Ms. Pratt. Mr. Chairman, thank you for the opportunity to present testimony today concerning autism treatment options and research. I am here today kind of in multiple roles, first as director of the Indiana Resource Center for Autism, located at Indiana University's Indiana Institute on Disability and Community, and as a board member of the Autism Society of America. I would like to commend you and thank you for holding this hearing. I think that for too many years, the voices of some of the children you see on the posters have not been heard; this gives them a wonderful opportunity to be heard. While I have your attention, I would encourage you to do two things. One is to continue funding the Centers for Disease Prevention and Control in terms of looking at the incidence and prevalence of autism. As I was working with your office on providing testimony for today, it is clear that we do not have a true idea of the incidence and prevalence of autism across the United States. The other thing that I would encourage you to do is to work with your colleagues on supporting H.R. 3301, which is the omnibus children's health bill, which would provide clear direction to the CDC and the National Institutes of Health. I am probably the oddity on this panel. I am not a physician. I spend a lot of time in classrooms and in homes and around the State of Indiana, visiting children and their families and their educators and other professionals who support them. And while I know that there is broad disagreement about whether there really is an increasing incidence of autism, I know that we are incredibly busy. I know that I hear from professionals out in the field and from family members that they truly are seeing many more children than they ever saw in the past. So I have to listen to their words. In terms of the potential causes of autism, I hope you realize that autism is referred to as a ``spectrum disorder,'' and along with that, that probably reflects the idea that there is a spectrum of reasons why children do develop the characteristics associated with autism and that each of the professionals and family members who are here today are painting just a piece of that picture for you. I would really encourage you to propose legislation and funding that will look at the possible multiple causes of autism, and along with the vaccination issue, the issues around environmental situations and other issues which parents keep reporting as being possibly related to the occurrence of autism. I have never heard from any of the families an issue about whether they want to vaccinate their children or not. I think the issue is in terms of safe vaccinations. As a professional in the State of Indiana, I know there is broad disagreement about whether there is a link between autism and vaccinations. As a professional who works with families every day, here is my position. If I could have helped those four families who are here today to avoid having a child diagnosed with autism by giving them accurate information, I would have done so in a heartbeat regardless of what the research tells us. I think that is the issue that all of us face, that when the research may not be proving it, when we hear the stories, we want to avoid further stories being told. In addition to looking at the research behind causes, I would also encourage us not to forget about the 500,000 other individuals and their families who currently have a diagnosis of autism and the needs that they have. The families and several of the panelists today have talked about some of those needs. The first one is in terms of early intervention. I really applaud the National Academy of Sciences and the National Institutes of Health for starting to look at the essential components of early intervention programs that are most effective. I think we have focused a lot of effort on looking at specific programs, and while there is some broad disagreement about which of those specific programs is most effective, I think there is some general agreement arising about the components of those programs, and I hope that those things will really be looked at. Based on the testimony that I have heard during the National Academy of Sciences meetings, it is very clear that additional research is needed to try to really build a case for the various components of effective programming. The next issue that I would like to cover is full funding for IDEA and the professional development efforts. In a recent report, it was noted that 44 out of 50 States are not in compliance with the ``free and appropriate education'' mandate of the Individuals with Disabilities Education Act. While those reasons may differ from State to State, I believe part of the reason is due to funding. In addition to that, there is a tremendous need for trained professionals in the field. Sometimes, professionals are placed in the role of supporting challenging individuals, and they do not receive any training or guidance or assistance in being able to do so. So I would really encourage that we look at providing funding support to States for continued professional development. In addition to that, you have heard from many of the parents about the need for accurate information to pediatricians and other physicians who play a critical role. They are oftentimes the first people that parents talk to when they think their children may have a diagnosis of autism. The information that they can provide to families can help to set them on either the right track or the wrong track. So I really encourage education for them. Another issue that I hear a lot from families is in terms of insurance coverage and funding sources. In my written testimony, I provide the example of a family in Indiana that was denied coverage for their child's appendectomy because he had a diagnosis of autism. Autism is considered a pre-existing condition by some insurance companies, so these children are excluded from insurance coverage. I hope you realize the tremendous accommodations that the families that you saw today have had to make to be here today, and in their lives on a daily basis. The tremendous financial devastation that many of them face, the stresses on their marriages--and I am so glad to see that many of them are here, fathers and mothers together--the stress on their entire lives is just unbelievable. You know first-hand as a grandparent how tremendous the stress can be. I also need to tell you that your support is greatly appreciated by the autism community. Your support is even more greatly appreciated by your daughter today. I also hope you realize that when insurance companies turn families away, they look to other funding sources, whether State or local agencies, and in many cases, that money, that funding, is nonexistent or is inadequate for the family support needs. Families are told that they have a window of opportunity for their children, and at that point, they have run to get those services and supports that they need; and when they are denied the funding they need to be able to provide those services, they will do anything and risk tremendous devastation to be able to reach those goals. A population that I hope we will not forget is the adults who have autism. We have a high percentage of individuals who remain unemployed, who are very competent, talented individuals with autism; others who are underemployed or in jobs which really do not match their talents and skills and interests. In addition, many of them choose living options that are only a far-off dream--to live in a community, to have access to the same rights and privileges as every other citizen of the United States. While progress has been made in this area, much is still left to do. While I commend the committee for taking this opportunity to listen to families today, I also urge you to support authorizing legislation and appropriation provisions that will further the state of autism research. While much progress has been made, remember that there is still much to do. Thank you. Mr. Burton. Thank you very much, Dr. Pratt.
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.