Autism, Autism Speaks, And The True Stakeholders
    By Kim Wombles | May 24th 2012 10:15 AM | 14 comments | Print | E-mail | Track Comments
    About Kim

    Instructor of English and psychology and mother to three on the autism spectrum.

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    Autism isn't a four letter word in our house. It's not something we treat with kid gloves, not something we see as a tragedy or, in our kids' case, in need of a cure. We see it as something to be worked with and around, but we don't talk much about it terms of being a negative thing. We try not to define it in terms of  core deficits, but in terms of how it makes socialization and language more challenging and different. 

    It is what it is and in all honesty, we don't TALK about autism much here as a family. Everybody has issues and strengths. No biggie.

    Imagine my surprise, then, when I was giving Bobby some suggestions for conversation starters for a friend who was coming over and he reacted negatively, saying he didn't want to sound autistic. What the hell? What was so autistic about talking about something he and the person had in common? How did that rise to autism and does that mean I now talk autistic? And if I did, again why is that a big thing? I don't know--and Bobby couldn't articulate it. And I remain saddened that he would regard his disabilities that way. At some point, rejecting your own neurology just makes everything that much harder. I know it happens, know that we as individuals often hate a part of ourselves, and I'd be the first to admit that in cases of disability (and especially acquired disability), it's complicated and messy and there is no right answer. 

    Where did he learn it? In the end, Bobby was able to say that he didn't want to sound autistic because of something about the adaptive rec center he used to attend and how he sometimes felt there--and I hate to think that he learned to reject a piece of himself at a place he was sent to in order to have socialization opportunities. Others learn to hate a part of themselves from their parents (and I hope that I never, ever teach my children that). And parents learn that negativity from the society they live in. Organizations that are formed to help those individuals and families, therefore, have a responsibility to use rhetoric that does not make the lives of those individuals living with a condition, disorder, or disease worse.

    After all, learning to hate who you are--even when that means the challenges-- because of what society says and parents pass on creates more difficulties than it solves. It makes everything harder because instead of families being focused on adaptive coping, in seeing the good, in making dedicated efforts to improve their children's lives, time is lost in a pointless anger and a deeper bitterness.

    There are people suffering, people dealing with profound disability, and people, children, with genetic disorders that will shorten their lives drastically. In those cases, even when it's part of their neurology, it's absolutely understandable to view that disorder that takes so much, causes so much pain as something foreign to be fought. Our neurology can misfire on us in so many ways and sometimes those ways cause us serious, life-threatening issues--as Robert Rummel-Hudson notes in calling his daughter's genetic disorder a "monster" to be fought. Sometimes, a different neurology caused by genetic mutations is a bitch--something that takes from the ones we love the freedom to live  healthy lives, or in my husband and son's cases, feels like a ticking time bomb just waiting to go off (in Bob's case, again). Sometimes, there really are monsters to slay or wish most fervently away. It would be foolish and short-sided to not admit that somethings that go neurologically awry have horrible consequences for the people whose neurology it is. 

    But sometimes, a different neurology, a different way of processing the world, is just a difference, no monsters to be slayed, just skills to be taught, give and take to be learned (on both sides), accommodations to be made--work to be done, but no monsters. Challenges to be faced and overcome or got around (and I'm speaking of the autistic person who does all the work--progress doesn't happen without the individual doing all the work to build skills--we can't as parents do it for them, we can only guide and support).

    The problem with the spectrum is that it encompasses both these differences and the severe disability, the crippling add-ons like epilepsy and other medical conditions that make for definite monsters to stand up to and face and fight. People talking about autism get lost in this spectrum because of the huge variations. They see only the autism they know and assume everyone else's is the same as theirs, and that just isn't so. Many parents face what they believe will be bleak futures for their severely impacted children and understandably in light of that seek a cure, and can come to see autism as the monster that steals the child away (I'm thinking of that freaking horrid ad--I Am Autism that AS did a few short years ago). Rhetoric from organizations that serve to foster that atmosphere of choking fear are not helping these families.

    At a fundamental, undeniable level we are the dance of neurotransmitters across synaptic divides and electrical signals firing through neurons...we are our neurology, monsters or no monsters, and learning to accept ourselves means learning to live with our challenges, especially when there is no work around.

    So much of the rhetoric, though, from organizations isn't about acceptance of this fundamental reality and the need to provide everyone with the appropriate tool kits he or she needs to live the kind of lives we all hope for--satisfying, fulfilling lives with loved ones and friends and work that feeds our spirit. It doesn't mean that there aren't valuable tools to be found at these organizations who cast autism as a scourge that devastates children and families, but that the overall climate is so negative that building adaptive coping skills is hard in the face of that negativity.

    So much of the rhetoric is full of this need to fearmonger--to scare--to force parents into handing over money--making them afraid that if they don't do everything now(!), their children will be among the lost, the doomed. So much of it is also about being everything to everybody, and we all know how well that works--it pleases no one fully.

    Take the Autism Speaks' mission statement for example:

    At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders.

    That's admirable. Who would argue with that--except it doesn't mean a lot, does it? How? Obviously for the better, but how are they defining better? Notice--they are not. Everybody has the advantage of being able to read into this statement whatever he or she wants to.

    We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism;

    Okay, global outreach--because Autism Speaks wants to be the global foundation, not just an American organization--and by including all (causes, prevention, treatments, and cure), they make sure everyone can find something he or she likes--"oh, I don't like the cure part, but I like the treatment, I like the idea of children not having to face the struggles, the issues." 

    to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.

    Good. Note it led with individuals, too...where the focus should have always been. Yes, parents need support and tools, but autism primarily impacts the person with it. Supporting the individuals actually grappling with autism and the deficits that are imposed because of a disconnect between how our society functions and how autistics perceive and experience the world--that's where it needs to be--the other support is ancillary--and should help everyone cope and function more adaptively. No, it's not easy to be a parent, but it never was supposed to be easy. It's work. The right skill set can make it fruitful, rewarding work. 

    Here's the thing--note-the rhetoric doesn't say they want to actually HELP any of these people or how they would do it--they want to raise awareness and bring hope. How? Be specific! By providing parent training? Respite care? Job training? Social skills training? Supporting assisted living centers where autistic individuals can live with autonomy, getting the support they need?

    Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis.

    Define urgent. Define health crisis. How is autism a health crisis? One voice? What does that mean? Who decides which issues are the most important? The stakeholders in this are autistic individuals, after all, and the families that are being supportive of the autistic individuals. 

    It is our firm belief that, working together, we will find the missing pieces of the puzzle.

    What puzzle? I know it goes with the puzzle piece--but let's operationalize this--who's missing what? Is it society who is missing the vital information that would allow compassion, accommodation, acceptance, and the full inclusion of those with autism? Or is Autism Speaks saying that autism is a condition in which those who have it are missing pieces? I think we know where it probably is, but lets hope that perhaps it's both, although my children are not puzzles with missing pieces. They are incredible people who face their challenges every day with courage and dignity.

    Autism Speaks. It's time to listen.

    I get what they're doing here--it just doesn't mean anything, and that's the problem. We've got a mission statement set up to please the maximum number of supporters at the expense of any real content.

    And that's a problem. It's a problem because it represents the major issues with non-profit businesses that need to bring in revenue and have a business model built on growth and entering new markets. When that's your model, you don't want to piss off too many people, so you pick which groups you can afford to. You ignore the eloquent writings of people like  Amy Sequenzia and Kassiane and other autistics who offer constructive and valid criticism of your organization that could and would make your organization more responsive and helpful to the very people you claim to want to help. 

    Non-profit organizations should be moral institutions whose bedrock is built on service to the population they're fundraising in the name of. Autism Speaks, unlike the NAA and ASA, is primarily a fundraising organization. It's not built from the framework of service to its community, to its stakeholders, although it is making some effort to mediate this through the use of tool kits, family service chats, video glossaries, and the like. This is a very small part of its focus, though.

    Having had the pleasure of working with local non-profits, both in terms of service to its constituents and in terms of fundraising, I have found that any and all efforts are sincerely appreciated. People are treated well. On the other hand, working with a national (and increasingly international) fundraising organization like Autism Speaks, I have unfortunately found an often entirely different climate. There have been numerous occasions on the internet where individuals identified as AS workers have made complete, insensitive asses of themselves. As a volunteer, I have had the opportunity to witness a lack care, appreciation and regard for those people who give their time to the organization. I have been handled at times, like last year when AS sponsored the NAA convention where Wakefield spoke. I have also been genuinely and honestly communicated with by individuals in the organization, individuals whom I respect deeply and consider to be allies. 

    I am not implying that Autism Speaks does all things wrong, but they often do way too many things wrong, especially when it comes to listening to those with autism who communicate clearly and eloquently about the harm the rhetoric of Autism Speaks is causing autistic people. Autism Speaks is not an evil entity, as some would like to view it. It is a mixed bag, and that is in part because it is trying to be a little bit of everything to everyone in the autism community--it doesn't want to alienate people who can bring in money, and so it often forgets the most important part of an autism organization: the autistic individuals themselves.

    Service to the constituents an organization supposedly is representing is a moral imperative. Taking money from individuals who believe you will use it wisely to make lives better and not doing so is wrong. Using your volunteers, who are often parents of children on the spectrum or family members, as nothing more than revenue generators is wrong. If Autism Speaks wants to grow into new markets and continue to grow in existing markets, then it needs to change its focus. Raise money, sure--but make sure that at least some of that money raised in local markets is going back into services in the local market that will help autistic individuals and their families NOW will ensure future growth and prevent volunteer burnout.


    The irony here is that while you may not like how Autism Speaks for autism, people like this author, those with Asperger Syndrome, will be losing their autism credentials in any event. The Diagnostic and Statistical Manual of Mental Disorders, the bible for defining autism and other disabilities, is removing Asperger Syndrome from the Autism Spectrum Disorder menu. Also, there has never been anything clinically defined as "high functioning autism" and the new DSM will make it clear that autism is a flag waving, in your face disability that cannot be sugarcoated as merely differentness. People with obsolete labels of Aspergers might continue to refer to themselves autistic, but the forensics will not be there to back you up. You are not autistic and have no business appealing to the public as autism stakeholders. It is unethical and immoral to assume a label of disability when you do not fit the definitions. If you continue to represent yourself as autistic after the DSM5 is published, when you are not, expect yourself to be challenged.

    How about the people who ARE disabled and will lose the diagnosis? Oh, wait... If you strip away the coping mechanisms like learning to avoid the situations where meltdowns will happen, delaying meltdown for long enough to get to a private location, faking eye contact, or whatever the specific ones are for a person... it's ALL of us.

    Unless I'm mistaken, DSM-5 hasn't published yet, has it? I have heard estimates ranging between 75% to as few as 4% of those currently categorized in the spectrum being moved to a different diagnostic container. Even worst case, you'll still be stuck with some of us, probably more than you think. Redefining a part of the spectrum does not make it go away. In lieu of hard medical diagnostic criteria, which do not exist for ANY part of the spectrum, definitions of this kind will always be subject to interpretation by those in the professional arena with various stakes in the game. Clinical diagnosis at this point in time is differential diagnosis, with peer review, symptom profiles and no small amount of "couch bias". Symptom profiles that have been variously categorized as Asperger's, PDD-NOS, or yes, HFA overlap with each other, and again in distinct ways with more stark cases of autism. That's why it's called a spectrum. I can realize that where there is competition for limited resources for insurance, treatment, and placement services, that some will turn to credibility wars. Worried parents have a right to lobby for services for more severely affected individuals, but not at the expense of those who also require a degree of service, understanding and acceptance. Just because some of us seem "more normal" to your eye does not mean that we do not struggle every minute of every day to appear that way to you. I think eventually that there will be more solid medical criterion that will help define what autism is, its etiology, its "footprint" defined in fMRI, or other ways less nebulous than the current set. Voiding a subset of us with a stroke of the pen does little to advance us towards a better understanding of autism. Attitudes like yours have less to do with addressing the situation than staking out turf, and in the long run, do harm to unbiased research and treatment initiatives.

     Redefining a part of the spectrum does not make it go away.
    Sure it does, since that is how a part of the spectrum was created in the first place.  DSM IV was sloppy and DSM V won't make it so easy to label 80% of people as 'on the spectrum' for the same reason that DSM III did not; it will have some thought behind it.  At least we hope.
    Not created, categorized. Big difference. Real identification of who falls "on the spectrum" will come from more solid diagnostic capability, not a psychiatric thesaurus. While one does hope that there is some thought behind DSM-5, even a casual look at the chaotic nature of the committee proceedings so far does not lend much hope to that.

    I agree, it seems chaotic, but only because there is a lot more transparency now than ever before.  That is actually a good thing, compared to the more autocratic way it was done in I-III and the apparent free-for-all of IV. I think while the process looks messy the result will be far better.
    I sincerely hope so Hank. I don't attribute motive to the chaos, it's just when I hear that they've gone to the numerical designation "5" as opposed to "V", so they can add "point releases, makes us all feel a bit like alpha testers... There's a lot at stake for those who may need behavioral services being shifted to pharmacological services via a change in category. Things like this, where not just the degree of service changes, but the kind, should concern us all.

    Sure, it merits caution but if people want this process, and psychiatry and psychology in general, to be more scientific, they have to behave more scientifically, and they are doing it in this regard.   Like watching steaks get made, it isn't always pretty, but the fact they they are letting people see how the DSM is made, does not mean they will simply cave into the loudest constituency.  The wisdom of crowds is well known so we shouldn't regard it is weakness that they are finally not pretending they have all the answers.
    Bonny Bonobo alias Brat
    At a fundamental, undeniable level we are the dance of neurotransmitters across synaptic divides and electrical signals firing through neurons...we are our neurology, monsters or no monsters, and learning to accept ourselves means learning to live with our challenges, especially when there is no work around. 
    So very beautifully expressed Kim!
    My article about researchers identifying a potential blue green algae cause & L-Serine treatment for Lou Gehrig's ALS, MND, Parkinsons & Alzheimers is at
    Thank you, Helen.
    “Nothing in the world is more dangerous than a sincere ignorance and conscientious stupidity.” --MLK, Jr.
    Not only that, but fully a quarter of the folk who got straight AUTISTIC DISORDER diagnoses will lose them too. (Also, about 1 Aspergers person in 4 will stay ASD if the study I saw is correct.) When a quarter of the straight up autism folk are losing the diagnosis, something is wrong... cause this includes people with legitimate and obvious disability who NEED those supports!

    You saying that 1/4 will entirely fall through the cracks? I mean, if they have "obvious disability", are there not other, perhaps even new categories that apply? Or do you claim that according to the new categorization, 1/4 will be called perfectly fine, told to pull themselves together and get a job, and if they cannot handle the new responsibility and start acting out, police and prison system are there to welcome them? I would be very surprised - but then - there was the Reagan administration, so I guess it is possible.
    I don't live in the US, it doesn't affect me, it depends on how the criteria works if there is a tightening of what is considered the autistic spectrum will there then be a provision for a new category or will these individuals simply not be classed as autistic and not anything else either and therefore by default 'neuro-typical'.

    What is currently being proposed, a survey of what is on the spectrum tidying it up and setting up new categorizations so insurance companies, clinicians, parents and other interested stakeholder know exactly where a given individual stands or simply wiping out a whole aspect of the autistic spectrum.

    This is what you in the US need to consider I am not a blogger or activist or tweeter but those of you that are have the option ogf using use your collective clout to make sure yourselves or those for whom you have concern get a fair deal, no one wants to be trending on twitter in a bad light, or be higlighted in social media or web 2.0 in a bad light, no one needs a youtube video going viral that makes them look bad.

    This is an issue you need to address if it so suits you, and in the world of the internet you can.

    I don't write on this things and I don't sit for 12 hours a day with my child 'curing' his autism, or cooking meals from scratch in a surgically clean immaculate house, I simply lurch from one disaster to the next getting on with it.

    I don't really feel qualified to weigh in on any of this.

    But, as my friend said: yes, your child is severly autistic with severe and complex learning difficulties, I personally when I have done care work and when my parents forstered have rarely come accross a child as severe as yours, (this bit is paraphrased but it's what she meant,) when staff at your child's school tell you he is severly autistic and and severe and complex learning difficulties they are on point.

    When we first got to know each other and I would be sitting on her sofa putting on my son's shoes and kissing his feet before I put his shoes on and cuddling him and tickling him she would be watching me and I would be thinking it's OK I am not a pervert I don't do anything I shouldn't; she was actually mentally going her understanding and apparently everybody else's understanding of what you are supposed to do and I wasn't doing that, and what you are not supposed to do which apparently I was.

    She has explained to me that individuals less autistic than my child cannot my eye contact even with family/long term carers, and I don't get it if my severly autistic/complex learning difficulties can do it how hard can it be, he won't make eye contact with everyone but he does so with safe individuals and he understands with communicate with our eyes and I have seen him look my full in the eyes with distress because I won't let him have control of the TV remote control and the pc (they both learn they have to share take turns and wait, I never get to go on the computer or watch TV but you can't have everything).

    My son has taken to crying and having a mini tantrum for 5 minutes when he has been naughty and I will not allow him to have his own way, and then he will calm down and he will go into a monologue (he is non-speeking, non-potty trained), I may not know what he is saying but is going through the same: it's not fair, my life is simply awfull crap thta every child does when they are having a major sulk as if they are underpriviledged and deprived while you are thinking when I was a child..., and then he just gets on with it.

    I can see he is in his own way learning to cope, and he definately has a working knowledge of English sometimes I confuse him but on most basic stuff he 'gets' it, his older brother complains when I dress him because he dress himself, and he can with a bit of help he might sit there with an injured expression on his face but yes he can.

    My friend says he needs more structure in his life and he would thrive on it so I explained it to her: on factory farmed chicken (this may no longer be true, I don't know,) the lights are on 24 hrs a day so the chickens either do not sleep or hardly sleep they just eat, but occassionally there would be a power cut so these chickens that have never experienced darkness would panic and you would have the eqivalent of 'chicken riots', so a system was introduced, for half an hour every day the lights would go off so in the event of a power cut these chickens would not panic. I said the fact that he has some structure but not to the level I should be providing is his half an hour of darkness, because life throws you curves and you have to be able to cope.

    Apparently, according to my friend I have broken through barriers and done what is not considered possible (and even the teacher and teaching assitance at his school who practically accused me of child abuse/neglect because he didn't have a hat on in winter when he has sensory issues concerning his hair - wtf an autistic child that had to have his hair cut in his sleep at that time, its a no brainer I wasn't going to try and stick a hat on his head - said words to the effect of he is very sociable and we attribute that to you).

    I have done what I can, I'm not structured I am not a domestic goddess/earth mother, what I can do is hug my child and play with my child and work on his sensory preception by tickling him, it took a solid year of tickling before he responded but he does. You don't need to follow the rules and you can still get there, my son does need structure and now is the time to provide it because he now has a 'trained' understanding of emtion and the fact that people are strange but he has to hold himself in and cope. I'm surprised there isn't a: now hug your child, flashcard, since apparently a ten second or more hug realises oxytocin and current 'sneak treatment' for autism.

    You bloggers out there you need to tell your audience to reach into their souls and give something of themselves to their children/relatives on the spectrum, because they respond.

    And on a different notes: the rising tide of autism, a drastic way to reduce the numbers is to change the definition. Why is there not a vidoe game lampooning the whole rise in autism thing, you know instead of killer zombies, suddenly one day you realised 1 in 100 jumped to 1 in 88 and then 1 in 10, and there you are the one of the few alst neuro-typicals irritated at having to bow to the logic inhert in autism.