I Am Autistic and I Know What Autism Is

My Name is Amy.I am a writer, a poet, an activist, a self-advocate. I am HAPPY. I am PROUD, I am AUTISTIC.

There is a video on You Tube, made by some parents of autistic children, that starts by showing autistic adults talking at a congressional hearing.

The tone sounds friendly but the intention is dismissive. The video says that the autistics shown are not “real autistics” because they can speak and they are successful.

I already wrote about these disrespectful assumptions. But the rest of the video is even worse.

It shows children screaming, in pain, having meltdowns and seizures, refusing to eat. A woman’s voice claims that parents “live with autism everyday” and “This is Autism”.

Then, this:

“We have dreams for our children”

“to live free from pain”

“no seizures”

“for them to be able to feed themselves, use the toilet, control their outbursts, think coherently”

“to speak”

I ask:

Which parent does not have dreams for their children? This is not autism privilege, this is parenting.

Pain comes in different ways, to all people. This is not autism, this is life.

Seizures are bad, but they are not autism.

Motor coordination is not autism either.

Many people are, or will be, incontinent. This is not autism. This could be anything.

Some autistics have meltdowns and there is always a reason. Outburst is not autism. Anyone can have one.

How can a parent say that a child cannot have a coherent thought if the parent can’t understand the difference between communication and speech?

Some people can experience the parts of autism that can be sometimes painful and uncomfortable but this is not all autism is. Finding better services and solutions for the discomfort is a good goal that we all support.

Finding a cure for epilepsy is dream and a goal I support.

I am Autistic. I cannot eat by myself a lot of the time. I self-advocate and I am happy.

I am Autistic. I have seizures almost every day. I self-advocate and I am happy.

I am Autistic and I used to have loud meltdowns. Sometimes I bite my hands. Sometimes I hit my legs. I self-advocate and I am happy.

I am Autistic. Some nights I have very little sleep or no sleep at all. I self-advocate and I am happy.

I am Autistic. I need a lot of support but I found my independence. I self-advocate and I am happy.

I am Autistic. I have dreams for myself.

I think.

I communicate, without speech. I self-advocate and I am happy.

I am Autistic. Sometimes I am complicated. I self-advocate and I am happy.

The video shows deficits and that is not autism.

Autism is good, bad, complicated, delightful.

We autistics grow, we change, we learn, we get stuck.

We are happy, sad, angry, lovely.

That video is not autism.

Autism is life.

I know. I live it every day.

And I am happy.

Image description black and white photograph of woman with short dark brown hair. She is smiling. Dark grey text reads:Amy Sequenzia Passionate Autistic activist, writer, and poet . Read more from Amy on Ollibean and visit nonspeakingautisticspeaking.blogspot.com .

 

 

 

 

 

 

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.

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