7 Things You Need To Learn About Autism
7 Things You Need To Learn About Autism published by Evanvinh
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Posted on 2016-04-07
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By Emily Willingham
Autism is not a mental illness or disease
It’s been included in the diagnostic manual that some clinicians use: The Diagnostic and Statistical Manual of Mental Disorders. So if you think it’s a mental illness, that’s understandable. But it’s not. It’s a developmental condition, one that is rooted in how the brain organizes and takes shape during embryonic and fetal development. Autistic people are born, not made.
Autism is not a “person-first” kind of disability
The golden rule of disability language has been that the person should come first in phrasing, preceding the condition that disables them. For example, people who have diabetes aren’t “diabetics” in respectful usage but instead are “people with diabetes.” But developmental conditions and those related to the brain are a trickier territory. With a nod to Francis Crick, if your brain is you and you are your brain (with some guidance from your endocrine system and your environmental inputs), then how appropriate or even rational is it to separate the person and the condition? Many people want to say “person with autism,” but to a lot of autistic activists, that phrasing is silly, like saying “Person with Brain.” For them, autism and brain and themselves are all one and the same. Autistic activist Jim Sinclair wrote in 1999about instead using “identity first” language. The Autistic Self Advocacy Network also features an essay by autistic activist Lydia Brown, elaborating the concept. That doesn’t mean, of course, that every autistic person prefers that phrasing, and it’s always best to go with what any individual with a condition expresses as their preference.
Autism is not a childhood-only condition
Although most studies treat autism as a childhood condition (a simple comparative PubMed search turns up about three times as many child-focused studies as adult-based research), it’s not. It’s lifelong. As Steve Silberman wrote in his blockbuster book, NeuroTribes, about the history of autism, autistic adults have always been around. They’ve just been hidden away in institutions, labeled with ever-changing diagnostic terms, and often dehumanized. That’s starting to change, but more needs to be done because…
Autistic adults struggle–they struggle for jobs, they struggle for health, they struggle for recognition, and they struggle to be heard
What research does show is that autistic adults are unemployed at greater rates than the general population, die sooner, and can struggle through almost a lifetime before getting an accurate diagnosis and the supports they need. If we focus more on helping autistic people and less on chasing down cures and ineffectually switching to blue lightbulbs, a lot of that could change.
Autism involves disability, but the disability often relates directly to a non-accommodating environment or inflicted intervention
Autistic people will tell you where and when they feel disabled in a world of nonautistic people. Much of their feeling of disability relates to communication gaps between autistic and non-autistic people and struggles to organize and function in a world that lacks accommodation. Other areas of disability become apparent when the attempted interventions or accommodations are more suppressive than supportive, more harmful than helpful. Two examples are an insistence on eye contact as a way of expressing aural attention and an insistence on “quiet hands,” even though flapping or other stereotyped hand motions are, for many autistic people, an outlet for strong emotions from joy to anxiety.
The terms “high functioning” and “low functioning” are often misapplied in autism
Autism is not a diagnosis that reflects cognitive function. It reflects instead what being human intrinsically is, but often magnified: difficulties with expressed (and sometimes receptive) language and executive function, the use of motor and vocal “stims” to self-regulate, sometimes-profound sensory differences and what can be an exquisite and refined attention and awareness that aren’t typical of non-autistic people. The diagnosis of autism does not, however, include specifiers about cognitive function, yet most people who apply function terms to autism are referencing cognition alone. Unless the autism-related “function” in question references the disabilities that are autism-specific–like the effort to manage overwhelming sensory inputs or interpret nonverbal cues–then the terms are irrelevant at best and problematic at worst.
Autism is largely a disability of communication with nonautistic people, yet little research has focused on how to bridge the two communities
The greatest gap for autistic people, especially those who are nonspeaking, is that non-autistic people have trouble understanding their needs, feelings and ideas, in part because nonautistic people rely so much on rapidly processed spoken expression. Some autistic people will develop their own lexicons of gestures and echolalic phrases, among other adaptations, to try to communicate with non-autistic people. While that struggle has been going on a long time, the non-autistic population has not done nearly as much to bridge this communication gap so that they can better understand what autistic persons are trying to say. Instead, money has gone down a million rabbit holes, dead-ending at a million cul de sacs and turning up nothing useful. That’s a shame, but it’s also something we can change.
Did you already know these things about autism? Don’t just be aware. Really show you care. Let others know because misconceptions matter, and information and understanding are the needed ingredients for acceptance.
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