Monthly Archives: December 2013

adaption of an unanswered letter to Sprouts

By @rtanen]
Sprouts, and many other corporations, are major supporters of the nonprofit organization Autism Speaks. However, many in the autistic community, such as those associated with the Autism Self Advocacy Network (http://autisticadvocacy.org/2009/10/letter-to-the-sponsors-donors-and-supporters-of-autism-speaks/) feel that Autism Speak’s actions may do more harm than good to people on the autism spectrum, such as myself.
According to their mission statement (http://www.autismspeaks.org/about-us/mission), Autism Speaks is “dedicated to funding global biomedical research into the causes, prevention, treatments and cure for autism; to raising public awareness about autism and its effects on individuals, families and society; and to bringing hope to all who deal with the hardships of this disorder.” Autism Speaks considers the existence of autistic individuals to be an “urgent global health crisis. It is [their] firm belief that, working together, [they] will find the missing pieces of the puzzle.”
Note that Autism Speaks mentions the “prevention” of autism. As an autistic individual who considers many of the strengths and weaknesses caused by autism to be important aspects of herself, I would not wish to be prevented. People considered to be “low-functioning,” such as Amanda Baggs (http://ballastexistenz.wordpress.com) also do not feel that their existence should be “prevented.” Interestingly enough, many people, including medical professionals, have made attempts to “prevent” the continuing existence of Ms. Baggs by, for example, pressuring her not to treat life-threatening medical problems. What, exactly, would the prevention of autism entail? Would it mean that no future children would be born that are similar to myself or Ms. Baggs? Perhaps Autism Speaks, a group not composed of autistic people, would consider that an acceptable, even desirable, outcome, but I do not.
Additionally, Autism Speaks funds research into a cure for autism. Such a cure would, presumably, leave a formerly autistic person neurotypical. The majority of autistics online believe that our autism is a fundamental part of our personalities, and any cure that rendered us neurotypical would effectively destroy us and leave different people in our places. There are better methods of solving problems presented by autistic weaknesses, such as modifying light fixtures that make it difficult for some to concentrate, and stating things clearly instead of assuming others will automatically pick up on them. As autism provides useful strengths as well as weaknesses, curing autism would be throwing out the baby along with the bathwater.
According to their 2011 990 tax form (http://www.autismspeaks.org/sites/default/files/documents/2011_tax_form_990.pdf, page 2), they spent $4,477,702, or only 10.89% of $41,134,234 (their total program service expenses) on providing resources for families of autistic children. $24,053,561, or 58.48% was spent on research into areas such as those mentioned in above paragraphs. Finally, $10,238,115 or 24.89% was spent on publicity events and tools such as their website, World Autism Awareness Day, and more.
Does this sound like the expenditures and goals of an organization that cares about autistics, such as the CEO of Sprout’s son? If you are interested in supporting autistics via donations to nonprofits, you may wish to look into other groups, such as the Autism Self Advocacy Network. Try to find groups with a significant number of autistics in positions of power (not just one token on the advisory board).
Even donating to organizations unrelated to autism, such as UNICEF, is better for autistics than donating to Autism Speaks is, because money sent to Autism Speaks can do more harm than good. Autism Speak’s “awareness” campaigns promote harmful stereotypes about autism, such as the idea that it “takes away” normal children. Autism Speaks claims that my family cannot engage in enjoyable activities, and that my parents divorced because of me. (Note that my parents enjoy a happy marriage.)
Recently, Autism Speaks directed families attending its “Resource Fair” to the Judge Rotenberg Center, a group that uses electrical torture (not electroshock therapy, which is administered to an anesthetized, often consenting patient) to try and get autistic children and others to stop behaviors such as swearing, getting up out of one’s seat during class, closing one’s eyes for more than 10 seconds, or touching one’s hair, claiming that such behaviors are violence or self-harm. When I heard that Autism Speaks was endorsing the JRC, it felt like hearing an American political party I disagreed with was endorsing terrorist groups. I spent the whole day feeling literally sick to my stomach. If Autism Speaks had a smaller budget, they could not have held such an event, and vulnerable parents might not have been lured in by the promises of the JRC.
Autism Speaks does not speak for autistics. If you support people on the autism spectrum, please donate to other organizations.
This is an adaptation of the author’s letter to Sprouts Farmer’s Market, sent in June 2013 with no response. The author is a high school student with Asperger’s Syndrome.

Beyond Stereotypes

Printed with permission from the author, Amy Sequenzia

Beyond Stereotypes

 

I am not autism, I am an autistic person

My life is not a tragedy, it is a growing process

Like yours

I have good days and bad days

Like you

My parents fought for me, not against me

They fought for my rights

The nights I spent awake made me think about my life

My family and friends also thought about it

They saw me beyond a diagnosis and saw my potential

They accepted me and worked hard to provide me with life experience

When is the rest of the world going to follow their example?

There were times of hardship but I am part of the human race

I am not immune to hardships

My neighbors learned how to see me as a whole person

The ones who never did

Lost an opportunity to experience diversity

I am autistic

I am not a tragedy

I am not robbing anything, anyone

I was not robbed of my life

I am who I am

This is my life

Sign the Petition

Like our Facebook Page

 

 

Copyright 2011 by Amy Sequenzia

The Price We Pay For Autism Speaks

The Price Pay For Autsim Speaks by Heather Clark raisingrebelsouls.blogspot.com

The Price We Pay for Autism Speaks

 
I lay in bed last night worrying about how my Autistic children will have to pay for this. Tomorrow, Autism Speaks will hold a National Policy and Action Summit in Washington DC to speak with Congress. As is their modus operandi, Autism Speaks has intentionally excluded Autistic voices in their platform. My children will pay. Please, (if you can stomach it) take the time to read this horrid letter written by co-founder of Autism Speaks, Suzanne Wright, Autism Speaks to Washington – A Call for Action. That venomous woman is talking about my sons. That hateful woman is talking about me. It must be easier for her to spit, when she erases the Autistic adults who oppose her fear for dollars agenda. I cannot predict the repercussions my Autistic children will face in the future because of Autism Speaks’ fear mongering ways. I can only describe the suffering I have already spent, at the hands of our Nation’s biggest Autism organization.I was lost. Days before a pediatrician had sent a referral to Early Intervention for my son. I described my state of mind at the time as akin to being hit with a brick. Stunned. I reached out to other Mothers for help and was immediately directed to the “well respected,” Autism Speaks website. The brainwashed do wash brains. Ignorance smoothes the process. I hesitated typing in the registration information that Autism Speaks required as entrance. I was scared to make any move, let alone add my child to their list, but I did it. I needed help, I needed information, I needed to understand my child, and apparently Autism Speaks was the way. What followed was the darkest day in my journey of parenting Autistic children. I paid in broken heart.

There were videos of other small Autistic children playing, but they were playing the Autistic way, and that was wrong. These children looked just like my son. Right then and there, Autism Speaks solidified all the fearful and false ideas about Autism that I had whirling around in my confused head. Everything on the site, everything surrounding these videos of beautiful children playing, cemented my ignorance, reduced my hope, and sent me into a tailspin of pain.My son became wrong (and eventually both of my sons became wrong). I cried more than a Mother should in that one darkest day because I believed it was my child who was lost. I believed the Autism Speaks lie. The one Suzanne Wright is telling our congress tomorrow. It cost me something good.

The most important factor in any child’s health and happiness is their relationship with their parents, but Autism Speaks’ work directly damaged the connection I had with mine. Because they created such a sense of urgency and panic within me, because they recommended intense and unreasonable therapies, because they portrayed my Autistic children as inherently wrong and in need of fixing, I settled into grief before I had a chance to collect my thoughts and make sense. Instead, I let a sense of separation grow between the people I love most and myself. I saw a divide where there never was one. I subjected my children to evaluations, therapies, and schedules that I imagined would create a path for our connection, but the truth is that I was letting the negative ideas promoted by Autism Speaks take that away. I let them rob me.

Autism Speaks continues to exploit my children’s neurology and they take advantage of the vulnerability of parents everywhere. They hold our hearts and minds ransom. Now they broaden their attack to gain more control within our government. They attempt to legislate their ableist ways. I lay awake late last night, and I woke up too early too. I hold myself responsible for believing their lies. I hold guilt and shame for it. There is no refund for the time and love I lost. None of my pain has worth though, not compared to what they have done to my sons, not compared to what they have done to all Autistics, not compared to what they will do tomorrow. They are creating a debt of hatred, my Autistic children cannot afford. Autism Speaks needs to pay.

Please get involved!

Why? Why? Why?

love explosions

“We love how Evie is always happy & smiling.”

This is a picture of the note that Evie’s para educator wrote yesterday.

evie note school

Today her note was short.

“Great Day!  So happy all day long!”

This is my Evie.

Full of love.  Full of life.  Full of happy.

This is my child.  And I love her with every corner of my being.

I’ve been labeled as radical–part of a fringe movement.

When did a mother’s love for her child become some sort of unthinkable political statement?

Here’s the thing.  Evie is Autistic.

My love cannot be contained in those tragic little boxes that it is supposed to fit in when you’re the mother of a non-speaking Autistic child.

And I don’t try to confine it.  So it explodes out all over the world.

Just like it has always done.

Because freaking damnit!

Evie deserves more love than I will ever be…

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