As a father to 3 boys with Autism, I have a vested interest in seeing the Autism Community succeed in supporting each other, spreading Autism Awareness and not only preparing our kids for the world, but also preparing the world for our kids.
I’ve noticed something that I find very concerning and I thought that I would use my blog as a platform to express that concern.
Something that I find really concerning, is the current status of at least some of the Autism Organizations out there. These organizations are supposed to be here to help people with Autism and their families. I’m not sure that they are doing what they should be doing or rather could be doing to help improve the lives of real life people…..
As an adult that does not have Autism, raising 3 boys that do, I can say that one of the most beneficial things to come my way have been the friendships I’ve made with Adult Autistics. Talk about an amazing source of insight and advice…
Not only are they awesome people and great friends, but they have been able to help me better understand the how’s and why’s of my own kids on the spectrum.
I think it’s commendable that these organizations try to help, I really do. That being said, I think they are missing out on a great opportunity to better understand the people they are trying to help.
Let me say this another way. If you are going to try and help people with Autism, wouldn’t it make sense to tap, utilize and even employ people with Autism for guidance, insight and advice? These organizations push other employers to hire people with Autism, why not lead by example?
We have a large and ever growing population of Adult Autistics in the world that are ready, willing and able to help. This help is invaluable and comes in the form of experience, insight and much more. We simply have to recognize that they exist, be willing to give them the time of day and take them seriously.
Seems pretty simple right?
I think it’s egregious and even a bit arrogant that it’s sometimes presumed that we know more about what people with Autism need or want than they do.
I know that many of us are parents to a child with Autism. It’s easy to get caught up in that parenting role and often forget that our kids are teaching us at least as much as we are teaching them.
Autistics can be a huge asset to these Autism organizations and the fact that many of them give no representation to the people actually living with Autism, just makes no sense to me. How many of these organizations have an Autistic person sitting on their board?
It almost seems counterintuitive. Doesn’t it?
So what’s the deal?
This doesn’t seem like rocket science to me. In fact, one of the things that I’m focusing on as I become more involved with the Autism Society of Greater Akron, is trying to ensure that we have persons with Autism intimately involved. I think this is extremely important. There is so much we can learn from the people we are trying to help. All we have to do is listen.
On a side note, I’m also looking for more people with Autism to join the My Autism Help Forums. I’m always looking for moderators, a willingness to share personal insight and experience, as well as people that are willing to help parents like me, better understand our kids with Autism. If anyone’s interested, I would love to talk to you. 🙂
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I whole-heartedly agree. Not only am I raising two, but I am also married to one, and I was raised by one, possibly two. It is all over my family tree. I myself know that I am on the spectrum somewhere, but, given my responsibilities, it feels like it is impossible to explore my own diagnosis. It feels like my time has come and gone. I have masked and adapted and learned (mostly) how to function and cope. I actually believe that God created me for this moment in time, for the purpose of educating and advocating. I am not the only person in this position, but there are not that many of us willing to live it openly. I see it from the inside out, and I feel like I have a huge advantage over those seeing it purely from the outside. Although I never had a name for it, I always knew it was there. I have lived with autism from the womb. I can give perspective to those raised by an autistic parent, to those with autistic children, and to those with autistic spouses…as well as knowing autistic experiences from my own inner life. How could this NOT be my purpose?!
In my experience, most autism-connected nonprofits have much more connection, advice, and insight from adults with autism than you may realize. But not every adult with autism likes to write blogs or post on Facebook – heck, a lot of them have an absolute aversion to writing anything! So we miss their voices if we insist that the only adults with autism who count are those who choose to write a lot on the Internet. Similarly, many adults with autism have no desire to learn Robert’s Rules of Order, sit through Board meetings, or attend public hearings. So autism organizations talk to them in less public, less structured ways. Finally, not every adult with autism sees things the same way. I had a discussion one day on FB with an adult with autism who insisted that EVERY adult with autism should live in his/her own apartment. And I said that my adult son with autism has ZERO interest in that. Instead, he wants to live in a community with a number of other autistic adults – and roommates! The adult on FB couldn’t envision that – surely if she wanted her own apartment, then EVERY adult with autism wanted the same thing, right? No, wrong. And that is why I am a strong proponent of choices: adults with autism should have a variety of choices…but one adult with autism can’t make choices for all the others any more than one parent can make the choices.
Makes sense to me, Rob. I’m an adult with autism, and I’d love some services specifically designed for adults with autism, but as far as I know there aren’t any. A therapist I was seeing for awhile for my depression was actually an autism specialist on the side, and that was helpful, but she’s moved to a different job.
It’s nice to have help for my other mental issues like depression and such, but it would be a godsend to have services specifically designed for the autism instead of having it get lumped in with the rest of everything.
Silachan that’s EXACTLY what I’m talking about. I don’t understand that.
Know what’s sad? Even the places that say they help adults with autism really don’t. I’ve emailed at least 5 or 6 orgs who say they help adults with autism, simply asking where an adult can get resources that would lead to an official diagnosis and evaluation. No response, from any of them. At all. It’s sad when you try so so hard to get out there and you just get ignored.