Autism through the lifespan #9- Life After Autism

    Researchers say the best autism research is conducted after someone dies. That requires donating the brain. In our final segment of our series Autism through the Lifespan, Erika Beras reports on The Autism Tissue Program.

    Researchers say the best autism research is conducted after someone dies. That requires donating the brain. In our final segment of our series Autism through the Lifespan, Erika Beras reports on The Autism Tissue Program.

    Part nine of a nine-part series covering autism’s impact through the lifespan. Erika Beras, behavioral health reporter at WDUQ in Pittsburgh, reports.

     

    Laura Walsh’s son Jason has now been dead longer than he was alive.

    In 2003, he passed away. He was 5 years old. When he died, his family donated his brain to the autism tissue program.

    Laura: That was nice to know. Here my child was just buried and now I know that at least his memory will live on in this program.

    The Autism Tissue Program is a brain bank that makes study samples available to researchers. It allows them to study the tissue at a cellular and molecular level. The only way to get the brain tissue is when someone with autism dies.

     

    More on autism:

    Visit our Autism page.

    Laura Walsh said she had a typical pregnancy and birth. Jason hit his developmental milestones. And then, seemingly out of nowhere he regressed. He lost language and interest in those around him.

     

    She consulted psychology textbooks and the internet and learned about autism, a developmental disorder that affects social and communication skills.

    Laura: And soon as I saw something was funny I made my pediatrician, who didn’t believe Jason was autistic, I called him and I said, ‘I’m telling you there’s something is wrong with this child,’ I said, ‘I think he’s autistic.’ He said, ‘Mrs. Walsh, you are overreacting.’ I said, ‘believe me no one wants to say there’s something wrong with their child but he’s either retarded, slow or he’s autistic because there is definitely something wrong with him.

    He was diagnosed with pervasive developmental disorder, one of the Autism Spectrum Disorders. Despite hours of early intervention services Jason didn’t seem to make much progress. He was an energetic and affectionate child though. Happy. Then he got sick.

    Laura: He suffered from adrenal insufficiency and ended up on life support and after two and a half months we were told that there was very little hope Jason was ever going to regain consciousness or be able to function on his own so at that point we decided to, I don’t want to say, end his life but end his suffering let’s say. And we let him go and it was the hardest day of my life.

    In her grief, she remembered hearing about the autism tissue program.

    Laura: I really thought if there was one child I could save by doing this it would have been worth everything in the world.

    The program is funded by the advocacy group Autism Speaks and The National Institutes of Health. Since the program’s inception in 1998, over a hundred brains have been donated. They are stored at Harvard University’s brain bank.

    Laura: It is an odd concept to think that they’re going to take the brain out of your child I mean there is no doubt about it. But lets face it, you give eyes, you give livers, you give hearts, what’s the difference.

    Daniel Lightfoot is the Director of The Autism Tissue Program.

    Daniel: The organ is very fragile compared to others and it doesn’t tolerate handling very well and it has to be prepared properly and within about 24-36 hours. If its not prepared properly within that time of removal, 24-36 hours after removal, then the tissue degrades and is no longer useful.

    Unlike organ donation, a person can’t designate on a driver’s license that they want to donate their brain tissue. So that means within a day of the time someone dies, their next of kin has to notify the program that a donation will be made.

    Daniel: The Medical Examiner or the coroner will extract the brain and in about the time it takes for the preparation and extraction there is typically already a courier at the door.

    Brain tissue is procured from people in The United States and The United Kingdom. It is available to researchers around the world. Once banked, it’s good forever.

    Daniel: Scientists who study liver or lung tissue or any other human tissue post mortem have a large resource to access but for neurological disorders brain tissue donation is rare and it has to occur post-mortem and that has been a very strong impedence to autism research.

    As the programs clinical director, Carolyn Komich Hare, visits the families of those who have donated the tissue.

    Carolyn: What we’re really looking to do is provide our researchers with as comprehensive a bio-behavioral profile as possible so when they are looking at the tissue they have that background information about the person.

    She lives in Pittsburgh but travels around the country doing so. In addition to obtaining the donor’s medical history they also use another test – the same diagnostic test used to determine if a person has autism.

    Carolyn: We happen to have, well, found a new use for it.

    In Pittsburgh they’ve had several donations. They had Laura Walsh’s son Jason. The family of Abubaker Tariq Nadama, the five year old who died after receiving the controversial chelation therapy donated his brain to the program. They also get donations from family members of those on the spectrum such as that of a 75-year-old woman who had an autistic grandson.

    Although autism doesn’t shorten the lifespan, Carolyn Komich Hare says many of the deaths they see are accidents like children wandering into swimming pools and drowning.

    She has interviewed elderly mothers, who were taking care of their senior-aged autistic children.

    Carolyn: We’ve had several families who really were, I’m assuming probably, families members of the first who were really accurately diagnosed with autism. We’ve worked with one mother in particular who unknowingly participated in refrigerator mother research experiments. And so it’s incredible to me that she has that historical perspective on autism. She was looking for help for her son meanwhile they are studing her and years later she sees how things have progressed and advanced and its incredible.

    Nancy Minshew runs the center for Autism Research in Pittsburgh.

    Nancy: It is the gold standard…there are things that we can analyze in tissue that we can never look at from MRI. You only get a certain resolution and then you can’t see any better than that. But with slides, you can go all the way down and you can do chemical assays, look at levels of chemicals, essentially do a molecular pathophysiology. So it’s just critical.

    Director Daniel Lightfoot.

    Daniel: A brain scan can tell you growth or large changed in structures within the brain. But it doesn’t tell you anything about the tissue, about the cells in the tissue, about proteins, RNA, DNA, whats happening to the cellular state in the cells.

    The brain changes through life. Laura Walsh says she understands that.

    Laura: If I was doing research that you’re actually going to get a brain of a child that young. Because you can get someone whose old but how do you compare them to what a child’s brain is like when they’re five and a half years old versus 50 when they die.

    Dozens of studies based on information that stemmed from tissue have been published.

    Laura: I know I did the right thing and doing that I think that that’s probably what may be one reason Jason was here on this earth. You never know.

    While Jason was alive, Laura Walsh spent most of her time keeping up with autism research and therapies. She doesn’t anymore. But she does think about her son every day and the life he’d be living if he were still alive.

    Laura: It’s almost like losing your child twice, you have this perfectly healthy child and then one day you find out he has this illness which God knows you don’t know if they’re going to progress, not progress, how much, how little, but you know that the outcome right now is very bleak because they don’t know what causes it let alone being able to cure it. And I know what people go through – you deal with and you realize that your son is not going to have the life you thought he might have. My son eventually we deal with that and we’re very happy, he’s part of our life, I mean he’s autistic, but he was funny, he had his own little quirks, and he fit right in to our family. We kind of rallied around him, everybody, even extended family were just wonderful with my child. He was a wonderful loving child, I’m very fortunate with that he did like affection. And when Jason died…it was like we had to lose our child twice.

    Erika Beras reports on behavioral health issues for WDUQ in Pittsburg, PA.

    Want a digest of WHYY’s programs, events & stories? Sign up for our weekly newsletter.

    It will take 126,000 members this year for great news and programs to thrive. Help us get to 100% of the goal.