My Date With Autism Live!

 I posted a comedy bit earlier and this show features some of the jokes -I think.

A Brief History of Autism

    We hear alot about autism but chances are most people have only a faint idea about it. It's history is littered with misconceptions, misdiagnosis and mistreatment of people so let's start at the beginning.

    The term autism ( meaning "the self" in Greek) was used in the 1940's by Dr. Leo Kanner to define the condition of the children he treated. His definition was very narrow, insisted it started very early and required intense intervention and never changed. Meanwhile, Hans Asperger, a pediatrician in Vienna, described autistic like children in a 1944 paper that was discovered in 1980 by researcher Lorna Wing (who coined the term).

    Asperger's Syndrome got bundled with other similar symptoms in the Diagnostic and Statistical Manual (DSM) and the umbrella term Autism Spectrum Disorder (ASD) was born. 

     Despite decades of research and study there is still no universal agreement on a diagnostic criteria or a general theory of what causes it. Everything from "refrigerator mothers", vaccines, diets, to genetics have been offered but without much (or any) evidence to support the hypotheses. Autism, it turns out is a very subtle thing to spot.

     Until recently, diagnosis and treatment focused on boys more than girls. There's a lot of social politics about how a child develops. Boys are expected to noisy and active, if they aren't, parents and doctors rush in and try to fix the problem. Girls are supposed to be shy and introverted-an endearing quality. (In my case it was Lisa is a temperamental pain in the ass- not desirable behavior for a child.)

   "Autism is much tougher to spot in the girls," said Danuta Bulhak-Paterson, a clinical psychologist who wrote the book, Aspie Girl. "They have a very different presentation from boys on the spectrum." When they are diagnosed they are offered therapy and education geared to males because the data derived is almost entirely from studies of males. Females are diagnosed later due to misinterpreting or missing the symptoms.

     "Everything we thought was true of autism seems to only be true for boys." says Kevin Pelphery a professor at the Yale Child Study Center. “Almost overnight, we went from a couple of people talking about sex differences to everyone studying this as a major factor in the field,”

 Even he did not recognize the condition in his own daughter, until she was diagnosed at five. *

     What most people know about autism they gleaned from movies, TV and a few articles or interviews.  The image from Rainman for example, is an exaggeration of savant behavior for dramatic affect.

    Among the most common myth is that autistics prefer to be /play alone. No, in fact a significant number of ASD  desire social interaction but find the nuances of socializing difficult and therefore avoid it. Another one is that autistics lack empathy. ASD are often accused of not responding or showing emotion correctly, causing confusion and horror to the neuro typical. Those with ASD often feel too much. Overwhelmed by emotions, they will shut down as a way to contain or control them. Don't confuse lack of response for lack of feeling. People in shock often react that way and can be misinterpreted as apathetic.

       Many parents were told that their child is a lost cause. They will never progress past their infantile state and might as well be institutionalized. Numerous books have been written about the advocacy of parents who knew their kids aren't retarded vs. the completely wrong assumption of experts. As many researchers discovered, autistic behaviors can be modified or reduced with early education and therapy. Many autistics have partners, graduate from college, marry, have children and careers.

    The more ASD is studied the more we learn that it's a complex wiring of the brain not a defect.

 

*Sources: Scientific American  "Autism-it's different in girls"  Maia Szalavitz  March 1, 2016

The Atlantic The Invisible Women with Autism  Apoorava Mandavilli  Oct 22, 2015)

autism, ASD. Asperger's syndrome

 

My Advice About Autism

           Being an adult with autism is survivable yet endlessly frustrating. Getting neuro typicals trained to the point where we don't have to bend over backwards to act normal enough to please them is a daily problem.

            No one would ever say to someone in a wheelchair to just try harder, now get up and walk. Yet I've heard similar well meaning but useless advice most of my life concerning my invisible disability.

            This is for someone with autism, if you know someone close to you who has autism or someone wishing to know more about the condition.

             If you are autistic, you will have to educate those around your limitations, fears and perception in order to be accepted. You will have to guard against saying, doing and reacting the wrong way constantly. You will have to learn to make small talk, introduce yourself into a conversation correctly. Go with being formal rather than chummy when dealing with new or casual acquaintances. I advise reading etiquette books to decode the rules to social interactions. Remember that not everyone shares a laser like focus in -fill in the blanks. Set a mental timer to stop speaking and give others a chance to reciprocate in conversation. Don't be afraid to ask for assistance when you're not sure.

            For the neuro typical, social skills are a given. Understanding body language, verbal tones and subtext is often lost on us. Please don't give us contradictory or vague "just do what you think is right" directions, we aren't always capable of figuring out what to do on our own. Please don't scold us like children when we have a messy, explosive meltdown. We know we're out of control but can't help it. Simply assure us it will be alright and ask "what can I do to help?" This will help us settle down. Understand, that handling day to day adult responsibilities can be a monumental task when we have to carry around a mental instruction manual on how to behave.

            We are doing the best we can, if we say "I can't do that," believe us, it's not just lack of confidence. What may be obvious and simple to you, may not be to the literal minded autistic.

            If you suspect someone you know may be autistic, research the criteria and politely present them to the person. If they aren't on the spectrum, at least both will get an education on what to look for. If they prove to have ASD, they will be grateful and relieved to know why they don't fit in. You will save them a lot of grief. I wish someone, anyone had said something to me earlier. It would have made my life easier.           

            Autistic people are not stupid, scatter brained or emotionally cold. Many are quite smart, aware and feel deeply. What we lack in tactful social skills, we make up for in other areas. Cultivate and encourage those skills, let us see how those skills can be valuable. We crave acceptance for who we are more than anything. Expressing empathy can be a mystery to us but we do care deeply. Neuro typicals and autistics need to find a way to communicate that.

            When you see an autistic sitting by themselves, don't assume they prefer to be alone. More than anything we want company but can't always express that need. You may have to drag us into an activity but we will appreciate the effort.   

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