Amy Sequenzia: I, Too, Want to Understand.

Autistic blogger and Georgetown student Lydia Brown went to protest an Autism Speaks walk and asked some people: “do you want to hear from autistics?” The answer: “no”.

There are reasons why autistic self-advocates protest Autism Speaks. The people Lydia Brown was reaching out to were probably family members or friends of autistic persons.

Ariane Zurcher, blogger and mother of an autistic child wants to know why. Why would a parent of an autistic child decide that it is better not to listen to other autistics?

Henry wants to go to his neighborhood school and be with his friends, and the school district says “no”. Why there is no support for a teenager who wants to learn more?

Neurodivergent K., another autistic blogger, asks organizers of a panel about autism why there aren’t any autistics on the panel, and she finds out that the organizers thought it would be funny to pretend the panel never happened, even though it did.

I write an article about how Facilitated Communication changed my life and some people question the validity of my experience and my competence.

Parents of autistic children often look for information about therapies and treatments. They, of course, want the best for their child. They talk to “experts” who claim to know more about autism than anyone else because they have “experience”, even though they are not autistics and rely too much in stereotyping; they hear from schools and educators who say that it can be very hard to teach an autistic student, while turning their backs to a student who is asking for a chance to learn.

Some organizations claim to be helping us, but they exclude us from the conversation. Instead, they, together with doctors and therapists, emphasize the deficits of autism. There is very little talk about how to make the strengths part of an approach to include us. Some parents get completely lost with all the negativity.

I want to know why the “experts”, who claim that we don’t like to socialize, are not paying attention to someone like Henry, who wants not only a proper education, but also a social school experience.

I want to know why organizations, that claim to be fighting hard to make the lives of autistic children easier when they grow up, are so adamantly against talking to autistic adults.

I want to know why some parents dismiss autistic voices because they are “not like my child”, but still refuse to listen to autistics with very similar experiences of their children.

I want to know why some people choose to discredit one method of communication, without learning the reality of the method and the people who benefit from it, instead of supporting broader use of all methods of communication, helping to create accountability and improve best practices.

I want to know why, instead of avoiding learning from us, through our experiences, people try to silence us.

I don’t have an answer. I really want to know. I, too, want to understand.

Update: as I was finishing the review of this piece, Henry won his battle and he will be able to go to his neighborhood school. But there are many other Henrys trying to be included and receive a proper education.

Amy Sequenzia is a poet and autistic self-advocate. Her writing is as beautiful and powerful as she is. She is an extraordinary voice in the disability rights community .

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