As usual I’m a little late to the party with my post about Suzanne Wrights from Autism Speaks comments in
her op-ed piece on the eve before the first ever Autism Summit in DC last week.
I read her comments and then I read a lot of my fellow autism mom & dad bloggers posts responding to it, almost all bashing her for her thoughts.
I kept quiet, read everything and really thought it through.
And here’s my take on it all.
Before I get started just know that I’m talking in complete layman’s terms here and I’ll be making some sweeping generalizations and making up some stats to make my point.
So please don’t nitpick the little details. Just look at the whole picture of what I’m presenting.
Ok so here’s my take on it all.
I’m a realist. I’m an autism dad. I try to look at things through my autism dad microscope but to also look at things from an outsiders POV
And Suzanne Wright’s post sounds to me like the post of an impassioned
grandmother who has watched her low functioning grandson struggle for years and her daughter shed quite a few tears along the way.
It truly read like that to me.
And it rung true to me. What she wrote is our autism. It is the autism for many of the low functioning families that we know of.
I read her post to my wife and then read some of the negative comments and one of them said “what if my autistic son read that?” and wifey’s reaction was “I wish we had that problem…”
Jealousy? You betcha. We’re coming from the extreme low end of the autism spectrum with epilepsy thrown in for good measure so we’d love if our kid got upset about Suzanne Wright’s post.
And yes, maybe Suzanne Wright’s post was more about the low functioning end of the spectrum and lots of higher functioning and aspie families felt it didn’t speak to their reality.
But can’t we all agree that she was presenting the worst case scenario of autism.
And there’s lots of families that are living in that worst case reality right now…
but she was presenting worst case scenario on the eve of a summit to work towards eventually getting more government $$$ for autism.
So maybe her post wasn’t meant to connect with autism parents. Maybe it was meant to get the attention of the politicians and the general public, to make them aware of the struggles of some (lots?) of autism households.
And unfortunately the way our country works the only way to get what you want out of our government is to scare the living sh-t our of people. And paint a dire picture of what autism parents lives are like and how people with severe autism will be hugely expensive for our country in 20 years if we don’t do something now.
I know it sucks to bring it all down two dollars and cents but for politicians and money people it’s all about ROI.
Return on investment.
You need to paint them a scary picture and then you need to show them that by spending lots of our tax dollars now on more early intervention, more medical benefits and therapies for autistic kids NOW it will be much cheaper than spending 10 times that much on group homes and residential facilities and day programs when our kids turn 18.
That’s just the way our country works. To get what you want you need to paint a gloomy picture and say how dire the situation is and present the worse case scenarios.
And that is what Suzanne Wright did in her piece.
When cancer is looking for more government funding do they paint a rosy picture or do they say 25 percent of the people who get this kind of cancer die (I’m making these numbers up) but with this additional funding we expect to bring that number down.
But with autism if Suzanne Wright says 50 percent of the kids with autism will probably never be able to get a job (I’m making these numbers up) she’ll get CRUCIFIED for it from the aspies who can work.
So in summary. Yes, her post was harsh. Yes it painted a gloomy picture. Yes if I had autism and could understand what she wrote I would probably be upset…until somebody explained to me that this is how you get things done in this crazy country of ours.
And I said it in a bunch of earlier posts that I may not always agree with how Autism Speaks operates or spends their money and I might not see the direct impact of AS in my kids life.
But they are tackling things on a national scale going state to state fighting to get medical insurance changes to cover more things.
And convening this first ever, long overdue Autism Summit this past week in DC.
And whether you think autism is a disorder that needs curing (like me) or is a different way of life & thinking (like many aspies) I think we all will benefit with medical insurance reform and a national autism plan.
Ok. I’m gonna end it there. Let’s give Autism Grandma Suzanne Wright a break. She only wants good things for her grandson.
Ok. I’m done. Getting off my soap box and am prepared to be torn apart!!
😉
View Comments
I totally agree. Perfectly said. If people talk about how "great" autism is we would not get any funding.
Statistically, there is already a majority adult autism population....according to Autism Speaks recently released study, that is. Theu claim only 17% of the survey respondents were 17 & under.
I agree with you. I don't like AS in general as I believe there are better groups out there but you have a point. There are more Alex & Dorothy's out there than Temple & Eustacia's. Kwim? When people hear of Autism that's who they think of now. And it's not realistic to my family at least. If we painted rosie pics of life with Autism nobody would help. It would be chalked up to something that is very livable. And sometimes it's not, not at all.
Right on, AD. I think you are the only blog that I've read that is somewhat supportive of what she said. People need to look at her comments with logic and not emotion.
I completely agree with you. The only way to get the government's attention is to show them the harshest side of autism. Sure not all people with autism are the same, but that's why it's called a SPECTRUM disorder. My son is somewhat high-functioning, but while reading her blog I wasn't offended in the slightest. I think that you are right; she wasn't trying to relate to the parents, she was trying to get the attention of the big guns in charge of insurance reform. Good for her, she is doing more than most of us parents as far as changing things on a national level.
:-/
Frankly, I was a bit offended by the comments which totally marginalized those of us with family members with profound autism. My child (18 now) is non-verbal and profoundly affected. He also has seizures. Barney and Kermit are his best friends and he is not writing or reading blogs. He is a very valuable person to us, but autism is not a celebration for us any more than Alzheimers or Multiple Sclerosis are celebrations to those who deal with them. I am happy for those who are so mildly affected that they can advocate and comment on blogs, but they aren't representative of our situation in the least. I certainly don't want to change them if they are satisfied with their functioning, but I worry about my child's future with very good reason. As another blogger stated, they seem almost indignant that autism could ever include intellectual disability and frankly, they are showing bias towards those who do have intellectual disability. I know I sound worked up, but I don't think Ms. Wright deserved that response.
I think both sides of the argument need to remember that, if you meet someone on the spectrum, you've met only one person with Autism. Higher functioning/Aspie groups need to remember that there are many parents dealing with children who have a much more varying and often severe symptoms associated with their child's Autism. They are also being encouraged by specialist who focus parents on the importance of early intervention. Naturally, parents are desperate to do whatever it takes to make their children's' life better. Conversely, adults living and attempting to function within the parameters of their Autism symptoms resent the efforts of parents, experts and society to "fix" or "cure" autism, having developed an appreciation for certain aspects of their Autism that they feel are beneficial, even gifts. No one is wrong, necessarily. There are just so many opinions about what is needed, how to prioritize, where to focus funding, when to implement transition, etc., etc., etc. In reality, there are likely more opinions about what decisions need to be made regarding people with ASD, than there are actually people with ASD. I think they all need a voice, and whether it takes someone else speaking on their behalf, everyone should be "heard". Bottom line, I appreciate Suzanne's passion, and Autism Dad's transparency. They are two voices in a choir made up of those impacted WITH and BY ASD, and we all need to learn how to harmonize, not drown each other out.
I totally agree also. And I do have a high functioning 19 year old who can read. All she is doing is trying to HELP. How can people be so cruel?
I have a 23 year old Aspie son, so high functioning he falls through the cracks and doesn't get the services he needs. He's floundering. I also have a 20 year old son profoundly ASD, with the accompanying anxiety, violence, wandering, non-verbal and more. He was diagnosed before my eldest, and when he was I still met doctors who believed Autism was caused by a mother not loving her child enough. I was in many of the fights that brought about services here in Ontario that children with ASD- ALL forms and levels- benefit from now. And the only way we got anyone to listen to us was to put a REAL face on autism, and accurately portray it's biggest challenges. Because you will never have adequate funding. Ever. That's just how it is. So if you present a best case scenario you are short changing everyone. Not to be harsh, but would SF have moved heaven and earth to make the wish come true of a child who had to have a mole removed? No. Did all kids AND adults watching get a thrill out of seeing batman? Yes.Will adequate services ever be available for ALL asd families? Probably not. But if you fight for those with greatest need then those with lesser or different challenges will benefit as well. I am thrilled Autism finally is a word the general public knows. When my boys were small no one did. This change is huge. And as with everything else, with awareness comes criticism- even from within, before finally there is acceptance. Twenty years ago, I longed for the day when I could say "autistic" and not have someone say, in all sincerity "you mean artistic?" Twenty years ago I longed for groups where I could meet other ASD families and not feel so alone. That day is here.10 years from now all this in-fighting will be a distant memory, and families of the newly diagnosed will be given accurate info, treatment (whether Aba, job help, anything needed at any end of the spectrum), and have no clue why one autism family would attack another. These are growing pains we are going through as a population. And as growing pains, they are, well, painful. But they will soon be over. And I can't wait for that day. In the meantime, I too blog about it, daysofwhineandrose.blogspot.ca because I need the outlet. If I don't I will collapse. As so many in our situation do. So,please, in the meantime, let's not be the reason another ASD mom, dad, sib or individual collapses. Let's not attack each other. Autism Daddy, as usual, your post was dead on! Thank you!
Lori, I love your take on it! I'd love to possibly use this response from you in a future blog post or FB post. Do I have your permission?
You can raid my blog posts as well, pics too. Just let me know lol! Most are already on The Ark but there are others in the blog, and of course more written material, fb posts are too short lol!
Autism Daddy, we can collaborate on a piece anytime. Contact me thru google+ (Lori Pollard JazzBrat) or the blogs- daysofwhineandrose.blogspot.ca or jazzbrat.blogspot.ca. We have an interesting situation in that i'm in Canada and you're in the States, and we have similar situations, but different enough for alternate views. And both on blogger so makes it easy! Contact me anytime to brainstorm
Thank you both. As I have said before know is not the time to be divided. We must work together for the sake of our children low or high. Both your blogs help and for that I'm thankful.