June 15, 2007

Statement on Autism Speaks from Katie Wright

A Statement from NAA Board Member Katie Wright

Several weeks ago I did an interview with David Kirby, which was subsequently made available to F.A.I.R. Autism Media. During this interview, I made a few comments which upset some members of NAAR as well as some parents of older autistic children.

It was never my intent to upset parents. I am terribly sorry if statements reflecting my frustration with the pace and scope of autism research offended the pioneering and hard-working NAAR parents and volunteers. Their contribution to this cause has been both tremendous and courageous. When I stated that autism has reached catastrophic numbers and it is time to let go of resistance to environmental research, I was speaking of scientists at the CDC, NIH and elsewhere, who have discounted and obfuscated the autism/ environment connection for far too long.

Despite receiving high quality early intervention, my son lost every word, every skill he ever had within a year of his diagnosis. Christian lived in constant pain for the following two years with a destroyed immune system and endured bouts of severe colitis, pnuemonia, staph, strep and cellulitis, while hardly eating, barely sleeping, only screaming. Tens of thousands of parents are living this nightmare along with me. We are understandably angry at the glacial pace and narrow focus of autism research.

I, like most other parents of autistic children, want to see far greater resources directed towards helping the children and families living with autism TODAY. We immediately need research and assistance on providing therapeutic services and bio-medical interventions. While research into the role of genetics in the development of autism should be continued, this should not occur at the expense of crucial research into environmental factors that are so obviously triggering this epidemic. The first priority must be investigating therapies and treatment for improving the outcomes for individuals living with autism today.

Finally, I was saddened by the statement issued by Autism Speaks, featured so prominently on its website, which so vehemently disassociated itself from me. Repeatedly, throughout the interview, I said my opinions were my own and did not represent those of Autism Speaks. I do not understand why such a personal denouncement of me was necessary. To be clear, I have nothing but admiration and appreciation for what my parents, Bob and Suzanne Wright, have achieved and are trying to do to in promoting the cause of environmental research. It is my greatest hope that Autism Speaks as well as the scientific and medical community will fulfill their promises and commit themselves to the environmental, biomedical and therapeutic research so urgently needed. It is long overdue.


Anonymous said...

Any apology that starts "I am terribly sorry if" isn't really an apology. Either you're sorry about something specific, or you're not. "Sorry if" is not an apology.

For example, you might be sorry to have added to the rancorous tone of the debate. Or you might be sorry not to have considered how your words might hurt others. If you really want to apologize, be specific. What are you sorry for?

Anonymous said...

... take it easy.

I think that people are a bit hard on Katie Wright. She is a mom, fighting for her son. She is standing up for her beliefs and fighting for them. If people disagree with her, she's okay with that. I have heard/read her say several times - if I'm wrong, prove me wrong.

I think that the blogging community has been a little harsh on Ms. Wright, to be honest. Perhaps these bloggers should step away from their computers and start taking action if their beliefs are so strong.

Bashing Katie Wright, continuously, online is really not going to get anyone very far.

If I were Ms. Wright, it would only fuel my mission more.

I may not believe in all that she says, but I whole heartedly applaud her efforts and her voice.

Her words have inspired me to do more research into autism and I'm thankful that she continues to raise her voice.

jon Shestack said...

I write first as the father of Dov, a 15 year old boy who is very challenged by autism., Secondly as the founder of Cure Autism Now and finally as a board member of Autism Speaks..

I was moved when I read Katie Wrights letter on the NAS website. I thought it was brave, and thoughtful and courteous. And because there has been so much strife in our community and I have felt so heartsick about it, her letter moved me to share some thoughts---

Katie Wright is a devoted mom with a very sick child, and she is looking high and low for something that will help him.

Bob and Suzanne Wright are loving parents and grandparents dealing with a double shot of grief, one for their daughter and one for their grandson. They, too, are looking as hard as they are able for something to help him.

And so am I. The search for answers is what prompted me to start Cure Autism Now.
And though we haven’t found the answers yet, the one thing I am pretty sure about is that we won’t find them any faster by insisting that everyone search in exactly the same place.

Whether we try to heal autism with environmental research, genetic research,
prayer books, Phds , double blind studies, or business plans written by consulting firms, aren’t we all honest, brave, sad and good? Don’t we all love the autistic people in our lives for who they are, and don’t we all also want more for them?

Is there a family that hasn’t had a fight? Aren’t we all just so frantic sometimes as we desperately search for ways to help our children? Don’t even the best of us sometimes get angry and cast blame? Here’s is just the briefest sampling of my family dialogue , tell me if it doesn’t sound familiar:” If only we’d started ABA earlier,… We should have done floortime….We can’t vaccinate the others…Are you kidding? They won’t let them into school… I want to go gluten free….I’m just grateful he’s eating anything even if it is 100 grilled cheese sandwiches…. No wonder he’s autistic, your family is crazy…. Mine? No you must be mistaken, you are a nut, and your nutty family is definitely nuttier… have you talked to your father lately…No?...my point exactly…”

And yet, what do we agree about in our family? We agree that Dov deserves our love, our respect, our commitment, our hope and our hard work, We believe that he is counting on us to help him. Dov who can only communicate by painstakingly slow typing, knows he is autistic and he has told us many times that he doesn’t like it. And so our family will put aside our squabbles as best we can and keep on working.

To the activists, bloggers and the journalists I want to beg for just a little mercy and restraint. Let us make our own best arguments on the merits rather than use this one family as our proxies.

There are so many things we need to fight for together,.We need more research, more trained therapists, we need Medicaid waivers, IDEA funding, the kids in the neighborhood to be more kind and less cruel. We don’t really need hate mail and editorials that make us out to be idiots. The last thing we need to is fight against each other. There are real enemies out there. There is a disorder that is crippling a generation and there is a government that takes very little interest. If I have learned anything in ten years of lobbying it is that the feds love it when we are factionalized and fighting amongst ourselves.It buys them one more year when they don’t have to do anything.

To Katie, I’d like to say thank you. Your letter was strong and kind. You have been brave. I’m glad you are in the fight, I hope you stay in it., We need many voices.

I agree with you urgency is still so very important. I have been working to find treatment and a cure for autism for 14 years and I am NOT doing it for the next generation. I am doing it for this generation.

To the board and supporters of Autism Speaks, if some of our critics are right, and urgency isn’t a big enough part of our vision, then we need to change. The same with treatment. Even while the larger answers to larger questions may take more time, people with autism can have a better quality of life today and we must help that happen.

If we are not seeking out new ideas and fresh talent, then we must change. If innovation is somehow perceived as the enemy of excellence, then we must change. If we don’t deeply understand that in order to lead we must serve, than we must change.

I think we haven’t gotten it totally right yet at Autism Speaks. But we are new and we trying really hard .We are trying to integrate a couple of strong, proud organizations, we are trying to move fast, and occasionally, we stumble. I hope we recognize that we can learn and improve.

We will have faith, but we will earn our miracles We will use our hearts and our minds to grab them from the dreamy future and bring them here today. We will find the best scientists and encourage them to use all their wisdom ,art and discernment to treat and to cure autism. And when we have done that, we will do it again the next day. We will be optimistic, but not satisfied, we will question authority, despise complacency and above all love our children---for that is the obligation without end whose reward is also without end.

In peace,
Jon Shestack

Ginger Taylor said...

Mr. Shestack ,

Thank you so much for posting this today. It brought me to tears.

I want to make a good answer to this, but I have to tend to my son and I will be back shortly.

Thank you so much for your honestly, vulnerability and teachability. It is only this kind of humility that will heal our families and our community.

Thank You, Thank You,
Ginger Taylor

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