Response to NIMH Director Dr. Joshua Gordon’s: “Autism Awareness Message”
by Katie Wright
I have been enjoying “Cortical Chauvinism” for some time and was honored when Dr. Casanova invited me to submit a guest post about severe autism.
Like Dr. Casanova’s autistic grandson, my son Christian suffers from severe autism. Additionally, both boys suffer from intractable epilepsy. No prescribed medications effectively stopped their seizures, essentially destroying their quality of life. I am eternally grateful to advocates like Manny’s daughter who fought so long and hard for those with epilepsy to have access to medical marijuana. It was the only treatment to stop my son’s seizures and give him back a life. Over the past few years I have learned how common intractable epilepsy is among ASD people.
But you would never know this from NIH autism research priorities. No way! In looking at NIH autism research one would assume that eye gazing studies (which provide no prevention nor treatment) are the most urgent scientific priority in the ASD community. The NIH perpetrates the myth that all we have to do is dx autism early and Poof! Cure! There are 11,000 published studies on the signs of autism and early intervention. While the NIH continues to fund and re-fund eye gazing work, the NIH has not funded any research that has resulted in actual new treatment since ABA in the 1980s. It doesn’t matter how early you learn the signs, the lack of treatment options means few with ASD will make significant progress. This is especially true for those medically impacted with severe autism.
This group of severely affected ASD kids are not a part of the $10 million NIH Yale/McPhartland autism “phenotype” (they are ‘phenotyping’ healthy, verbal HF ASD people) study, nor a part of the multi million $ Denver EI research studies or Dr. Tom Insel’s ridiculous RDoC NIH/ ASD eye gazing project, or the NIH Autism Centers for “Excellence” tuberous sclerosis “autism” study. Just imagine if cancer research was focused only those with the Stage 1 or 2 cancer only or only on the most rare variations. Meanwhile you have Stage 3 or 4 cancer but no one cares. The NIH says sorry and good luck with Stage 1 treatment for your Stage 4 disease because there is nothing else.
The NIH, Simons and Cold Springs Harbor autism research departments seem to revel in funding the most arcane, impractical and least impactful autism research imaginable. 40% of ASD people have moderate to severe GI problems. Guess what % of the budget these organizations spend on ASD/ GI treatment research? 1%. 25% of people with autism are severely affected and engage in self-injurious behavior (SIB). Guess how many SIB treatment studies the NIH, AS, SCH and Simons fund? Zero. The NIH, especially, appears to prefer celebrating HF autism rather than deal with autism’s severely disabled.
I have frequently hear that “it’s just too hard” to study severe autism. No way. You know what IS hard?- Having severe autism. It is not as if there are no promising research opportunities to help this subgroup. Medical marijuana is being studied by Parkinson’s, MS and IBD orgs, to name a few.
The last time I drove alone with Christian was about six months ago. Christian was in the back of the car and we were 10 minutes from home when I suddenly I heard loud thumping- the dreaded sound of Christian bounced up and down in his seat. I was frantically hoping this doesn’t escalate and we could make it home safely. But no, Christian was turning bright red and started yelling/crying as he tried to tear his hair out- literally. A minute later I heard the banging. My heart was pounding out of my chest, my hands shaky and slippery with sweat as I look in the rearview mirror and see Christian hitting his head with a closed fist as he screamed. Christian’s complexion is fair so I saw the purple bruising almost right away.
I was so scared that this self-injurious behavior would trigger a full fledged Grand Mal seizure. Thanks to Charlotte’s Web, Christian rarely has seizures anymore but a powerful seizure trigger remains- an SIB incident. Last time it happened, thankfully we were at home. In the rearview mirror I saw hair coming out in Christian’s hands, but am most worried about the blows to his head. I drove through 2 red lights, made an illegal u turn, doubled parked in front of my building and yelled for help from the doorman. We half carried, half dragged Christian into the apt.
Christian’s brother, Mattias, saw us coming in the door and yelled for our live-in aide, Michael. Although only 13, Mattias asked me right away if he should get “the nose spray” a kind of tranquilizer which helps Christian calm down. I said yes and try to hold Christians’ arms behind his back until Micheal runs up the stairs. I am looking towards the stairs when Christian swings around and head butts me- hard. It hurts so much I see stars, I cannot imagine that Christian does this to his own head a half dozen times before we can stop him. Michael arrived, he knows not to speak because that only aggravates Christian more. We must be totally quiet except for a nature sound CD Mattias knows to play, which seems to have a uniquely calming effect.
After a half hour of silently feeding him some berries ( natural sugar helps) the screaming and efforts to strike himself slow down. I think it is OK for Mike to let go of Christian’s arms, but it was too soon, and he bit Mike hard on the arm. I felt terrible, wishing it was me.
It feels like a dream. How can this be real? How did an 18 month who loved to read books about cars, talked to my Mom over the phone and played tag become a 15 year old severely autistic nonverbal teenager who has engages in scary self injurious behavior? How did we get here? Like virtually all autism families we did everything we were told 1) early intervention, check, 2) educating ourselves all about ABA and generalizing at home, check, 3) finding a good OT, check, 4) finding a good speech therapist, check 5) following all our pediatrician’s recommendations, check and yet it only got worse and worse and worse….I cannot think of a disease or disorder in which professionals and researchers have over-promised and under-delivered as much as with autism. “50% of kids who get early high quality EI mainstream,” false. “Autism is totally genetic,” false. “Autism is totally behavioral,” false. “Special diets are dangerous,” false. “Early identification = cure”, false. “Genetics will lead to treatments,” false. “Autism is not a disability, just a difference,” one gigantic false.
Those living with severe autism comprise 20% of the spectrum. Many of these autistic people struggle daily self-injurious behaviors and seizures. They happen at home, in cars, on the street, on public transportation, at parties, on Christmas – anytime. Every time these families leave the house together, family members, especially siblings, live in dread of a seizure or a meltdown. The world gets very small, very fast as most families stop visiting friends, going out to dinner, traveling etc.. Self-injurious behavior often goes hand and hand with untreated GI disease. It is exceedingly difficult to find GIs willing to treat this population. Even fewer GIs are knowledgeable about diagnosing and treating the GI problems unique to ASD people. Even worse is the fact that severely affected ASD people are the subgroup to most likely be living with intractable seizures. Most traditional anti-convulsants fail to alleviate their seizures and medical marijuana is not
available in all states.
Our children are very much loved and we are grateful to have them but love doesn’t mitigate the painful struggle our children endure on a daily basis. So the next time you hear lengthy debates about how autism is a gift or how the puzzle piece is insulting think of the silent 20% of the spectrum for whom autism represents a crushing disability.