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.

Picture of Amy Sequenzia She is a brunette woman with a black shirt and beige scarf.

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 .

 

Read more posts  from Amy Sequenzia.

About the Author:

Amy Sequenzia is a non-speaking Autistic, multiply disabled activist and writer. Amy writes about disability rights, civil rights and human rights. She also writes poetry.
Amy has presented in several conferences in the US and abroad, and her work is featured in books about being Autistic and Disabled. Amy is deeply involved with the Neurodiversity Movement and has been outspoken about the rights and worthy of disabled people.
Amy serves on the Board of Directors of the Autistic Self Advocacy Network (ASAN), and the Florida Alliance for Assistive Services and Technology (FAAST). http://nonspeakingautisticspeaking.blogspot.com and Autism Women’s Network. You can also follow Amy on Twitter at @AmySequenzia.

5 Comments

  1. Claire howett December 1, 2012 at 11:23 am - Reply

    I talk with autistic people and parents of children and adults on the spectrum. I don’t discriminate, and find it very useful to help me better understand my child with autism, and my aspie mum. Sometimes we clash, but we are all human. I value autistic views especially as my child is not very verbal, it is another helpful tool.

  2. Janet Abbey November 30, 2012 at 2:41 am - Reply

    I love reading you. I feel the same. As a former teacher I have had autistic students and the educational system is never going to be responsive. They are holding tanks of confinement for children until they become consumers. Schools are not about learning except as a side issue. They are about enforcing “normality” and discipline (Foucault: Discipline and Punish) I’d love to hear from you. I have such nice stories for you.

  3. Stimey November 18, 2012 at 10:46 am - Reply

    Me too. I want to understand why too.

  4. Virginia Perks November 15, 2012 at 10:54 am - Reply

    I am a parent of a 29 year old Autistic son, his name is Harry, i have read your blog here and totally agree with you…i have often thought of my struggles trying to get him the correct help, services, schools, i fought tooth and nail and came across great difficulties, and the bit you put in here about them telling you the “can’t” bit of it all, i proved them WRONG…i do so respect the fact that you have spoken out on this, i will have to look at writing and listening more to my son and what HE thinks, feels and hears, i am glad i found your blog:) i also want to know… Thank you so much. Virginia

  5. Meredith jamieson November 15, 2012 at 9:03 am - Reply

    Great piece Amy! I’m working with a young man whose mother does not want him to be with other folks who are intellectually challenged. Inclusion does not mean exclusion of others with the same differences! Respect, equality and friendships should never be limited based on a label/diagnosis.

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