Nothing About Us Without Our Parents

There are three classes of people when it comes to autism – autistic people themselves, parents and caregivers of autistic people, and “normal” people.

Of course the “normal” people typically get to dictate how things work – after all, they beat out the other two groups by sheer numbers.  Just read a letter that was sent to a parent of an autistic kid.  It starts by saying:

I also live in this neighborhood and have a problem!!! You have a kid that is mentally handicapped and you consciously decided that it would be a good idea to live in close proximity to a neighborhood like this????

The grandmother’s crime (the autistic boy was with his grandmother) was living in a neighborhood and allowing her grandson to visit.  The letter was signed by “One pissed off mother!!!!!”

Now, we all know that most people aren’t the assholes that this “one pissed off mother” is, and we can even see that in the reporting of the community response to the incident. But just because most people are decent doesn’t undo the damage from the assholes. Every time a mother or father of a kid who makes strange noises, does things strangely, has meltdowns, or just somehow otherwise acts different goes out in public with their kid, this mother or father has to fear how people will react.  They have to ask, “Will I meet an asshole today?”

Heck, even a local police chief may be the asshole, should your kid cry in a restaurant.

Often, parents and caregivers get dirty looks when they go out in public with their kids. Others say, sometimes subtlety, sometimes not-at-all-subtlety, “You’re a bad parent.”  After all, a good parent would have normal kids.  Kids who don’t do things differently, don’t make noises, don’t have meltdowns.  It’s, in a sense, an extension of the refrigerator mother theory of autism – autism is the fault of the parents.  If the parents were good parents, supposedly their kid would be more normal – that’s the persistent message to parents of autistic kids.

So, it’s not surprising that some parents have latched onto nearly every possible theory to explain autism, at least theories that don’t blame them in any part (even passing on genes is seen by some as blaming the parents). The origins of the Autism Society of America are based in this – find the true causes of autism and stop vilifying parents! In a sense, much of the advocacy work was advocacy work on behalf of not the child, but simply that the parent wouldn’t be blamed for the child’s behavior.

Certainly, that work is important, and, too often, it is ignored by autistic self-advocates today. Your parent shouldn’t be blamed for your autism! And, largely thanks to parent advocates, they generally aren’t (although their work clearly isn’t done yet – assholes persist).

But, the voices of parent’s aren’t the voices of the people most impacted by autism. Those voices (and other communication) are those of autistic people. We weren’t even included in the membership or leadership of the early autism organizations (and we lack this in many of the current ones). No, parents spoke for us.  Parents might have been treated like crap by society, but they still had more status than we had. If parents were the second class, we were the third class.

Even today, the idea that we should be the key stakeholders in policy decisions about autism is well beyond simply being controversial. It’s unheard of.  While the disabled community has the mantra, “Nothing about us without us,” the implementation of this mantra is typically, “Nothing about us without our parents.”

We see the impact of this even today. When a parent attempted to kill her autistic daughter recently, the press and public expressed sympathy.  Oh, not sympathy for the victim. No, sympathy for the mother. It’s a lot easier for most adults to put themselves in the shoes of the mother than the autistic child. Paula C Durbin-Westby talks about this in her blog.

Even when murder isn’t involved, it affects us every day. Just as the parent has to worry about the asshole, so does the actual autistic person. Most of us have had horrible childhoods. We know how autistic kids are treated. And it’s even worse than how parents of autistics are treated.

But it doesn’t stop when the child leaves the home (and, yes, the vast majority of autistic people do leave the home). If you think a parent gets a dirty look when a child has a overload in the grocery store, try being an autistic adult having a overload in public. We get the blame. Fully and completely. We may end up arrested or otherwise have freedoms removed from us. We’ll probably be asked to not come back to that area. We’re simply not wanted. At all. People can sometimes understand a kid doing this, but they don’t understand an adult that can’t cope with too much input or stress.

And just try – as an adult with autism – to suggest that autistic people should define laws and rules regarding autistic people. No, we can’t do that. We’re just one of the stake holders – and an optional one like that. We’re used when it’s convenient to someone else’s message. But our voice is not all that important without someone else saying it is. After all, we’re just the people affected by these things, we’re not parents or caregivers (never mind that some of us also are parents or caregivers of autistic people too!).

So while I don’t support the second class treatment that parents of autistic people get, and will do everything I can to support parents in ridding the world of that prejudice, it can’t stop there. I’d like autistic people to at least one day get second class status, not the third class status we have today. I’d like one day for us to get treated just as badly – but not worse – than parents of autistic people.

Even better, I’d like all of us to be treated decently. Parents shouldn’t be scared to go out in public with their child. And autistic adults should have a key say in how autistic people are treated (and, lest I leave out a disclaimer, I’m not saying parents shouldn’t have any say, particularly when it comes to being a voice for their child). We shouldn’t just be an optional voice or an after thought. We should be at the table when you’re first thinking of discussing these things.

Equally, I’d like to see a place where our murderers don’t get more sympathy than we, ourselves, do. But maybe that’s still too much to ask. So I’ll settle for second-class status right now.

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