Wednesday, September 23, 2009

To the leadership of Autism Speaks

I recently read the Autism Speaks modification of the Ransom Notes campaign. I feel many things on reading it, and one is the horror of knowing that the leadership of that group apparently wishes that I had never been born, or that I would die at once. They assume that I am a burden on society. They assume that I am totally uncaring about anyone else, and have been completely robbed of social skills. They do not even know me- yet they make these assumptions.

Here are a few of the many facts they do not know about me:

(1) I have a number of published research papers in international mathematics journals.

(2) I have a PhD in my field.

(3) I have many friends, and none of them consider me to be a burden to anyone.

(4) I have children. All are non-spectrum.

(5) I was officially confirmed as "Asperger's"- that's right, on the autism spectrum- as an adult. I did well in mathematics because it has been a special interest of mine- an autistic perseveration- and yes, many of us have perseverations that lead to wonderful contributions to society if we are allowed to pursue them- and others of us have perseverations that are just a great deal of fun- and since you have no way to know which is which, and neither do we--why do you try to change something beautiful and cause grief and harm in the process?

(6) I have feelings. I have the capacity to feel emotional pain, including the rudeness of Autism Speaks. In addition, you have insulted many of my friends, and I feel equally badly at that. I don't like that you made them feel every bit as badly as you made me feel. I grieve for the children whose parents are afraid to get help for them, because your campaign has increased the stigma attached to being on the spectrum. Did you really mean to do this?

(7) I remember well before I could talk, and I had feelings then, as well. I was a person, and had the right to live. I do not appreciate the implication that the right to live should be taken away from those who are nonverbal. I do not appreciate the idea that I should have been aborted. To those in leadership of Autism Speaks, how would you feel if anyone said this about you? What would you do if someone published such a report?

(8) I have friends who are nonverbal adults. All of them contribute to society. All of them interact with assistive technology- and all of them type. I first met them online. One I know face-to-face and have been privileged to interact with her a great deal, and another, I will meet later this week for the first time- I am really excited! These are highly intelligent people.

(9) I pay taxes. I live independently. In fact, I teach college.

(10) If I were suddenly to become neurotypical, my IQ would need to be lowered substantially. I would have to give up my special abilities, such as synesthesia, perfect pitch, or the capability to think outside the box. I have many others as well.

(11) I have weaknesses, but I have learned to ask other people for help when needed- for example, saying: "how do you feel about that", because I know I do not read feelings well- and they appreciate that I care- and I know that they do, even if I do not read that they do. People were meant to live together, sharing strengths and weaknesses with one another- we are all greater because we can all share with one another. This does not make any of us burdens on society.

(12) I like neuroptypical people. I also like autistic folk. I believe we all have a right to be.

(13) As a child, I remember being in deep emotional pain caused by misunderstandings, and the key part of this was in people's instructions to put a nice face on everything and completely deny my own feelings- that I was only supposed to think happy thoughts, and nothing else. I find this mentality all too prevalent among the "curebie" idea that you lock away those who cannot be made to look normal, and for the rest, you punish any behavior that is acknowledgment of a neurological difference.

(14) Finally, it is written that we are 'fearfully and wonderfully made", and our "soul knows it right well" (see Verses 13 and 14 of Psalms 139). Therefore, I am fairly certain that the leadership of Autism Speaks is not comprised of people of faith, but in case there are some, please know that God created us for a reason, as He created you.

It is not too late to turn back. Maybe, if my letter has made you feel something, you will write back to learn more.


  1. This is a great response.

    Living well is the best revenge, and all that.


  2. Claudia,
    Your response is well thought out and presented beautifully.

    I am proud to be on the spectrum and to say that I know you in the cyber-realm.

    AutSpeaks is purveying the same type of ideology leading to extermination that led to oppressive regimes like the American slave owners, the KKK and Nazi Germany.

    What do we expect? They're really not helping autistic people...Autism Speaks is just another media-savvy, well-monied lobbying organization that needs to be investigated by the federal government for their slanderous, fraudulent,defamatory and discriminatory practices.

    At bare minimun their 501(c)3 status should be revoked if they are considered non-profit.
    Sharon from Aspires

  3. Thank you both for your kind words. We are all people- none should be eliminated-

    A friend of a friend signed up to walk with Autism Speaks, and was a member, but saw the recent ads saying that we make our families bankrupt and ruin marriages, etc.- and my friend's friend has now decided to protest, instead. What is this advertisement trying to say- that people with disabilities should be eliminated? I know that my social skills are not the best at times- indeed, I am formally diagnosed as having weak ones- but this was either a very bad social error on the part of Autism Speaks, or it means exactly what it appears to mean- that people with disabilities should be eliminated from society. I have had to retract things I have said many times. I have seen where Autism Speaks has taken this statement off some places where it was posted- but I am waiting for it to come down from U-Tube. Maybe it will occur. I hope it is soon.

  4. Dear Claudia,
    Well said! You have a kindred spirit in me ;)
    Those who choose to 'speak' for Autism should do so with respect to the dignity, personhood, honour, passions, being and soul of all those wonderful people on the Spectrum. If those 'speaking' are not on the Spectrum themselves, they should fervently consult those who are on the Spectrum to clarify information/ideas, if not endeavour to 'join' with the autistic person on their valuable and honorable journey through their lives (and experience). Anyone organization proclaiming to 'represent' Autism in any way shape or form, should be lead by those souls who are on the Spectrum; not preach to them, undermine their rightful existance and should embrace the truest intentions of serving humanity in an intelligent and educated way.
    Best wishes, Louise (Heart and Soul of Autism

  5. Hi Louise,

    What a great post! I particularly love your statement that people should clarify information: I have to do that with typical people all the time, and it feels really good when typical people make sure they have my correct meaning and impressions. Thank you for writing!
    Best wishes,