‘This is Autism’ Flashblog: What Autism Is (to Me)

18 Nov
November 18, 2013

From the This is Autism’ Flashblog:

“This is Autism” Flashblog

Last Monday, Autism Speaks told the world that autism is:
 . . . living in despair
. . . fear of the future
. . . exhausted, broken parents
. . . lost, helpless, burdensome children
. . .  a national emergency
If that’s not what autism is to you, join us on Monday November 18th for the “This is Autism” flashblog.

[ The following is my contribution to the 'This is Autism' Flashblog...]

THIS is Autism…?

A little over 5 years ago when I learned my son, Bas, was Autistic (he was the first of us to be diagnosed), I began a search for information on autism. First stop: Autism Speaks, of course, as it was the only organization I’d ever heard of. Although Bas wasn’t formally diagnosed until 7, we were informally aware by age 5. We did not participate in early intervention programs nor did we put him in traditional therapies (ST, OT, PT), hence the ‘late’ diagnosis. We just let him be a kid, accommodated his needs and supported his development according to his time-table.

I never feared for my son when he was 3 (or 4, 5, 6, 7…) and not speaking. I didn’t fear for him when I was told the extent of his developmental delays or textbook deficits (we had always focused on his skills and abilities, just like we did for our other 2 kids). And…

I never feared for my son when I learned he was Autistic.

 

Selling Snake Oil

The day I visited the Autism Speaks (AS) website was the most scared I’ve ever been in my life. They didn’t make me fear autism - well, for about 60 seconds they did, but luckily I rallied quickly. The more I read, the more fear I felt, and it wasn’t autism that frightened me. I was afraid of this colossal organization that would speak of human beings in such a derogatory way. Scarier still was a society that would allow an organization to speak this way about other human beings. And not only allow it, but advertise it and

Support it monetarily

THIS (hate) Cannot Be Autism

Autism Speaks, their mission, their words - venomous ooze. I left their website knowing I could not look to them for support or guidance. I left their website feeling they considered Autistic people unworthy and less. I left that day a changed person, an informed person. Not informed about autism, most definitely not, but informed about the tactics of ignorance and fear. Informed that with enough money an organization such as Autism Speaks could openly spew poison about a group of people because it hates what they are.

So what is the difference between Autism Speaks and a hate group?

They speak of prevention and cures, not of acceptance. Isn’t preventing a group of people from existing, merely because one deems them not acceptable, hate? I believe it is - and that is something that every single one of us, concerned with disability rights and human rights, should be deeply disturbed by. Personally, I’m thankful everyday that my instincts and sensibilities served me correctly (and immediately) in realizing Autism Speaks for what it really is:  A money-hungry, fear-mongering goliath that preys on Autistic people and their families.

I hadn’t been back to the AS site in some time, that is until recently when several respected Activists and Allies began calling out Autism Speaks and their horrific ‘Call for Action.’ What I had always believed of AS was confirmed in their latest ‘advocacy’ debacle, which you can read about here.

 

Thank You Autism Speaks  (kidding, right??)

No, I’m not kidding. I have one thing to thank Autism Speaks for, and that is this: When I visited the AS website that day all those years ago, I left an empowered person. I realized on that day, I wasted 20 minutes of my life reading of an organization’s ignorance and fear projected on a people because of their neurology. I wasted 20 minutes of my life reading of their hate of a people because they deviated from the ‘societal norm’ and because they had disabilities.

I wasted 20 minutes (MAX) learning what autism wasn’t.

I look back on that day and realize it was one of the strongest motivating factors in my journey towards advocacy and activism. You can’t ask for a better motivator from others than their ignorance and unwillingness to listen to the one group of people they are suppose to be working with.

NONE of that was autism.

Autism Speaks does NOT speak for me, my children or my friends.

THIS is Autism

If you want to learn about autism, ask Autistic people. If you want to learn about autism (and Disability Rights) from organizations truly advocating for, and working to ensure the rights of Autistic people, then here are a few sites I highly recommend:

  • ASAN (Autistic Self-Advocacy Network)
  • AWN (Autism Women’s Network)
  • Ollibean

And THIS is Autism

It’s impossible for me to put into one post what autism really is to me, and to my family and friends. I am an Autistic person. I have Autistic children. I have Autistic friends. Everything we experience: feelings, emotions, social interaction, relationships, work, school, our environments, etc… is experienced autistic-ly, the way we’ve experienced everything since birth. So, what is autism really?

For us it’s everyday life.

But I thought that was a bit vague. I spent so much time at the beginning of this post telling you what autism wasn’t that I thought I should leave you with a little something more. So I decided to summarize it and say that, to me, autism IS:

Parenthood • Sisterhood • Brotherhood • Family • Friends • Partners • Navigators • Love • ALLY • Arguments • Masking • Laughter • Tears • Stimming • Fun • Work • Success • Failure • Happiness • Overstimulation • Assistive Technology • Play • AngerLove of water • Presumption of Competence • Disability • Education • Self-Determination • Sensory Integration • Scripting • Rest • Insomnia • Sleep • Support • Meltdowns • Compassion • Inclusion • Misunderstandings • Accommodations • Acceptance…  All of these things and so much more.

Autism is not what we have, Autistic is what we are. We cannot be cured, and the Autistics I know don’t want to be. We live the list above to varying degrees. It’s not a list solely of the good things, and it’s not a list of all the difficulties. It’s a list comprised of a little of each - it’s about everyday life, good and bad. It’s probably easiest to say that for me, autism is both an everyday AND extraordinary part of…

L I F E

 

 

14 replies
  1. gene edwardson says:

    All the thing you say autism is is so true Its more normal than people think because we all have those felling

    Reply
  2. Nattily says:

    This is unreasonably beautiful. Everyone who contributed to the flashblog made it such an enormous success. I’m reading through these posts and I’m amazed at how incredibly different we all are and yet how incredibly united we are as well. Thank you for speaking up with such a powerful voice. Thank you for being such a wonderful advocate for yourself and your family and friends.

    Reply
    • srsalas says:

      Aw, thanks, Nattily — “unreasonably beautiful” is one of the most beautiful things that has ever been said to me. And I agree, learning how different yet how connected we are is fascinating. I’m so lucky to have found all of you – this community of our people is one of the most enlightening and supportive groups I have ever met, and I’m glad everyday to be a part of it. And thank you so very much for your kind words, they really mean a lot. xx

      Reply
  3. Mados says:

    This is lovely, well written and beautiful. (I wanted to just click “Like” to say that, but I can’t use the Like function here on you blog. It shows a number of “Likes” but won’t allow me to add mine).

    Reply
    • srsalas says:

      Thank you so much, I really appreciate that! I just did an update, so the Like button might work now?? Thank you for reading and taking the time to comment :)

      Reply
  4. Natalia Erehnah says:

    So you’re saying, life with autism is a lot like, well, life?

    Nice post. :)

    Reply
  5. Curtis Worden says:

    My Autism
    My son whom I call Nuggy & I have Aspergers. We don’t read body language & miss many social cues the “normal” people do. Life for us is a stuggle to learn what most people take for granted.
    Both of us have terrible tempers that cause us to yell at people & at eachother. Being 43, I should know better…but my “shut your mouth” filter doesn’t like to work properly. Nuggy says exactly what is on his mind, no matter where he is or to whom he speaks to. Honesty runs ramped through our house like plague. Dont ask for an opinion around here unless you want an honest one.
    Our autism is much differnt than others…but then again, we are all unique in our own ways. Treat us with respect & we will try not to ignore you or tell you to go away & leave us alone
    Cheers

    Reply
    • srsalas says:

      Thank you so much for sharing Your Autism with me! And I agree about how we each experience autism differently – “… all unique in our own ways.” You said that beautifully. I know what you mean about blatant honesty and saying what’s on your mind no matter what. That’s something we work at ourselves. It is most definitely about respect, and that respect runs both ways! Thanks so much for reading and commenting :)

      Reply
  6. Samantha kemp says:

    That really is a great post. I don’t have Autism but I do have Aspergers and Dyspraxia. More people need to be aware of both Autism and Asperger’s syndrome. Especially people from work related programmes, Doctors, employers, employees and teachers. A few weeks ago me and this other lady with aspergers we went to a primary school to teach teachers and teaching assistants how to help and be more understanding of the children that they have in with aspergers/autism. We are also hoping to go to places like the job centre to teach people there as well.

    Reply
    • srsalas says:

      Hi, thanks so much for reading and commenting. I am so glad to hear that you are working to educate others about autism, that’s great! People will benefit so much from what you have to share! Also, Asperger’s (I and my oldest are diagnosed with it) is an Autism Spectrum Disorder (ASD), which is why I refer to us as Autistics :) I wish you the best with your speaking engagements and am so glad to connect with another advocate!

      Reply
  7. Maddie Samson says:

    I love your blogs! I always say autism is just a different way of thinking. My son has ‘severe autism’ and when his needs are met and he’s understood he’s the sweetest natured child of his age I’ve ever met, if he wasn’t autistic he’d probably be back chatting me and be materialistic at his age, but he loves nothing more than gaming and being loved :) my daughter is in the diagnosis process for Autism, she is truly wonderful, has more empathy than anyone I know (sometimes too much!) and she’s been literate since she was two! So to me whilst autism brings struggles it truly is a gift and if the world was a bit more autistic it would be a nicer place! Thank you for your eloquent and positive blogs! My children are not broken, do not need fixing, they just need acceptance, understanding and love :)

    Reply
    • srsalas says:

      Maddie, you’re excellent, I always love hearing from you! Your love and respect for you children shines above all else. They are so lucky to call you Mum! It is about understanding, isn’t it?! You’re so right! Thanks so much for reading and commenting, and for your kind words – I really appreciate your support and advocacy in our autism community <3

      Reply

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