10.01.2018

In A Different Key: Not The Autism Book You're Looking For (Live-Tweeted Review)

Content note for abuse and murder of autistic people.

I live-tweeted my reading of John Donvan's and Caren Zucker's "The Story of Autism" book In A Different Key when it was first published in early 2016. As the Storify platform my live-tweet compilation was originally published at has since gone under, I am republishing it here.

Verdict: Though well-intended and containing some interesting points, In a Different Key lacks empathy for autistic people themselves—even justifying parents murdering their autistic children. It also contains sloppy factual errors. Details in tweets/RTs below.

For other perspectives on the book, see relevant writings and reviews, also from 2016:
Note that in the interim, additional information has emerged about the details of Hans Asperger's work with the Nazi regime, and also also the regarding how researcher Herman Czech specifically kept this information away from NeuroTribes author Steve Silberman despite repeated requests, yet shared it with Donvan and Zucker during the two books' parallel writing period. For details, see Silberman's "conversation across neurologies" with Max Sparrow, on "how competition for priority can distort the process of excavating history."

Live-Tweets (From 140-character-era Twitter)



  • Live-tweeting my read of new book #InADifferentKey, from my perspective as a parent of a 1:1 #autistic teen, and a #neurodiversity supporter.


  • Tone of #InADifferentKey from page one: focus on “forms” of #autism, rather than very real, unifying #autistic commonalities. #NotHelpful
  • Also #InADifferentKey page 1: Parents fatalistic over not being able to “give” their child speech. Communication=more than speech. #autism
  • Parents need to hear that all communication is valid. Focusing on speech when other options available = damaging.. #InADifferentKey #autism
  • Focusing on the audience crying when an #autistic girl “awkwardly” hugs Katy Perry is inspiration porn. #InADifferentKey #autism
  • Parent voices = most “constant presence” in #autism history only b/c #autistic adults = unrecognized for most of 20th cent. #InADifferentKey
  • Donald Triplett’s #autistic perception of the world is characterized as “inflexibility,” rather than his reality. #InADifferentKey #autism
  • Stop bemoaning that #autistic kids don’t show affection like non-autistic kids. How about focusing on how they DO? #InADifferentKey #autism
  • Leaning against one’s parent if eye contact & touch are extremely aversive is an *extraordinary* show of affection. #InADifferentKey #autism
  • Of course it’s hard for non-autistic parents, if they don’t understand #autistic kids may express love differently. #InADifferentKey #autism
  • Glad clinical roots of terms like “idiot” are discussed — hopefully will help folks understand objections to usage. #InADifferentKey #autism
  • Social shaming prevented parents of kids w/disabilities from talking to each other, forming community, for decades. #InADifferentKey #autism
  • Professional shaming dehumanized kids w/disabilities as “burdens,” families were *always* told to institutionalize. #InADifferentKey #autism
  • Prev. eras: Parents were told it wasn’t “fair” to them, “normal” siblings to raise kids w/disabilities at home. :( #InADifferentKey #autism
    Sun, Jan 17 2016 02:01:21
  • Donald Triplett’s preference for things over people makes #autistic sense — people are unpredictable, thus scary. #InADifferentKey #autism
  • Kanner recognized that, even when he began identifying kids as #autistic, “[#autism] was there before.” #InADifferentKey #autism
  • Retro-diagnosing historical figures as probably #autistic is not a new thing; happened during Kanner’s era, too. #InADifferentKey #autism
  • Autistic developmental trajectories differ from “typical” ones, but Triplett exemplifies how development continues. #InADifferentKey #autism
  • Donald Triplett isn’t “proof that some leave the most debilitating aspects of #autism behind," but proof of #neurodiversity #InADifferentKey
  • #InADifferentKey’s phrasings perpetuate bias: D. Triplett is declared "a strange kid," rather than *perceived* as strange by others. #autism
  • Later, however, Triplett described as “strangest-seeming” kid. Much better, making difference about perception. #InADifferentKey #autism
  • “It was a challenge to be friends with Donald [Triplett].” Well, not all #Autistic kids seek or desire friendship. #InADifferentKey autism
  • Eventually, Donald Triplett had acceptance of his family, & allies who fought off bullies at high school. Good. #InADifferentKey #autism
  • Donald Triplett’s visibility & inclusion lead to eventual community acceptance. We need more of that, even today. #InADifferentKey #autism
  • The horrifying cruelty of the “Refrigerator Mother” label cannot be (re)emphasized enough, as #InADifferentKey recognizes. #autism
  • Long-standing negative media bias: @TIME covered #autism only after Kanner switched f/Inborn to Refrigerator Mother origin. #InADifferentKey
  • I would have been broken by the Refrigerator Mother #autism professionals, had my son and I lived in that era. Devastating. #InADifferentKey
  • Rimland discovered most “refrigerator mothers” had non-autistic as well as #autistic kids -- theory wasn't evidence-based. #InADifferentKey
  • Again with #InADifferentKey terminology. “Head bangers” are 80s/90s rockers. Otherwise, head banging is what a person does, not an identity.
  • “Tragic tendency of #autism advocacy groups” to turn on each other. No—Infighting b/t passionate folk happens w/ALL groups. #InADifferentKey
    Tues, Jan 19 2016 10:44:11
  • Many horrors against #autistic people included #InADifferentKey; worst so far: authors implying Dougie Gibson’s murder was a “mercy killing"
  • [image: Photo from the page of In A Different Key in which
    Dougie Gibson's murder is called a "mercy killing."]
  • It should never ever EVER be implied that killing an innocent #autistic person is a desperate parent’s only choice. #InADifferentKey #autism
  • "Desperate parents driven to murder” is one of the most dangerous, pernicious autism myths. There are always other choices. #InADifferentKey
  • #Autistic kids & families need & deserve support. But should NEVER be implied that, sans supports, murder = understandable. #InADifferentKey
  • Dougie Gibson was a murder victim. Yet #InADifferentKey dwells on and sympathizes with the story of the father who killed him. #autism
  • BTW, you know who also wrote about lack of supports justifying parents’ murder of their #autistic kids? Andrew Wakefield. #InADifferentKey
  • Dougie Gibson’s father convicted of murder, accd’ing to #InADifferentKey, only b/c jury didn’t get how hard “severe” #autism is—on parents.
  • Other #autism parents recognized the despair of Dougie Gibson’s father, argues #InADifferentKey, in defense of murdering #autistic children.
  • Which is worse: The systematic horrors of state institutions for #autism etc, or public’s systematic amnesia about them? #InADifferentKey
  • While #InADifferentKey constantly describes #autism as extreme hardship for parents, it pays little attention to #autistic kids themselves.
  • Seems like #InADifferentKey could at least consider the misery of an #autistic child who is constantly being misunderstood and unaccommodated.
  • In what universe is it OK or amusing to lock a non-speaking #autistic child in a room with an IRS agent to escape an audit? #InADifferentKey
  • #InADifferentKey is frustrating: The history of how #autistic kids became visible and educated matters. But so does honoring their humanity.
  • Distressed to think of the Archie Castos we’ll never know about; all the #autistic folk institutionalized, then forgotten. #InADifferentKey
  • It’s depressing, all the ways people have tried to force #autistic kids to talk: LSD, shock treatments, beatings. #InADifferentKey #autism
  • The 12-inch cattle prod that Lovaas used on #autistic children entrusted to his care at UCLA delivered 1,400 volts. #InADifferentKey #autism
  • Lovaas’s cattle prod felt like “having a tooth drilled by a dentist who had run out of Novocain” Those poor #autistic kids. #InADifferentKey
  • (I took classes at the UCLA Neuropsychiatric institute — where Lovaas worked — as a student in the late '80s. Am nauseated.)
  • When #autistic children are self-injurious, usually a good reason, like illness/sensory. Yet #InADifferentKey characterizes as “behavior.”
  • It may take time/sleuthing to find out why a kid is self-injurious, but the cause is rarely merely “being #autistic.” cc: #InADifferentKey
  • Even tho not understood in Lovaas's time, would be helpful to let readers know #autistic “stimming” helps self-regulation. #InADifferentKey
  • “Lovaas achieved similar mastery of the self-destructiveness of two other children,” i.e., he abused them into submission. #InADifferentKey
  • #InADifferentKey is frank about Lovaas’s abuses of #autistic children, but doesn’t exactly condemn them, either, not when they “worked."
  • Did not realize that Rimland essentially pimped/proselytized for Lovaas, in recruiting parents for ABA. #InADifferentKey
  • Interested to hear about the background and development of the TEACCH method. Somewhat like ABA, sans cattle prods. #InADifferentKey #autism
  • TEACCH methods are still widely used to educate #autistic students—in fact, it’s the method my son’s school employs. #InADifferentKey
  • Oh FFS. Families do not “deal with #autism.” That is no way to describe parenting ANY child, in need of support, or not. #InADifferentKey
  • When Lovaas had his second heyday in the '80s, he was careful to avoid “cure,” used euphemism “recovered” instead. #InADifferentKey #autism
  • You want to talk gnarly infighting? How about the extended, public, litigious Schopler (TEACCH)/Lovaas (ABA) brawl? #InADifferent #autism
  • “Schopler believed Lovaas had played [..] with the scientific truth, & that people would get hurt…” A valid fear indeed. #InADifferentKey
  • Things ABA proponents tend not to mention: Lovaas’s own results were unreplicated, therefore scientifically questionable. #InADifferentKey
  • #InADifferentKey describes support for Lovaas/ABA methods stagnating— until catalyzed by the publication of Let Me Hear Your Voice. #autism
  • Recently told a friend in Ghana that US didn’t guarantee special education until the IDEA passed in 1990. She was aghast. #InADifferentKey
  • Past US researchers tended to see #autism as an emergency, British researchers tended to want to understand it. Still true. #InADifferentKey
  • Briton Sybil Elgar’s early 1960s insight: “Visual processing tends to trump auditory processing in some kids with #autism.” #InADifferentKey
  • First official UK #autism prevalence rate of 4.5/10,000 was completely arbitrary, by researcher Lotter’s own admission. #InADifferentKey
  • .@utafrith’s early research w/#autistic kids confirmed that, for many, visual processing trumped auditory. #InADifferentKey
  • Genetics, & the possibility of their influencing cognition/development, was a psychiatry taboo mid-20th century. #autism #InADifferentKey
  • Genetics matter in #autism. This has been clear since Rutter's & Holstein’s 1974 UK twin studies. #InADifferentKey
  • When @sbaroncohen first ran Sally-Ann Theory of Mind tests, not every #autistic kid failed. 15% didn’t, in fact. #InADifferentKey #autism
  • Again #InADifferentKey dehumanizes: Lorna Wing unique among researchers in going "home to #autism at night,” rather than home to her child.
  • Why is #InADifferentKey so sympathetic to Lorna Wing’s efforts to expand the #autism spectrum, yet so often hostile to those she included?
  • You can read Lorna Wing’s original paper "Asperger Syndrome: A Clinical Account" here:  http://www.mugsy.org/wing2.htm  #InADifferentKey #autism
  • Lorna Wing created “Asperger syndrome” not to differentiate #autistic people f/each other, but to get them needed supports. #InADifferentKey
  • #InADifferentKey’s bias against Hans Asperger, in featuring only mostly his negative statements re: the boys he treated, is iffy journalism.
  • Hans Asperger saw “complete agreement in some respects” between the kids he reported on, & those Leo Kanner’s saw. #InADifferentKey #autism
  • Seems odd for #InADifferentKey to insist Asperger only studied Asperger-y #autistic kids, when historical record shows otherwise. #autism
  • Wish #InADifferentKey would stop with “families dealing with" #autism or DD, say “families who try to support their #autistic kids” instead.
  • #InADifferentKey is correct that many families of #autistic kids actively fight acceptance, in actively try to find “real” child inside. :(
  • Irresponsible: #InADifferentKey focuses on desperation of parents to communicate w/#autistic kids when result is tragedy, ignores valid AAC.
  • Everyone can communicate. We need to find better support strategies, not belabor well-known communication failures. #InADifferentKey #autism
  • Many #autistic people can’t speak/react typically due to motor/processing difficulties. #InADifferentKey has yet to consider that (p. 371).
  • #InADifferentKey oversimplifies, cites “acrimony” between those who view #autism as tragedy, & those who view it as gift/identity. (1)
  • Complaints re: “#autism is a gift” = misinterpretations of #autistic folk demanding recognizing abilities *&* disabilities. #InADifferentKey
  • Was 2013 DSM #autism revision more contentious than previous—or was it merely 1st in which #autistic people participated? #InADifferentKey
  • #InADifferentKey doesn’t actually mention #autistic participation in 2013 DSM; only mentions #autism revision being particularly contentious
  • Was Asperger an #autism criteria “splitter,” not a “lumper” like Wing? Or did he merely defer to Kanner’s territorialism? #InADifferentKey
  • #InADifferentKey’s authors must now buy the entire internet a drink, due to invoking cancer analogies in discussing #autistic heterogeneity.
  • Apologies that it's taking me so long to live-tweet reading #InADifferentKey: 1) Life interrupts & 2) It’s painful to read, on many levels.
  • Kids like Dov Shestack are both chronically ill *and* #autistic. Co-occurring. Illness is not, as #InADifferentKey suggests, part of #autism.
  • #InADifferentKey readers: #autistic people do indeed have higher rates of co-occuring medical conditions. But #autism is *not* medical.
  • Yes, $$ can influence direction of #autism research, as #InADifferentKey notes. Hence need for skepticism, reliance on unbiased expertise.
  • Most non-scientists don’t have a clue about differentiating b/t good and questionable #autism science. Why so many get duped. #InADifferentKey
  • Pseudo- or misguided #autism science (ECT for “behaviors," epigenetic causation) look plausible to lay folk yet horrify ethical researchers.
  • Dehumanizing phrases to avoid, yet used in #InADifferentKey: “Living with #autism” when discussing parent rather than #autistic experiences.
  • Unsurprised to learn ‘90s era org Cure Autism Now had a veto-enabled parent-only science advisory board. #InADifferentKey #autism
  • Interesting to read about IMFAR/Int’l Meeting For #Autism Research roots as a joint CAN/NAAR curebie/biomed initiative, in #InADifferentKey.
  • If only books like #InADifferentKey could focus on *why* an #autistic person might smear poop, instead of framing as horrorshow for parents.
  • @SherriPizza lots of possible reasons:  http://www.thinkingautismguide.com/2016/01/when-autistic-kids-and-teens-are.html  & yes cleanup sucks. But focus on the act too often used to dehumanize person
  • @SherriPizza Different when people talk privately. Book broadcasts an #autistic kid’s misunderstood struggles as horror for parents only.
  • @SherriPizza It’s not that parents aren’t allowed to have feelings. It’s that #InADifferentKey is ~exclusively about parent perspectives.
  • @SherriPizza And yes, it can be desperately lonely as a parents. But books like #InADifferentKey make it worse, IMHO, by compounding stigma.
  • Good to see #InADifferentKey acknowledge (tho 3/4 thru): #autistic insights are lifelines for parents who struggle to understand their kids.
  • #InADifferentKey, like #NeuroTribes before it, has good info on backstory of Rain Man.
  • It’s not for #InADifferentKey’s non-#autistic authors to declare Dustin Hoffman’s #autism portrayal “flawless.” Ask #ActuallyAutistic folk.
  • Temple Grandin’s approval of Claire Danes’s portrayal of her, as told in #InADifferentKey? Now that matters. #ActuallyAutistic
  • Not in #InADifferentKey: Temple Grandin’s mother refused to institutionalize her bc saw institutions as journalist.  http://meaningoflife.tv/videos/32212 
  • Before Temple Grandin/late ‘80s, #actuallyautistic insights weren’t available to parents/public. #InADifferentKey Thankfully no longer true.
  • #Autism professionals have important roles, but there is no substitute for #actuallyautistic insights, in understanding #autistic people.
  • #InADifferentKey finally cites #autism understanding/compassion; but only as way to help Temple Grandin normalize, & not her #autistic QoL.
  • Ugh. Did not realize Gerson Saines acceptance speech for Temple Grandin Emmy catastrophized re: #autism epidemic myth. Sigh #InADifferentKey
  • Like #NeuroTribes, #InADifferentKey shows there is no #autism “epidemic,” only changes in diagnostic criteria, and diagnostic substitution.
  • As #InADifferentKey notes, #autism is under diagnosed in kids of color/low SES kids. But it is also missed in girls:  https://www.blogher.com/how-can-we-do-better-our-autistic-girls 
  • Yep, anti-vax/#autism parents’ Achilles' heel was always “lack of convincing scientific support for an unproven hypothesis” #InADifferentKey
  • Yep, curebie parents reject science, embrace possibly fatal #autism pseudoscience “treatments” like chelation. Horrifying. #InADifferentKey
  • Another argument against person-first language—or for closer editing: “When injecting children with #autism…” er, what? #InADifferentKey
  • Charming: Anti-science parents invited to top #autism research meetings at NIH, etc. boast re: jeering and being disruptive. #InADifferentKey
  • Disingenuous: #InADifferentKey cites RFK Jr’s "Deadly Immunity" Rolling Stone article, but not @Salon’s retraction:  http://www.salon.com/2011/01/16/dangerous_immunity/ 
  • OK, so #InADifferentKey mentions later that @Salon retracted RFK Jr’s Deadly Immunity article on thimerosal. Several chapters later.
  • @NeuroDiverseAU I’m disappointed, honestly. I already knew #InADifferentKey was anti-neurodiversity, but I didn’t expect sloppy reporting.
  • #InADifferentKey cites @DrPaulOffit profiting from invention of rotavirus vaccine, ignores years of labor to create it, with no $ guarantee.
  • Sloppy: #InADifferentKey cites anti-vax furor over @DrPaulOffit profiting from rotavirus vaccine; ignores 100Ks of lives vaccine has saved.
  • I understand #InADifferentKey is trying to tell a compelling story. But the story is strangely sympathetic to pseudoscience #autism beliefs.
  • Glad to see #InADifferentKey recognize @deerbrian’s crucial role & then-rare skepticism re: Andrew Wakefield, in taking that charlatan down.
  • For the unaware: Wakefield was in cahoots w/lawyers seeking #autism-vaccine causation evidence to sue MMR makers for damage #InADifferentKey
  • #InADifferentKey is correct: Wakefield’s conflicts of interest in trying to undermine public confidence in the MMR vaccine are *stupefying*.
  • More #InADifferentKey sloppiness: it’s the *oral* polio vaccine that very rarely causes polio—and it hasn’t been used in the US since 2000.
  • So it is irresponsible for #InADifferentKey to state that the polio vaccine sometimes causes polio, when the US's injected version does not.
  • Michelle Cedillo’s story *is* a tragic one. But yet again, #InADifferentKey evokes “misery" of #autism by describing “behaviors” not people.
  • #Autistic people w/high support/complex medical needs deserve extra effort to see their humanity, less pity. Pls take note, #InADifferentKey
  • The real tragedy for Michelle Cedillo & family was being misled by anti-vax truthers & carpetbaggers. She deserved better. #InADifferentKey
  • “Hippocrates Would Puke”: apt summary of Andrew Wakefield’s MMR hoax (& New York Daily News headline), per #InADifferentKey
  • Schools still force #autistic kids to listen to non-autistic kids complain about them as @alexplank did in #InADifferentKey. Needs to stop.
  • While #InADifferentKey notes “Aspies” like @alexplank work hard to “pass,” its authors work just as hard to dismiss #autistic commonalities.
  • Why is it #InADifferentKey authors cannot conceive that #autistic people of all abilities may have more in common than not? Bias or denial?
  • #InADifferentKey could ask: Why aren’t *all* kids taught a common social skills framework? Why the pressure on #autistic kids, zero on non-?
  • Major #InADifferentKey fail: In claiming #autistic self-advocates are parents’s adversaries, it shows ignorance of what neurodiversity *is*.
  • @TheFactFidget @thinkingautism ➜ that it pits self-advocating autistes against parents is sad. Much can be learnt. Kids = future s-advocates
  • No, #InADiffferentKey: The “Ransom Notes” campaign failed b/c it dehumanized #autistic ppl, not b/c ran “afoul" of neurodiversity movement.
  • Oh FFS: #InADifferentKey compares Jim Sinclair’s “Don’t Mourn For Us” to Bettleheim’s Refrigerator Mothers, as form of parent blaming. O RLY
  • Acc’ding to #InADifferentKey, non-parents like Jim Sinclair shouldn't speak for #autistic kids “disabled in the extreme.” Like my own son?
  • At least #InADifferentKey’s agenda is clear: Anyone who is mean to parents of #autistic kids is awful. Even #autistic people wanting rights.
  • #InADIfferentKey in a nutshell — Cattle prods, murder, dehumanization: Let's not rush to judgment! Hurt a parent's feels: YOU MONSTER!
  • What #InADifferentKey doesn’t get: High support 1:1 #autistic kids like my own son *need* self-advocates to fight for their rights/humanity.
  • …b/c if people buy into messages #InADifferentKey spreads, ppl are *less* likely to support my #autistic son’s rights & humanity, not more.
  • #InADifferentKEy dismissively describes #autistic #autism researcher/info nexus Michelle Dawson @autismcrisis as a “formal postal worker."
  • #InADifferentKey critiques & patronizes @aneeman for a “failure of empathy”: telling parents to seek humanity, not cures for #autistic kids.
  • Since @aneeman is proudly #autistic yet refuses to be a self-narrating zoo exhibit, #InADifferentKey decides he cannot empathize w/parents.
  • …which is news to me, as @aneeman has spent a lot of time w/my own high-support #autistic son, and they are buds. Pls note, #InADifferentKey
  • Pls also note, #InADifferentKey: I would take issue w/your "not #autistic enough/no empathy” character assassination of @aneeman regardless.
  • #InADifferentKey claims people avoided arguing w/ @aneeman publicly for fear of being seen as bigots. Or maybe b/c his arguments were sound?
  • @thinkingautism @aneeman For fear of being seen *accurately* as bigots. "I'm not ableist, but..."
  • Heaven forbid #InADifferentKey admit @aneeman is a skilled, informed policy wonk. Instead, his foes are too nice to fight w/#autistics? #FFS
  • #InADifferentKey's patronizing continues: “@autismspeaks gave [@aneeman] a pass to say what he wanted.” Like men “let” women have the vote?
  • #InADifferentKey is so worried about “high functioning” #autistic @aneeman representing #autism that it ignores his cross-disability agenda.
  • If #InADifferentKey actually paid attention to @autselfadvocacy work, it'd know @aneeman + team fight for #autistic people of ALL abilities.
  • #InADifferentKey assumes @aneeman knows nada of high support #autistic kids, yet is “mind blind” if doesn’t cow to IRL attack by curbie mom.
  • Asperger’s syndrome is not a “ticket onto the spectrum,” #InADifferentKey —Asperger himself recognized #autistic kids of all abilities.
  • Kanner’s defining the #autism label excluded Asperger-like folk who needed support, for decades: the tragedy #InADifferentKey ignores.
  • Correction: On p. 531, #InADifferentKey does mention @aneeman and Steven Kapp’s contributions to informing the #autism criteria in the DSM-5.
  • #InADifferentKey claims parental love is one element in the whole #autism “saga” that is “unquestionably pure.” Really? Ask Issy Stapleton.
  • Apparently #InADifferentKey authors have never heard of child abuse. Even as they document it.
  • Here’s hoping the story of Donald Triplett helps #InADifferentKey readers accept non-standard, #autistic developmental paths & milestones.
  • Donald Triplett led a good life due to family supports, $, & influence + community acceptance. Few #autistics are so lucky. #InADifferentKey
  • Correction, #InADifferentKey: iPad 2010 introduction made AAC more affordable & *accessible* to #autistic ppl w/communication support needs.
  • It’s not as though AAC didn’t exist before the iPad. My son uses a non-iPad device, as current iPad options insufficient. #inadifferentkey
  • The “Talking Typewriter” ERELS system was used to help #autistic kids communicate as early as 1965, for instance. Per #NeuroTribes.
  • If #InaDifferentKey's btwn eternal battle of autistics vs parents were true, I'd be at constant war w/myself... 
  • Finished #InADifferentKey. Verdict: This is not the #autism book you’re looking for. Not if you want to understand/support #autistic people.
  • 9.21.2018

    My Comments to the September 2018 IACC on Autism and Health Care Issues

    Next Thursday, September 27, 2018, the Interagency Autism Coordinating Committee will meet to discuss the health needs of autistic people. I submitted the public comment below, which will become part of the IACC official record (though without the links featured here). You never know what will help, so I hope some of these suggestions stick.

    ----

    First: My thanks to you, the members of the IACC, for your work on behalf of autistic people of all ages and abilities.

    I am writing to you as the parent of a seventeen-year-old high support autistic son, whom I love with all my heart. (There is no “but” after that statement.) I am also writing to you as an advocate deeply engaged with autistic people, their families, autism professionals, and autism researchers, in my role as editor of Thinking Person's Guide to Autism.

    I am certain the Committee is aware that autistic people as a community are badly served by the current state of health care and supports. Both formal research, and autistic people's own reports, clearly show that autistic health concerns—including mental health issues—are too often dismissed or misunderstood, and that autistic people are also more likely than the general population to have co-occurring health conditions.

    I have to believe that the Committee shares my opinion that it is unconscionable for our autistic community members to receive improper and insufficient health care. I have to believe that you recognize why the current approach is also financially irresponsible, as the proactive and appropriate health care autistic and disabled people currently aren't getting is demonstrably more cost-effective than the reactive or emergency care they tend to get instead.

    Based on both my personal and professional experience, I have some recommendations on how to improve health care matters for autistic people.

    If nothing else, I would like to see more autistic-informed health care policy. It is only through participatory autism research that we have become aware of matters like the crisis-level rates of suicide and suicidal ideation in autistic people, while studies of commonly self-reported but poorly studied and understood co-occurring conditions like hypermobility or Ehlers-Danlos syndrome are only now emerging. If we are going to properly support autistic people of all abilities to achieve best possible health outcomes, our health care initiatives need autistic guidance.

    Cheerfully tolerating a 24-hour EEG
    [image: Leo smiling despite having electrodes
    glued all over his head and covered with
    bandages, and attached to a tangle of wires.]
    I would like to see more of this autistic-informed policy integrated into autism education for medical professionals, for matters like accommodations during patient-professional interactions. We need more medical personnel to understand why autistic people—even those technically capable of holding a conversation—can have a debilitating fear of needles, may have difficulty with sensory-intensive procedures like MRIs or EEGs, may have trouble answering questions or self-reporting accurately due to processing, alexithymia, or interception issues, and may have meltdowns when overwhelmed. We must develop strategies for ensuring those autistic individuals are accommodated, so they can receive the care they deserve without being written off as "difficult."

    I would like to see more medical professional awareness about the sensory needs of autistic people both in general, and in medical environments. When my son was recently in the ER at Stanford University, he was given access to a lovely sensory “Imagination Station,” and in addition the flickering fluorescent lights in his room were turned off. Many autistic adults who heard about my son's experience reported that they too would like access to these kinds of sensory accommodations, but such options, even when available, are usually reserved for children.

    I would like to see more outreach to medical schools and other training programs about the need for more neurologists, behavioral psychiatrists, developmental pediatricians, and registered dietitians both in general, and who understand autism specifically. These scarcity of these specialists makes accessing health care even more difficult for autistic kids and adults.

    I would like to see investment in “health passports,” like those developed by the UK’s National Autistic Society, to improve autistic people’s hospital and medical experiences. I would like to see encouragement to adopt and support models like the autism and healthcare toolkits and resources developed by AASPIRE and UCSF’s Office of Developmental Primary Care, in delineating compassionate, respectful, and useful best practices for patients with developmental disabilities.

    I would like to see all autistic people, including those with intellectual disabilities, treated with more respect by medical professionals. Autistic people must to be able to trust the professionals taking care of them if they are to tolerate anxiety-provoking medical environments—yet too often autistic people are not even addressed during in-person conversations about their own health, or they are spoken in a manner more appropriate for speaking to A Very Good Dog (as happened to my son while getting his flu shot just this week). In worst-case scenarios, dismissive attitudes can lead to tragedy, as with the recent death of 18-year-old Oliver McGowan. These attitudes must change, because my son's life and those of his autistic community members are valuable, and should be treated that way.

    I would like to see more awareness in medical professionals (and documentation in research) about autistic people's increased likelihood of atypical or paradoxical reactions to medication. I have learned about this tendency from autistic community self-reports as well as specialists like Dr. Glenn Elliott at Children’s Health Council in Palo Alto, and have also observed it first-hand many times with my son—including an ER visit in which he was given a medication that was supposed to stop his grand mal seizure, but instead sent it into overdrive. Yet not one medical professional who has prescribed medications to my son has ever ever mentioned such reactions to me, not unless I bring the topic up—and even then, many were not aware that atypical or paradoxical medication reactions are "a thing" for autistic people.

    I would like to see more outreach from medical professionals to autistic individuals and families about the side effects and unpredictable outcomes of routinely prescribed FDA-approved antipsychotic medications like Risperdal, which can cause liver damage, diabetes, and unavoidable weight gain—and the lifestyle changes people can make to at least partially offset those effects.

    I would like to see outreach campaigns about the ongoing (and illegal) use of medications as chemical restraints for people with behavioral difficulties. I would instead like to see more medical professionals helping families to understand how health, sensory, processing, and communication difficulties may be underlying the “unmanageable” aggression, and that in many cases accommodations and health care, rather than (or in addition to) medications, are what is needed.

    I would really like to see more emphasis on why co-occurring health conditions like GI troubles or epilepsy are not caused by autism, and why treating those conditions is not the same as “treating” autism.

    I would like to see the IACC take a firmer stance on pseudoscience medical approaches to autism, as these approaches dupe autistic people and their families into pursing expensive, bogus "cures," diverting both funds and focus from legitimate approaches to optimal autistic health and wellness. The organization TACA (Talking About Curing Autism) is holding its annual conference in California next month, and is featuring autism “health” seminars on topics that have not only been debunked by mainstream science, but which encourage parents to subject their children to potentially dangerous treatments. Examples include “The Importance of Detoxification” and “The Relationship Between Heavy Metals, Parasites, and Symptoms in Your Child.” Yet somehow this conference is eligible for Regional Center (Medi-Cal) reimbursement. This is a waste or both private and public funds, especially for families or individuals with limited access to resources.

    Finally, I would like to see recognition that health care access gaps are even more pronounced for autistic kids and adults who aren't male, autistic people of low socioeconomic status, and autistic people of color, due to well-documented barriers including accessing formal diagnosis, and thus receiving proper care and accommodations. We need investment in easy-read and multilingual autism and health care information. Ideally, we also need investment in "community ambassadors" who can translate and/or advocate for people who may have multiple barriers to resources, and thus to effective self- or family advocacy.

    I need the Committee to understand that while this list may seem excessive, it is in actuality neither comprehensive nor sufficient; I am hoping other comments and discussants will address my oversights. However, tackling these issues would be a welcome start to helping more autistic people lead the happiest and healthiest lives possible.

    Thank you,

    Shannon Des Roches Rosa
    Redwood City, California