Response to NIMH Director Dr. Joshua Gordon’s: “Autism Awareness Message”

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.

13 responses to “Response to NIMH Director Dr. Joshua Gordon’s: “Autism Awareness Message”

  1. Gracias por tan buen artículo Dr. Casanova. Creo que hasta que uno no vive realidades opuestas al misticismo azul que por todos los medios nos tratan de imponer, no tomamos conciencia de la realidad discapacitante de un T.E.A.

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  2. As a contributing editor of Age of Autism,and frequent blogger at AoA,about the alleged connection between vaccines,and autism,Ms.Wright is no stranger to the autism community.Manuel,is the reason you published Ms. Wright’s post was to provide a platform for as many different viewpoints as possible?Although Ms,Wright does not mention vaccines/mercury here,her reputation precedes her.

    I am one of those who believes the science is settled as to whether or not vaccines cause autism,but there are other researchers who I respect,who seem to believe otherwise.
    https://link.springer.com/article/10.1007/s12035-017-0692-2

    Yes,NIMH seems to concentrating their research and attention on the very high functioning,much as Autism Speaks is.You can thank ASAN for this.ASAN had been so vocal in their criticism of Autism Speaks,that AS has done everything they can to accommodate them. Likewise,members of ASAN have infiltrated the IACC at NIMH.I applied to the IACC the last time there was a vacancy,and was turned down.

    I think autism families can pretty much write off both NIMH and Autism Speaks as a means of finding answers.There are plenty of other researchers out there working to find answers to the causes of autism.But it can’t be stated enough how much parents need to be both advocate,and researcher for their own children.A family where there are two,or more,children on the spectrum screams genetic causes,as it is in our family.

    Both my sisters and I are autistic,but I am the only one who has had any extensive testing.If you have read my comments over the years,here and elsewhere on the web,you know I had diagnosis of “moderately severe” autism.What this meant was I was verbal,but otherwise very low functioning.I was too low functioning to live on my own,and like many adults with severe autism,I lived with my mother up until she died,and never worked.I used to head bang and wander too.Sometimes I would head bang until I left holes in the walls.I found out in my case both were due to treatable seizures.It is now well accepted self-abusive behavior and wandering can be caused by seizures.I was also born blind in my left eye.

    I have had more regressions,medical issues,learning disorders,etc than most autism families can imagine.By working with MAPS doctors,over a seven year period,I acquired many diagnoses.Among them Severe MTHFR Deficiency and Homocystinuria,high levels of folate receptor alpha autoantibodies,both blocking and biding,severe celiac that remained undiagnosed for over forty years,neurocardiac disease that should have been diagnosed in my teens,and finally a unique,one of a kind,chromosomal rearrangement disorder,found through whole exome sequencing.The untreated folate deficiency caused a secondary immune deficiency.Treating my folate and B12 deficiencies eventually reversed my autism and other brain issues.I still get seizures,but they are much less frequent,but more severe.I can get sick or have seizures,but not regress anymore.

    When I read the blog posts from parents whose children have severe,or medically complex autism,and have regressed after vaccines,I can’t help but wonder how many of these parents have had extensive testing done on their children,to look for underlying causes,be it inborn metabolic disorders (There are many that cause autism.Some are very rare),inherited autoimmune disease,whatever.I am well aware that less than 10% of all autism is supposed to be genetic,but you will never know unless you do extensive testing.Research is proving many genetic causes of autism are due to very rare,or unique,previously unknown mutations,deletions,duplications,etc..You will need whole exome or whole genome sequencing to find these.

    I also don’t believe enough parents of autistic children take into consideration everything their child was exposed to in the womb as a cause of their child’s autism.Environmental often means prenatal exposures.

    In closing.I would like to see some rational dialog between the antivaccine and neurodiversity groups,but I don’t see that happening.I personally don’t agree or align with either group.I would love to see the formation of a third.more realistic,view of autism,divorced from both camps.

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  3. Hi Roger,

    I consider Katie a wonderful friend with whom I share a personal experience regarding autism. We have the same realistic view about the condition and the same pessimistic view about federally funded research. However, more than anything, Katie is a wonderful, caring mother and this aspect of her shines through as we see how much she cares about her children.

    I wish you would write a blog expressing your views just like you did in the comments. Please consider doing so. My email is m0casa02@louisville.edu.

    Liked by 1 person

  4. Pingback: Response to NIMH Director Dr. Joshua Gordon’s: “Autism Awareness Message” | Science Over a Cuppa·

  5. Thank you, Kate, for writing this post. It is so important for people to know the realities of what these children/teens/adults are living through, and what that means to the parents and siblings as well. There are plenty of people like your son out there as you say. The NIH and other organizations need to do more to find out how to help our loved ones. Your child as you describe is not the rule, but he is not the exception either! Thank you for speaking up.

    Liked by 1 person

    • By the way, this is Chantal Sicile-Kira; not sure why word press is labelling me “catdogreb.” Obviously I am nog gifted when it comes to technology.

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  6. The part about GI problems: It’s not only autism they ignore. An overwhelming number of people with schizophrenia Irritable bowel syndrome before the onset of neurological symptoms (which goes unreported very frequently) and people with Parkinsons can develop crohn’s disease a few years before it sets in. Gut and Gi changes have been observed in people who develop major depression. Some of the brain’s neurotransmitters have been found to act as food for certain gut bacterias! Some literally eat serotonin!

    (I wonder if some of this explains the stereotype of cigarette smoking in Schizophrenia above or why some long term smokers have lower risk or less severe parkinsons, nicotine eases intestinal problems, and depressed people often smoke to ease their nerves, it could also be to handle gut problems?)

    There is a biomedical component they want to ignore. It’s DNA this, DNA that.

    I do want to note there may be a difference between GI problems though and plain bowel issues. I know another autistic person, she only has bowel problems when anxious or burned out that may last over a week after a stressful event, otherwise she is healthy and has no problems whatsoever. That isn’t a true GI problem since it’s only a state, not a trait. I don’t have GI problems either or regular bowel problems so maybe I have another subtype. But I used to be smoker which may have helped my intestines. Gi may serve to distinguish subtypes of autism or even depression/schizophrenia/parkinson’s like I mentioned above.

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  7. To both Katie and Manuel – Thanks for the great post.
    As a GI riddled, auto-immune disabled, depressed, anxious PhD from 3 generations of brilliant HFA’s, I also have overwhelming frustration with the NIH research agenda, especially since all the funds in hard science have been soaked up into “DNA this, DNA that”.
    We are a brilliant, energetic, productive community who has demonstrated the ability to affect the national research agenda. We need to redirect all that Autism Speaks money into more pragmatic projects and topics that we prioritize. As Katie says we haven’t even developed basic, obvious support like adult counseling, caretaker training and social-skills training (except for all that excellent research on eye-contact).
    I know way too much about person-first language and, even though I’m a scientist, I almost know nothing about the shape and direction of the autism research community.
    Do you know of on-line conversations where people share info about the good research? Who do you support with your donations? I was hoping this post would end with take-away action items to help each of us effect change.

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  8. I am not sure about an online conversation regarding autism at a serious level. From my part, I share the same pessimistic view about federally funded research. A significant portion is going into molecular mechanisms, animal models, and genetic research- none of which may translate as a benefit to the community. The system is corrupt favoring large institutions and established scientist regardless of their knowledge or interest in autism. In regards to your question about donation, I certainly do not sponsor Autism Speaks. Their point of view and priorities have changed according to what they think may provide for more donations. They started with the best of intentions but at present they commit most of their money to overhead rather than worthwhile research. Thanks for your comments.

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  9. Pingback: Response to NIMH Director Dr. Joshua Gordon’s: “Autism Awareness Message” "In looking at NIH autism research one would assume that eye gazing studies are the most urgent priority in the ASD community." - Today News Update·

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