S.R. Salas Autism Blog Celebrates 1000 Ausome Things #AutismPositivity2013
“Diagnosed by Professionals. Learning from EXPERTS”
*This post was originally published on April 24, 2013
I know a lot about Autism Spectrum Disorders
I’ve read many articles, some books, conducted countless hours of internet research and spoken to many knowledgeable professionals on the subject. I was even diagnosed by one of them – one of the professionals that is. I can assure you I received lots more information at thatfinal appointment. Most important of which, I suppose, is that I am autistic. I had self-diagnosed two years before receiving my official ‘paperwork’ so no surprises there. And, if you’re joining me for the first time, my diagnosis came after my son’s and shortly before my daughter’s. So, yes, two of my children are autistic, as well. Being autistic for 41 years, and raising – and at times homeschooling – two autistic children in addition to all the research, I will have to say…
I know a lot about Autism Spectrum Disorders.
Okay, So What’s Next?
I had my diagnosis, my kids had theirs, our suspicions were confirmed. So now what was I suppose to do? I mean I’d read about all I could stand to read, ad nauseum. I’d watched some documentaries on the subject and I had copious internet hours logged. And this wasn’t something that took place over several months. I did this for a total of four years. All this and after a certain point, I couldn’t actually find anything I considered helpful. I mean they all said the same things a thousand different ways:
‘These are the warning signs and red flags, symptoms and behaviors present in Autism Spectrum Disorders’
We’re Past The Diagnostic Stage, So Now What?
I was diagnosed with autism. Check. My daughter and son were also diagnosed with autism.Check. Check. I had been given a boat load of information on Autism Spectrum Disorders, what they were and how to cope. And that was suppose to do what for me?
What am I suppose to learn from a definition of stimming? That I stim?
Well, I already knew that.
Was I suppose to learn that I have difficulty with social interaction? That I have sensory integration and auditory processing impairments?
Knew that, too.
Was I suppose to learn that I’m not big on eye contact; I prefer things to people (true to an extent, but not always)? That I have difficulty reading social cues, facial expressions and deciphering figurative language?
Knew those things, too.
How about that the underlying feelings associated with Autism, more specifically Asperger’s Syndrome is irritation, frustration and anger.
You’re kidding, right?
Thanks For That!
I read this same information over and over again. Added, of course, to the long lists of deficits, delays and things we are considered incapable of. So, I did what any intelligent human being would do…
I Stopped Reading It!
I wasn’t learning anything about life with autism and that’s what I wanted to know about. I didn’t need to:
- Know about behaviors and delays – Been living them for years.
- Know that I stim and why – Been there, done that, still do it (and love it)!
- Know that I’m not big on eye contact – And?!!
- Be told that social interaction is difficult – Yep, got that, too!
- Be told that I’m aggravated a lot of the time – I can assure you I know that!
That’s an extremely abbreviated list, but you get the gist. You know the checklists, you’ve read them, too. The thing that bugged me was that all of the information I was reading was from non-autistic people. What they were telling me about my disorder and what I needed to do to be better (or at least act better).
I Felt Like I Was The Only Autistic Adult On Earth (besides Temple Grandin, of course – she was the only autistic person I was directed to by the professionals)!
Adults With Autism – Where Are They Now?
Everywhere. But not one single professional, educator, media source, book or article told me that. Again, Temple Grandin was always brought up. And while her stories, insights and ways of thinking were extremely helpful, she is only one autistic person. And she lives across country from me. And she is world famous.
Not very accessible. (I did get to attend one of her presentations once and she was wonderful. Great sense of humor! And she did happen to read and endorse my book, Black and White, so she is pretty awesome)!
So That’s It, Huh?
Me and Temple. Billions of people in the world and Dr. Grandin and I are the only adults with autism?!!
Then something happened. I came out of my four-year-long, semi-state of seclusion, which I talked about here. My perfect autistic bubble was bursting. There were school issues. Social issues. Behavioral issues. Nothing bad by any means, but enough to irritate. Enough for me to peek from behind the curtain and begin asking…
Why in the hell is everyone being so ignorant?!!
Why don’t these people understand how I think? How I feel? What I’m saying? Why is everyone being so stubborn and trying so hard to make me mad? Why do I keep telling everyone over and over how best to work with my autistic children so they will succeed, yet the keep ignoring me?!! Can’t they see they’re doing it all wrong?!! Why is everyone bitching about how difficult and exhausting autistic people are, when the NTs are the ones causing all the problems?!
(**sharp intake of breath as realization kicked in**)
In 2011 I gave my first presentation as an autistic adult to a group of non-autistic parents, professionals and educators. When asked if any in the room had ever met an autistic adult, not one single person raised their hand.
My fate was sealed.
I began meeting with parents of autistic children. I met with educators and professionals. And I wrote and published my first book in December 2012. The same time I began Blogging. The same time I accepted that for life,
I am an Advocate.
It is my responsibility (and a privilege) to talk about autism. To share my experiences and tell my story because if I don’t, then non-autistic people won’t know. So I opened myself to social media. I had never done so before because I was terrified of the public. Of losing my privacy. Of putting myself out there for all to see. But I did it now with ease because by not putting myself out there, I was allowing the autism bashing to continue. I was saying it was fine that my kids, myself and other autistics were considered less than non-autistic peers.
And it wasn’t.
Social Media And Why It Is The Most Significant Thing To Happen To Me Since Diagnosis
Four years I spent studying neurology. Four years I read and researched Autism Spectrum Disorders. Desperately looking for information that would mean something to me. That would make me say “I’m home.” That would lead me to people that made me feel like I belonged.
I spent four years reading/listening to the professionals in the various and assundry fields dealing with Autism Spectrum Disorders and not once did I feel a connection.
I spent less than a month using social media and by entering the right circle, a door was opened to other people like me. Other autistic adults. And other non-autistic adults, like J, who value autistic people and the contributions we make. I have met Advocates. Self-Advocates. Activists. And I feel more connected to these people than I have to anyone (family aside) in more than four decades. I am meeting autistic people. A lot of them. And I am talking to them, listening to them and relating to them. I’m connecting. Through all of the stories and information sharing, I am learning of the very, very many ways we are alike. And at the same time, I am learning of our differences. And it is… Amazing. By connecting with other autistics, I have learned who the real EXPERTS in autism are…
A U T I S T I C P E O P L E