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.