Mother of autistic child criticizes NIH and medical journal article that liken efforts to prevent autism in children to eugenics
Is it really a form of eugenics to advise pregnant mothers to avoid taking hormones such as testosterone that may cause their babies to develop neurological disorders such as severe or profound autism?
We don’t think having a concern about the effect of testosterone on fetal development is in any way akin to eugenics. But that appears to be the position of the National Institutes of Health (NIH), which is considering removing a goal of reducing disability from its mission.
In an essay last month, Amy Lutz, vice president of the National Council on Severe Autism (NCSA), criticized both the NIH and an article in the research journal Social Science and Medicine – Qualitative Research in Health for promoting the eugenics charge.
We support the mission of Lutz’s organization, which advocates for increased services and research to benefit the often-neglected population of people with severe and profound autism.
The Social Science journal article concludes that health care providers who advise pregnant transgender people to stop taking testosterone are being improperly “fetal-focused” and “eugenicist.”
A key statement in the journal article is the following:
The desire to maximize the ‘fitness’ of offspring, and guard against development of conditions or human characteristics considered ‘unhealthy’ or less than ideal, may reflect troubling eugenicist and biomedical moralist underpinnings in ways that further harm already socially-marginalized people.
Lutz also noted that NIH recently announced that it was considering removing the goal of reducing disability from its mission statement. This was being done, Lutz said, at the recommendation of an NIH advisory committee that “blasted the idea that disabled people need to be ‘fixed,’ as ‘ableist.’”
We have written before about the Lutz’s organization’s efforts to expose and rebut a groundless but growing ideology that no matter how profound a person’s developmental disability might be, they have an unlimited potential for achievement in mainstream society, and that autism is not even a disability.
We have seen that this ideology results in a reduction in services for developmentally disabled people and a reduction in our society’s concern for the wellbeing of disabled children and adults, and for the wellbeing of their families.
Does that “make me a eugenicist?”
Lutz is the mother of a profoundly autistic son, Jonah, 25. She maintained that, “Not only would I cure him if it were possible, but if I could eradicate profound autism in future generations, I would without hesitation. Now, considering the tenor of these online debates, I was forced to consider: did that make me a eugenicist?”
The Social Science and Medicine article specifically criticizes advice given by many health care providers to transgender persons who are trying to conceive children to discontinue the use of the male hormone testosterone.
The journal article authors note that for many trans people, testosterone treatment results in improvement in their mental health, including reductions in depression and anxiety. At the same time, the authors concede that concerns have been raised that babies born to trans persons taking testosterone could develop “neuropsychiatric disorders” such as Autism Spectrum Disorder (ASD) and suffer other medical problems.
Concern about testosterone use during pregnancy is ‘fetal-focused’
The Science and Medicine journal authors appear to agree with some health care providers that there has been a lack of research to either rule in or rule out testosterone use by trans persons as a possible cause of fetal abnormalities. Nevertheless, the authors contend that those concerns, whether they are correct or not, are improperly “fetal-focused.”
The journal article goes on to state:
Ultimately, we argue that in the context of lacking and uncertain medical evidence (about testosterone use by pregnant trans persons)… both patients and providers tend to pursue precautionary, offspring-focused treatment approaches. These approaches reinscribe binarized notions of sex, resulting in social control in their attempts to safeguard against non-normative potential future outcomes for offspring. (My emphasis.)
These offspring-focused risk-avoidance strategies and approaches are, we argue, part of the gendered precautionary labor of pregnancy and pregnancy care itself, and not without potentially-harmful consequences for trans people and society more broadly.
Thus, the journal article authors appear to imply that the potential loss of personal wellbeing experienced by a pregnant trans person in having to stop taking testosterone is a more serious matter than the possibility that continuing to take the male hormone could medically or cognitively harm their fetus.
Lutz maintains that her son requires round-the-clock care. Without prompting, he would never brush his teeth, shower, put on a coat, or take the medicine that controls his seizures and minimizes his aggressive behavior, she wrote. That behavior required him to be hospitalized for almost a year when he was only nine years old.
“He (Jonah) has no safety awareness,” Lutz added. She and her husband have code locks on all the exterior doors to prevent Jonah from wandering—”a dangerous behavior exhibited by more than half of autistic children, and one of the leading causes of premature death in this population.”
Lutz said that as the vice president of the NCSA, she constantly hears from parents who have been forced to quit their jobs to care for children with profound autism, and about profoundly autistic adults “warehoused in emergency rooms…If NIH removes the goal of reducing disability from their mission statement, they will fail every single one of these families, and push an already marginalized population so far out of public discourse that they—and their intensive, lifelong needs—will become virtually invisible.”
Yet, according to the authors of the Social Science article, those concerns by those families are “imbued with normative” and “fetal-focused” judgments, and “reflect troubling eugenicist” views.
For Lutz, the argument that disability is neutral “may sound progressive and empowering, but it betrays complete ignorance of what severe intellectual and developmental disability looks like, or how it impacts affected individuals and their families.”
Disability advocates such as the authors of the Social Science article are trying to “aggressively shut down incongruent narratives with accusations of ‘eugenics’ and ‘ableism,’” Lutz maintains.
We would agree with Lutz. In our view, the Social Science authors and the NIH should realize that if they are truly concerned about the emotional wellbeing of transgender mothers, they should consider the impact on their lives of having to care for a child that grows into an adult with severe intellectual disability or autism.
COFAR blog 
Great post. I’ve been bewildered and insulted by this fake movement to supposedly empower people like my autistic son by policing language and voicing fake outrage at the idea that his life is limited by a disability. I’ve wondered where the Hell this is coming from, but your statement that these attitudes result in a reduction of services set a lightbulb off in my head. Ah. Ok. It’s just about the money. If these people want to see some real eugenics, they should take a look at Canada, where a 27 year old autistic woman in Calgary just got approval from the court to be euthanized through their Medical Assistance In Dying program.
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To be fair, it’s not entirely about the money.
Those who fear mandatory treatment have some cause.
However, I should think that we now have the ability as a society to evaluate legal competency from a more reasoned perspective. Certain protections, which might make sense for a person with autism without intellectual disability, make zero sense for an autistic person with moderate to severe intellectual disability.
In Maine, one of the biggest roadblocks we faced in our daughter’s residential treatment was this idea that treatment providers could not restrict a client’s access to food. Our daughter gained 65 pounds over 5 years. We enlisted a dietitian, had six months of meetings with the provider, Disability Rights Maine, and her residential provider, and finally got a reasonable plan in place. She was doing great and even down 30 pounds. But the provider couldn’t keep consistent staffing. She’s gained it all back.
Providers often use the strictest possible interpretation of Maine’s Rights of Mental Health Recipients and HCBS regs to sidestep providing therapies the client needs.
Clients who understand that their binge eating will eventually result in physical disability can be instructed in more reasonable choices to come to some sort of balance.
Another reg that trips us up is the reg that states clients have free and unfettered access to their personal property. Our daughter routinely rips her clothes to shreds. It’s one of her OCD behaviors that frequently becomes an expensive issue anytime she is under intense stress. We’ve spent thousands at Walmart replacing her wardrobe.
The provider’s initial interpretation of the regs was that:
We finally got them to lock her clothes in a trunk and let her make supervised choices in the morning of what to wear and what to bring to school. But staff changeover made this plan inconsistent, too.
And then there was the brief period when she BIT THROUGH AND BROKE 2 ipads in a week!
It’s these bits of utter insanity in the system that drive me cuckoo bird nuts. We, the family, are constantly fighting a system that seems hellbent on NOT providing therapy our severely disabled kids need to be independent.
“It’s her right to tear her clothing. It’s her clothing!”
Except is it? She will be dependent on either us or the State to keep her clothed her entire life. This is a cost society doesn’t have to bear if she actually gets therapy.
Also, she does not care where she does this. She has no concept of public nudity, modesty, or the dangers she faces as a young woman.
Of course, it should not be at all surprising that a disability care culture that thinks it’s a great idea to funnel recent male immigrants, from anti-feminist cultures who do not speak English well, into demanding DSP jobs involving the intimate personal care of young disabled women – and many of these women have severe expressive and receptive language deficits along with intellectual disability – would fail to recognize the pitfalls of public nudity for young female clients.
We are also pretty committed to changing the disability care culture that accepts it as inevitable that their clients will become morbidly obese and suffer from multiple medical ailments at a young age.
We think our daughter remaining in shape enough to reach and wipe her own behind is important. We think her continued mobility is important to her independence.
That we have to fight so hard for the recognition of these basic, obvious things is a sign that the current disability care culture is failing the profoundly disabled spectacularly.
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Your last paragraph says it all.
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Ditto to your last paragraph.
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With all respect to Ms. Lutz, I am not clear on how this particular issue plays out in the world, because the trans population is so small and so poorly documented. Trans-male individuals intentionally pregnant have to make decisions without solid evidence. So both sides sound right about medical advice — because either advice is as of now unsupported. It would be easier if risks could be calculated.
So it’s a skirmish that should not be attached to the larger culture wars? I think so, as Ms Lutz is not on the basis of this argument a eugenicist, or an opponent of LBGTQ+ rights. (maybe elsewhere?) Likewise, why does the journal want to go farther than supporting patients’ rights to reject unsubstantiated medical advice? Having a child with any degree of ASD is difficult, but there is little solid knowledge if what causes autism or autistic features, and not a ton about what to do about them. The long war for successful inclusion, and the efforts to preserve a continuum of care ought not to divide our souls. And still they do.
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The autism and trans gender issues are of little to no relationship. Those bigots at “Christian Post” are trying to connect the two issues of autism and transgender and it seems some comment poster here at the COFAR blog may be doing the same comparing.
To extreme “anti transgenders” out their. What is your opinion about Kleinfelter’s syndrome? Many with this uncommon genetic condition are biologically sterile “effeminate” males with an XXY chromosome. Some may have autism some may have mild intellectual disabilities.
Preventing “autism” is vague comcept and the preventing may be nearly impossible so why bother?! Just provide the services the person needs and wants regardless of the name of the disability such as: blindness, autism, deafness, orthopedic impairment and so on.
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