Note: In 2008 I ran an autism awareness campaign from my blog. My oldest son was diagnosed with “high functioning Autism” or HFA as it was known back then. At this time I’m learning and don’t have any idea about functioning labels, terminology, “treatments” or any of medical jargon and labels.
What I know is I have a diagnosis for my son (and first learn about my own Autistic self as well) and have something powerful I can take to the school district and demand better be done for my son who was suffering greatly in every area related to his education. He was experiencing incredible suicide ideation and I was scared I’d lose him before high school years even began. Just finding a doctor who understood my son in our local community didn’t exist. It took many doctors, some trips to the Bay Area, and a couple of years to even hear the word autism and then know which path to get my son support and a better situation. It is still very painful when I think about how much pain and ugly my son suffered due to being different and not understood.
As a parent, one who understood about being a stranger in your own world, I thought I could stop any harm like this that came his way and found out how powerless I was to help him in the school system — until I had a diagnosis and was able to get an IEP put into place for him.
I just wanted my son to live in a world where he could breathe and grow feeling comfortable in his own body and mind. I want all my children, now more Autistic ones in the family too, to be allowed to like themselves, be safe and comfortable socializing and be supported in their life goals.
At the time, most folks had never heard of Autism yet. Autism Speaks was just rising to nab the attention, take over the narrative and push tragedy for donations to find the cure for us. I had no idea then about the symbolism and history. I also really didn’t understand what a lot of parents were talking about. It was thought then there were many kinds of autism and some of these parents believed their children were made autistic by their vaccines. When asked if I thought that about my child? Um, no. He was born this way. So I never did belong in the autism mom groups. I couldn’t understand them.
So I connected with people online and found a much better community of support there than in my local in-person community. Many of us found out we were Autistic too during the process of having our children diagnosed.
So, I did what came naturally to me at the time (my career was in online media then) and created a campaign for Autism Awareness in 2008.
Oh wow, did I get some educating. Some of what I learned about various things then were just wtf? Now days we know some of the groups, people and blogs were focused on conspiracy theories and toxic fake therapies for ‘healing, recovering, cure’ autism. Back then the danger of these groups was simply not understood. Parents were bombarded with a wall of misinformation and tragedy narrative at every turn.
Many of these ‘vaccine-injury” groups are still in existence today and are being exposed, de-platformed and hopefully one day legislation will ban these charlatans from harming any more Autistic and vulnerable people with quackery and bs.
So with that preamble, I’ll be posting what I can find from back then here to archive that campaign, and then the others that followed years later.
Mon, Mar 3, 2008, 8:24 PM
Blog for Autism Awareness!
Did you know April is Autism Awareness Month?Join me in blogging for autism awareness. I’m trying to gather up a large group of bloggers to share their stories and help educate the world at large.If you’re not familiar with autism, come join us anyways. Do a search on autism and then post something you learned.
I’m also looking for guest bloggers. Would you be interested?
To help spread awareness and join forces visit here. While you’re there grab a badge, comment and get on the blogroll.I’m working on making the blogroll available for anyone who wants to add it to their site. So hop over and help advocate!
Please help get the word out and forward this information to everyone you know.
Thanks for being a subscriber!
March 3, 2008
Good evening. I’m a mom to a high-functioning autistic teen. I’ve been reading your pages and newsletter for the last year or two and find it to be full of great information.
I’m working on spreading awareness on autism in April with other bloggers. I’ve created a social-networking type button and a blogroll to promote everyone’s posts and am trying to get the word out.
My goal is to post daily that month on autism related subjects. I’m also looking for guest bloggers. Would you consider a guest post?
I’ve got a post up describing this more here: http://momologue.blogspot.com/2008/03/join-me-in-blogging-for-autism.html.
Thank you for your time and consideration.
|Email To Me | Fri, Mar 14, 2008, 5:34 AM|
Hi, Im all for spreading the word of autism and would love to join you. However! Im a bit put of by the jigsaw button.
Autistic people themselves want to get away from the image of the jigsaw ie not fitting in society – as they do fit. And i feel its up to us parents to tell this to the world!
http://en.wikipedia.org/wiki/Aspies_For_Freedom for example.
I know not all parents go along with this, but a lot do.
Anyway!! I am putting your link on my blog tomorrow, to let people know what you are doing as i think its great!!
Thanks for listening!
|Mar 14, 2008, 10:42 AM|
I haven’t heard of this before. It’s good to know. Next year I can come up with something else — I just saw it as instant recognizability for autism awareness. I didn’t realize it stood for a cure. My son’s psychologist has said that my son’s dad and I are on the spectrum (unoffical dx if ever) — and I know I don’t feel a need to be ‘cured.’ My focus for my son has always been for him to gain skills navigate the world easier.
My son’s psychologist also said that if it weren’t for autism, aspergers, bipolar, ocd, etc, the world wouldn’t be what it is now. The neurotypical mind can’t focus on subjects in the same way. We’d not have combustion engines, technology, etc.
So I’m in the same mind as I don’t see a need for a cure for him. We talk about autism as a blessing and a challenge. Lean on the blessings, work with the challenges. Everyone has blessings and challenges — at least he knows what many of his are and at a young age. Perhaps parents of children who are low functioning may feel different.
I think this is a very interesting subject — a view I hadn’t seen before. Would you be interested in doing a guest post on the subject? If not, could you recommend someone?
Thank you for adding the button even with the image — I’ll add you to the blog list. Perhaps I can come up with a different button w/o the image and add it as another option — any suggestions on imagery?
March 14, 2008
Hi from Casdok
Great new button – i have put it up on my blog!
Wondered if you would like this for a guest post?
If my son could speak, this is what i think he would say;
My mum misses me, my family dissess me.
Society dehumanises me. Despises me. Criticize me.
They are fossilized. I do not apologise.
I am ridiculed, violated, bullied. Ignored.
I am stared at, laughed at spat at.
What have I done to you? I mind my own business.
I do not listen. I do not see or give you the third degree.
I am holistic, simplistic certainly not materialistic.
My disability is your prejudice, systemic injustice.
Your presumptions and assumptions.
Intolerance of my difference.
Your misperception I take objection.
I am not a disorder, im not a symptom. Its not catching.
Im not a label or a vegetable or a crystal angel.
Im not a lost soul or out of control.
Im not from outer space, or a charity case.
I am suppressed not possessed.
Institution is not a solution.
I don’t have a condition, im not an exhibition.
Im not an artist or a musician, or on a hostile expedition.
Maybe I will become a politician.
Im not an Einstein or like Rain man.
Im not Pinocchio or Peter pan.
Im not ill, I don’t want your pills
Or your out of date text book skills.
Im not a zoo exhibition or a freak show,
Im a feeling human from head to toe.
I can get lost in the worlds beauty
So don’t make me fit in your reality.
Why should I conform
To what you think is the norm
Like a Big Brother contestant
All we want is acceptance.
The world loves Happyfeet Nemo and Shrek
So should I paint my face green and be on Star Trek?
I create employment and opportunity,
I educate the world in diversity.
You cant bleed the devil out of me,
People like me have influenced history.
You need me.
So don’t cure me.
Don’t pity me just let me be.