What does Autistic look like? *warning ranting ahead*

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So often when I tell someone that my 4yo daughter Heidi is on the Autism Spectrum they respond with 'she doesn't look autistic'.

I want to know - what the hell does autistic look like?

Should she have a brand on her forehead? Walk around with a big glowing neon arrow that points at her and says 'autistic'?

Even worse is when they say 'she looks normal'.

What. The. F*ck?

Like that is some kind of compliment?

Perhaps I should be carrying around a list of all the people that say that, then I know who to stay away from.

Most people don't know how wide the spectrum is and can only imagine "RainMan"-It's frustrating I know- I had someone tell me recently that my Aspie son wasn't really autistic. I was telling someone else about some of the studies done and she said "Well, I don't believe that because I took psych in college" (apparently all research came to an end when she graduated 30 years ago)

Tell them that there are no defining physical characteristics of an autistic person, and that they're all behavioral and generally are invisible until you interact with them and observe how they communicate or behave differently. The things that nearly all people on the spectrum have in common are

1. Difficulty reading and processing nonverbal cues from other people, resulting in social deficits
2. Repetitive and obsessive behavior about special interests
3. Sensory integration problems

and what differentiates a hand-flapping nonverbal full blown autistic kid from some successful celebrity Aspie is the degree and severity of the symptoms. You could also explain the particular ways your daughter's symptoms manifest themselves.

And tell them that your daughter is still very young so her autistic behavior may not be as obvious, and that when your daughter gets older, her developmental differences from NT kids will be much more obvious and pronounced, so if people don't believe right now that she has autism, they can go see it for themselves later.

I think however, people's comments like "She doesn't look like she has autism" or "she looks normal" might be intended as conversation starters, in which they want you to explain more about your daughter's condition to them because they are genuinely interested. If you do a good job explaining and they still don't believe you, then just politely remove yourself from their company and don't sweat it. You can't convince everyone, some people are stubborn, but most people generally have good intentions and sometimes say insensitive things out of ignorance because they truly have never had the opportunity to learn much about autism.

They probably expect Heidi to have meltdowns, facial tics, odd clothing and hair, babbling, etc etc.

Rainman whilst a good movie...has also demonised us to an extent with people judging us by that criterion alone.

Really pisses me off.

LOL.
I used to think of it in the "Rainman" sense, too. By the time I had my first child, my now seven-year old daughter, I was an "expert" on quite a lot of child health issues. Autism, sadly, fell into one of those random holes in my obsessive self-education; when I thought of Autism, I pictured that stereotypical kid, totally mute and banging his head into a wall.

A funny story began to change all that, and nudged me onto the road that would lead to our becoming an Asperger family.

My first daughter was from my first marriage. My ex left, when she was about a year old. She was a WEIRD baby, with a hellfire sort of temper. But I was weird, too, and so she made sense to me. When people commented on her strangeness, I just wrote them off as idiots.
Then my old childhood best friend (now my husband) and I began dating. Soon, he wanted to be let in my daughter's life, and began putting his two cents in, here and there.

By the time she was 18mths, she had freakouts, quite a bit. Would scream like a banshee, scratch up her face, pull out her hair, and bang her head into the wall (guess I should have noticed that one, lol). Peyton, my eventual-husband, saw this, and gave it a "Oh, WOW."
One day, as she sat in the floor, quietly doing her thing - sorting her collection of tiny toys/objects by size, lining them up, taking them in and out of their special box, etc - Peyton casually asked what I was "doing" about her.
"Doing?"
He meant, of course, what did her doctor say, what treatments were we considering, what was her official label, etcetcetc. I was FLOORED, when he said "Tiff, she's clearly autistic." Not offended, but so utterly dumbfounded - why the HELL would he think that?
He pointed at what she was doing right then, then listed stuff like her idiosyncratic speech, obsessive tendencies, rigid need for order, extreme dislike of anyone but me, insensitivity to pain, uncommon interests, huge, horrible meltdowns in which she would injure herself and scream if anyone looked at her.

I was so amused, once I got over the shock. How droll. As I explained that she was most certainly NOT autistic, I added "and besides...NO ONE in my or her father's family has autism." At which time he chuckled, and wryly pointed out "Her MOTHER has autism."

Yeah. Imagine how that went over.
He swore I had Asperger's, which I had never even heard of. Explained that all autistics were not Rainman. Said he had friends with AS, and could easily spot it. Reminded me he'd watched me and my weirdness all our lives.
Nothing doing. I just patted his head and said "Okay, whatever."

Six years later, and I'm currently being evaluated for Asperger's. Which is just a formality, to help with our kids' diagnosis, because - as I eventually did realize - I'm not even remotely hard to peg, as having AS. Hell, I'm a walking (and often rocking, heh) PSA for it.


All three of our kids (including that eldest daughter described above) show clear autistic traits. They are all very friendly, chatty, social kids - they want to play well with others, but just really suck at it. They all share a wide pool of similar weirdness, and do appear more Aspergian than HFA.

The youngest (3yr old girl) is happy with the way she is, and so are we, so we're not having her Inspected, just yet. My 7yr old daughter is now having more social skills-related trouble in school, and a host of issues with her high level of distraction, poor executive functioning, and need for visual learning. Our 4 1/2yr old son is...well, he is very much an AS boy, heh. And hyperactive, to boot. While the girls can pass as normal, at times, he never can.

So, we requested both Gifted & ASD evaluation, through our school district, for the oldest two. At first, the district people listened, and took the ASD very seriously, while seeming skeptical of their "gifts." Then, they IQ tested them.
BOOM! Both kids were obviously strongly Gifted. They gave our son the Denver II (which should NEVER be used for ASD screening) and pronounced him normal. Except, they noted that he did not respond to his name being called, was hyperactive, and showed flat-affect in his voice. Leading us to wonder "Just what the hell WOULD make them think he had Asperger's?" He was unusually focused and cooperative, that day, but he was still full of beans and showing plenty of AS traits.
With our daughter, they did not even do the half-assed developmental screen they did with our son. The psychologist just LOOKED at her, during IQ testing, and decided "she does not appear to be autistic."
REALLY? Cause I would have thought the distractibility, noted problems with verbal instruction, and the fact that she scored 27 points higher, in Performance IQ over Verbal IQ would have been a pretty serious hint, lmao.

The final verdict (really-seriously) was that, and I quote: "These kids are sooo smart; you just wouldn't see that, with autism."

And with that, we said "OKTHXBYE" and began the process of getting evaluations by actual medical professionals. Currently, our son is going through testing with his pediatrician and a pediatric neurologist, while I am getting evaluated through the psych dept of a local university. The hope being that, if the two Weirdest among us get diagnosed first, it will make diagnosing the girls easier.

THEN, we'll go back and start educating the school district. They really were very nice, so it's more an issue of just plain old Ignorance. But again...I don't have a whole lot of room to talk, there.
Still, I can't wait 'til our son starts pre-K, in a couple months. Hubby and I are taking bets on how long it takes for his teacher to call her first PTC and start talking Special Services. Our son's brilliant, and truly delightful, but...SO obviously NotRight, lol. People always give us sad, "Oh, the Poor Dear!" looks, when we're out in public with him.

Meanwhile, I am sorely tempted to start attending PTA meetings totally ungroomed, rocking and blinking at lights, and randomly screaming when people touch me. Wouldn't do much to educate, but hey...sometimes, ya gotta use broad strokes.

For me, "autistic" looks like having people think I'm about to rip someone's head off when I lose what little expressiveness I have when I get worn out from socializing. People ask "what's wrong" and I say "I'm listening. I don't feel like saying anything right now!". Drinking doesn't help with these traits, but I enjoy it anyway. It also means being called ret*d and being second guessed by self and others. It means requiring people to say what they mean and mean what they say, and wondering why there's so much dishonesty in the intent of even university research programs. It means saying too little or too much, and putting people off either way, misjudging ages of people and at times not even being able to recognize them. It also means having people read secondary meanings into the things I say, which disturbs me and seems foreign to me. I think "did I really say that?".

[youtube]http://www.youtube.com/watch?v=AQlf0L0yDBk&feature=related[/youtube]

Most people (and I have to admit that before reading about apreger's I did myself) think that autistic people looks like charlie from the black balloon movie.

What you can do, instead of saying that your kid is autistic explain that your kid "has asperger's wich is a neurological condition related to his high intelligence, that makes him unable to have an understanding of social situations inspite his intellectual capacities."

Most people don't even know what autism is about, they will never link this to autism. but in case some one relates it you say "yes, like a very mild autism. This is people with normal capacities who are seen as eccentrics."

By the time you say asperger's people block the topic in their mind (cause it's such a difficult name, they think they will not understand) and they will not reffer to your kid as the autistic kid or to you as the mother who invented his son/daughter has autism to force him go to the schrink.

Good luck!

John Elder Robison had a relatively recent insightful post on this topic on his wonderful blog "Look me in the eye."


Entry and comments are well worth reading. He attracts thoughtful readers.

Last edited by riverotter on 22 Jun 2009, 3:41 pm, edited 1 time in total.

Autism has no one look,every single person on the spectrum is a representation of what Autism is,if only the ignorant understood that.
The national autistic society staff am know,and many autism experts in the world state that there are no two autistics alike,so how is it an entire group is expected to show Autism in the same way?

The stereotypes they use to base their views of autism upon,leads to aspies and HFAuties often being left out as part of autism,and for those of us on the other end of the spectrum,are expected to be profoundly autistic,or are in their view not severely autistic at all.

If would like to have something to say back to people who say own child is not autistic/does not look autistic,what about something like:
-that know a bunch of normal people,and they happen to look nothing like them.
-go and complain to the doctor who had diagnosed her,as are obviously more experienced if can undiagnose someone based on a quick look.