Monday, December 3, 2007

Thank You, Joe

Joe, a new member of Autism Hub, has a blog called Scanning the Spectrum. Joe is the man in this video, alone, holding the sign which reads "A Fight Against Autism is a Fight Against Autistics." Someone recorded Joe with his sign, alone, being ignored by participants in an Autism Speaks cure walk, and Christschool added some information on how the organization used its the funds contributed to its cause last year. Finally, CS noted some specific ways this same money could have been used to actually help autistic people.

I wonder how many people who donate to Autism Speaks and who walk in these events stop to think about what their contributions pay for. There may be a clue to be found in this video. How many people ignore the lone autistic man and his sign? What are they thinking? Here's some guy so damaged, so sick, he doesn't know what he's saying? Here is the enemy of our group, the autistic person?

While you are at Joe's blog, check out the story of his protest of an Autism Speaks event at TGIFriday's and his experience of being asked to leave the restaurant. Oh yeah, he was on his own for that one too. While people like me sit at the computer writing and making posters, wondering how to get enough people together to make a difference, this man just goes out and does what needs to be done. Alone. This is courage. This is integrity.

If you haven't visited Scanning the Spectrum, please stop by and welcome Joe to the Hub.

video by Christschool


  1. The autism spectrum is very broad. People who are trivially high-functioning/Aspergers need not avail themselves of any cure or mitigating agent./therapy discovered in the research. People on the low end of the spectrum who are significantly delayed in their mental development face entirely different challenges. Any effort to curtail research into aiding those on the low end of the spectrum is unloving.

    It is a huge stretch to blame Autism Speaks for any violence against autistic children. Parents who feel their autistic children are worthless, i.e, feel their children are better off dead will feel that way whether the woman in the video had mentioned her desperate thoughts or not. She did not go through with the evil she contemplated. How does that sanction the horrendous acts of violence committed by a very small number of parents of autistic children?

    Parents of children with classic autism would be overjoyed to have their children's diagnosis changed to Aspergers. We don't so much want a cure as something which will expeditiously move our children up the spectrum. We fear institutionalization of our children once we are too old to care for them,. Any effort to stop research which might prevent this outcome is not only wrong it is selfish. It is self-centered.

    The research is not about you. It is about those who are less fortunate.

  2. Thank you for sharing this. I look forward to reading Joe's blog.

  3. Kudos to both Joe for having the courage to protest and to Christschool for making the point about Autism Speaks so effectively!

  4. Mayfly,
    Did you watch the video? The suggestions made for ways contributions could benefit autistic people are meant to help your child. The goal of Autism Speaks is to make autism a word "only seen in history books." I would rather see autistic people provided with useful services than see millions spent on research into ways to prevent more autistics from being born.

    I wish nothing but the best for you and your child.

  5. mayfly:

    Since you're not likely to waver from the idea that people who are "trivially high-functioning" have no right to speak for "those who are less fortunate" (though you seem to feel free to exercise that "right" yourself), try reading the perspective of someone who has been repeatedly classified as "low functioning". You'll find that we don't all have the desire to move "up the spectrum" or consider ourselves "less fortunate" in congruence with functioning labels:

    Also see

    Another example of the dangers of distinguishing "high functioning" and "low functioning" is this: "If you're happy the way you are, you shouldn't be speaking for these unfortunate others." Which can be applied to *anybody* the instant they indicate they have something to say.

  6. Parents of children with classic autism would be overjoyed to have their children's diagnosis changed to Aspergers. We don't so much want a cure as something which will expeditiously move our children up the spectrum.

    From Why do you think I must want to be like you? by Amanda Baggs:

    "There is an increasingly common view among autistics that I am just an aspie...with 'co-morbid conditions' making me 'low-functioning' but which could be cured to release my inner aspie. That basically I am an aspie with defects.


    "Well I simply am not an aspie stereotype with good things taken away or bad things added. If I ever became an aspie stereotype I would lose things that are deep down and important to me. Spending my time aping that stereotype (if possible at all) would be just as draining to me as passing for non-autistic is for people who can manage that."

    I don't think there are many autistic advocates who have problems with "research into aiding those on the low end of the spectrum." (Well, some have problems with the conception of the spectrum as a straight line with ends, but other than that, no).

    What many autistic advocates do have a problem with is *what* research is done, *how* it is done, and how it is interpreted. Many treatments for autism are unproven or harmful (e.g. neuroleptics).

    Institutionalization is something many disability rights activists advocate against. (ADAPT is one organization devoted to de-institutionalization).

    The idea that there are certain kinds of people who "need" to be institutionalized--and that there are certain kinds of people who definitely won't be, for that matter--is socially constructed, and a myth. (For one thing, the doctors who pressured parents to institutionalize their children often had financial ties to the institution in town). Leo Kanner himself said that institutionalization did great harm to his autistic patients.

    The problem isn't that there are people whose disabilities make institutions necessary, and that the only way for them not to be institutionalized is to not have those disabilities anymore. It's that institutions exist in the first place. Many disability rights activists tackle the problem of institutions by advocating for other kinds of supports.

    Here's a post by Joel Smith called Institutions or Death.

  7. If you stop research, you're stopping those who are low-functioning from having a choice. How is that beneficial to them? How is that a demonstration of love for them? My daughter is currently incapable of expressing herself on facile things. If something miraculous became available to move her far up, or off the spectrum, and that something had no detrimental side effects. I would give it to her without hesitation

    Yes there needs to be money spent on services. Money needs to be sent on research as well. They are both worthwhile endeavors. One could argue "What if all the money sent in for Habitat for Humanity" were spent on autism services. Incidentally Habitat for Humanity, which does fine work, has a low rating concerning the amount of money spent to raise funds, as compared to the money raised.

    I am concerned over organizations such as Autism Speaks being infiltrated by the anti-vaccine cadre. My hope is that as the science showing how wrong that view becomes increasingly evident, the organization would separate itself totally from them.

    I do fear that work on on an autism genotype will lead to abortions of children with that genotype. Raising my daughter to this age has been the most rewarding and challenging thing my wife and I have ever done. I have to believe it is more life-changing than raising an NT child. It is a blessing few people will experience.

    To argue that there is no difference between high and low functioning autistics is to turn a blind-eye. I don't worry about my daughter not being able to read social clues, I worry about her getting out of the house unsupervised. I worry that she'll be abused.

    All things being equal it is better to have friends. All things being equal it is better to be able to express yourself. All things being equal it is better to participate in this world. Would any one who has and does these things want to give them up?

    I'd like my daughter to have and to do these things. Why would you be against research which might help her?

  8. I have a friend who is LFA. Ahe has lots of friends. She is verbal (although she couldn't speak until age 9) but still has severe speech difficulties. She can communicate better by typing, although she struggles with spelling. Your daughter can make friends without turning into someone else.

    Teaching her to express herself in a way NT people understand isn't the same as moving her "up or off the spectrum", any more than teaching a Kurdish immigrant to Britain English would turn them into a British person.

  9. Christchurch's video has a great message (although I'd prefer the you-tube logo to not be over-imprinting a corner of it). GreedSpeaks is more about raising money than it is about helping people. The whole "raise money to cure autism/prevent autistics" is turning into something like a religion, all the way down to the megachurch-style fundraising.

  10. mayfly,
    I do not oppose research. I support research that is ethical, purposeful and well designed. I support research which seeks to make people's lives better.

    When a group is excluded from participation in an organization claiming to serve members of that group, there is at the very least the appearance of ill will. Autism Speaks has not chosen to include a single autistic person in its direction, and we are not welcome to speak at their events.

    Some people who support Autism Speaks have no idea what their money is used for. There are many things autistic people need. Prevention is not one of them.

    Thank you for the excellent link!

  11. As far as I can tell my daughter has never exhibited any interest in making friends. There are lots of people who have reached out her, she just doesn't reciprocate.

    We've tried lots of different means of communication. Her receptive language while being severely limited is much better than her expressive which is restricted to bringing us what she wants, or clapping beside the cupboard which contains it. There are of course lots of smiles, and some fits of anger.

    We tried PECS many times she either damaged or absconded with the icons. At school, they are trying want to teach her to type. Currently she doesn't know if a book is upside down. Her teacher is great and believes despite this, my daughter will succeed at this task.

    We are not trying to make her communicate like an NT child. I would be elated if she did, but well satisfied with anything which would give her a voice.

    We are lucky that the church we attend has made reaching out to special needs children and/or their parents a reality. We've been told by other organizations that our daughter was too far down the spectrum.

    She has lot's of people who love her dearly. We as her parents have a supportive community. We don't see her as a train wreck, without spirit, or an empty shell. We do feel that she would be better off if higher functioning. We would find it one bit tragic if she awoke tomorrow an NT child. Autistic or NT our love for her grows daily.

    Thank you Tera for the information on ADAPT.

    Bev, if a cure were available, safe and optional would you fight against it? Why? What research would you find ethical? What research would you find unethical. What research currently being done by Autism speaks is unethical, not frivilous, but unethical. What do you envision the role of the autistic person at Autism Speaks. What would you do at their fundraisers, if the ban were lifted?

  12. Mayfly,

    If pecs was unsuccessful (could have been aversive because of the way its taught), a Dynavox or Light Writer, which was one of my suggestions, might be helpful. See a demonstration here of a Dynavox:

    Despite Portia Iverson's vast wealth, it apparently took years for her to discover a Light Writer for her son Dov. Unfortunately, Ms. Iverson and her husband Mr. Shestack did not listen to autistic adults nor did they bother to engage them as far as I'm aware of, otherwise, she/he would have been aware of this technology long ago or perhaps they thought they could "cure" Dov. They did ABA, biomed and whatever was the autism treatment du jour according to non-autistic people, some of which is in her video collection.

    You can see Dov using his light writer in this video:

    Warning, this video was very painful for me to watch as I'm sure it will be for others. Not because of Dov, but because of how Dov is being treated by the person in the video. Ms. Iverson is filming. Its also obvious to me that Dov was verbally told that being autistic is a bad thing based on what he wrote. I hope Dov can one day be able to scream at the top of his lungs that he is not a freak as the person who was sitting next to him was treating him.

    Dynavox and Light Writers should be funded with the money Autism Speaks raises, but instead, they search for some sort of genetic test to eliminate autistic people, like what happened with Down's research. Why fund a study to take pictures of autistic faces unless there is some sort of fear that someone might be autistic? It's all fear based research.

    Autism Speaks outlines most of the research they funded in their 990 form. Non of it is useful in my opinion. I had one person (a medical doctor) familiar with a research project funded by Autism Speaks tell me that some of the money in a particular grant was used to purchase a persian rug for the researcher's office. What would happen if autistic people who have a perserveration with numbers were to audit these grants? I can guarantee you no persian rugs would be funded.

  13. I should clarify that Portia Iverson and Jon Shestack founded "Cure Autism Now" which was merged into Autism Speaks. Mr. Shestack is now a board member of Autism Speaks.

  14. I have to agree with those that say that the money raised at fundraising events need to be used for effective research, and not into unsubstantiated or ideologically motivated treatments.

    As an autistic who was diagnosed at various levels at functioning in my life, I find it horrifying that my experiences are defined as "trivial." I don't know what the typical AS person is like, but there's quite a range there as well, and most are unable to work or get help through their public school systems, vocational rehabs, or healthcare. And being a person who has just been diagnosed with the AS label (when I was a first grader, professionals were convinced I would live out my life in an institution), I resent such characterizations.

    I don't even know what else to write, except I wish the compassion these parents wish were exhibited to them would be expanded to include those, even those newly moved up the sprectrum, who have the more "trivial forms" of autism.

  15. Research clearly demonstrates, except in rare instances, facilitated communications is a sham. See for a great summary on the topic. If our daughter shows any indication of being able to type we plan on getting her one. We don't think her lack of communication is because of oral apraxia. She certainly doesn't lack hand-eye coordination. She has a very difficult time using pictures to represent objects. I'm sorry, but to believe she could suddenly use things as abstract as words just does not follow.

    But we will get her one, not because it will unleash a hidden ability to communicate, but with the hope we can teach her to do so.

  16. Does it never occur to people that some people just don;t want friends? Who says that their way of doing things is the only way to be?

    She clearly communicated she didn't like the PECS, did she not?

    It's a bit presumptive for you, ms mayfly, to declare someone who expressed murder in her heart loving, but to say those of us who have spent hours teaching autistic kids who aren't our flesh and blood aren't loving, just because we're autistic and disagree with you.

    Is it ok to do that because we disagree with you, or because we're autistic?

    And don't try to put me on your line, you'll twist it beyond recognition trying.

  17. Mayfly, if you believe the Dynavox is a sham because its facilitated communication, then you must believe PECS is a sham as well because a Dynavox is nothing but an electronic PECS with a speech generator.

  18. Indeed, there seems to be a whole lot of confusion about this issue:

    Facilitated communication (FC) is a means of helping someone access a communication method (whether it's typing, pictures, or something else entirely).

    Augmentative and alternative communication (AAC) is communication other than speech that either replaces speech or adds to what a person can communicate through speech that's either limited or intermittent or both.

    A Dynavox is an AAC device. It can be accessed independently, or it can be accessed using FC. (Just like any other thing of this nature can be.)

    I would also not be so fast about assuming that a person who can't understand pictures can't type. Donna Williams couldn't use pictures because she saw objects as fragmented pieces, and also had trouble with understanding both written and spoken language. She still eventually learned to write and speak in ways that other people consider more or less standard (although that's of course a very superficial judgment people are making). She had been picking up a lot of things unconsciously that she was not even aware of.

    And for a person who can't do standard language either, there is always communication through objects and a number of other things. And research into those things should happen. I don't know any autistic person who thinks otherwise.

    But a lot of us have problems with what the bulk of research is doing: It's shoddy, it's sloppy, it starts with the wrong assumptions, it's prejudiced, and it's designed in such a way as to confirm what it assumes will happen. (See Morton Gernsbacher's writing for some interesting examples of this.)

    As for "significantly delayed in their mental development," there's actual (solid) research out there saying that's rarely the actual fact of the matter, even in people where that's the assumption: The tests are biased and the people giving them are biased. (See Mottron, Dawson, etc.)

    And as to whether a lot of research "aids those on the low end of the spectrum..." well there's a lot of places to start with that, but I suspect a lot of us here simply don't believe that's what most of the research supported there will do. And we have good reasons not to believe it. Is that unloving?

  19. Oh, also, the Dynavox is a lot more than PECS.

    It can be used with the PCS symbols (not PECS, because PECS refers to a specific manner of using those symbols). It can also be used with other symbols.

    It can also be used with photographs of actual objects.

    It can also be used with words of various sorts, and word prediction, in a whole lot of formats with and without pictures.

    It can be used in a mode where there is an entire room and clicking on different objects in the room does something different. This can be through illustrations or it can be through actual photographs of a room where you map different parts of it to different things.

    It's basically a computer system with some specific software on it that's pretty flexible as far as how communication goes.

  20. ballastexistenz,
    Thank you for taking the time to explain a bit about these communication tools and strategies.

  21. Oh, also, for people who are blind or have trouble with visual processing, it can read off various words or be programmed to make various sounds while scanning through selections, then the person only has to press a button when they hear the right one.


Squawk at me.
Need to add an image?
Use this code [img]IMAGE-URL-HERE[/img]