Dad and mom of Youngsters with Profound Autism Utterly Ignored by IACC
By Katie Wright
A long-time criticism of IACC is the inadequate representation of people with severe autism. Instead of listening to these voices, Dr. Gordon has created a committee that is almost entirely composed of High Function Autistic (HFA) individuals. Ironically, there is a LOT of talk at IACC about “equity in representation,” “intersectionality” and “the need to hear unheard voices.” Yet when it comes to the talking the talk and walking the walk, Dr. Gordon appoints few if any parents of severely autistic kids. 60% of the spectrum not represented by IACC.
I have a severely ASD son and I rarely hear ACC members addressing issues that affect him. I hear all about trans & intersectional ASD people, systemic exclusionary practices, lack of transparency in community engagement and ASD people with “high support needs!” That phrase is flat out absurd! It sounds like an architectural term!
Severely, or profoundly affected ASD people make up 60% of the spectrum and are virtually unrepresented at IACC and in NIH autism research. Ironically, the IACC NIH team do a really nice job making sure our priorities, such as GI problems, SIBs, autoimmune dysfunction are included in Strategic Plan. However, these issues, so central to profound autism, rarely discussed by committee members. If such parents are on the committee, I haven’t heard a word from them. Hence, families like mine are not represented.
During public comments, long time parent advocate and president of Autism Science Foundation, Alison Singer, gave simple and straightforward speech about the lack of representation of on the committee of people like her daughter. Ms Singer’s daughter has profound ASD and is under represented, meanwhile the HFA community is grossly over representation on IACC. Singer also expressed concern that the HFA community is very judgmental of parent advocates and are quick to criticize what they do not understand. That will play out soon!!! Parents of severely affected kids are castigated by the HFA community for “abusing their children” by sending their child for ABA instruction. Another frequent criticism by the HFA community is that parents are cruel and “wanting perfect children, and “not accepting them (the autistic child) for who they are.”
My late Mom grew up in a big, noisy family. She taught me a lot about speaking in order to be heard: “be specific and get to the point!” I would rehearse school presentations with her and she would comment, “Too many ahhhs and umms, start over!” Or “you already said enough about that, cut it…..people’s eyes will glaze over here, too many details!” Tough but valuable lesson in time management and being heard. Ultimately, be mindful of others time.
Dena Gassner identifies as a person with autism She is working on her PhD. Ms. Gassner, routinely, uses up an excessive amount of the committee’s time. Deena presents herself as an expert in ALL that is autism. Gassner, all too frequently, expounds, in minute detail on dozens of behavioral studies no one asked to discuss. Ms. Gassner has college graduate son also on the spectrum AND claims to be able to fully represent children like mine and Alison’s! However, here on planet earth, when it comes to severe autism, I promise you she would not last an hour caring for my son, not because she is not a kind and caring person, but because she has never lived this life.
Dena was “distressed” by Singer’s simple and valid request for more equitable representation on the committee for those with profound ASD. Gassner believes the current committee is covering the subject very well! I find such concept amazing! I live in the world of severe autism and while I know a lot about autism science in general, I would never condescend to know the needs of HFA than the HFA people themselves!
Ms. Gassner insists “with the right supports and services” everything will be fine for most with profound ASD. That is such a false and reductive comment. Most of those on the severe side of ASD are afflicted with numerous complex medical issues: epilepsy, GI disease, autoimmune dysfunction, serious food allergies, like celiac disease. These are not problems that can be solved with supportive aides or community housing!
Ms Gassner, how often do u clean fecal matter off the wall? A lot of mons of severely ASD kids must do this daily. How many times has your son almost died of a seizure? Happened twice to us. How often did your son scream in pain an attempt to bang his head on the ground because of chronic constipation? This happened to the child of a friend of mine daily for 4 years. Deena, how many years in a row did u fail to get a good night’s sleep because your ASD child woke up screaming every night? I have friends who have not sleep through the night for 7 years. How often is your family in financial crisis because the cost of out of network but essential medical help? How many times has your son been hospitalized? My son has been hospitalized five times and that’s small time compared to my friend’s severe ASD kids.
It is ridiculous to be offended that parents of severely autistic people want seats at the table. Additionally, you owe Alison Singer an apology for your rude response to her very sensitive request. Singer made a reasonable request as a mother and as a member of this community and instead of taking in this autism mother’s point of view, you reacted with arrogance. Denna, cultivate some humanity.
The committee’s crazed one sided reaction to Ms. Singer’s very reasonable request, only proved her point. IACC’s lack of diversity, inability to understand what profound autism is, and inexplicable rage at the mom of a severely affected child, demonstrate that no one on IACC understands Singer’s concerns.! They don’t get it. A half dozen committee members instantly attacked Ms. Singer, condemning her with nonsensical arguments. For example, parents of severe kids want tracking devices in case of child elopement. A committee member said that’s awful and tracking devices should only be allowed when the ASD person can consent and remove device themselves! Thereby, defeating the whole purpose of the tracking device! I mean, where do we even go with that?
For quite some time, Dr, Gordon allowed IACC members to needlessly excoriate Ms. Singer from a place of arrogance. To make matters worse, dr Gordon, presented the issue as one of perception, not of reality. “Alison rightly or wrongly believes profound autism not well represented here.” Dr Gordon, she “rightly perceives,” this!! It was you who choose an autism committee composed of nearly all members of HFA community. My son has severe and medically complex autism and he represents far more members of the ASD world than Ms. Gassner. dr Gordon, you need to wake up wake up!
Due to the make up of the committee, only one person echoed Alison’s concerns. dr Matt Siegel shared important recently published research demonstrating that 2/3 of all autism treatment studies focus exclusively on those with HFA. People with moderate to severe autism represent 60% of the spectrum yet are only the focus of 1/3 of all autism treatment research. Once again, endless talk about the need for “equity” among IACC committee members, but no follow through when it matters.
dr Jennifer Johnson is the Dept Commissioner Administration for People with Disabilities at the Dept of Health and Human Services. Johnson spoke for what seemed like a long time, but managed to say little. “High needs….community support….characterization of individuals….intersectionality…..community services…context of available support.” This is torture! Please, I am begging you, ease up on bureaucracy talk, use specifics and be brief. Johnson was trying to make the point that there is no need for living facilities for people with profound autism. All this population needs to the right, “community supports and services.”
It physically pains me that Ms. Johnson is so close minded. Guess what, Dr. Johnson, we all tried community support and services and it did not work!!! People, like my son, cannot always drive locally. The noise of the city became oppressive to my him and he longed for more physical freedom (to walk without me right next to him). There are also very few appropriate learning opportunities for children 21 and older. The cost of FT 24/7 care prohibitive and the distance between his doctors always problematic. At the Center for Discovery, my son lives in a safe and stimulating community of disabled young adults. Half of his day is spent in a classroom learning better communication and self-care skills and the rest of the day is spent ¼ mile away working in the horse barn, sorting produce, recycling, even stacking hay. He loves the work. No home setting can replicate this. Most importantly, there is a medical facility for people with special needs a mile away.
Living in a special needs community is not for every child with autism. But sometimes, it is clearly the best choice for the child. Dr Johnson needs to understand this.
This IACC meeting was a perfect illustration of how the selection process for IACC has gone wrong, really wrong! The NIH needs to choose leaders of actual organizations (The National Autism Assoc., TACA, etc.) with thousands of people, people who really represent part of the community. I guarantee that 99% of parents of kids and adults with profound autism would have been incensed by the way Ms. Singer was treated. I greatly admire her courage for speaking out on behalf of those with profound autism. Parents of kids and adults with profound autism would also be furious at Dr. Gordon for creating and autism committee that left out half the spectrum.