from a 1998 paper by Andrew Wakefield. He was a doctor before he was stripped of his license to practice for malpractice. Of the other twelve authors of his paper, eleven recanted their names from the paper claiming a link between the Measles/Mumps/Rubella (MMR) vaccine and Autism. The Lancet, the journal that originally published the paper, published an official retraction fairly recently -- either in late 2010 or early 2011. Other theories were that thimerosal or mercury in vaccines causes Autism. There is no scientifically valid evidence to support this theory.
8. Is there a cure for Autism?
Some people, mostly the parents of Autistic people, advocate very strongly for a cure for Autism, although this also includes some Autistic people. Other people, mostly (but not entirely) Autistic people, advocate very strongly against a cure for Autism. Nevertheless, despite the merits and faults of both sides of this often heated debate, there is no currently known or available "cure" for Autism. People who claim to be able to "cure" Autism are frauds and quacks. Almost all of us, whether or not we want a cure, agree on that.
Some people do, however, claim that it is possible to "recover" from Autism; these people are usually professionals who work with Autistic children and adults. Other people prefer to discuss "passing," in which an Autistic person has learned how to appear more non-Autistic, thus "passing" for normal. The concept of "recovery" generates more controversy than the concept of "passing."
9. What treatments, therapies, or interventions are available for Autistic children and adults?
Oh boy. There is a long, long list of common treatments, therapies, and interventions people often seek or use. Here is a brief and certainly not exhaustive or complete listing:
- Speech pathology/therapy
- Occupational therapy
- Physical therapy
- Applied Behavioral Analysis
- Social skills classes
- Gluten-free/Casein-free diet
- Medications (usually for co-occurring conditions)
- Daily Life therapy
10. What services or accommodations do Autistic students often need or receive in schools?
When drafting an Individualized Education Plan (IEP) or 504 plan, consider the student's sensory, social, and communication needs in addition to any specific learning disabilities (or giftedness!) that the student may have. Consider both strengths and weaknesses. Encourage and give concrete tools for developing the student's strengths, and mitigate and accommodate the disability wherever possible.
Allow for sensory breaks if necessary. Allow a student to walk around a room during a test or to stim during potentially stressful situations. Give visual aids, both for schedules and for assignments and class material. Establish and keep a strict routine. Give specific, explicit instructions for assignments both in-class and outside of class. Create measures to prevent and address bullying. Implement a strategy for meaningful inclusion and integration of the student with the mainstream.
11. What kind of employment opportunities do Autistic people have?
Commensurate with an individual's actual abilities and skills, it depends on the level of education the person has as well as the types of support needed during the hiring process or during employment, and whether those supports are available. If an individual receives effective job-coaching, interview coaching, and support in navigating the complex social barriers of "office politics," then he or she will probably do far better than an Autistic person who has not received these same supports.
There are a large number of Autistic people who have advanced degrees but who are unable to obtain or keep a job due to severe deficits in social and communication abilities, or, in some cases, discrimination by the employer on the basis of Autism-related difficulties. The majority of Autistic adults are unemployed for a myriad of reasons.
Autistic people do well when working in a field related to an interest of theirs, not required to participate in a lot of inter-personal interactions, and when given specific, explicit goals or instructions. Autistic people have worked in offices, as professors, in the information technology field, as artists, as teachers, as engineers, as lawyers, as authors, as nonprofit managers, as cashiers, as accountants, as linguists... and more.
12. What kind of research is being done about Autism?
There are three primary types of research: biomedical research into the causes and potential cure for autism, psychological research into the characteristics of Autistic people, and social research into social issues facing Autistic people in the real world, such as housing, education, employment, and inclusion. The vast majority of research falls into the first category, with a significant amount of research in the second category. Very little research is done from the third category. You can learn more from the Academic Autistic Spectrum Partnership In Research and Education, which is partnered with Autistic adults (most of whom are opposed to curing Autism), and the Autism Research Institute, which seeks to find a cure for Autism.
13. What organizations represent people interested in or connected to Autism?
See question 21, the last two bullet points, for a list with links.
14. Who comprises the "Autism" or "Autistic" communities?
The "Autism community" is usually understood to mean anyone affected by or having a professional interest in Autism. That usually means the parents of Autistic people (and other family members, like siblings, or spouses), lay advocates, special education attorneys, researchers, clinicians, policymakers, and Autistic people. Some people make a differentiation between "Autism community" to mean everyone other than Autistic people, and "Autistic community" to mean exclusively Autistic people. The default is to use "Autism community."
15. Who are self-advocates?
Self-advocates are typically Autistic youth and adults. Some self-advocates are non-speaking and use non-traditional methods to communicate; other self-advocates are highly verbal and articulate using typical speech. Some self-advocates have extensive supportive services, whereas others are nearly entirely self-sufficient. Self-advocates have received the gamut of possible diagnoses and other labels, including low-functioning, high-functioning, Autism, Asperger's, and intellectual disability/mental retardation.
16. How should I refer to people affected by Autism?
Depends on whom you ask! Some of us prefer the terminology Autistic person or Autistic, whereas other people prefer to say person with autism. Still others use the more neutral person on the autism spectrum. The philosophies and beliefs behind the arguments for these terms center around the social and attitudinal implications of the language. People who prefer Autistic tend to see Autism as an important and defining aspect of the person's identity, whereas people who prefer person with autism tend to see autism as something that should be mitigated as much as possible and that does not impact the person's identity on that fundamental level.
The most neutral way to refer to people is to say "on the autism spectrum" or "on the spectrum." This avoids a potential inflammatory response.
17. What about all this disagreement/arguing/vitriol/tension/hate I see online?
Unfortunately, there is a lot of vitriol among the members of the Autism community. The "battle lines" usually center along the following debates or controversies:
- Those who support a cure for Autism, and those who oppose a cure for Autism
- Those who believe vaccines cause Autism, and those who believe vaccines do not cause Autism
- Those who support the work of self-advocates to represent Autistics, and those who believe that parents are the only ones who can speak for their Autistic children
- Many (but not all) parents of Autistic children (usually non-speaking), and many (but not all) self-advocates
- Those who support the use of shock aversives, and those who do not
- Those who believe an individual can "recover" from Autism, and those who do not
- Those who prefer "evidenced-based" interventions or therapies, and those who prefer non-traditional treatments
These disagreements, which are always personal and deeply emotional for all involved, often result in fighting, nasty exchanges of insults, and hurt feelings on internet forums, blogs, and social networking sites, as well as occasionally in person. No one "side" is entirely culpable for all of the hatred. I have seen other Autistics spew hatred as often as I have seen the parents of Autistic children spew hatred (which is, sadly, a lot.) It is very easy for those of us in the Autism community to be upset, personally offended, and enraged enough to want to go on a personal rampage against the other person.
18. Why do you capitalize Autistic and sometimes capitalize Autism?
I capitalize the word "Autistic" as if it were a proper adjective, for the same reason the Deaf and Blind communities capitalize the respective adjectives "Deaf" and "Blind." We do it for the same reason Blacks often capitalize that word. We capitalize it as a proper adjective or noun to represent our community and our identity.
I am inconsistent about capitalizing Autism, and do it on occasion, such as on this page.
19. What is neurodiversity?
Neurodiversity is the idea that certain conditions, including Autism, are natural variations of the human genome, and are not defects that need to be fixed. Neurodiversity says that the ability of an individual should be augmented and supported, and the disability should be mitigated and accommodated. It says that the value or worth of the individual is not less because of Autism, and that Autism is an important and valuable aspect of a person's identity.
Historically speaking, neurodiversity is an extension of the Disability Rights Movement of the 1970s, which advocates the civil rights model of disability -- that the primary and most significant challenges for Autistic or other disabled people are mostly societal problems such as non-inclusion, discrimination, or ableism.
20. Are Autistic people more likely to be violent or commit violent crimes than non-Autistic people?
No. In fact, a recent study showed that not only are Autistic people not more likely to commit a violent crime than non-Autistic people, but that the rate of violence among Autistics is lower than in the general population. Autistic people are also far more likely to be the victims of crime than the perpetrators.
21. Where can I learn more?
- To learn more about the history of Autism research, read A History of Autism: Conversations with the Pioneers by Adam Feinstein.
- To learn more about the massive increase in Autism diagnoses in recent years, read anthropologist Roy Richard Grinker's Unstrange Minds: Remapping the World of Autism.
- To learn more about the vaccine controversy and autism research, read Autism's False Prophets: Bad Science, Risky Medicine, and the Search for a Cure by Paul A. Offit.
- To learn more about twice-exceptionals (dually gifted and disabled people), including Autistic twice-exceptionals, read Different Minds by Deirdre V. Lovecky.
- To learn more about Asperger's Syndrome, read The Complete Guide to Asperger's Syndrome by Tony Attwood.
- To learn more about concerns about Autistic people and law enforcement, read Autism, Advocates and Law Enforcement Professionals: Recognizing and Reducing Risk Situations for People with Autism Spectrum Disorders by former police officer Dennis Debbaudt.
- To learn more about relationships and Autistic people, read Against the Odds: A Love Story and Autism, Asperger's, and Sexuality: Puberty and Beyond by Jerry and Mary Newport, two Autistics who married each other; Autism Aspergers: Solving the Relationship Puzzle--A New Developmental Program that Opens the Door to Lifelong Social and Emotional Growth by Steven E. Gutstein; and Strategies for Building Successful Relationships with People on the Autism Spectrum: Let's Relate! by Brian R. King.
- To learn more about Autistic girls and women, read Girls Growing Up on the Autism Spectrum: What Parents and Professionals Should Know About the Pre-Teen and Teenage Years by Shana Nichols, Gina Marie Moravcik, and Samara Pulver Tetenbaum, and Aspergirls by Rudy Simone.
- To learn more about bullying, read Perfect Targets: Asperger Syndrome and Bullying--Practical Solutions for Surviving the Social World by Rebekah Heinrichs, Asperger Syndrome and Bullying: Strategies and Solutions by Nick Dubin and Michael John Carle, and Exploring Bullying with Adults with Autism and Asperger Syndrome: A Photocopiable Workbook by Anna Tickle and Bettina Stott.
- To learn more about Autistic people, read the memoirs of Temple Grandin, Daniel Tammet, Donna Williams, or Liane Holiday-Willey. You can also see a list of and links to blogs by Autistic people on the left-hand side of Autistic Hoya.
- To learn more about self-advocacy, read Ask and Tell edited by Autistic special education professor Stephen Mark Shore.
- To learn more about employment options and strategies, read Employment for Individuals with Asperger Syndrome or Non-Verbal Learning Disability: Stories and Strategies by Yvona Fast.
- To learn more about college options and strategies, read Navigating College: A Handbook on Self Advocacy Written for Autistic Students from Autistic Adults, Students with Asperger Syndrome: A Guide for College Personnel by Lorraine E. Wolf, Ph.D., Jane Thierfeld Brown and Ed.D., Top Tips for Asperger Students: How to Get the Most Out of University and College by Rosemary Martin, Students with High-functioning Autism Going to College: A Guide for Parents by Jane Thierfeld Brown, Lorraine Wolf, Lisa King and Ruth Bork, and Realizing the College Dream With Autism or Asperger Syndrome: A Parent's Guide to Student Success by Ann Palmer.
- To read about organizations run by Autistic people, see the Autistic Self-Advocacy Network (ASAN), the Autism Women's Network (AWN), and the Autism Network International (ANI).
- To read about organizations run by partnership of Autistic people and families and professionals that promote civil rights, see the Autism National Committee (AutCom) and, for a cross-disability organization, TASH.
- To read about organizations run primarily by families and professionals or sponsored by the government, see the Autism Society of America (ASA), the Inter-Agency Autism Coordinating Committee (IACC), Autism Speaks (which I do not recommend to anyone), the Autism National Information and Resource Center (Autism NOW Center), and the Asperger's Association of New England (AANE).