Cure Autism Now: A Message from The Founders | Winter 2001 #AutisticHistory

[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]


Thanks to You! Cure Autism Now Advances Autism Research 

It has been five years since we started Cure Autism Now. Things were very dark then, and they really are a bit brighter now. More talented scientists are dedicating their lives to solving autism. There is more money available to pay for their essential work. More pediatricians are starting to recognize autistic children at an earlier age. Brain banks and gene banks are up and running, and with the passage of the Children’s Health Act of 2000, the government is starting to do more of its share. Even the most skeptical scientists are starting to believe that it is more likely that autism will yield to science than that it will not. We will find treatments, prevention and even a cure. 

This progress is amazing. Cure Autism Now has had a hand in much of it and we have you to thank for making it possible. Your belief that this was an attainable goal and not a fool’s errand has made the difference. Our first year we raised $400,000. Last year we raised almost $4 million. Over four years we have put almost $6 million into research and the establishment of the Autism Genetic Resource Exchange (AGRE). CAN has funded 56 research projects (pilot studies, fellowship awards and bridge grants) and created AGRE. We are so proud of what the families of Cure Autism Now have been able to do in a relatively short time. 

And yet our son Dov is now eight. We watched with a mixture of joy and sadness as his six-year-old sister surpassed him. And again as his three-year-old little brother has overtaken him and become his helper. I cannot even imagine what life is like for Dov – what he understands and what he doesn’t. He is sweet and cheerful, but sometimes it seems as if Dov is in prison. And if you want to spend time with him, you have to get in that prison too. You have to get very small and very slow and maybe just maybe – for an instant you get to connect with him. Dov is so forgiving as we struggle to understand him. By example, he has taught us so much about patience and tenacity and the enduring power of love. But I think it’s hard for Dov in his prison, and it’s hard for us to reach him there. We just want to free him – sooner rather than later. 

When we started Cure Autism Now we didn’t know what we were doing. We only knew that we had to do something. It has been a remarkable journey. More and more families have joined in. We were the beneficiaries of remarkable acts of kindness and generosity. We remember very well the first time Cure Autism Now got a check for $5,000. We wept in gratitude. We can’t believe the birthdays, weddings, bat mitzvahs, car washes, and even memorials that families have transformed into opportunities for CAN. Some recent examples: Harvey Goodman of Maryland ran in the Marine Corps Marathon raising over $60,000 for CAN. Debbie Morgan in Michigan just lost 40 pounds for CAN – resulting in $5,000 from her friends and family. From scientists to senators, people heard about autism, the terrible toll and the magnificent potential for progress and they joined the struggle. Momentum is on our side, pushing us forward. Often we have felt that other, greater forces were writing this script and all we could do was hit our marks as best as we can. 

Particularly, we are grateful for the people CAN has brought into our lives: the families who have been forced by circumstance to become medical experts, therapists, advocates, and activists. When we pass each other at conferences, at the speech therapists or in the halls of Washington, D.C. with only a word or a glance we know instantly that we share a thousand sleepless nights, battered hearts, and boundless hope for the future. When we meet, a minute is all it takes to feel as if we have shared a lifetime. 

We live in an age of miracle and wonders. This year we have learned that all the neurology textbooks will have to be rewritten. Contrary to what we thought, the brain does not stop growing. All through the life span new neurons are made and they continue to migrate to the appropriate locations. Scientists are on the verge of being able to manufacture these cells in the lab. The potential this holds for paralysis, Parkinson’s, Alzheimer’s and now even autism is amazing. It means that whether you are three or 30 science holds great hope. This once again points to our strongest belief at CAN. There is no such thing as false hope – only hope. 

Perhaps we have accomplished some things in the last four years – but not enough. Even as we make advances, there are defeats. Autism seems to be on the rise and no one knows why. Every twenty minutes another couple sits at the kitchen table, having just received the diagnosis and wonders if life will ever be the same. With each new day, I am still dreaming of the day when we will walk into Dov’s room and hear him say: “I love you.”? And then, because I know my knees will give out, I will have to cling to him for support and he will say, “and I know you’ve loved me all these years.”? 

Jonathan Shestack       Portia Iversen 
Founders, Cure Autism Now

The Autism Community Is Not The Autistic Community

* The “autism community” is not the Autistic Community. The autism community was created by non-Autistic led organizations and includes mostly parents, professionals and their friends. Most of what the world knows about autism is sourced from the non-Autistic “autism community.”

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Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid. 

ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.

The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t workIn study after repeated study: ABA (conversion therapy) doesn’t work. 

What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.

The ‘cure’ for Autistics not born yet is the prevention of birth. 

The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome. 

This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.

Fact: You can’t cure Autistics from being Autistic.

Fact: You can’t recover an Autistic from being Autistic.

Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.

[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]

Fact: Vaccines Do Not Cause Autism.

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