Let’s hope they don’t kick me off: these IACC public comments though…(2021)

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 So…I was recently appointed to the IACC, which is the federal advisory board that handles important autism-related matters at the national level. There were ~40-ish? people appointed in total, including 23 public members…and a full EIGHT of us public members are autistic! I am beyond grateful to have an opportunity to serve my community in this way, and I look forward to working with my colleagues throughout my term on the IACC to improve services, research, and outcome for autistic people of all ages.

The newly appointed committee met for the first time today, and we meet again tomorrow. Today was an AAC day for me as pretty much the entire day I had difficulty forming speech; perhaps tomorrow I might communicate by speaking if I’m in a different place. I’m a fairly regular part-time AAC user anyway; as long as I can remember there have always been a couple of days per week for which forming, uttering, and being able to maintain intelligible speech was an impossibility. And in a technological world, there’s lots of ways to communicate; speech is only one of many and not necessarily even the most optimal. So while frequently I do speak (heck, I’m a public speaker, lol), for me it’s normal, and at times even preferred, not to speak at times when there are other forms of communication available to me. Why communicate in only ONE way when you can choose from a variety of ways?

While typing this, in addition to remembering how I love endever* corbin’s phrase about being a “multimodal communicator” (as well as some of their other great collaborative work on communication), something (inspired by a Jay-Z song) that the awesome Maysoon Zayid said in a TED Talk also just popped in my head, “I’ve got 99 problems, y’all; CP is only one.” (Check Maysoon out for yourself on her website!!!) In that vein, if there are 99+ ways to communicate, why should society be so obsessed with only one (speaking)? IMO, as long as someone is capable of making themself/themselves understood, we shouldn’t police the manner in which they do so.

Anyway, in spite of all of that, one reason I kinda hope I’ll have the capacity for speech tomorrow is because part of the agenda is devoted to both oral and written public comments that have been submitted by others. And while it is not required (nor even realistic) for committee members to respond to every public comment, there is one that was submitted that I DID feel a strong need to reply to. I have no idea whether I’ll be able to “say” any of this tomorrow, but my writing is just as valid a form of my voice as any other form…and actually, given that I consider reading/writing to be my “primary” language, it’s probably a much more representative form at least in my case. You can consider this my rebuttal to that particular public comment.

So I copied and pasted the public comment that I am responding to, which was sent in by the president of the National Council on “Severe” Autism. My responses to her remarks are bolded. I’m putting it on my blog and therefore out into the world; hopefully the fact that I have a dissenting POV won’t jeopardize my position on this committee. Feel free to read (and/or share) the post if you’d like. The original public comment is in “regular” font; the portions I have added in response are in bolded text. TY!

“July 1, 2021

To the IACC members:

The National Council for Severe Autism (NCSA), an advocacy organization representing the interests of individuals and families affected by severe forms of autism and related disorders, thanks you for your service to the IACC in effectuating the congressional mandate to further federally funded autism-related research and programs, and ultimately improve prospects for prevention, treatment and services.”

I appreciate your thanks and would like you to please clarify for me the demographics of your leadership. Given the focus of your group, I am especially interested in learning which specific NCSA leaders are currently “individuals affected by severe forms of autism and related disorders” themselves as opposed to merely being a family member of such an individual? Of the six out of nine provided leader bios on your website, the amount of individuals who publicly self-identified as being an individual with cognitive disabilities, self-injurious behaviors, communication difficulties, etc. is exactly zero. 

May I safely presume that one or more of the three leaders whose bios are not provided (Maysoon Salah, Judith Ursitti, and Lee Elizabeth Wachtel, MD) are themselves individuals from this demographic? Because if they are not, then regardless of what you might call yourselves, in actuality you are “an advocacy organization representing the interests of families affected by what they deem as severe forms of autism and related disorders.” You can’t be representative of those whom you haven’t allowed at the table. It would be extremely inappropriate for me to form “an advocacy group representing the interests of Asian women” when I’m not an Asian woman and there are few if any Asian women involved. 

“Dramatically increasing numbers of U.S. children are diagnosed with — and disabled by — autism spectrum disorders. In the segment we represent, those children grow into adults incapable of caring for themselves and require continuous or near-continuous, lifelong services, supports, and supervision. 

Individuals in this category exhibit some or all of these features: Nonverbal/limited use of language; Intellectual impairment; Lack of abstract thought; Strikingly impaired adaptive skills; Aggression; Self-injury; Disruptive vocalizations; Property destruction; Elopement; Anxiety; Sensory processing dysfunction; Sleeplessness; Pica; Co-morbidities such as seizures, mental illness, and gastrointestinal distress.”

Autism is certainly a disability, and it manifests in different ways. It’s important to clarify here that, as I assume you are aware, each and every one of these traits you have listed can be found within the non-autistic population. My oldest son, for example, presents with several of these despite not being autistic, as do a number of individuals with various disabilities (including IDDs). As such, it seems that your remarks are intentionally misleading. However, it is true that these traits can and do exist among individuals who are autistic, and in many instances several may coexist in one person. 

“Given the immense and growing burden on individuals, families, schools, social services and medical care, the autism crisis warrants the strongest possible federal response.” 

Regardless of their challenges and/or need for support, people are not burdens, period, nor should they be referred to in a manner that implies that they are. However, the all-too common reality that far too many people, including but not limited to those who present with the aforementioned features and conditions, have needs that are poorly addressed and thus largely unmet, is a travesty and is certainly burdensome for those individuals as well as their loved ones. And that can be accurately described as a crisis.

“Parents are panicked about the future. Siblings are often terrified about having children of their own, and/or the burden of providing lifelong care for their very much loved but highly challenging brothers and sisters. Schools cannot recruit enough teachers and staff to keep up with growing demand. Adult programs and group homes refuse to take severe cases. Vastly more must be done to both understand the roots of this still-mysterious neurodevelopmental disorder and to prepare our country for the tsunami of young adults who will need care throughout their lifetimes, particularly as their caring and devoted parents age and pass away.”

Terms such as “tsunami” and “severe” are both imprecise and potentially stigmatizing. Meteorological allegories do not advance this conversation. Neither do terms such as “mild” and “severe” because people are not sauces. Additionally, what you declare to be a “burden” is more aptly described in other non-Western and less self-centered cultures, such as mine, as a responsibility.

“With that in mind, we ask the members of the IACC to understand the priorities of our community. While this list is not exhaustive it represents many of the issues our families consider most urgent.”

Kindly note that many of the public members of this committee, both autistic and non-autistic, have significant familiarity with the priorities, issues, needs, and strengths found within families with one or more members who present with the characteristics previously mentioned. We know this because such individuals are our children; we know this because such individuals are our siblings; we know this that because some of us were once very similar to these individuals ourselves.

We also know this because disabling conditions have existed long before the last few decades when autism became a buzzword and a number of us have loved ones for whom that list is merely a description of an ordinary Tuesday afternoon. Disability exists; it existed long before any of us were born and it will exist after we’re gone. Since the beginning of time disabled people (many of whom present with characteristics which are FAR more “severe” than any manifestation of autism you or any of your organization’s families have ever known a day in your lives) and their families have been finding ways to defy the odds and live their lives with dignity even while dealing with and acknowledging struggles and limitations. And even now, they continue to do so.

However, even those who do not have any personal knowledge of these matters should, and do, still very much care about them. It is something that impacts the lives of a significant amount of the autistic community, so we would be remiss not to care. There is no hierarchy in autism which declares that the needs of some people on the spectrum should be perceived as important and all others are unimportant. It is every member of this committee’s job to care about the people across the spectrum – all of them.

“In the course of committee deliberations, the amorphous word “autism” should never obscure the galactic differences among people given this diagnosis.” 

Wait…what? Autism is why we’re all here. That is the name (or, if you prefer to use the longer “official” name, “autism spectrum disorder)”- nothing “amorphous” about it. 

It obscures nothing to refer to autism by its name; that’s its name, and that is how it needs to be referenced. Autism. Without performative qualifiers such as “severe” and “real” and “mild.” It is a fallacy to state that the existence of the term “autism” implies homogeneity. It doesn’t.

“The construct of ‘autism’ — and it is just that, an artificial human invention contorted by political and historical forces — has thrown together into one bucket abnormal clinical presentations that often have nothing in common.” 

Many things are “constructs,” i.e. the name of this month; the name of any river; the name of your organization. Our entire lives contain “artificial human inventions contorted by political and historical forces.” You are the president – which is a role that was invented by humans – of a nonprofit organization (please note that nonprofit status is something that was also invented by humans); you are writing a public comment, which was invented by humans, to a committee that was invented by humans!

Moreover, when the lives that we humans live differ from one another (as they will), that’s perfectly normal. It isn’t “abnormal” if two things diverge from one another.

Something that has been “invented” by humans can still be real. Is a child conceived via in vitro fertilization less “real” than one whose parents conceived them the “old fashioned way” through sex? Would you call Mark a “real” baby but insist that Peter is a “test tube” baby? You would not…because you recognize that “baby” is not synonymous with “clone.” Should my obstetrician have refused to perform a c-section on me, leaving my daughter and I to die helplessly, because the “natural” or more “familiar” way to deliver a baby is through vaginal childbirth, so anything that deviates from that is suspect?

The same goes for autism; it is nonsensical as well as self-serving for you to inflate that anyone has indicated that every single person on the autism spectrum is the same; the very term itself explicitly includes the word “spectrum” to directly note that there is variation. The use of histrionic adjectives such as “galactic” and “amorphous” are also not helpful nor necessary here.

“A person in possession of intact cognitive abilities and/or adaptive functioning who suffers from social anxiety and sensory processing differences has no meaningful overlap with a person with severe intellectual impairment, little to no adaptive skills, and aggressive behaviors.” 

It is not only misleading, but it is categorically false to declare that “no meaningful overlap” exists between individuals who have noticeable and measurable differences in a variety of areas. Neurological data and a plethora of other research says otherwise, as do anecdotal accounts. Plus, this statement assumes a lot of things with nothing but opinion to back it up. In my home, there is a range of cognitive abilities from intellectual disability to individuals whose IQ is so high that they qualify for Mensa. I have found that having a particular IQ score doesn’t miraculously cause anyone’s incontinence nor aggression to disappear into thin air.

“The IACC should take care to make distinctions at every juncture where ‘autism’ is invoked in a general way.”

Noted. In that vein, the IACC might wish to consider taking care to make distinctions at every juncture where non-autistic individuals such as yourself make remarks, recommendations, or objections in a general or specific way given that according to your logic, you have no meaningful overlap and therefore your perspective is, at best, that of an external observer with only opinions and zero personal lived expertise in these areas and should be consider as such. Perhaps in IACC minutes we can insert an asterisk or an arrow, followed by a distinction.  I’ll model it for you. Something like this, maybe (see example below)? 

*Note: Interpret with caution; remark was made by an individual without autism expertise. 

“The IACC should take care to make distinctions at every juncture where ‘autism’ is invoked in a general way.”

(I needed to come back and address this^ sentence a bit more, so I pasted it again. )

The term “Homo sapiens” encompasses you, me, people in New Zealand, people in Iceland, people in Bolivia. All of whom are significantly different, as humans tend to be. Yet we don’t reject the term “human.”

The term “Black” is what is used for my racial group. Despite the fact that there are an innumerable amount of ethnic, cultural, language, physiological, and other differences, we’re still Black. No one would argue that simply because they are both “Black” that Josh, an African American Creole evangelical Christian from New Orleans who speaks English, is indistinguishable from Nana, a Fula Muslim from Edo State who speaks Fulani, Yoruba, and Arabic. No one would argue that since your name is Jill that you must be fully interchangeable with R&B singer Jill Scott or actress Jill Marie Jones.

“Zero tolerance for anti-parent prejudice.” 

^Note: Interpret with caution; remark was made by an individual without autism expertise. 

Thank you. As a person on this committee who is not only a parent myself but is also an individual from marginalized minority groups with regard to race, gender, sexuality, ethnicity, religion, family composition, and ability, I would hope that there would be zero tolerance for any prejudice on the IACC.

“It has been alarming to witness the re-emergence of parent-blaming in some sectors of the autism community.” 

^Note: Interpret with caution; remark was made by an individual without autism expertise.

There is a difference between blaming and accountability.

“Parents provide the lion’s share of support for both children and adults with autism and have been at the forefront of reforms aimed at improving the lives of those disabled by autism.” 

^Note: Interpret with caution; remark was made by an individual without autism expertise.

As an autistic parent myself of children who have multiple disabilities which include heart disease, immunological disorders, intellectual disability, and many other things (not only autism), I wholeheartedly agree that parents have been instrumental allies laboring with disabled activists in the disability rights movement.

“Parents also most reliably speak out on behalf of the best interests of their non- or minimally verbal children. We ask that the attitude of the IACC be one of zero tolerance for the disturbing trend of anti-parent prejudice.” 

^Note: Interpret with caution; remark was made by an individual without autism expertise. 

One of the best things about the IACC is that it contains individuals from various different groups, including providers, parents, autistic individuals, researchers, etc. Many of us occupy several of those roles. The perspectives of all of the groups represented here will be given respect and consideration.

“Honest language to communicate realities.” 

^Note: Interpret with caution; remark was made by an individual without autism expertise.

Your “honest” is my “offensive.” There are, and always have been, ways to communicate serious matters, including those related to health, comorbidities, behaviors, etc. clearly that do not dehumanize and belittle others nor disrespect their personhood or privacy. 

“It is crucial that discussions at the federal level retain the language the reflects our clinical and daily realities, such as the following examples we commonly hear from our families and practitioners: abnormal, maladaptive, catastrophic, chaos, low-functioning, suffering, devastating, panicked, hopeless, desperate, exhaustion, overwhelming, anguish, traumatic, bankrupting, financially crushing, suicidal, epidemic, tsunami. We stress this not to detract from the many positives found in every person disabled by autism, of course those also exist, but to ensure that the challenges of autism are never semantically erased.”

^Note: Interpret with caution; remark was made by an individual without autism expertise. 

If such language is ever permitted to be “retained” at the IACC, I will resign immediately. Let me tell you some examples that I have commonly hear from others in reference to myself and people like me; you tell me if you think such language needs to be retained:

Nigger, whore, cunt, bitch, akata, kafir, ho, slut, African bootie scratcher, dick sucker, jailbait, tig o’ bitty, crazy, psycho, from a $h1+hole country, illegal, primitive, tribal, uncivilized, native, bushwoman, ghetto, urban, less fortunate, welfare queen, criminal…

Should we embrace these terms too? You know, so that the challenges of living in a bigoted society are never semantically erased? Per your (faulty) logic, the answer is yes.

“As federal priorities are developed:

The ever-increasing prevalence of autism must be treated with the utmost gravity. Rates of autism that meet a strict definition of developmental disability have soared 40-fold in California over the past three decades. Rates of autism now exceed 7% in some school districts in New Jersey. There is overwhelming evidence for growing rates of disabling autism, and little evidence this has been caused by non-etiologic factors such as diagnostic shifts. We have both a pragmatic and moral duty to discover the factors driving this alarming, unprecedented surge in neurodevelopmental disorders among our youth and young adults. Clearly, vaccines and postnatal events are not responsible for the surge in autism, but many other factors warrant urgent attention so we can finally “bend the curve” of autism.”

^Note: Interpret with caution; remark was made by an individual without autism expertise.

Thanks for explicitly noting the truth, which is that vaccines and postnatal events do not “cause” autism.

“Maximizing the range of options available to our disabled children and adults. We need a broad range of educational, vocational and residential services to meet the very diverse needs and preferences of the autism population — and this includes specialized and disability-specific settings that are equipped to handle the intensive needs posed by severe autism. The post-21 services “cliff” is a gut-punching reality across our country. Lack of non-competitive employment options. Lack of day programs. Few or no housing options. No HUD vouchers. Little to no crisis care. A healthcare system and ERs utterly unprepared for this challenging population. Aging parents. Lack of direct support providers. Lack of agencies willing to take hard cases. All of this amounts to a nightmare for our individuals and families. Clearly, massive policy changes are needed across multiple domains to maximize options for this growing population.”

^Note: Interpret with caution; remark was made by an individual without autism expertise.

Other than the unnecessary use of the word “severe,” I think that in part, we are philosophically in agreement here. I wholeheartedly agree that these topics must be priorities. Although I do think that it’s extremely important that we carefully “vet” these options. For there are some very questionable and counterproductive “services” – including but not limited to day programs that provide minimal stimulation for the attendees, proposals for separatist neo-institutionalist residential “programs,” subminimum wage “income,” generic, cookie cutter “vocational support,” and the abhorrent electric skin shocks that are forced upon the mostly Black and brown disabled children and adults at the Judge Rotenberg Center, among others.

“A desperate need for treatments. Regrettably, the therapeutic toolbox we have today is largely the same as two decades ago. While a cure for autism is unlikely to ever arise,”

^Note: Interpret with caution; remark was made by an individual without autism expertise.

Oh, a cure has arisen: eugenics. If I die, the “autism” dies with me. No autistic people=no autism=cure. And between the school to prison pipeline, health inequities, institutional violence, and a host of other things, this country is doing a really good job of killing autistic people who look like me every day. So maybe y’all will get your wish after all?

“…owing to the early developmental nature of the disorder, IACC should push for research on potential therapeutics that can mitigate distressing symptoms such as aggression, self-injury, anxiety, insomnia, and therefore improve quality of life while decreasing the costs and intensities of support. The research may include medical treatments such as psychopharmaceuticals, cannabis products, TMS, and others, as well as non-medical approaches.”

^Note: Interpret with caution; remark was made by an individual without autism expertise.

I am tentatively in agreement that ethical tools for addressing many concerns and improving quality of life are very much needed, though I wish to note the importance of proceeding with caution in this area because there have been a number of harmful biomed and related “treatments” that people’s well-meaning parents purchased from charlatans posing as “experts” in dealing with autism and subsequently experimented on their autistic children with disastrous results.

Some of these “treatments” included commercial grade bleach tonics and enemas; problematic polypharmacy and off-label medication usage; deprivation diets; chemical castration; harmful “detoxing” attempts; “chelation” treatments; invasive and unnecessary scopes and other medical “procedures” that were not warranted; poisoning us in hyperbaric chambers…and more.

The vast majority of these “treatments” were/are little more than torture for our people – and you know who purchased and administered them? Yup…the non-autistic parents did. I realize that the parents were not intentionally harming their children. They had been lied to and manipulated by con artists who were happy to make a quick buck on the backs of the parents’ desperation to “do something” about autism. But that doesn’t erase the harm that was caused to those children at the hands of their parents, even if said parents were misled. Plus, what has happened before can happen again, hence the need for caution here.

“We appreciate this committee’s commitment to autism prevention, treatment and services, and for your consideration of our community’s priorities.”

^Note: Interpret with caution; remark was made by an individual without autism expertise.

I can’t speak on behalf of the other members of this committee, but I can speak for Mx. Morénike Giwa Onaiwu all day long, and as such, your appreciation is poorly placed at least in my case with regard to my “commitment” because I am SO not here for or about “autism prevention.” Treatment and services? Hell yes. Ushering in a world where my mother doesn’t exist, where my children don’t exist, where my niece doesn’t exist, where my nephew doesn’t exist? Um…nope. To go echolalic on you, “Hell to the naw.” (That’s a quote from Whitney Houston, by the way.) Let me type it in all caps for the people with the reading glasses: I AM NOT HERE TO SUPPORT THE PREVENTION OF MY PEOPLE IN ANY WAY, SHAPE, OR FORM – PERIOD. I’ve seen what y’all have accomplished once you are able to “detect” things prenatally. I know exactly who and what type of people would be slated for “termination” in utero once all signs seem to point to the likelihood that the developing child has the “wrong” neurology. I don’t condone it; I don’t support it; I openly oppose it and will continue to do so – period.

I’m a mom. I have a disabled family. I’ve spent countless days in emergency rooms and urgent care centers and I have done the whole ISFP/IEP/VR dance. I know what it’s like to see a loved one in pain and not know how to take that pain away; I know what it’s like to have locks and alarms and barricades to prevent elopement or injury; I know what it’s like to need to assist with personal care and hygiene needs long past early childhood. I know what it’s like to cry in frustration when leaving the doctor’s office because they had no helpful answers for you; I know what it’s like to be kicked out of movies, restaurants, plays, day camps, etc. because they won’t welcome your child; I know what it’s like to frequent the offices of your child’s various providers and therapists several times per week; I know what it’s like to have to purchase all those things that insurance won’t cover that your child desperately needs; I know what it’s like to be unable to work outside the home because of needing to attend to your loved one’s circumstances.

I empathize with families who are having challenges, and I know that though there are some questionable parents out there, I believe the majority of parents DO love their children fiercely and DO want a better life for them. We shouldn’t be at war here. You want a better life for ALL autistic people, inclusive of autistic people with very high support needs; I do too. I think we differ sharply about what “a better life” can look like and what it entails, because IMO a life doesn’t have to resemble a non-autistic life to be a d@mn good life. I don’t think disparaging your children and violating their privacy is bringing them nor you any joy. I’d rather we find a way to work together in a productive way – for your children AND for mine. I hope you’ll consider it. Thank you, MGO

    “Very truly yours,

   Jill Escher, President”

^Note: Interpret w/caution; this entire public comment was made by an individual without autism expertise. 

Recommended citation: Giwa Onaiwu, Morénike. (2021). Let’s hope they don’t kick me off: these IACC public comments though… Just Being Me...Who Needs "Normalcy," Anyway? [Personal essay.]