An Open Letter About Autism Acceptance to Pope Francis from Amy Sequenzia

Dear Pope Francis:

I think I am supposed to call you “Your Holiness”. I am here to teach you some important things about autism, about being Autistic, and about Autism Speaks.

You recently met with Suzanne Wright, co-founder of Autism Speaks, and your lack of understanding about my neurology and about who I am makes it look like you don’t care about social justice.

Yes, I am Autistic, Disabled and proud.

I don’t want pity.

I don’t need Ms. Wright’s hateful words.

Autism Speaks does not speak for me.

I will use her speech to teach you and show why cure and prevention of autism go against my human rights.

I will “translate” the speech, I will tell you the real meaning of Suzanne Wright’s words.

First, you need to know what Autism Speaks really stands for: hate.

Autism Speaks raises money by demonizing people like me, and by martyring parents, as if parenting Autistics is a burden, and a tragic living.

Autism Speaks also ignores Autistic adults, people like me, very disabled and very proud of my neurology.

Now, the speech.

Suzanne Wright starts by saying autism is a health crisis.

Wrong. We are not diseased or disordered. Autism is our identity, like the color of our skin. Is there a “black people health crisis”? An “Asian health crisis”? I think you get my point.

She says that “autism families” suffer. She can’t even use the correct words. Autism families are only a thing if all the members are Autistic.

The only suffering comes through her hateful rhetoric and stigmatization.

What she really meant was that in her distorted view of autism, all Autistics cause suffering to non-autistic family members. See how she does not see us as sentient beings?

Then she talks about how everyone is tired of us, the extreme work for no reward. She does not sound too concerned with her faith. Doesn’t the Catholic Church teach that heaven is for the poor and humble?

She mentions the lack of information about autism, purposefully leaving out how Autism Speaks, under her guidance, misinforms the public.

She briefly mentions her grandson, trying to paint him as pitiful. Well, I am an adult with a lot of needs and my friends say I am pretty awesome.

Suzanne Wright not only diminishes Autistic people’s experiences of the world, she also shows her ableism toward people who have Hansen’s disease, referring to them as lepers.

To her, we are to be viewed as undesirable, unapproachable, not to be touched, while our parents are saints, doing (according to her) the ultimate act of love a parent of an Autistic person can do: look at us.

This is a very messed up statement, from a supposedly loving grandmother.

To Suzanne Wright, Autistic people do not deserve appreciation or respect for just being. We are only to be valued if we can be, act and look “less autistic”.

Then, she calls us not human enough. She states that we don’t learn, worry, rejoice, live. She decided that our dreams and wishes are unimportant and not worthy of anyone’s attention.

What Suzanne Wright says her organization does is simply a lie. The truth is that Autism Speaks uses only 3% of the donations it receives to help Autistics and their families. Autistics adults are not even considered by the organization. Most of the money raised is to enrich executives and to find a genetic marker, with this objective: selective abortions. And she brought St. Francis to the conversation. How can the Catholic Church reconcile it’s rejection of abortion, yet allow a speech from someone whose mission in life is to find a way to, through selective abortion, make sure people like me do not exist?

The isolation, harassment, shame and disgrace she mentions should be spelled out as the mission statement of her organization, since that’s what Autism Speaks engages on with full force.

The blue light she talks about? It magically turns into green dollars, used in propaganda that demonizes us, martyrs our families, and ignores our voices. Propaganda like her speech to you.

The lies about how she really feels about us don’t change the reality of what her organization promotes: her “village” is not welcoming to, or safe for us, Autistics who just want to be, to exist.

Suzanne Wright lacks humbleness. She believes that she is on a mission to rid the world of autism, of Autistics. She does not listen to the many Autistics saying that our lives are worthy, that she is wrong and hurtful. But her goal of portraying autism as a devastating disease, of portraying Autistics as less than useless human beings, is advanced by her savvy marketing skills. She uses fear to spread hate – packaged as compassion – and she uses her wealth to gain access.

She gained access to you, dear Pope Francis.

She spread her lies, disguised as a call to love.

You now know the truth, easily confirmed by how she directs her organization.

I am Autistic, Disabled and proud.

I know what autism is.

Your Holiness, are you going to silence me? Are you going to deny my wholeness, my perfect humanity, as imperfect as all humans are, still deserving of a life free from hateful attacks?

Suzanne Wright has an agenda and it goes against my right to exist.

What are you going to do in support of my right to be, just as I am?

What are you going to do about all Autistics right to exist, just like we are?


"We Cannot Stop" by Amy SequenziaAbout the Author, Amy Sequenzia.