I have long been aware of Stephen Shore, the only autistic member on Autism Speaks board I know of and have been wanting to ask him why?
What attracted him to working for an organization that many Autistic’s see as a company feeding from the fear of parents.
The ‘I Am Autism’ advert has and always will cause outrage and rightly so, the transcript to it in its entirety:
I am autism.
I’m visible in your children, but if I can help it, I am invisible to you until it’s too late.
I know where you live.
And guess what? I live there too.
I hover around all of you.
I know no colour barrier, no religion, no morality, no currency.
I speak your language fluently.
And with every voice I take away, I acquire yet another language.
I work very quickly.
I work faster than pediatric aids, cancer, and diabetes combined
And if you’re happily married, I will make sure that your marriage fails.
Your money will fall into my hands, and I will bankrupt you for my own self-gain.
I don’t sleep, so I make sure you don’t either.
I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain.
You have no cure for me.
Your scientists don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don’t exist—of course, until it’s their child.
I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness.
I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die?
And the truth is, I am still winning, and you are scared. And you should be.
I am autism. You ignored me. That was a mistake.
And to autism I say:
I am a father, a mother, a grandparent, a brother, a sister.
We will spend every waking hour trying to weaken you.
We don’t need sleep because we will not rest until you do.
Family can be much stronger than autism ever anticipated, and we will not be intimidated by you, nor will the love and strength of my community.
I am a parent riding toward you, and you can push me off this horse time and time again, but I will get up, climb back on, and ride on with the message.
Autism, you forget who we are. You forget who you are dealing with. You forget the spirit of mothers, and daughters, and fathers and sons.
We are Qatar. We are the United Kingdom. We are the United States. We are China. We are Argentina. We are Russia. We are the European Union. We are the United Nations.
We are coming together in all climates. We call on all faiths. We search with technology and voodoo and prayer and herbs and genetic studies and a growing awareness you never anticipated.
We have had challenges, but we are the best when overcoming them. We speak the only language that matters: love for our children.
Our capacity to love is greater than your capacity to overwhelm.
Autism is naive. You are alone. We are a community of warriors. We have a voice.
You think because some of our children cannot speak, we cannot hear them? That is autism’s weakness.
You think that because my child lives behind a wall, I am afraid to knock it down with my bare hands?
You have not properly been introduced to this community of parents and grandparents, of siblings and friends and schoolteachers and therapists and pediatricians and scientists.
Autism, if you are not scared, you should be.
When you came for my child, you forgot: you came for me.
Autism, are you listening?
To me as an autistic woman and mother to autistic children I see Autism Speaks as an organization that uses fear of autism to reap the rewards of funding from vulnerable families, scared out of their wits and believing they MUST make their child/adult ‘fit in’ to neurotypical society.
If they do not then their child it seems, is doomed.
ABA ethos seems recipe of the day and the walks that are, I must say very cleverly marketed bring in money from people firmly believing they are helping the autistic community.
The Light It Up Blue campaign has taken hold this month terrorizing autistic people across the globe, promotion of ‘awareness’ but never, it seems acceptance.
How can we believe they mean to accept us when we are labelled lepers by former spokeswoman Suzanne Wright?
On their website it clearly states:
Autism Speaks has grown into the world’s leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism.”
Prevention.
Eugenics then, the same that’s been done to the Down Syndrome community for years i.e. in utero testing so you may abort your child if they have a disability you do not feel you want in your life.
Treatments and a cure.
We are not ill or injured we need no cure or rescue mission nor are we MSSNG as the Autism Speaks campaign suggested. Not an identity, not a person, not worthy of an ‘I’.
Curiosity spurred me to seek out Stephen and ask him questions that pulled no punches, and I was not disappointed in his answers which are as follows copied and pasted unaltered from the emails we exchanged.
1. As an autistic how did you come to work for an organization that is mostly reviled by the autistic community?
When Autism Speaks was founded about 11 years ago there were some aspects about the focus and goals of the organization causing great controversy amongst the autistic community. However, in time, I noted that Autism Speaks had a number of tool-kits and initiatives such as the Family Services Committee suggesting a belief that autistic individuals required support in varying degrees through the lifespan. With the efforts on supporting individuals with autism spectrum to become the best autistic people they can be combined with a new Board Chair, President of the organization, board members, and others, this is a great time to join forces with Autism Speaks in making fulfilling and productive lives the rule for people on the autism spectrum rather than the exception.
2. AS once had an advert where Autism was compared to cancer what’s your opinion on this?
That advertisement caused much controversy indeed. Today I see Autism Speaks choosing other ways, including highlighting successes of autistic persons, to promote the need for supporting individuals with autism and their families.
3. What positive changes do you wish to implement in your role ?
My role on the board of directors at Autism Speaks is to provide an autistic viewpoint on how we can lead research and supports focused on improving education, meaningful employment, and other areas of life for people on the autism spectrum.
4. This is a personal question, are you paid the same amount as your neurotypical work mates?
I am paid the same amount for my work as a professor at Adelphi University as everyone else. The same holds true for other areas of employment. Equal pay for equal work. No one on the board of Autism Speaks gets paid for their service – it’s purely volunteer. In fact I don’t know of any autism organization that pays its board members for their board-related service.
5. You may know of the work in the UK and Ireland to stop the use of CD/MMS being used as a so called cure for Autism, will Autism Speaks be doing any campaigns to inform the public that Autism is not an injury to be healed at all?
I have heard of this work. To this point I have never seen anyone accurately diagnosed autistic to be considered not on the autism spectrum at a later point. As said by Kassiane Sibley in the documentary Loving Lampposts “Once autistic; always autistic”. Sometimes the good work being done in the area of biomedical intervention and support for autistic people gets marred by charlatans promising a cure by using a certain cream, supplement, medicine, or other substance. That said, the idea of whether autism itself should be cured is rife with ethical, moral, and other issues.
6. Have you been made to feel appreciated as an autistic individual in your organization?
I have been made to feel appreciated as an autistic individual in Autism Speaks and other organizations I am involved with. Staff and other board members are interested in and take seriously what I have to say. The same holds true at Adelphi University where I am a professor of Special Education as well as when I was on the board of directors for the Autism Society and the Asperger/Autism Network (AANE). The Asperger Syndrome Support Network of the Russian Federation – whom I met with just yesterday – and a number of other organizations value what I have to offer. Sometimes there are misunderstandings due to a lack of awareness of what it means to be autistic. However, an important part of my duties, along with others having autism, is to educate those who are not autistic.
7. What, in your opinion can be done to change the perception of Autism Speaks to those who see them as a hate org?
Perception follows reality. Shortly before I was asked to join the board of Autism Speaks I asked the chair of the board why Autism Speak was “keeping it a secret” that a number of people on the autism spectrum are working within the organization in responsible positions – and being compensated fairly for the work they did as well as other autistic involved in various committees. I think it just never occurred to Autism Speaks to promote this aspect. With the addition of two autistic individuals to the board of directors I look forward to working hand in hand with Autism Speaks in supporting people with autism.
8. The use of first person language is offensive I wondered will that be changing?
The evolution of language is very interesting. Some years ago a bunch of us autistics met at an Autism Society conference to discuss the topic of condition or identity first language in contrast to person first language. There were lucid and valid arguments for both sides. Our vote came down to about 80% in favor of condition first language. Additional discussion led the resolution that we should be free to choose the language we prefer… yet at the same time… not get upset should someone favor the other.
9. The Autism One seminar is coming up, is there anything that Autism Speaks can do to protest it?
I’ve never seen Autism Speaks engage in protests. However, I have seen Autism Speaks advocate for things such as the need for insurance coverage for autism-related interventions and therapies through discussion with key people involved in the issue. Come to think of it, the Autism Society, AANE, and others do the same. In contrast some organizations engage in actual protests and picketing. My sense is that each organization has to choose the best way it knows how in order to effect positive change.
10. And finally, the Autism Speaks walks, are they still walking for a cure? as Autism is not a disease or illness to be healed or cured.
What people at Autism Speaks and other organizations are really after is addressing some of the more debilitating conditions that often come with autism. Some examples might be in the areas of digestion where the child has not pooped in 2-3 weeks or sensory issues so severe that individual can’t remain in the skin, learn, or interact with others. Another area of importance is the need to acquire a reliable means of communication. My sense is that everyone, be it from ASAN to Autism Speaks to NAS to the Asperger Syndrome Network to GRASP and others that we want to reduce suffering when it occurs and promote fulfilling and productive lives for those of us on the spectrum as the rule rather than the exception.
Lastly after reading Stephens answers I had to query the bio-med reference made so I asked:
I would also say that the bio med community in my opinion cause harm in that they still believe they can ‘recover’ a child from autism, as if it’s an injury.
They go from the GF/CF diet to believing in heavy metal poisoning due to the MMR then follows chelation, it’s a vicious circle.
What’s your opinion?
Stephens answer was as follows:
The ones believing in cure are causing harm. The smarter ones in the bio-med community are about good health. As long as biomedical intervention is used for medical reasons – being autistic is not one of them – then that’s fine. Just like all approaches. Some work for certain people and others don’t. It’s a matter of providing for individual needs.
I enjoyed this interview with Stephen Shore and would like to thank him for answering questions which many would have shirked from.
We can only hope that Autism Speaks drops the four F’s ( Fear Factor Fad Funding) and begins to look to whom every organization saying they work for families affected by autism should.
Autistic’s.
Horrific Autism Speaks “I am Autism” ad transcript
Autism Speaks: Torturing autistics for profit
Scatolia or Smearing (the act of playing in ones own poo). It is a common sensory issue that many Autists share. I am going to be addressing a few things in this post.
