Tag Archives: awareness

Autism Awareness

So there is a lot of talk about how we need to go beyond autism awareness and into autism acceptance and autism respect. I TOTALLY AGREE with all that. So much. Acceptance is super important.

But then I see people spreading all sorts of misinformation and I realized that being aware that there is a thing called autism does not mean being aware of what autism actually is. I see parents talking about their difficult experiences with their autistic children, and then they cite a bunch of things that are not autism. So here is my quick, messy, off-the-cuff post for autism awareness, talking about what autism is and isn’t.

Autism IS a developmental disability. It involves all sorts of things that are difficult and challenging. When I speak of autism acceptance, I want people to accept that we need help and accommodations, and I want people to work towards helping us. Autism is primarily defined by social difficulty – that is the common factor. It can also include clumsiness, developmental delays, executive dysfunction, and other things.

That said, there are many things that autism is NOT. Autism IS NOT anxiety. Autism IS NOT depression. Autism IS NOT epilepsy. When autistic people are abused, it is the fault of the abuser, not the autism. When autistic people are bullied, it is the fault of the bully, not the autism. Yet somehow, over and over and over again, people talk about these Not Autism things when they are trying to explain why autism is bad.

So just to be totally clear, STOP BLAMING AUTISM FOR TOTALLY SEPARATE THINGS.

Now, to look at this more personally, I am autistic. I have fairly serious depression and anxiety. It is true that depression and anxiety often have a higher incidence rate among autistic people. Of course, they also have a higher incidence rate among people who are female, which I also am. It would be utterly and completely absurd to blame “femaleness” for depression and anxiety, or seek a cure for “femaleness” because things like depression, anxiety, abuse, sexual assault, etc all have a higher incident rate among said female persons. Yet somehow, so many people do exactly that when it’s autism. Then they wonder why we say they are demonizing autism. Just to be clear, it’s because they are blaming autism for things that are not autism, and are not the fault of autism.

Finally, I have seen people say we are terrible for trying to focus on the strength of autism. On things like ability to focus, ability to take in large quantities of information and process that information over time, ability to identify patterns, high memory recall, ability to notice details, etc. Yet people try to silence us for speaking of that, insisting the conversation focus only on how broken we are. THEN, of course, they will go on to talk about how we have a low employment rate.

Which is true, we do. Except it seems to me that getting word out that we have strengths and convincing employers that autistic people are worth hiring is a great way to address the employment problem. As such, I can see no sense whatsoever in all these attempts to silence conversation about our strengths. Unless, of course, your goal is to shame autism, spread misinformation about autism, and generally talk about autism as some terrible, horrible thing. Usually bringing up all those things that are Not Autism in the process.

So yeah, let’s have a little more autism awareness. Including awareness of what it is NOT, and awareness of what we can contribute when our difficulties are accommodated.

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It’s that time of year again…

Autism Awareness day/week/month/whatever.

Or is it Autism Acceptance?

Or another word that we think might be better that also starts with A, because apparently alliteration is super important in our catch phrases?

I normally just stay quiet around all this. There’s just too much bickering around what word to use and what organization to support and the parents vs. autistic adults thing seems to get thrown into even sharper relief and I’m just not really sure what we’re trying to accomplish. I guess asking for a consensus is a bit much, but mostly I just try to duck under something safe and stay away.

Thing is, though, I’m not actually against the idea in principal. As absurd as it seems, I actually recently learned that there are still people out there in the western world who have never heard of Asperger’s Syndrome. Even if we’re only working for awareness in North America and Eastern Europe, which is a pretty narrow focus right there, we’re not actually done.

Though then I wonder why autism is so special that it gets the awareness month when there are so many other, debilitating yet almost entirely unknown health issues out there that have people struggling for awareness in a very real way. Sometimes it feels like, as a society, we’ve really focused on autism, but it’s also possible that I have some confirmation bias here, since I rather surround myself with autism-related things. I also sometimes worry that we’re lumping ALL developmental delays or disabilities in with autism, and I’m not sure that’s a fantastic thing to be doing.

Point is, I always get weird mixed feelings this time of year. I’m not sure if I want to try to bring some poignant, heartfelt words to the table only to see them lost among all the other poignant, heartfelt words and the bickering and the “I’m always aware!” and everything else that happens, or if I just want to avoid it all.

So as I do, I’m writing about those mixed feelings. This is what I bring to the table – myself, my ambivalence, my thoughts, and my words. I do have a metaphorical horse in this metaphorical race, so maybe staying out of it entirely isn’t quite the right answer for me. So instead I participate in the odd, not-entirely-in-it way that I do.

Jumping a bit, this month also gets me thinking about autism tattoos. I do have tattoos and sometimes I think about getting an autism tattoo. Except I intensely dislike the whole puzzle thing and I refuse to get a tattoo that uses it. Which leaves me wondering – what else is there?

No really, do you know anything? Because I sure don’t.

Anyway. I rather doubt I’m going to be acknowledging autism awareness/acceptance/other word that starts with A month beyond this post. When it gets really loud I lose my ability to make my voice heard, and in the autism world this month sure is loud. Loud and messy and not very friendly to my brain. Which I guess is not that surprising, in a disjoint “community” that seems to bicker as much as it does anything else. Maybe someday, when we’ve managed to mend some of these rifts, it will be different.

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