[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]
TESTIMONY OF RENE RUSSO
Mr. Chairman and Committee Members,
I am terrified, excited to be here and feel so blessed. There are so many emotions coursing through my body it will be a miracle if I can get through it. So, please, if I stop to cry, that’s who I am. I can’t help it. I do really care about kids.
Usually I’m on the other side of the panel. The one being asked, and sometimes guilted into, my time and resources. So, I know how difficult it is for you to make the decision between schools and foreign aid and roads and who gets what and who doesn’t. I have said to a few of you that I am thankful that it’s your job, because I couldn’t do it. I really couldn’t. It’s very difficult for me to focus on a couple of different charities because they are all worthy. They all need money. I adopted a little boy with CF that I saw die before my eyes. Oh boy, here we go!
There were a few reasons that I really chose autism. I met Jon, and Portia Iversen, who started Cure Autism Now (CAN) at a lunch several years ago. It was at that lunch I learned that their son, Dov, had just been diagnosed with autism and that they had just started CAN. I knew very little about autism. What was amazing to me were the statistics. I was very curious about them and I just want to run down a couple, to make it very clear for you and very simple for me. I learned that 1 in every 500 children have this disease and are diagnosed every year; that 400,000 people in the United States are affected with this disease; and it’s more common than multiple sclerosis, Down’s syndrome, or cystic fibrosis.
I remember sitting there thinking, “I wonder why I haven’t gotten a letter in the mail to head up a fundraiser if it’s so prevalent.” I hadn’t heard of it, yet there were so many kids that had it. We’re not sure if it’s a real epidemic or better reporting, but we do know that in California, where I’m from, the Department of Developmental Services reports a 263% increase in the last 10 years. We found out this week that in Florida there has been a 500% increase. That’s terrifying to me. It’s terrifying for the kids that are here and the ones that aren’t.
I also learned at that luncheon that as of three years ago, the funding was $5 million. That’s less than $12 per person even though autism is estimated to cost the country some $13 billion a year. I remember sitting there thinking, “Wait a minute – if this disease is more common than the three big childhood diseases, why is it so underfunded?”
Portia and Jon explained a little bit of the history of autism. It has been ignored for so long because in the 1950s the medical community thought that it was bad parenting, trauma, or neglectful mothers. So, obviously the parents were stigmatized and they never moved forward to organize and the scientists did no research. A generation of children were lost. Gradually they realized autism was a medical problem but they thought it was incurable. Scientific knowledge grew all around the disease, but it was never applied to autism.
When Jon and Portia’s son was diagnosed with autism, it took six months and five different specialists to be told, “There is nothing to be done but to hold on to each other, cry, and then move on with your lives.” God! This is by far the hardest thing I’ve ever done. OK?
A mother handed me a note that she wanted me to read to you. She said, “When our son was diagnosed three years ago we were told he had a chronic, incurable condition. There was no protocol for the treatment. No specialists at all. The doctors said all we can do is start educating ourselves – start searching. And even today, a parent is being told the awful news and there is no where for them to go.” So they were told to start educating themselves, but there’s not a whole lot of information out there.
Jon and Portia went to the NIH at that point. That is when they found out how little money was being spent on autism and how little information there was on the disease. So what they decided to do was to go to the neuroscientists themselves. God bless parents. And they all said the same thing – that there was an unbelievable potential for progress, even with the limited information. With the best minds and the latest technology early detection, prevention, better treatment and even a cure was possible. They were hopeful. They organized thousands of families. They went back to NIH and unfortunately what they found was that because of turf battles and scientific competition that nobody wanted to share what they had. They were back to square one.
So, the families organized and went back out in the communities and started their own brain banks and gene banks so that more people could get into the field. That pretty much brings us up to the present. How am I doing? Pretty good? I think I’ve got a minute left here.
You know, we’re not asking you to tell the NIH how to do science or what to fund and what not to fund. But we are asking you to create a policy that would take advantage of what is known now. To have the scientists work together and help these kids. That is the idea behind the Centers for Excellence – the five Centers for Excellence. They would be a place where families can go to get a diagnosis, some hope, and clinical care. A place where the very best scientists could get together and access those families. That’s so important to finding a cure.
The purpose behind Congressman Greenwood’s bill is to create a structure that encourages scientists to work collaboratively, sharing information and treatments because early diagnosis for these kids is very important for their future. It’s the difference between a word and a functioning human being. This is the same model that was used to make incredible breakthroughs in childhood leukemia and Alzheimer’s. In childhood leukemia, for instance, it went from a 20% to an 80% survival rate. We’re basically stealing their model.
Recently the autism community mobilized and they do feel the potential for a breakthrough, but we need the money. We need your help because half of these kids will never learn to talk or go to school, they will never learn to live independently, many of them will end up in institutions and group homes. I cannot tell you how many parents do not have the time, energy or resources to help these kids. You think that the parents are taking care, but they don’t know where to go.
I know that every parent’s pain is deep and that every diseases has it’s own suffering. But in autism, the neglect has been so great that it would be tragic to do nothing. Two years ago we did a fundraiser that raised $250,000. That was a big deal for us. At that time and at the present, that is the most money we’ve ever raised at one event. That’s a disease that affects over 400,000 people.
I don’t need to sit here and tell you how painful it is for parents, because we are all parents and we can all imagine that. But, I remember one parent saying to me that it was like someone crept into her son’s second birthday, into her house, and took her baby’s mind and personality, and left his bewildered body behind. I think if one in 500 kids were actually being abducted in the United States, it would be a national emergency. I think this should be.
Thank you for your time. God bless you all and thank you so much for having me.
Cure Autism Now Foundation
5225 Wilshire Blvd. #226
Los Angeles, CA
More With Cure Autism Now
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.