So, there’s this “advocacy” group, called Autism Speaks. They are… weird.
See, here’s the thing. Lots of people are autistic. Some are pretty severely autistic. Some are only “mildly” autistic. Some of us (yes, I’m one of them) are actually pretty happy. Lemme qualify that. So far as I can tell, if I understand the word “happy” correctly, I’m happy. I can’t actually tell whether my experience of “happy” is what other people describe. But I find myself mostly feeling good, and thinking that the way things are for me is a pleasant way for things to be, which I don’t much want to change.
According to Autism Speaks, though, I’m the horrible Autistic Child that murdered the healthy, happy, child my parents really wanted.
No, really. You couldn’t make this stuff up. See this blog entry, Autism Speaks: Don’t Speak for Me for some background. Other people have commented on problems with Autism Speaks.
Here’s the thing. I’m all for research into finding out what causes autism, or treatments that might make life easier for autistic people. But I get a bit concerned when a huge and very rich charity is devoting its effort to lying about what it’s like to live with autism.
Look. I can understand the desire for a eugenics program. A good friend of mine was the fourth consecutive child born with cystic fibrosis in his family, and he regularly and actively advocated for more to be done to prevent people from giving birth to kids with CF, until CF killed him. I can see a case for that, because, see, you don’t find people who are happy with CF, and you don’t find people with CF who are making great contributions to society that wouldn’t be possible without CF.
Autism’s not like that. Lots of us are happy. Furthermore, we’re useful. Think how nice it would be to have access to a few people here and there who were congenitally resistant to herd mentality and carefully-worded appeals to emotion. Or people who were instinctively well-tuned for problem solving. And by and large, as long as you’re willing to, say, use words to tell us what you want us to know, we’re apparently pretty tolerable to live with.
Fundamentally, Autism Speaks is a group focused, not on helping autistic people, but on eliminating them. No thanks. I don’t need to be eliminated. Maybe I’m not the “healthy” child my parents might have wanted, but we seemed to get along okay by and large, and I think on the whole my father preferred a seven-year-old who could understand calculus to a hypothetical seven-year-old who wanted to watch football games.
If you have any doubts as to whether they really speak for autistic people, consider that they went out of their way to create misleading impressions of what caring for an autistic child is like for their “Autism Every Day” movie. Trying to create false impressions is not something that most autistic people are going to endorse or support. The entire point of communicating is to share useful information so people can make better choices.
If I have to choose between no one speaking for me, and a woman with her autistic child in her lap saying that the only reason she didn’t kill herself and the autistic child is that she cared what happened to the healthy child… I’ll take “no one”, thanks.
From: Zachary Uram
Date: 2010-12-05 00:37:52 -0600
Interesting blog post (found your site via a comp.lang.c post you made).
I don’t have autism, however I do suffer from several types of mental illness so I’m used to being patronized and treated as if I am horribly damaged fundamentally on an emotional level.
You are free to decide what sort of coping mechanisms work best for you, or even if you don’t want any. Autism Speaks has no right and demonstrates great arrogance in presuming to dictate to you how you live your life and feel about that.
PS: I found your C page very useful. Do you plan to update it?
Email replies welcome.
Date: 2012-11-18 17:28:21 -0600
As the parent to one, quite possibly two autistic children, I agree with everything you’ve said and hate Autism Speaks myself. Autism is just a part of one, quite possibly, both of my sons — just as their hair colors, eye colors and skin tones are. I still feel that they can, and will, make great contributions to society once they are of age. If this makes me the minority here, well, I am blissfully happy to be the minority.
From: Pamela N. Brown
Date: 2012-11-21 12:10:52 -0600
I absolutely agree with you as well. There is an Autism Extravaganza in our area every year as well as the Autism Speaks walk. Autism Speaks hosts the Extravaganza, and all of the local advocacy groups are tied to Autism Speaks in one way or the other. My son and I used to go to these every year until the year they had gotten Temple Grandin to speak. We never heard anything negative through Autism Speaks up until then.
The local mother they had to speak started speaking about how hard it is to be a mother of a child with autism, and how she can’t go anywhere are do anything because of her child’s behaviors. Her child was supposed to be high functioning. My son started writing in my notebook about how bad of a mother the woman must be. He wrote that it sounded to him like the mother hates her child. I agreed with him.
When my son was diagnosed at 16 months of age, he was low-functioning. It was very difficult for us, but we got compliments from people when we were in public about how well behaved both of my toddlers were. I could take them in public because they were never treated any different than one another. They knew to not act up in public because they knew that if they didn’t I would take them home, and we were often at a place that they wanted to be at. I thought about how the mother must have not disciplined her child at all. I didn’t realize that I was not the only person that felt that way.
When Temple Grandin got up to speak, she stated very early in the speech that the biggest problem with many parents of children with autism is how many of them refuse to discipline their children in any way shape or form, and that is why many of the children with autism act up in public. She also stated that the parents often spend too little time with their children with autism, and due to that, the parents did not know the triggers that make their children act up, and that leads to undesired behaviors.
For us, I always knew the triggers, and the biggest one is that my son cannot deal with really crowded places. Instead of shopping at Wal-Mart, where it is super, super busy, we shop at K-Mart or Hastings, where it is relatively uncrowded and busy. Any place that is super loud, such as Mr. Gatti’s are places that we do not go. Instead, we go to Pizza Hut and then to the dime arcade, which is less crowded. This has always helped us, and is probably why my son has never acted in public.
Dr. Grandin also spoke about how her mother was more like me. Having autism does not mean no discipline. Unfortunately, I have a lot of friends with children with autism, and it is about 50/50 with whose children act up. Those that are unruly are never disciplined and are allowed to act improperly in public. Those that are well behaved are disciplined, have a structured schedule, and are very, very happy children.
Later, Dr. Grandin spoke how she dislikes Autism Speaks. She stated, “I have been listening to you talk about how all of your money goes to trying to find a cure for autism, when you should be spending the money on funding transition centers for children who have autism. Children with autism becomes adults with autism, and in order to be productive members of society, transition services are in great need.” I never thought about it that way.
Needless to say, my son was enthralled with Dr. Grandin. He listened to every single word, and agreed whole-heartedly with her. He wrote in my book, “I don’t like that they are looking for a cure, but to have a cure means that the person is sick. I’m not sick. I’m autistic.”
My son and I have not attended another autism walk for Autism Speaks, and we have not attended another Autism Extravaganza because the funds raised goes to autism speaks. Instead, we do fund raising for places like the Autism Society of America, who spend their funds on transition services for people with autism. Autism Speaks will never sit right with me again. Unfortunately, now we have no local association to go to as they are all tied to Autism Speaks and looking for a cure.
Date: 2014-05-14 14:45:39 -0500
Oh, there IS a cure, and “Shrieks” knows JUST what it is!
1) the way is to be paved with propaganda: “autism every day” / “Ich klage an.”
2) Some catastrophe needs to happen. Perhaps declare a major war / economic depression…
3) the executioners must be taught appropriately.
4) law must be enacted.
The end result: Endlösung, the “final solution to the autistic question” – which, when fully enacted, will result in the return of ‘Magic(k)al Potency to the now-purified Neurotypical world – with Master and Mistress Wright as Joint Leaders.
Oh, sorry – I meant Führeren. ( Not sure of the correct plural form…)
Date: 2014-06-24 11:15:05 -0500
<i><b>An Autistic Speaks to the Community – A Call for Action.</b></i>
<p>This week is the week America will fully wake up to the Autism $peaks crisis.</p>
<p>If six million people in America one day went missing – what would we as a country do?</p>
<p>If six million people in America one morning were wiped from existence – what would we as a country do?</p>
<p>We would grieve. We would blame terrorists. We would declare war on the guilty party and innocent countries. Finally, we would mourn the loss of so many opportunities for national advancement.</p>
<p>We’d leave no stone unturned.</p>
<p>Yet we’ve for the most part lost touch with six million American people, and as a community, we’ve done nothing.</p>
<p>We’ve let people be silenced, disenfranchised, and murdered.</p>
<p>No more. Today is the time to rise up and take our futures back from those who claim we have none. It is time to work together in a concerted effort to shut down the organisation that claims to want to help Autistic people speak even as it works to silence us. It is time to shut down Autism $peaks.</p>
<p>Don’t we and our families deserve it? America has always been about its great people.</p>
<p>Yet we seem to be forgotten in the debate about a genocidal ‘cure’ – even though we have often led others into the future.</p>
<p>Each day across this country, six million moms, dads, and others who live with Autistic people wake to the sound of Junior stacking cans, Jack playing video games, or Mom typing her latest bestseller, and they smile. Do you get that, Autism $peaks? <i>People smile knowing that their loved ones are happy doing what they do best.</i></p>
<p>These families are living better lives than you envisage for them.</p>
<p>Autism $peaks says that these people are only existing and dare not call their time their own, but they are not the hopeless, helpless victims of their loved ones’ neurology that the organisation so clearly wants them to be.</p>
<p><b>This is Autism.</b></p>
<p>Life is lived in the moment, enjoyed to the full, and people’s worlds are not a series of never ending meltdowns.</p>
<p><b>This is Autism.</b></p>
<p>Parents and guardians smile at their child’s joy in discovering communication through PECS, AAC, sign, and speech. They laugh to share their child’s pleasure as they dance with a long ribbon, the Autistic person intently watching it as it streams around them. They marvel at the astonishing imagination of their child as they draw complex fantasy worlds entirely from their heads.</p>
<p><b>This is Autism.</b></p>
<p>On the bad days, all the family members out there – 420 million around the world – feed into the lies of Autism $peaks because their loved one is melting down after reading about a parent, often female, who has been encouraged to murder their child by an Autism $peaks PSA. On the good days, of which there are so many, they feel the joy and contentment that is their right, and are able to ignore the poison spewed onto YouTube and other places by Autism $peaks.</p>
<p><b>This is Autism.</b></p>
<p>If any of this sounds familiar, you know Autism $peaks. And if you know Autism $peaks, you know we are looking at a monumental population and information crisis. And we have no international plan.</p>
<p>What I described above is really just the beginning. In the next ten years, up to a million Autistic Americans will lose their lives at the hands of those they are supposed to be able to trust, and those who kill them will be met with sympathy and face no charges as if we are not also human beings. Up to ten million Americans face the misapplication of ABA in their own homes and places like the Judge Rotenberg Center.</p>
<p>But what about sympathy for the human beings who died just because they had a different neurology? Why no jail time for those who choose to kill rather than giving their child to people who actually care? Why no condemnation for the organisation that actively encourages these murders by calling us ‘burdens’ and ‘financial nightmares’? And why is the torture of vulnerable people ignored and condoned when the waterboarding of suspected terrorists was rightly vilified in the international press?</p>
<p>There is no plan to build a city for a million people so we can be guaranteed our safety.</p>
<p>So let’s dial back a minute and consider the people being diagnosed as Autistic every day in this great country. Do we have a plan for them? Are they all being treated with dignity and compassion? Are we doing anything to guarantee they get a fair shot at a safe and secure future?</p>
<p>We know that children from minority and lower income families are not getting diagnosed as early as they could be, so their castigation begins later, which might increase their chance of a hopeful and successful life.</p>
<p>How about in school? Why should there be a national curriculum which underserves those who struggle with language? Why are we encouraging teachers around the country to share lesson plans and methods that work only with people of certain neurologies? Could it be because of Autism $peaks’ corruption?</p>
<p>But – there is no international plan.</p>
<p>And – our futures depend on it.</p>
<p>According to Autism $peaks, it costs $2.3 million dollars to care for one Autistic person for their lifetime, and they say it will be well over $137 billion dollars for all of us.</p>
<p>But that is because that is all we are to them; not people with varying levels of ability, only costs to be considered. They are very careful never to say what the real cost is to someone who raises money for them in the faint hope of receiving help for their child, help that is unlikely to be beneficial even if it is given.</p>
<p>What is our plan?</p>
<p>We can’t even craft one – without collaboration.</p>
<p>Close your eyes and think about an America where six million Americans and counting are told they cannot take care of themselves without help, even when they can. Imagine six million of our own – unable to dress or eat independently, unable to use the toilet on their own, unable to cross the street, unable to judge danger or the temperature for themselves, unable to pick up the phone and call a friend because their parents and guardians have been brainwashed into believing that they will never achieve these goals when all that is required is the right support at the right time, just like for non-Autistic people.</p>
<p>This is an international emergency. We need an international action plan – NOW.</p>
<p>I am posting this as a <b>call for action</b> on an <b>international plan</b> – NOW. I am asking the Autistic Community to respond to the threat of Autism $peaks with all the urgency it deserves – NOW.</p>
<p>Autism $peaks – here we come – because we have an equal right to life – NOW.</p>
<p><i>Suzanne Wright and her husband Bob co-founded Autism $peaks in 2005, and they have been ripping off their donors ever since by massively underdelivering the services they were set up to provide.</i></p>
<p>Copyright © 2014 Romersa’s Protégé. Individuals and groups are free to copy and share this work for all purposes except large scale distribution, subject to credit being given and any derivatives being released under the same or a similar licence. All other rights reserved.<br />
Adapted without permission from an Autism Speaks blogpost under an exception for the purposes of criticism and review enshrined in the CDPA 1988.</p>
Maybe only slightly off topic.