Mr. Burton. OK. We will now proceed with our witnesses. As a practice, especially since we are talking about something as important as the various problems that have been occurring with you folks with autistic children, I would like to ask everybody to rise. On our first panel, we have Mr. Kenneth Curtis, Mr. James Smythe, Ms. Shelley Reynolds, Ms. Jeana Smith, Mr. Scott Bono, and Dr. Wayne Dankner. Would all of you raise your right hands, please? [Witnesses sworn.] Mr. Burton. Please be seated. Mr. Curtis, would you like to start? What I would like to ask, because we have 19 witnesses, and this is a very big hearing today, is if you could try to confine your remarks to 5 minutes. Some of the doctors who have technical expertise that they want to express will be allowed a little latitude, but if you could stick close to 5 minutes, we would really appreciate it. Mr. Curtis, would you like to start? STATEMENTS OF KENNETH CURTIS, CATONSVILLE, MD; JAMES SMYTHE, CARMEL, IN; SHELLEY REYNOLDS, BATON ROUGE, LA; JEANA SMITH, DENHAM SPRINGS, LA; SCOTT BONO, DURHAM, NC; AND DR. WAYNE M. DANKNER, SAN DIEGO, CA Mr. Curtis. Certainly. Mr. Chairman, all of you, first of all, thank you for this opportunity to speak on behalf of my son---- Mr. Burton. Would you pull the mic a little closer? The mics do not pick up as well as we hope. Mr. Curtis. Sure. Leave it to the radio guy to mess up the microphone. Thank you again for this opportunity to speak on behalf of my son, my family, and children with autism nationwide; but mostly I am speaking on behalf of my son, because this is really his story. Autism does not announce itself in the delivery room. When our son Morgan Scott was born, he looked like a Sharpei dog--he was wrinkled from head to toe. Things were sort of storybook for us at that time. We had a girl and a boy, a mom and a dad, and life was kind of like a picnic. But the clouds were rolling in, as it were. Slowly, little drops of doubt began to fall. We wondered about the way he liked to watch Disney videos over and over, or how he would spin around and make strange noises and look at things out of the corner of his eye; the way he liked to line up his toys. Drop after drop--we wondered, and we waited to see what would happen. He did not talk, and most of the time, he did not even seem to hear us. So we worried some more, and we wondered, until all of these little drops were like a downpour--and of course, we had to take cover. Our doctor suggested a hearing test, but his ears were fine. He just would not talk. We tried speech therapy, but he still would not talk. Even with all of these odd behaviors, my son was a happy enough kid. He was loving, affectionate, he was ticklish, stubborn--just like any kid--but he would not talk. Finally, when Morgan was a little more than 2 years old, we had a word for it, and the word was more terrifying and confusing than any of the things we were dealing with at the time. Of course, the word was autism. But what did that mean? Of course, we thought of ``Rain Man,'' but we also thought of all the horrible stories you hear about kids who repeatedly bang their heads against the wall, or bite, scratch, and sit in a corner, rocking and hugging themselves. Is it possible that this could be our little boy? It did not seem real--but obviously, it was. Morgan was diagnosed as ``moderately autistic,'' a term I have always thought to be a bit like being ``moderately pregnant.'' So we began to immerse ourselves in information. We were determined to learn everything possible about autism--and when I say ``we,'' I really mean my wife Kimberly. You have never seen a woman on a mission until you have seen a mother determined to save her child. There is no match for a mother's love. She read, she researched, she investigated, while I tried to come to terms with the idea that I might never be able to shoot hoops with my son. Before long, we had a plan. We opted for the one-to-one intensive ABA therapy program developed by Dr. Lovass at UCLA. We spent thousands of dollars, wrangled with the school system, hired lawyers, lived in my grandmother's house to save on rent, and we began teaching our son in-home. For 5 years, Morgan had between 30 and 40 hours a week of one-on-one therapy. At age 4, my son had more college friends than most fraternity brothers. He learned to read a little, to spell a little, to use the toilet--and most importantly, he learned how to listen to people, and he even began to talk a little bit. I am a radio guy--I talk for a living--and the irony of having a son who does not know how to communicate with words is not lost on me. I know there are things that my son wants to say to me, and as he gets older, I can look into his eyes and see the frustration and the confusion. There is a little boy inside of him somewhere, and it is as if he is lost. This is really what it is like. It is like being in the mall with your child, and you look down and discover he is not there anymore--that sickening feeling you get in the pit of your stomach. Except that every once in a while, I catch a glimpse of the real boy--the way his eyes light up when you bring the Christmas tree home; the way he smiles when he jumps into the pool, or the way he sits perfectly still, enraptured, when he got to see the symphony. He loves music, he loves animals, he loves trains, books, swings, ice cream, and even his family, of course. But he cannot tell me his favorite color, or how his day at school was, or what hurts when he falls off the swing set. He still has not figured out how to express or reveal himself. And he does not seem to understand why this is so important to us. I want to know why my son is locked inside himself. Is there a genetic disposition? Is it environmental? Is it something in the water? Do pesticides cause it--preservatives; antibiotics; immunizations; Nutrasweet; the time he fell and hit his head? It sounds crazy, but these are the things we have all heard and thought about, and the truth is we have no idea why our son is autistic, and we have to accept that. But we love our son so much that we can never give up hope that he will 1 day carry on a conversation with us or even just say, ``Hi, Dad,'' when I come home from work. Morgan is a truly beautiful person in his own right just as he is right now. I have never met anyone, and I doubt I ever will, who lives more in the moment than my son. He is affectionate, imaginative, and even humorous sometimes. And I have learned more from him than I have from any other single person in my entire life. He is autistic, and that is just the way he is. But not everybody is as lucky as we are. Morgan is not aggressive or self-injurious like a lot of individuals with autism. He is 8 years old. I have had a lot of time to come to terms with this. Even so, the frustration of dealing with autism is nearly eclipsed by the frustration and the lack of concrete information about this disorder. Autism used to be considered rare, the kind of thing you see in movies or read about in books, but it never actually happened to anyone you knew. In January of this year, the Autism Society of America estimated that autism had increased from 15 out of every 10,000 individuals to 1 in 500. And the repercussions of this increase are so far-reaching. These children will need specialized education and appropriate care for the rest of their lives. Are we honestly ready for this? Are our schools equipped to handle this increase? This overwhelming surge in this disorder is not just going to affect individual families. This is going to impact our community and the entire world in which we live. My son is a beautifully colored thread in the fabric of my family. But even so, 1 in every 500 families should not have to live with this disorder. And what if these numbers keep increasing? So here I am today, wearing the only suit that I own, discussing my son before the legislative arm of the ruling body of the greatest Nation in the world. Believe me, testifying here today is one of the most important things I have ever done, and with all due respect to the tremendous body of work before each of you, I would like to think that it is a very important day for you as well. Thank you. Mr. Burton. Thank you very much, Mr. Curtis.
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 work. In 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.