Crisis, despair, and everything else wrong with Autism Speaks’ “Call for Action.”

“Autism Speaks.” Such an ironic name, considering the number of autistics and their families who wish Autism Speaks would shut up.

I had concerns about Autism Speaks before, but I have concerns about a lot of autism charities. I often find these charities too dedicated to a singular view of autism and too ready to dismiss and exclude the types of autism that don’t fit their message. That stands true for some self-advocate autistic groups as much as it does for groups advocating for the worst affected by autism; I wish both extremes would just be more open and honest about the varieties in experiences and needs of autistics and their families. I do think it is possible to have a strong message about the realities and needs around autism without denying its diversity, in fact I think respecting and recognising diversity is in the interests of everyone on this planet, just perhaps even more so for groups with more obvious differences in society.

But then an Autism Speaks co-founder recently released a statement about autism through the Autism Speaks website, and it reads like a confirmation of all the worst things I have ever heard about this charity, and upholds some very damaging and distorting views on autism, to the point that I think the statement does damage to families and children like mine. So I want to address it from my own little corner of the world, on my own little blog, to speak for myself and my son against Autism Speaks.

By Josie Lynn Richards, via Flickr

The message we get about autism from the statement is one of utter crisis. Autism is first compared to crises of millions of children going missing or getting gravely ill, both types of events that are objectively terrible and deeply tragic. Just like autism… right? Apparently my family isn’t living because of my son’s autism; we’re breathing and eating and maybe sleeping, but we’re only existing, not living. I’m apparently living moment-to-moment in despair and fear about my son. And apparently raising a son like mine will cost 2.3 million $US (apparently there’s no need to either explain where that figure comes from or how it compares to the costs of raising anyone else’s son). Emergency; urgency; monumental health crisis. WON’T SOMEBODY THINK OF THE CHILDREN!

Oh the irony that the writer asks us to consider what message we are sending, when the message she is sending is just so damaging.

She makes it abundantly clear she is talking about “autism.” “This is autism” she says a number of times. She throws in the occasional “maybe” and the occasional “most,” but almost always she talks about autism as a singularly horrible event. The numbers she uses to scare the public include the whole spectrum from the most severe to the most mild, yet clearly her message of doom, gloom and despair applies to only ever a proportion of the autistic people across America.

How hard would it have been to say “severe autism” when that is what she’s talking about, or some other – any other – way to indicate that what she is talking about is a proportion of the autistic population rather than autism itself? Not only that, but even the most severely affected children are not automatically a cause of  utter despair; it’s damn hard work, I know I’ve been there. And that’s another point: Many of our children do not remain in the same severe state as they start out, but the way the Autism Speaks message is packaged clearly makes autism out to be very much like a life-sentence of horror.

Yes the provision of adequate services and supports can and does help that progression and makes autism easier to live with, yes I appreciate that Autism Speaks sees itself here as advocating for the proportion most in need. But no, I do not think the only way to package that message requires lumping all autistics together in this way, labeling them as some sort of horror for both families and societies, and generally scaring the living heck out of any newly diagnosed family.

I think a message of what wonders and fantastic outcomes can be achieved with good attitudes and supports towards autistic people, would have been a far more effective and accurate message. Highlighting studies that evidence the benefits of early and appropriate interventions, and the difference it makes to have a more inclusive educational system and society, is a good approach too. These messages would have given hope and motivation, rather than the better-off-dead undertones that come through their existing approach.

As it stands, their approach divides and upsets the autism community, rather than unites and reflects their lived realities. I don’t see how that is a good thing.

At the end of the day, Autism Speaks is free to package their message as they see fit, and if they think packaging autism as a devastating crisis is the best approach then I suppose we must disagree on what is in the best interests of autistic individuals and their families. I’m sure Autism Speaks provides some lovely and useful services and advocates well for autism families on occasion, but to see such a divisive and deeply negative view-point being proclaimed on their own website by a co-founder, says to me that there is something wrong with the way that organisation views the very people it sets out to speak for.

Maybe Autism Speaks should stop speaking for a bit, and listen to what the rest of the autism community has to say too:

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37 Responses to Crisis, despair, and everything else wrong with Autism Speaks’ “Call for Action.”

  1. Snap I’m writing a post on this at the mo. Ive linked to this one.

  2. Pingback: Autism Speaks is not and has never been listening despite their slogan | Autism from a Father's Point of View

  3. M.J. says:

    “How hard would it have been to say “severe autism” when that is what she’s talking about”

    You know, this idea that is is only “severe” cases of autism that have the issues like the ones discussed in the Autism Speaks article is getting old. None of my children are on the “severe” end of the spectrum and yet I have had to deal with most of the things in that article.

    There is far more to the spectrum than just the “high functioning” and those with “severe autism”.

    “And apparently raising a son like mine will cost 2.3 million $US”

    Actually, the 2.3 million is a lifetime cost (as the post indicated) and is based on quite a few studies of the topic by a number of different organizations. I personally think that number is way too low when you consider that the majority of people with autism will be unable to live independently and/or support themselves.

    • MJ, you ignore the point that there are very many autistic families who aren’t living in utter horrendous daily despair, which was my point. You can nitpick on the terminology of high-functioning / severe / mild all you like, my point remains: Autism Speaks is damagingly misrepresenting the autism community and autism experience. I never said some don’t live in despair, of course some do, and I expressly said so (I used to be one of them). But I can tell you that almost every autism family I know finds daily joy and loves their kids and wouldn’t at all relate to how the piece represents our lives.

      Actually, what I did say wasn’t even as focused on high versus low as you have taken me to be meaning. What I said was: “How hard would it have been to say “severe autism” when that is what she’s talking about, or some other – any other – way to indicate that what she is talking about is a proportion of the autistic population rather than autism itself?”

      As for the amount, what does it mean without a comparative? Does it cost 1.9 million to raise your average kid, and 2.3 to raise someone with autism? How does that compare to other disabilities too, is autism really so horrendous financially in comparison? Does the figure represent the neediest, or a reasonable expectation for all children on the spectrum as the piece represents the case to be? (Hell, if we really want to get carried away, how much does it take to raise a neurotypical child who ends up in the criminal system? At some point it’s just a guessing game about how someone’s life is going to go, for how long, and whether the costs involved are even necessary expenditure. I don’t put much stock in these guesstimates like this, they lack real and meaningful context, I don’t expect you to agree.)

      Even if the figure is correct, it is in the context of a scaremongering piece that is so damaging to public perceptions of autistic people and their capabilities, that I don’t think conceding either of your points will save the piece from being inaccurate, misleading, and downright nasty.

      • M.J. says:

        “Autism Speaks is damagingly misrepresenting the autism community and autism experience. ”

        No, it isn’t. It accurately represents what life can be like for families living with the moderate to severe end of the spectrum.

        My children are happy little girls who bring joy to everyone who knows them and I wouldn’t trade them for the world. But after eight plus years of chronic sleep deprivation, fighting for appropriate services, dealing with years of SIBS, worrying about what will happen to them after my wife and I am gone, etc, etc, I can honestly say that the Autism Speaks article accurately describes what our life is like a lot of the time.

        We don’t live in despair but my wife and I are chronically exhausted, mentally and physically, and largely cut off from society as a whole because most people do not understand exactly what autism does to our life.

        Just because the piece might not accurately represent what your life is like doesn’t mean that it isn’t an accurate picture of what it is typically like for other people. And if you find that offensive, well, I am sorry that my life offends you.

        But thinking happy thoughts about autism can’t change the reality of what it is and what it so often does to families. I can’t think happy thoughts to make up for getting only about 25 hours of sleep a week nor can I plead for acceptance of autism at work if my professional performance were to suffer.

        “As for the amount, what does it mean without a comparative? Does it cost 1.9 million to raise your average kid, and 2.3 to raise someone with autism?”

        It isn’t the cost to “raise” your child, it is the expected cost to support them for their entire lifetime. As a comparison, most “typical” people will positive by a large amount for their lifetime.

        To give a simple example, a person who make 50k per year for 45 years will be positive 2,250,000 minus costs of raising them, minus costs of school, plus investment income, etc, etc. A person with autism is expected to cost someone (society, the parents) -2,300,000 over the same amount of time and would be expected to earn very little money themselves.

        To put it perfectly bluntly, to make sure my three children with autism will have enough money to live and be taken care of after we are gone we will have to save at least $7,000,000. And that assumes that they stay at a higher level of functioning, that they don’t develop other all-to common medical issues that would vastly increase that number, and that we can find guardians who will look after them and their needs after we are gone.

        “How does that compare to other disabilities too, is autism really so horrendous financially in comparison?”

        The outcomes are typically (financially and otherwise) worse for autism than for other developmental disorders such as ADHD and fragile-x. However certain physical disabilities are worse than autism.

        “Does the figure represent the neediest, or a reasonable expectation for all children on the spectrum as the piece represents the case to be?”

        No, isn’t even close to what the lowest functioning will require. It is supposed to represent the median (middle of set, not average) amount. If you haven’t been reading the recent research about what what adult outcomes in autism typically are then you might want to start. There is finally starting to be some small about of reliable data about what happens after the children turn into adults and the picture so far isn’t a pretty one. The picture presented by studies and peer-reviewed studies is also quite different than what you typically read about on blogs online.

        • Wow. All I can really say is thank you for giving me a view into your perspective. I really appreciate it.

          “Just because the piece might not accurately represent what your life is like doesn’t mean that it isn’t an accurate picture of what it is typically like for other people. ”

          The only think I’d say to this is: the problem I and A&O have is the insistence by AS that this is what *all* families are like. That “THIS IS AUTISM” their word, when clearly, in many cases, it is not.

        • M.J. says:

          OK, clearly we agree that all autism isn’t like the AS piece but some is. That leads to two other questions –

          1. How much does the “some” have to be before it is an acceptable generalization about what family life is “typically” like with a child with autism (assuming a condition like autism has a typical)?

          2.why isn’t it equally offensive when people talk about how autism is just a difference that needs acceptance without at least some mention of the reality that autism can be much more disabiling than that?

        • MJ, I quite honestly get the impression that you don’t read my posts, so much as predefine what my message is and go about attacking that. I find this so frustrating. Even your point about “why aren’t people upset when people overly focus on the mere difference that needs acceptance” model, is spoken about directly in my post right at the beginning: That does bother me, and I openly said so. So much of the content of your issues with my post is already acknowledged and addressed within the post itself, so I don’t see much point in just repeating myself in the comments.

        • M.J. says:

          A&O, sorry, my last comment was directed to Dmirty’s response comment, not yours or the body of the post.

          Although I think, like normal, we might be talking past each other. Please stop assuming that I don’t read what you write or that I have reading comprehension problems because I interpreted what you wrote differently than you might have meant.

          We all focus on different parts of messages and come at issues from different angles. You yourself did that in your post when you missed what the original 2.3 mm figure was in reference to. Even after I pointed it out when you went back to the cost to raise concept instead of lifetime cost. Should I presume that you predefined the message and attacked that and didn’t bother to read the original post or my comment?

        • MJ, I didn’t further pursue the cost to raise / life-time issue, because I’d already said I considered it as part of a broader (and unhelpful) scare-mongering tactic and I consider it to be presuming too much to try to guess the cost (and comparative cost) of people’s various lives. I said that even if I conceded the point, it made no difference to my broader (and key) concern with the whole piece. But of course you have every right to clarify and reply, and that’s fine.

          As to the matter of talking past each other, yes we do tend to do that, and you’re quite right that there is typically more than one way to interpret the same set of words. That’s in part my own fault for not communicating clearly, I keep trying to improve my communication skills but I still have a long way to go, in turn I need to not get so frustrated when I’m misinterpreted. Fair call, and point taken.

      • Nancy says:

        Please read autism Daddy’s blog here and the comments that follow. http://autism-daddy.blogspot.com/2013/11/my-realistic-take-on-suzanne-wright.html Every commenter indicated that they could relate to the representation of autism by Suzanne Wright. Do they not deserve a voice? The AS piece was raw and honest and a reflection of what Suzanne Wright has witnessed in her own family. If it doesn’t represent you and people you know, maybe you should be grateful instead of defensive and disparaging toward someone who is not so lucky.

        • Nancy, the complaints across the autism community is with the completely false and unhelpful representation by Suzanne as if what she’s describing is what autism is always like, surely you recognise that autism is hugely diverse? If she’d simply said she was talking about a proportion instead of autism itself, so many people would be a whole lot less upset. Quite independent of that, the entire tone and language she uses is particularly dehumanising and has in turn deeply upset many members of the autism community fighting for recognition and respect. If you think it is worth lying about autism and about what it’s like to live with autism as a condition, in order to represent the experiences of a proportion of the community, then you should be just as happy for people to say autism is all about mere difference and is very mild, that would be just as unhelpful and incorrect.

        • Nancy you are presenting a fallacious dichotomy here. No one is saying lets not talk about the difficulties of autism. No one is denying that many families are dealing with very challenging circumstances. No one is saying autism is a cake walk. What we are trying to say is autism as awful tragedy is not the only view. There are many families where poverty, divorce and depression are not present. Why is it so hard for people to understand what is essentially a very simple concept? Experiences are diverse. Acknowledging that fact does not invalidate how hard life is for many. And if you think it does, then I’m afraid that is defensive. Yes for some autistic people life’s terribly difficult. For others not so much. How is recognition of that fact disparaging?

    • My son was diagnosed with “classic autism”. He is still young, but for now he is non-verbal, has almost no receptive language, likely has normal intelligence, and though young he is statistically likely to remain “low-functioning.” And resembles nothing that Autism Speaks has presented as “typical autistic.”

      I don’t reject the awareness. I reject the demonization of autism as the harbinger of divorce, terror, pain and suicide. “I work faster than pediatric AIDS, cancer, and diabetes combined.” -from I Am Autism by Autism Speaks. This is desperately overstating the case. It is sensationalism. They’re selling out to create a panic, comparing autism to the most feared, disfiguring, fatal diseases a child could have. It’s unacceptable.

    • MJ, is there a way to have a conversation about autism that is honest rather than skewed for the sake of fundraising? Isn’t it easier to acknowledge that autism can be tough, and yet there can be be joy and brilliance too? That this is not a black and white topic, individual experience isn’t fact, its subjective and given how wide the spectrum is perhaps AS would do well to spread their focus on both the ups and the downs? I wrote about how despicable I think that statement by Suzanne was, but the post before that was on the topic of grief. I believe we can have conversation about the challenges, the sadness, the grief, and the joys.

      • M.J. says:

        Sharon,

        Do you really think this is about fund raising? Because to me the message sounded more like one that said the IACC has utterly failed to do anything useful and the US needs a national plan to deal with the growing problem of autism.

        And no, I don’t think it is possible to have an honest conversation about autism when one small but vocal faction takes any negative statement about autism as a declaration of war.

        I can’t even count how many times people have told me that I must not love my children, that I am destroying them, that I am a child abuser, or threatened to call child protective services all because I wrote something they didn’t like about autism. One rather entertaining fellow even tried to challenge me to a duel over something I wrote. None of the preceding is in any way, shape, or form an exaggeration.

        The almost funny thing here is that no one seems to remember that Suzanne is a grandparent to a child with autism. In part her message is expressing her views on the subject and you call her “despicable” because you don’t like what she said. And then you ask whether an honest conversation is possible?

        An honest conversation is one where I can say that my children’s autism has caused substantial damage to my life and health without someone saying that I must hate my children. An honest conversation is one where I could talk about friends of ours whose family is imploding because they can’t deal with the constant onslaught of their children’s autism.

        An honest conversion is not one where the message is predefined at the outset. An honest conversation is one where both sides listen to what the other has to say and acknowledge that they might not be coming from the same place.

        So no, an honest conversation about autism is not possible as long as one of the ground rules is that you can’t say mean things about a medical label.

        I wanted to address one other thing that you said. You said “Isn’t it easier to acknowledge that autism can be tough, and yet there can be be joy and brilliance too?”

        Your statement conflates the concepts of who a child is and a medical label.

        I take absolutely no joy in my children’s autism nor do I think that autism grants any sort of brilliance. I do not take joy in the fact that my children have a devil of a time communicating even their basic wants and needs. I do not take any joy in the fact that they are compelled to stim and become obsessed with certain things. I do not take joy in the fact that they are unable to connect with their peers socially.

        I do take joy in who my children are and what they can accomplish, sometimes in spite of their autism.

        I find it ironic, and I am not trying to put words in your mouth I am speaking in generalities, that in one breathe people will disavow common problems that occur in autism and in the next celebrate some random thing their child does well and attribute it to autism. In one breathe it is sleep problems aren’t part of autism and in the next it is but autism has given him the ability to play the piano.

        • MJ, to be fair, Sharon didn’t say this at all: “you call her “despicable” because you don’t like what she said.” Actually, Sharon said: “I wrote about how despicable I think that statement by Suzanne was.” There is a world of difference between calling someone despicable, and calling their statement despicable, and Sharon’s comment and opinion clearly respected and upheld that distinction. I don’t think claiming she said otherwise is helpful, in fact it’s rather inflammatory. It’s like someone saying you hate autism is the same as saying you hate the autistic child: You recognise the importance of that distinction in that context, so surely you can see the same distinction holds true here too.

        • As A&O said above, I did not refer to Suzanne as despicable. Is it possible that your resentment towards self advocates is so great you have lost the capacity to comprehend the grey areas of this topic? I don’t say this as an insult but rather a genuine question. I have two children on the spectrum. Are my families experiences to be dismissed because they don’t match yours?

        • M.J. says:

          A&O, OK, you are correct, she did say the statement by Suzanne was despicable and I did miss that distinction. My apologies.

          But even if you change was I said “you call her views despicable” the point is still there, just less personal. The point being that calling a view on autism “despicable” is the antithesis on an open and honest conversation.

        • M.J. says:

          Sharon,

          See my last response to A&O, I did misspeak and I apologize for the error.

          But, really?

          First, no, I don’t harbor resentment towards self-advocates I just don’t like the ableism of their message and think other parts of their messages can be harmful towards the majority of people with autism. In some cases (i.e. wandering) taking their ideas to heart can lead to fatal situations for children whose problems are being ignored. In other cases self-advocates advocate directly against evidence based treatments and convince parents not to do appropriate things to help their children.

          I also think there is a tremendous double standard. Autism Speaks says something and everybody jumps down their throat. John Elder Robison says that many parents of disabled children either ignore, neglect, or abuse their children and no one says anything. Michael John Carley says he would have a hard time being called autistic because he doesn’t want to be associated with adults who have to wear diapers and no one protests GRASP. ASAN organizes protests against Autism Speaks walks and confronts parents about their views on autism and no one calls them on their actions. Michael Dawson sabotages ABA being provided to children with autism in Canada and very few people call her on it or point out the monumental harm that does to children across the entire country.

          I could go on but I suspect you get the point.

          Second, no, I am not dismissing your family experiences nor did I ever say that I was. Where did I even talk about your family and your experiences?

        • What I’m saying, perhaps not clearly, is there are multiple experiences of a thing called autism. And while we must acknowledge that for most autism can be a very difficult experience that requires life long supports that it’s not the whole story. And most importantly no matter the challenges of autism, dehumanising language is never OK. It’s the complete disrespect of feelings of individuals with autism inherent in her language I find despicable. It’s particularly not ok from the organisation that purports to have the best interests of autistic people in mind. What she said describes some aspects of autism for some people on some days. It is not all autism all the time by all people on the spectrum and those who love them. I just can’t see the problem with acknowledging that.

        • M.J. says:

          Sharon,

          Hmm, I have one question and one challenge for you.

          First the question and I am actually curious, which statements specifically in the AS post do you view as dehumanizing? More specifically, which statements do you view as dehumanizing people who happen to have autism as opposed to dehumanizing the word autism?

          Second the challenge, make one statement about autism that applies to all people with autism all of the time. Besides the obvious ones that they have a diagnosis of autism and they are all people who live on the planet Earth. Can you name one thing about autism that doesn’t apply to only subset of people with autism?

        • For starters “Yet we’ve for the most part lost touch with three million American children”. This implication that only autistic children matter (seriously, why doesn’t she mention adults? You really have to wonder about her motivation for that) and they are “lost” to us. That these children of ours are not really here. I find that to be dehumanising language.

          As for one thing about autism, that’s my point, you can’t isolate autistic experience. That the spectrum is wide and if AS if cared about all autistics I would think they would be able to acknowledge that. But since you offered me a challenge and I can’t resist, I’d say the one thing that applies right across the board is a right to respect.

          I really believe you can talk about the hard parts of autism without the all or nothing tragedy rhetoric. But as I said previously I am certain AS takes the approach it does (child focussed/autism as disaster ) for the purpose of fund raising. I know this sounds terribly cynical but actually it’s marketing 101.

    • Sheogorath says:

      I think you missed the point, MJ. Yes, the $2.3 million is a lifetime cost of some Autistic people, but what Suzanne Wright failed to mention is the fact that it is the lifetime cost of any disabled person. Plus the fact that all we are to Autism $peaks are costs to be considered, not human beings of varying levels of ability.

  4. I’m generally a forgiving and understanding guy. A guy who’s pretty level-headed. I’ve been cautiously supportive of Autism Speaks in the past, because after all, there are major difficulties parents endure when raising an autistic child. But I have been remiss in my duty to examine *everything* AS says before defending them. No longer.

    You know what? My son is lovable. He’s affectionate. Dmitry Laughs a hundred times a day. He is gentle, non-violent and loves to hug and roughhouse. He’s simply not the child Autism Speaks would have you believe he is.

    The problem is that if AS starts to LISTEN, they’d have to change their entire operational model. They’d have to change the narrative they’ve worked for YEARS to build. Only when the guilt money, the pity money starts to dry up will they begin to come about. Why change what works?

    For now though, it’ll be Divorce. Agony. Bankruptcy. Childhood AIDS. SUICIDE. Autism Speaks has not listened to those they purport to advocate, so what we must do… NOW… as autism parents and autistics ourselves… is go to the source of their funding. Your neighbors, friends on facebook… they MUST understand that it isn’t pity we want. Research is good, improved therapy funding is good, family aid is GREAT. But the LAST THING WE NEED is for our child, or our own person, to be demonized and turned into a nightmare.

    When AS casts that shadow that autism is only evil all the time, it falls on all of us. It falls on my son. But he shines far too brightly for you to comprehend, Autism Speaks.

    Thanks for the article, A&O.

    • Great comment Dmitry Laughs. This whole situation has opened my eyes to just how bad Autism Speaks really is, and it’s something I won’t be forgetting. You’re absolutely right, we don’t need pity, and we do not benefit from our children being turned into demons. This is unacceptable and the public needs to hear from real families about why Autism Speaks doesn’t speak for us.

  5. Pingback: My Son is Not Lost | Dmitry Laughs

  6. Nancy says:

    I see your point, but add this to your list of blog posts – http://autism-daddy.blogspot.com/2011/07/pulling-back-curtain.html I think this post makes some valid points as well. We need a powerful group like Autism Speaks if our children are going to get the support that they need. Do we really think that support, research and funding for therapy and job training are going to come our way if we just say “These kids are doing okay, but some have a few more challenges and they could do better with more support.” In times of cut backs the message has to be a little stronger than that.

  7. Quintorpian says:

    I have never been a fan of the pure disaster scenario as it does not fit with my own experience. But clearly it is seen by some as a way, maybe the best way, to mobilise public sympathy for raising large sums of money. There is an obvious need for funding to provide services and therapies for those who could benefit. And the approach used by AS must also feel very validating for those who are really struggling and super stressed out with parenting their autistic children.

    Yet the public advertising of autism as tragedy also very clearly impacts significantly on the many autistics and their families who don’t wish to see themselves portrayed this way. It corrodes their self esteem and reduces their ability to mobilise their own resourcefulness. This has always been the bit that I think about, because I know that my son, like everyone else’s child, will grow up and will have to rely on his own resources more and more as he move through life. Surely having a sense of being a worthwhile person is one of the most valuable assets we can (seek to ) provide for them. Incredibly important i would say. If my son was exposed to much of the disaster rhetoric it would destroy his confidence completely.

    So in my view at the moemnt, our collective efforts need to go towards constructing a concept of autism, that can facilitate both these aspects in the same breath. We need to listen to the essence of each side and capture it all in a message that raises money and public support if that is what’s needed but also empowers those same people that the money is supposed to be benefitting.

    Maybe someone could rewrite the speeches and press releases that AS puts out, providing an equally powerful message that inspires public support but one that also respects and empowers autistic people. If it is possible, then maybe AS could be persuaded to switch to that model. I don’t think they are evil, but more ignorant of the big picture that is needed. And the disability as disaster model did not begin with them but was well established long ago. It’s all tied up in the psychology of advertising to appeal to our raw emotions at the expense of fact and rationality. We all have grown up on it. So someone who understands the more empowering view needs to go out and write some great ad copy. And maybe we will even need some rich and powerful people like movie stars dripping with gold jewellry to give that message the pulling power that AS obviously has. Sigh.

    I’m possibly being very simplistic but that’s just what comes up for me when i read your (excellent ) post and also looked at some of the other comments here and on other blogs.

  8. nostromo says:

    The funny thing is the picture “Autism Speaks Co-founders Suzanne and Bob Wright with their grandson Christian” that sits alongside the article shows the author, her husband and their Autistic grandson all looking pretty happy – its totally at odds with the message being presented.

    • I picked up on that irony too nostromo, I wonder if they’re really aware of the message they’re sending and its disconnect from even their own lived reality. I think they’re so busy trying to package a message of emergency and doom that they’re not paying attention to the distortion.

  9. jonathan says:

    I don’t think severity matters as I’m an individual on the high functioning end of the spectrum and autism has made my life miserable. Perhaps Suzanne Wright could have used different rhetoric in her post, I don’t know. But she does make the valid general point that autism makes life difficult for family members and the people who have autism themselves. This is a valid point well taken. I believe it is the persons in neurodiversity who are at the mildest end of the spectrum who try to lump all other persons with autism with themselves.

    I’m glad Robison stepped down. He is a high school dropout with no knowledge or education in science who has shown a great disdain for parents of children on the spectrum (which I’m sure MJ can attest to). He states that he has no disability whatsoever, so I don’t understand how any psychologist (as his friend did) could diagnose him in good faith. He certainly does not represent an autistic voice. I hope at some point he resigns from his government positions also and gets out of autism advocacy.

    • Sheogorath says:

      Well, I am an individual on the ‘high functioning’ end of the spectrum, but Autism hasn’t made my life miserable, bullies and people who make no effort to meet me halfway have.
      As for your comments about John Elder Robison, they state that yyou aren’t actually Autistic since we have too much empathy to be so vicious.

  10. Sheogorath says:

    My parody of Suzanne Wright’s blogpost below:
    An Autistic Speaks to the Community – A Call for Action.
    This week is the week America will fully wake up to the Autism $peaks crisis.
    If six million people in America one day went missing – what would we as a country do?
    If six million people in America one morning were wiped from existence – what would we as a country do?
    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.
    We’d leave no stone unturned.
    Yet we’ve for the most part lost touch with six million American people, and as a community, we’ve done nothing.
    We’ve let people be silenced, disenfranchised, and murdered.
    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.
    Don’t we and our families deserve it? America has always been about its great people.
    Yet we seem to be forgotten in the debate about a genocidal ‘cure’ – even though we have often led others into the future.
    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? People smile knowing that their loved ones are happy doing what they do best.
    These families are living better lives than you envisage for them.
    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.
    This is Autism.
    Life is lived in the moment, enjoyed to the full, and people’s worlds are not a series of never ending meltdowns.
    This is Autism.
    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.
    This is Autism.
    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.
    This is Autism.
    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.
    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.
    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?
    There is no plan to build a city for six million people so we can be guaranteed our safety.
    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?
    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.
    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?
    But – there is no international plan.
    And – our futures depend on it.
    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.
    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.
    What is our plan?
    We can’t even craft one – without collaboration.
    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.
    This is an international emergency. We need an international action plan – NOW.
    I am posting this as a call for action on an international plan – NOW. I am asking the Autistic Community to respond to the threat of Autism $peaks with all the urgency it deserves – NOW.
    Autism $peaks – here we come – because we have an equal right to life – NOW.
    Suzanne Wright and her husband Bob co-founded Autism $peaks in 2005, and they have been ripping off their donors ever since by massively underproviding the services they were set up to deliver.
    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.
    Adapted without permission from an Autism Speaks blogpost under an exception for the purposes of criticism and review enshrined in the CDPA 1988.

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