Parents of Kids with Profound Autism Completely Ignored by IACC
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 ay 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 transparence 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 soon play out!!! 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 conceit 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 sensible 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 humility.
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 understand Singer’s concerns.! They do not get it. A half a 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 thrive 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 child 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.
NeuroFibromatosis 1 and Fragile X syndrome are not "rare" disorders, uncommon yes rare no. They mayo clinic has a formula for the commonality of disease. Very common, common, uncommon, rare, very rare, and extremely rare, and it is 3 million cases, 3 hundred thousand cases, 30 thousand cases, 3 thousand cases and 3 hundred cases. They accord in about 1 in 2500 people which means Sacramento CA where the MIND Institute is locates have at least 200 patients of both conditions. If you think "autism" should only include people like your child then so be it I am still disabled and I have legal rights to certain accommodations and services which must be respected. I have the right to call myself "autistic" because I am a regional center client an that organization diagnosed me as a child.
Go to the websites of NeuroFibromatosis, Rhetts, Tuberous Sclerosis and Fragile X organization and learn more about the diseases and empathize with the families instead of creating devision in the disabled community.
Posted by: Bill | March 11, 2022 at 10:05 AM
I meant no disrespect about FX, Retts etc, only that u r unlikely to see your primary needs well addressed in autism community, for example cancer related conditions. These are, fortunately, extremely rare conditions. Sadly, autism, as experienced by my son, is not, We can agree to disagree about whether these conditions meet autism parameters. Doctors are well meaning & liberally dx.
Posted by: Katie | March 08, 2022 at 12:04 PM
It does not matter if you think such children and young adults with genetic disorders do not fit the definition of "autism". If a neurologist or psychologist called them in their legal and medical opinion as having "autism" then they are legally and medically "autistic" . That includes a me a young man who is a regional center ( these organizations helps those with ID and DD type disabilities) client in California. I have a life threatening genetic nerve tumor disease.
Is autism over-diagnosed? You betcha! Are there rare vaccine side effects that cause brain damage similar to "autism"? You betcha! Please stop the semantic, recognize the needs of those with all kinds of "autisms" whether they are high or ow functioning and whether they have Fragile X, Rhetts, Neuro-fibromatosis or no genetic disorder at all.
Posted by: Bill | March 07, 2022 at 09:29 PM
Forgot to add this:
Why OWL CITY (Adam Young) Is A MUSICAL GENIUS
A great summary of his incredible and unique talent.
Posted by: Emmaphiladelphia | March 06, 2022 at 05:15 PM
The Lord has used Adam's music and lyrics to give me insight into the ways of thinking and communicating that my autistic son could not express to me. Adam Young (Owl City) is a musical genius. His songs are healing and lift you out of depression into a higher plane. I believe Adam's music is his way of coping with his own trials with autism. His strong Christian faith shines through.
Adam Young – One of Many Artistic Aspies (Owl City)
Owl City - Always (Official Audio)
Owl City - Not All Heroes Wear Capes (Acoustic)
Owl City - How Deep the Father's Love for Us - Adam Young
Owl City - To The Sky (Official Video)
Owl City - My Everything (Official Video)
Owl City - Fireflies (Official Music Video)
Posted by: Emmaphiladelphia | March 06, 2022 at 04:58 PM
I know what you mean about family not listening to your advice about the gene therapy. Not a single one of my family listened or learned from my over 20 year struggle with vaccine injuries. So far, none of my family's injuries have been obviously related to the gene therapy. Things like "I fell, broke my collar bone and my ribs, but don't remember anything about the fall." That one was about five days after the booster. Did you faint maybe? I have come to the conclusion that none of them ever believed that I dealt with vaccine injuries to begin with or they put it out of their mind or something. I heard Polly Tommey (from Vaxxed and the Vaxxed bus) talk about what to do with the anger she felt after relatives succumbed to ill effects from the gene therapy. Unfortunately she didn't have any good solutions, but it helps to know that I am not alone with my anger.
Posted by: Betty | March 06, 2022 at 10:37 AM
Its been a while. I told Tom he deserved Jail. Guess he wrote a book instead. Confession is good for the soul. Tom has a special place right down there with Fauci. Allison deserves it, unfortunately. maybe she needs to get a taste of her own medicine for a change. maybe it will help her start to defend the voiceless, and find a way out of being the only LFA parent of the group. She has money, right?
I've been to several meetings where she was right up there with the HFA group commiserating with them. Instead of voicing what she now voices. Too little too late IMO.
I offer some grace. It's been a rough week. Maybe she will walk away giving the voiceless a reprieve and the HFA all they want. Maybe she will double back and try harder for those like my son? Maybe. When did the IAACC first start? -- and how long have they been at this charade?
Posted by: Tara McMillan | March 06, 2022 at 08:45 AM
A relative with an adult child with spina bifida said that the government has admitted that Agent Orange is most likely the source of her disability. Her father was exposed to the chemical while serving in the Viet Nam war. My relative said that they were in the process of getting VA benefits for her daughter.
I was SHOCKED that the military had made such an admission and IS PROVIDING VA BENEFITS to children born with this disability. I am happy for my relative. Her daughter has been wheelchair bound her whole life and had to undergo several spina bifida surgeries. How did parents get this recognition and federal support? What about military vaccine related injuries/ death? Why wasn't spina bifida considered to be a "genetic" defect? We should research the people who made this happen.
Posted by: Emmaphiladelphia | March 06, 2022 at 02:59 AM
Katie, I think there’s a real purpose to ignoring the severe side of autism.
High functioning autism is what we see every April. A typical-looking child interacting with a speech therapist or playing on a jungle gym with calls for awareness reinforces the tired claim that all the autism everywhere is greater awareness/better diagnosing of something that’s always been here.
IACC’s real mission statement is to appear concerned about autism, but do nothing to reveal what has happened to at least two generations of American children. So it’s all a pretense.
Autism can never be a crisis, no matter how bad the numbers get. Autism must be normalized. Acceptance for neurodiversity is one way to do it and that’s the high functioning side of autism.
The image of a nonverbal 25 year old in diapers simply raises too many questions.
Posted by: Anne McElroy Dachel | March 05, 2022 at 09:16 PM
Agree with everyone that Tom Insel’s new book is crazy making. He calls it “Healing” & then admits none of the billions of $ he pushed to spend on genetic research accomplished anything!! 🤨🤨🤨
I’ve been at this for almost 20 yrs & it was always painfully obvious that genetic research alone would lead to prevention or treatment was laughable. This is a complex multi factorial disorder. In 2005 Insel told me, “you will see, will will phenotype autism & develop personalized treatments in 5-10 yrs!”
In 2022 the NYT asked Josh Gordon, Insel’s replacement why no success with all these giant autism projects he said, “just wait another 5- 10 years!!” It’s like they REFUSE to learn.
Posted by: Katie | March 05, 2022 at 02:36 PM
Tom Insel, Thanks for the heads up on that one.
I have been wondering how his life has been going.
I loved his TED TALK were he told us how incredible high the numbers of people having poor mental health and with all of that he might should be fired.
I will never forget what he said in Congress that tells us all that the worse outcomes of disease; death and retardation did not go away with vaccinations. HE never would tell us if perhaps it was worse?
Well we should know by now.
I have yet another cousin, this time not in Ohio, or Mississippi, or Southern California, but another one in Alabama that just got out of the hospital with blood clots in his legs that went to his lungs.
His doctor said - honest doctor said there are blood clots and then there are blood clots caused by the covid vaccine. I would like to know why my cousins did not listen to me. I told my extended family - every one. Yet off they go.
Posted by: Benedetta | March 05, 2022 at 09:01 AM
A song of hope in times of trouble....
"These are the days of Elijah,
Declaring the word of the Lord:
And these are the days of Your servant Moses,
Righteousness being restored.
And though these are days of great trial,
Of famine and darkness and sword,
Still, we are the voice in the desert crying
'Prepare ye the way of the Lord!'
Behold He comes riding on the clouds,
Shining like the sun at the trumpet call;
Lift your voice, it's the year of jubilee,
And out of Zion's hill salvation comes.
These are the days of Ezekiel,
The dry bones becoming as flesh;
And these are the days of Your servant David,
Rebuilding a temple of praise.
These are the days of the harvest,
The fields are as white in Your world,
And we are the labourers in Your vineyard,
Declaring the word of the Lord!
There's no God like Jehovah.
There's no God like Jehovah!
Judy Jacobs - Days of Elijah
Posted by: Emmaphiladelphia | March 05, 2022 at 02:05 AM
Thank you Katie for all you do. Did anyone else notice a book review in the NY Times about a memoir by Thomas Insel? It seems he admits that steering all the research funds to genetics was not fruitful. (!) I’m remembering some posts by Katie a few years ago about the over funding of genetics and under funding of environmental research. Katie must feel like Cassandra.
Posted by: Anna Quandt | March 04, 2022 at 08:32 PM
“While Europe's eye is fix'd on mighty things,
The fate of Empires and the fall of Kings;
While quacks of State must each produce his plan, And even children lisp the Rights of Man;
Amid this mighty fuss just let me mention,
The Rights of Woman merit some attention.”
Robert Burns wrote those words over 200 years ago during a time of conflict in Europe and much uncertainty. In The Rights of Woman, Burns communicates the idea that the ruling class would benefit from turning their attention to the female sex to generate humanity, as opposed to crippling civilisation with war.
WE COULD DO WITH A RABBIE BURNS NOW FOR AUTISM RIGHTS
Pharma For Prison
Posted by: Angus Files | March 04, 2022 at 03:42 PM
"We asked for research on treatments for those co-occurring conditions with autism that cause increased mortality for people on the spectrum, like increased suicidality, seizures, and GI issues. What did we get? (If you are reading this, you know we got nothing.)"
Perhaps the powers that be do not want a treatment that works?
There is a parallel with a recent interview regarding the deliberate prevention of use of Ivermectin to successfully treat Covid 19. See the interview on this week's The Highwire with Del Bigtree.
My elderly mother recently passed away from Alzheimer's complications. She was in a nearby "memory care" lockdown facility that allowed family members to visit and also take their loved ones on short outings, at their discretion. I have often thought that this type of facility might be adapted for severe ASD adults. There are similarities with Alzheimer's and ASD. Both can have violent behavior and loss of speech. Currently, because of Covid 19, many of these facilities are only at minimum capacity because so many in that age group died.
Posted by: Emmaphiladelphia | March 04, 2022 at 02:34 PM
There were two studies back in 2018 dealing with life expectancy for people on the spectrum. One gave an age of 36, and the other gave an age of about 40. The study with a projection of 36 years gave accidents as the main reason for the lowered life expectancy. The other study cites heart issues, suicide, and epilepsy as the reasons. Anyone with a HFA child who has recognized the benefits and need for biomedical intervention for their child understands that the dichotomy set up by the IACC makes that organization totally ineffective in furthering the needs of almost all people on the spectrum. I believe it is a convenient "divide and conquer" strategy employed on purpose to avoid addressing the health issues of autism. The neurodiverse community plays right into the hands of those wanting to avoid addressing these health issues. It is about money and power. I don't believe that breast cancer advocates give us any insight in to how to address this problem since pharma seems to control the research that is done in this area. More toxic chemo is not the answer, but drugs like hydroxychloroquine and ivermectin (which show possible benefit without the extreme toxicity) and other non-pharmaceutical interventions will never be studied. The same is true for Alzheimer's research. True treatments and avoidance techniques are not studied because pharma will not profit and may actually be outed as being the cause of increases in Alzheimer's. I think the real divide is not HFA vs severely disabled even though there is sometimes large divergences in community needs. I think the real divide is between those who understand the biomedical basis for autism and those who don't.
Posted by: Betty | March 04, 2022 at 01:29 PM
Will, I think the life tragic threatening diseases and brain cancer you are speaking about belong under the rare disease or cancer umbrella. You would probably make a lot more traction there too. I’m so sorry kids are facing these terrible conditions.
Posted by: Katie | March 04, 2022 at 12:58 PM
Lisa Weiderlight is the wisest autism mom I know and I am going to nominate her to IACC!!
Despite dozens of Moms & Dads like Lisa coming to DC to give their 2 min speech on the dire need for medical help, the NIH has yet to Sponsor ONE ASD/GI treatment study, not ONE PANDAS study, not one Charlottes Web intractable autism study. Not ONE. Pressure needs to b brought to bear on Dr Josh Gordon. He cannot endlessly further the billion $ useless pet genetic & genomic projects that help no one.
To the person with rare diseases. I am so sorry. Those conditions sound horrific. However, I have found that most people with FX, Retts etc do not actually meet ASD criteria. I don’t think the ASD suits b/c what those children are suffering from is an entirely different solely genetically driven disorder.
Posted by: Katie | March 04, 2022 at 12:54 PM
That national council on severe autism was bringing up this issues to congress and state and provincial legislators, But is seems some at Age of Autism are against with them. It need to be said that some with so called "mild autism" can have life threatening health issues like me a patient with the life threatening nerve tumor disorder neuro-fibromatosis. I have had friends die very young from rare sarcoma and brain cancers related to this rare genetic disease. A person has a 20% chance of getting neurofibro-sarcoma and a 15% chance of high grade gliomas with Neuro-fibromatosis. Most of these friends with NF also had mild autism and ADHD but that was least of their worries. If Age of Autism wants allies it needs to stop using IQ as a distinguish of who has "severe" autism and recognize the issues and needs that effect those with so called "Asperger's" syndrome
Posted by: Will | March 04, 2022 at 10:43 AM
Katie-Thank you for your excellent post about how people like us who have profoundly affected autism are not represented by the IACC, or Autism Speaks, or the CDC, or the NIH. 60% of the population of people with autism are on the more profound end of the spectrum and yet they are not getting the amount of vital attention they need by the research or advocacy communities for vital research funding to help find the right medications and treatments that they need for a possible cure. My adult son has autism, epilepsy, and also screams in the middle of the night and bangs his head on the wall or punches himself in the head if he hears people yelling at each other even on television. We need RESEARCH from the right people to find the answer to our sons and daughters more severe autism that can be corrected with the right immune modulating medications to correct what the condition they have which is neuro immune dysfunction syndrome. Our doctor has been trying for years to get funding for this kind of medication and has not been successful. His name is DR. Michael Goldberg and he is in Tarzana, California. Could you please contact him and help him and all of us to get to these immune modulating treatments so our sons and daughters can have the life free from autism that they so deserve. Thank you and I hope you will help all of us get there.
Posted by: Gayle | March 04, 2022 at 10:23 AM
I think it goes deeper than the division between HFA and severely disabled kids. Many parents with high functioning children also feel underrepresented and can see the hypocrisy of leaving out representation of the severely disabled. The purpose may not be solely to deny services to severely disabled, but also to continue the myth that there is no common medical issue among autistic children that needs to be addressed. We will always have a ineffective IACC until the medical issues are front and center. The HFA/Severely disabled division is simply a way of hiding the real issue.
Posted by: Betty | March 04, 2022 at 09:13 AM
Thank you for your insights into the IACC, Katie. It must be maddening to experience these meetings firsthand.
It's gotta be the money, right? If a diverse range of individuals can be represented by people who need comparatively little assistance, then the problem doesn't seem so big, and won't require so much money.
I wonder if other advocacy groups--breast cancer groups, ALS groups, etc.--can be models for getting all representative viewpoints heard. Maybe the rare disease folks, who (I believe) hold "lobby days" on Capitol Hill and at state legislatures. Obviously IACC and the feds have the last word on who gets heard, but letting Congress know IACC is not meeting people's needs might help. It would not be easy to coordinate a lobbying day with families with severely affected individuals, but if it could be done, it might be pretty powerful.
Posted by: TOB | March 04, 2022 at 08:23 AM
Katie nails it again!
Let's think about this. The IACC has given us MORE, too.
More waiting lists.
More wasted money on studies not connected to any policy priorities.
More support for people who wish to isolate and show indignation toward those of us who know people living with autism and their families need real support, help, and treatments that target the disabling characteristics of autism. Because we have been living it for decades.
I challenge Dr. Gordon to put Katie Wright on the IACC. Sorry, Katie.
Sitting through IACC meetings after making my ignored two minutes of testimony when I led SafeMinds was among the most frustrating times of my life. We asked for research that informed public policy. Who DOESN'T fund research connected to public policy? IACC. One member actually was interested in talking more, but once it got to Dr. Gordon, it was shut down.
We asked for research on treatments for those co-occurring conditions with autism that cause increased mortality for people on the spectrum, like increased suicidality, seizures, and GI issues. What did we get? (If you are reading this, you know we got nothing.)
There is a lot of work to do, but since the legislation that created the IACC, was enacted about 30 years ago, nothing has been done that has made any major change for our community. Adding only those who can advocate for themselves who likely graduated with high school diplomas and/or advanced degrees to the IACC only proves how lazy NIH is. Where are the people living with autism on the IACC who communicate with a AAC device, or a letterboard? We should not promote the division of the autism community, but foster partnerships for those across it.
Who makes the decision who is on the IACC? What are the criteria used to choose who is on the IACC? Where is the transparency--this is unacceptable. Before I left SafeMinds, we nominated Rachel Barcellona, and autistic self-advocate. Look at all she has done for the autism community! She isn't on the IACC. I'd like to know why.
I could go on, but the reality is this. The majority of people living with autism have similar needs--just to a different degree. Shame on the IACC for taking the easy way out. Tragedies unfold every day for those living with autism and their caregivers, and the willing blindfold of the NIH never comes off. Thanks, Dr. Gordon. For nothing.
Posted by: Lisa Wiederlight | March 04, 2022 at 08:18 AM