For those who are new to the Autism/Autistic community, or who are interested in learning more. Here is a list of frequently asked questions about Autism. We also try to provide a list of some online resources that may be of use to you. Inclusion of a site or resource on that list does not imply endorsement, agreement, or support of any kind by PRAGNYA.
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.
What is Autism?
Autism is a neurological, pervasive developmental condition. It is a disorder. It is usually considered a disability. 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.
What is Autism Spectrum Disorder? ?
Autism, or autism spectrum disorder, refers to a range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication, as well as by unique strengths and differences. We now know that there is not one autism but many types, caused by different combinations of genetic and environmental influences.
The term “spectrum” reflects the wide variation in challenges and strengths possessed by each person with autism. Autism’s most-obvious signs tend to appear between 2 and 3 years of age. In some cases, it can be diagnosed as early as 18 months. Some developmental delays associated with autism can be identified and addressed even earlier. Autism Speaks urges parents with concerns to seek evaluation without delay, as early intervention can improve outcomes.
What is an Inclusive society?
An inclusive society means that all children can become all that they can be; an inclusive society seeks to eliminate child poverty; income inequality has the potential to erode inclusion; public policy must address many dimensions of inequality.
What are Stims or Stimming?
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.
How do people on Autism Understand Language?
Autistic people tend to understand language literally and explicitly. Idioms are difficult for them to understand. They tend to be very truthful or honest, sometimes even to the point of extreme bluntness. For those who have high levels of verbal abilities, the social or pragmatic aspect of language is extremely difficult for them to learn -- and it has to be taught, It is not intuitive, automatic, or natural. They 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.
Why do some people with autism fixate on things and routine?
Autistic people 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.
Can people on the Autistic spectrum live independently?
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, they share many similar characters, but each have their own personalities, interests, wishes, hopes, dreams, and fears. We also have different neurological and psychological profiles.
What is the Autism Spectrum and ASD ?
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. Autism Spectrum Disorder is often abbreviated to ASD.
If you have a child with autism you have likely heard of the DSM-IV. The DSM-IV stands for the Diagnostic and Statistical Manual-Fourth Edition (DSM-IV). It is published by the American Psychiatric Association and it’s the primary manual used by clinicians to provide a formal diagnosis of autism and related disorders. The manual outlines the specific criteria that must be met to receive a diagnosis, as well as the corresponding label and numerical code that is sometimes used by insurance companies to identify the diagnosis. The main purpose is to provide standard guidelines for clinicians to use for the diagnosis of different psychological disorders and conditions.
The DSM-IV currently identifies a set of Pervasive Developmental Disorders that are considered “autism spectrum disorders” (ASDs). These include Autistic Disorder, Asperger’s Disorder, and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS). The DSM-IV has been under revision for several years and a new edition, the DSM-V, will be released in 2013. Significant changes to the criteria and categories of ASDs are planned for the new edition. As a parent it is important that you be well informed, so we will review the proposed changes and their possible implications.
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.
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.
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.
Do Autistic people have empathy?
Yes, they 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. They may 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), thay may not recognize when to express empathy for someone else, nor will they 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.
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.
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.
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.
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."
What treatments, therapies, or interventions are available for Autistic children and adults?
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:
Applied Behavioral Analysis
Social skills classes
Medications (usually for co-occurring conditions)
Daily Life therapy
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.
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.
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.
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.
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."
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.
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.
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.
Additional Resources :
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), the Autism National Information and Resource Center (Autism NOW Center), and the Asperger's Association of New England (AANE).