On Page 32 is the article entitled: "How Autism Ages".
The opening paragraph: "It is estimated that 1 out of every 150 American children is living with autism. And yet little attention is paid to what happens when they grow up. A personal account of the silent struggle of adult autistics."
(If you'd like to read it: http://www.time.com/time/magazine/article/0,9171,1898322,00.html )
"Finally..." I say to myself, "an article that addresses a concern I have!"
Will this article be respectful of what it's like to grow up as an autistic in today's society? The lack of services? The terrible attitude and misconception out there about us? The struggle we have making it day to day because of lack of services, the poor attitude of the general public, etc?
Well, yes and no.
The article is a personal account written by the brother of a severely autistic man who went through Lovaas' ABA "back in the day" and didn't do too well/got worse (gee... what a surprise. None of the folks I got tormented with seemed to do too well either. Most of them are dead now.). This fellow spent years in institutions being abused and drugged to oblivion. It is a truly sad story and I feel for this family. Mostly, I feel for this autistic man whom society has essentially failed in more ways than one. I feel for all of the others whom society has failed too...and there are many others.
But, it's time to look at some of the other phrases. The ones that only perpetuate the reasons why society fails autistic people collossally.
First: "As much as I hope that all the autistic boys and girls will get better, and as much as I can encourage their families to fight with all the hope they have, I also know that they will not all recover. The boy or girl will grow up, and there won't be a miracle; instead there will be an effort, something like what my family goes through every day, to figure out what to do."
Really? We're all hopeless? We will not recover? My family will be left figuring out what to do, eh?
I grew up. I got married and bought a house and did all that stuff. Sure, I'm a rarity, but I'm not the only one who works, or advocates or writes. I'm not the only adult out there who has had to just "make it".
I wanted to make it because I got all of the right messages while I was growing up:
"There's nothing wrong with you!" (Nana)
"You can do anything you set your mind to if you're willing to work for it" (Dad)
"Anything is easier to do if you do it with a good heart" (Mum)
"You're a fighter. You fight and you get what you want. You've succeeded anyway. I'm amazed and proud. I don't think I could have done what you've done with your life." (My brother)
"I'm proud of you... for everything you've done." (both of my parents)
"You are loved" (Mum)
"Just remember: Those idiots will be coming to you for a job one day!" (Dad)
"You're the best and the brightest." (My husband)
"You're one of the most compassionate, steadfast and strong people I know." (One of my friends)
"You are amazing" (many people I've met)
"You've always found a way around things and you will succeed." (CM - one of my teachers in high school)
"You're an excellent leader. You have a way of combining compassion and meeting the bottom line that most people can't do." (My boss)
"You have a way of detaching emotionally yet still being so caring that most people can't do. You're one of our best!" (A former boss)
Yet here is the general attitude about autism. The message that is received loud and clear by autistics all over the world. The message that does not empower us or make us want to succeed:
"If recent estimates of prevalence by the Centers for Disease Control and Prevention are accurate, then 1 in 150 of today's children is autistic. That means we are in for a vast number of adult autistics —most better adjusted than Noah, some as bad off — who will be a burden to parents, siblings and, eventually, society."
Well, this adult autistic who works, pays taxes (and has been doing so for 20 years) and volunteers in the community is not impressed. This is not the attitude that society should be taking in my opinion.
Could you imagine what would happen if a blind person was described in these terms? Or a deaf person? Or a paraplegic?
The communities that advocate for them would stage an uproar and would not stop until apologies had been publicly aired and the attitude stopped. How dare anyone call a blind, deaf or paraplegic person a "burden" on society! How dare anyone call someone with diabetes or cancer a blight or burden on society! How dare anyone with Downs Syndrome, Pallister Killian syndrome, Parkinson's or Huntington's be considered a burden by the general public!
Yet it seems to be perfectly OK to consider autistic people a burden, a blight and a bane on society. It's ok to call autism a fate worse than death and it is perfectly ok for certain parents to wish their autistic children had cancer instead of autism. It's perfectly fine to abuse, torture and deny the basic human rights of autistic people because we're such a pain in society's bum (apparently)! There's no problem if one strives to find a way to eradicate autistics and prevent them from being born. Autism societies and so-called advocates actually use these terms and get away with it.
Why???
I'm sure it's not easy raising a child with muscular dystrophy or PKS or Downs Syndrome or diabetes or Huntington's or any number of the disabilities, illnesses or disorders out there.
I'm sure it's not easy raising *any* child for that matter!
So, why is it so horrible when autism is a factor? What makes it ok to abuse, belittle and demonize autistic people in the media when it is *not* ok to do that to anyone else?? Why must autism be so *devastating*?
Let's look at some very irksome and burdensome people from a tax paying autistic's point of view:
- People who refuse to work, have lots of kids and sponge off the system ("Our Lady of the Numerous Children and Perpetually Rotating Publicity Agents" who has been in the news in the USA lately is a prime example of this!)
- People who play the system to get services or financial assistance that could be better used by people who actually need it (those people who really need it often don't get much because they don't know how to play the system, nor do they want to)
- People who charge parents of autistic children disgusting amounts of money for "therapies" that are just glorified teaching/animal training methods.
- Quacks who subject autistic people to treatments based on poor science, poor standards of ethics and poor understanding of what autism really is
- Institutions and people who work there who abuse and mistreat the autistic people in their care because of 'behaviour' - Think JRC as a big fat example of this!
- The professionals who perpetuate negative attitudes so they can scare parents into buying into their opinions and potentially expensive, dangerous or damaging methods of treatment (I'm thinking of a particular quote from a well-known American autism doctor in a certain celebrity mother's book about how autism "sucks the soul")
- So-called autism advocates who are not founding their ideas or methods on decent research and continue to spew negativity and dangerous ideas (Too many of these folks to count...)
- Societies that spin a negative message in order to make money or raise awareness. There are more positive ways of doing this, folks. Other societies for other conditions do it... perhaps you should start taking some lessons from the Down Syndrome societies - and "Celebrate Life". (Remember those ransom notes?) These really do those of us who are trying to succeed and can't get services no favours!
- Parents and caregivers who wish their kids were dead and/or actually kill their kids
- Government agencies that onyl provide services to autistics with an IQ of 75 or less or based on some other unrealistic criteria
Oy... the list goes on, but I'll stop here.
Yes, there are lots of adult autistics out there who need help, services and support. Yes, they range in level of ability and therefore their needs will range too. Yes, there will be more as those cute little autistic kids grow up. That's the way it goes.I'm not saying autism is not difficult. Nor am I saying that all autistics will be self-sufficient. We're not all the same.
I'm not trying to belittle or invalidate the struggle parents have with their autistic children. It's not a picnic.... I get that. I know my own childhood was less than fun, for me and my family.
But, there are also lots of other people out there who need help that society is not referring to as burdens. Lots of other children who are "challenging" to raise. I've mentioned them enough times in this post.
Don't forget: Some of us will grow up to be contributing members of society. Many of us already are in our own little ways from working to raising awareness on the information highway (and everything in between)!
As my dad would say, perhaps some of these so-called advocates may be come to one of us for a job one day. Perhaps that's why they don't want autistics on the Boards of Directors in autism societies and organizations? Wouldn't that just be an awkward situation? Good Lord, some autistic might actually provide some alternatives to the gloom and doom, clear up a ton of misconceptions and just mess up/force people to change the whole dynamic of autism advocacy in North America today!
Did I say the C word? (Change) Apparently, we autistics are quite adverse to this concept. However, I see many not-so-shining examples of this in the NT world too. Particularly when it comes to changing attitudes about autism.
The bottom line is this: We all, as human beings, bring something to society and we take from society too. We all have needs, strengths and struggles.
In the end, it's the double standard between autism and everything else and how they're handled that really irks me. The attitude too. It's not healthy for anyone.
Seriously. Enough already.
