About Autism

Academic Jargon Explanation:

According to the DSM-5, the diagnostic criteria for Autism Spectrum Disorder are:¹

1. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history

   1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.

   2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.

   3. Deficits in developing, maintaining, and understand relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

2. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):

   1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic phrases).

   2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food every day).

   3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).

   4. Hyper- or hypo-reactivity to sensory input or unusual interest in sensory aspects of the environment (e.g. apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

3. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).

4. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

5. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.

Plain English Explanation:

The way doctors figure out if someone is autistic or not is by checking for these things:

• Difficulty in social situations, not just with one setting or person, but as a pattern for a long time. This can show up as not seeming interested in interacting with people and not opening up to others. It can also be awkward ways of standing, moving, and talking that most people find difficult to understand, often just not changing their body or voice as they talk and appearing emotionless. The last example they usually look for is when someone has a hard time adjusting to social settings and making friends, more so than is expected for their age group.

• Other than social difficulties, autistic people also tend to focus on particular subjects or actions, sometimes to the point that they neglect other parts of their life. This can be the stereotype of rocking back and forth and waving hands around, but can also be just about any motion repeated over and over for its own sake, including repeating sounds over and over. This is known as stimming to the autistic community.
  Another way autistic people might focus on a particular thing is having a schedule or routine and being very upset if it breaks. Often autistic people will want to do things the same exact way every time. They might eat the same meals every day, or insist on the same route driving to school, or panic if a step of their morning routine is out of order.
  Another main way autistic people focus on things is having a particular interest they put above everything else. Some autistic people might have an interest in video games, or physics, or sewing, or dance. The type of interest doesn’t matter, only that they put a lot of attention and time on that one topic or activity. This can be really useful for someone who makes a career out of that interest, but it can also lead to negative consequences like getting so absorbed in the topic they forget to eat or sleep or, more commonly, simply don’t get their school work done because of it.
  The last example is a bit weird because it has both extremes at once. Autistic people often have sensory sensitivities, where a certain sensation (light, sound, touch, smell, taste, anything can be a sensitivity), feels particularly intense. This can be really unpleasant and actually feels like physical pain to some autistic people. On the other hand some autistic people don’t notice some sensations. They might not notice getting a small injury or an intense smell.
  Another sensory difference is autistic people sometimes look for certain sensations. This can be staring at a light or a fan, petting a certain texture, or any sensation. It can seem almost like an obsession or like they are hypnotized by it but usually it’s just satisfying in a harmless way.

• Autism is a lifelong experience. When trying to figure out if someone is autistic, doctors will look for evidence that these behaviors have been present for their whole life. Some autistic people learn how to hide them so it makes sure to mention they might not “seem autistic” all the time, but that doesn’t mean they aren’t autistic.

• In order to be a diagnosis, something that can be used to get accommodations or treatment, the doctor has to show that these behaviors are making life difficult for the autistic person. Usually this is because people expect everyone to act “normal” and autistic people struggle to follow that.

• Lastly it just says that to be autism, it has to be the best explanation. If there are other reasons for these behaviors, those might be considered instead.

Academic Jargon Explanation:

Consult a professional for a neuropsychological evaluation and discuss accommodation needs.

Plain English Explanation:

Make a doctors appointment for your child and tell them why you think they might be autistic (you can use the “what is autism” for reference). Ask for an appointment with a specialist. They’ll probably refer you to a doctor who focuses on autism in particular who will talk to your child, ask them questions, and give them puzzles to do in order to find out if they’re autistic. If the doctor does think your child is autistic, you’ll want to have a conversation about how to best help your child succeed in school and life.

Academic Jargon Explanation:

Neurodiversity is a social movement that is influencing the research methods used to study and understand ASD and other neurocognitive disorders. The neurodiversity perspective posits that autism is not a social cognitive deficit in the autistic individual, but rather a mismatch between the cognitive processing styles of neurodiverse and neurotypical individuals. Autistic people are labeled as the ones with the deficit because society is dominated by allistic (non-autistic) people. This movement also emphasizes the variety of strengths associated with neurocognitive differences, and aims to improve life for all people by embracing the differences between us.^{5, 6}

Plain English Explanation:

Neurodiversity is a way of thinking about autism and other “mental disorders” that sees them as an important form of diversity instead of a problem. It mainly focuses on ADHD and autism, but things like depression, anxiety, and schizophrenia can be included too. In a neurodiverse perspective, autistic people aren’t bad at social situations, they just react to them differently. The reason they’re seen as bad at them is because their way of doing things isn’t the most common or “normal”. There’s also some potential good things about autism that people don’t mention a lot but neurodiversity tries to focus on them.

Academic Jargon Explanation:

The autistic community advocates against a cure largely on the basis of identity. As ASD is considered to impact all areas of development and functioning, autistic people view it as a fundamental part of themselves and their identity. This would mean a cure would erase who they are. There’s also the argument that a cure is unnecessary as autistic people can thrive and live happy fulfilling lives in the proper environment with proper support, and their autistic qualities may be used as strengths. Many advocates also indicate that a cure is not a realistic goal in a disorder as complex and genetically based as autism, and in the meantime false cures can be touted to scam desperate families, and frequently cause irreparable harm to the autistic children.^{7, 8}

Plain English Explanation:

Autism affects every part of a person and shapes their lives. Taking it away would be like taking away their identity. That’s why autistic people often don’t want to be cured. Autistic people don’t think there needs to be a cure, because with proper support in the right environment, autistic people (of all abilities) can live happy and fulfilling lives. Lots of autistic people also find their autism to be helpful in some ways, like hyperfocusing on a topic they make into a career, or noticing details most people miss. The bottom line is a cure probably can’t happen anyway. Autism isn’t just one gene or one chemical imbalance. It’s super complex and varies so much person to person that a cure is unrealistic. People still try to make money off the idea though, and sometimes the fake cures they sell can hurt the autistic people who take them, and are a scam for whoever buys them.

Academic Jargon Explanation:

The autistic community as it is referred to here will primarily mean the autistic people who do activist work for autism and/or participate in social media discussions and activism around autism. The academic community refers to the institutions and organizations that direct the funding and guidelines for conducting research, not any individual researchers. I specify this with respect to the autistic researchers that work within academia and push for change within that context.

The autistic community mobilizes largely online and the discussions and ideas evolve (relatively) quickly and become widespread quite rapidly. The academic community revises its guidelines over decades and only when there is a preponderance of relevant data that has been analyzed and published and replicated. This is the fundamental divide between the two communities.

The autistic community has largely settled on a preference for “identity first language” which means using “autistic person” instead of person first language, or “person with autism”. The academic community largely uses “person with autism” because person-first language is the APA standard for referring to any disability or diagnostic condition. This is likely to change in the years to come for communities like the autistic community and the Deaf community, who have advocated heavily for identity first language.

Other issues, including the deficit model and social model of disability also sow discontent. In the meantime, the slow march of academic change lags behind the growth of ideas in the activist sphere, and that leads to some tension and conflict.¹⁰

Plain English Explanation:

Autistic people that are really involved in discussions and activism online are able to talk in real time and work out issues and come to conclusions pretty fast. At least, fast in comparison to academia. All the scientists writing their papers get paid by an academic organization, or write their paper by the guidelines of an academic organization, like the American Psychological Association (APA). Issues like how to talk about autistic people can be split in opinion between those groups.

The APA is slow. They only change their guidelines if there’s lots of papers showing they should, and that takes years or decades. The autistic community online has come to a pretty unanimous conclusion that they want to be called by “identity first language” which would be “autistic people” not “person first language” which would be “people with autism”. Some autistic people don’t care, and some actually want person-first language instead, but the APA uses person first as a general rule. They use person-first language for anyone with any sort of disability or condition.

In most cases that works, but some disabled communities (autistic and Deaf mostly) have been trying to change that for their particular conditions. The activists are asking for identity first language, and they want it now. The slow way the APA (and the World Health Organization) works, means it’s gonna be a while before that happens.

There are lots more issues that this difference in speed affects. Just one is that academia still usually looks at how autistic people fail to live up to standards of “normal” and autistic people would rather they see it from a neurodiversity perspective.