Science Plus Bigotry Plays On Parents’ Fears Over Disability

Science Plus Bigotry Plays On Parents’ Fears Over Disability

Science Plus Bigotry Plays On Parents’ Fears Over Disability

Here we have a two-for-one deal in morality and science today. On one hand, you have a company that just got a patent for genetic testing for autism. On the other hand, you have a father/writer who has a disabled child, but says killing him in the womb is a-okay. Anyone else’s head hurt yet?

LabCorp, which bills itself on
its website as “The World’s Leading Health Care Diagnostics Company,” and is headquartered in Burlington, NC, has just been granted a patent on a specific type of genetic testing they have developed, which claims to be able to identify certain genes – in either child or fetus, they claim – that could responsible for the development of autism spectrum disorder.

The method, invented by David Michael Margulies and Mark Firman Bear of Massachusetts, involves taking a tissue or body sample from a subject and then conducting a test to identify variant sequences in the subject’s genetic code, which may signify “the presence or an increased risk of developing autism spectrum disorders.” Testing can be done on children and fetuses, according to the patent.

The method is stated to aid in the diagnosis of five autism spectrum disorders, all of which fall under the umbrella of pervasive developmental disorders: autistic disorder, Asperger’s disorder, childhood disintegrative disorder, Rett’s disorder, and nonspecific pervasive developmental disorders.

The method claims to have multiple applications, each of which provides insight into the biological basis of autism spectrum disorders through different lenses.

Can we all be honest, and acknowledge that when they say “fetal genetic testing,” we all know what the likely outcome will be the second a nervous parent is given the results of a genetic test that says “your child has an increased risk of developing autism”? Are we looking to “eliminate” autism the same way that Iceland has “eliminated” Down Syndrome?

And speaking of Down Syndrome, there is a horrendous opinion piece in The Nation by David M. Perry, father of a child with Down Syndrome, who offers up the worst moral justification for killing children like his, while still claiming that his son has “intrinsic value”:

In response to these threats to reproductive freedom, I’ve had to start saying something new and difficult: If individuals want to terminate an otherwise wanted pregnancy due to a prenatal diagnosis, I support their decision.

I’ve spent many years now asserting the need to reorder how we ascribe value to diverse human lives. My son might not participate in the capitalist economy, live independently, or speak (he might also do all of these things!), but his value as a human is intrinsic. I’d like others to see it that way too. Selective abortion, as I’ve written for The Nation, reveals our attitudes about disability and other forms of difference. Still, it’s time to affirmatively support the right (emphasis in the original) to eugenic abortion, even as we fight the need for it. The struggle for disability rights begins with the affirmation that no one gets to tell anyone else what to do with their body. That includes abortion.

The “threats to reproductive freedom” that Perry is referring to are eeeeeeeevil Republicans who champion disabled people, and Ohio’s new law banning selective abortion for Down Syndrome.

I’m still trying to untie the moral pretzel that he’s trying to pass off as a pro-eugenics argument as anything other than the Lena Dunham argument of “believe all women, but not the one accusing my friend.” Is his argument really going to be “abortion as a means of reducing the Down Syndrome population is a good thing, but not my son because he’s mine and I’m totally woke and stuff”?

Our sense of right and wrong is so warped in this world right now, that if the next school shooting took place in a classroom full of children with disabilities, there would be people who would immediately go to Twitter for the “hot take” that hey, they were “only disabled kids, what kind of quality of life do they really have anyway?” Somehow, this bigotry against the disabled is allowed to flourish, because “all animals are equal, but some animals are more equal than others.”

So, let’s apply this to real life, shall we? First of all, I have two sons on the autism spectrum. I will not sugar-coat it: this is not the direction I thought my career as a mother would go, and there are days when it’s really, really difficult. There are also days when it’s really, really rewarding. And I also really, really know my life would be lacking without these two boys (and my oldest daughter and ADHD son; I told you I lead an interesting life).

But no parent gets a diagnosis like autism and gets excited about it. Popular culture either says you get a genius-level savant ala “Rain Man,” or you get a non-verbal, potentially aggressive, completely unattached and emotionally “blank” child. When you tell a person you’ve just met that your child is on the autism spectrum, you usually hear one of two things: “I’m sorry” (why are you apologizing? Did you do something to cause this that I don’t know about?) or “Have you read Temple Grandin‘s book/seen the movie/heard her speak?” (Temple Grandin has a wonderful life story, thanks. I’m still trying to potty train an almost-five-year-old here. Does Temple Grandin do potty training consults?)

My older son (now 12) was diagnosed with autism, complete with severe speech delay, shortly before his 5th birthday. Thanks to his diagnosis, we have taken part in multiple research studies on autism, one in particular that looked at brain development (via MRI) in younger siblings. As a result of that study, our youngest (now almost five) was flagged at 12 months old for signs of autism – a diagnosis that was confirmed at age two.

If it had been offered, would I have done genetic testing? Well, we actually did. In the summer of 2012, we paid through the nose (literally, because insurance did not cover this) to have our older son genetically tested for Fragile X (a known genetic cause of autism-like symptoms) and a SNP array test. While we were waiting for the results of those tests, I took a pregnancy test. We had been discussing having another child. To our surprise, I was already pregnant. And we didn’t have the test results back yet.

A recent study about the aftereffects of abortion should be a powerful wake-up call for us all. These statistics are horrifying.

Even if a mother wants to keep her child, even in the face of a life-changing disability diagnosis, how many times do you think they are pressured to abort to keep a partner, or to shut their family up, or because they are told it is the only option and they will never have a fulfilling life with a disabled child?

In our case, the genetic testing came back negative. My son does not have Fragile X (which means I am not a carrier). Nothing abnormal was found on the SNP array (I often wonder how many advancements have been made on that test in the five and a half years since he took it). I gave birth to a beautiful baby boy with the most amazing eyes in March 2013. He has autism. He struggles with speech. He can’t tell you his name or his age. He screams when he can’t make himself be understood. He has no sense of safety and must be watched at all times. He loves to be cuddled. He begs for tickles. He is a chocoholic. He gives kisses to those he loves. He sings Christmas carols quite loudly and mostly on-key, even if he can’t pronounce all the words. Whenever he sees a lit candle, he sings “Happy Birthday” because isn’t that WHY we light candles?

Yes, life with him (and his older brother, who after 7+ years of therapy, talks a blue streak, but is currently undergoing puberty, which is a whole different post) is a challenge. Life with ANY kid is a challenge. Some just get more challenges than others. I have no idea where anyone got the idea that parenthood was supposed to be easy.

Do I wish my life/experiences on anyone else? No, and that is why I am so involved in autism research, and offer up my sons in training sessions for school teachers and therapists to practice therapy skills on in seminar sessions (run by the autism center where my sons are clients). I want other ASD parents to have an easier time than I had. But as each person is an individual, each experience will be different – the way that David M. Perry’s Down Syndrome child is different from any other Down Syndrome child. Who is he to say that HIS son has “intrinsic value,” and yet pass judgment that another individual with Down Syndrome doesn’t? Who gave him that moral authority? Intrinsic value doesn’t exist because we decide who is more equal. It exists because LIFE ITSELF has intrinsic value. Just ask anyone who has had to bury a loved one recently. There is NOTHING more valuable than life.

Science should be used as a tool, not a blunt instrument to bludgeon and shame parents into killing what popular culture deems “imperfect.” Life is not perfect, or fair, or easy. And yet it is the one thing that we all yearn for. We ALL want to live. Don’t let anything – not this genetic test, not the twisted moral preening of one writer, not the bigotry of Iceland – convince you otherwise.

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  • Jim says:

    “On the other hand, you have a father/writer who has a disabled child, but says killing him in the womb is a-okay.”

    Hitler would be pleased! Eugenics by any other name is still eugenics. Next there will be people demanding mandatory sterilisation – again!

    As an educator over 50 years [40 years in special education as a behaviour specialist] I consider the greatest determinant of success in raising children to meet their [social] potential is the effort put in during the first 7-10 years by parents and then teachers, regardless of whether a child has an intrinsic developmental impairment or not.

    I and my brother are both very high IQ and very high functioning autistics. [There is a difference between high IQ and sensible adaptive behaviour in society: I know many very smart autistics whose behaviour is very poor in relation to other people simply because they were never taught what Temple Grandin calls ‘Manners lessons’.] We can identify the inheritance of autistic traits in our family down the male line from our paternal grandfather who was a surveyor. Fortunately, growing up in the conservative 1950s – ’60s Manners were not left to chance, hence we are entirely functional in society, though we are both extremely autistic in terms of traits. Of course no one knew we were autistic back then so we were just taught to behave correctly. I suspect I was much like Temple Grandin in terms of temper tantrums, but strict parenting [ex-military officer Father who had obvious Autistic Traits, especially being a perfectionist] meant that we just had to learn and practise Manners and thus fit into society and have a functional life.

    I cannot agree with the notion of in-utero genetic screening leading to automatic termination as there is no way to know how that foetus will turn out if given a reasonable upbringing. I have worked professionally with over 2000 autistic people: I have many past clients with IQs measured in the low 40s who received the necessary lessons in Manners from early days and who are living with their families in complete harmony. On the other hand I have had autistic clients of great intelligence – 130+ IQs – who are just nasty people because they were never taught how to fit in to society, often by parents who did not really care. They exist and behave like over-grown and demanding toddlers.

    There is nature and then there is nurture; effective nurture is more important as far as I am concerned.

  • GWB says:

    childhood disintegrative disorder
    That sounds like a euphemism for abortion, doesn’t it?

    no one gets to tell anyone else what to do with their body
    It’s not your body you’re killing. *smdh*

  • GWB says:

    Keep up the work, Deanna! Even “regular” kids can be tough. View the non-communicative bit as simply training for adolescence. 😉

    We had a family friend who became unexpectedly pregnant late in life. She was absolutely beside herself that her child would have Downs. (This woman is a brilliant engineer, btw.) She was thinking about abortion, and discussed it with us. We told her we would take the baby, no matter what. Our determination helped her get through the bit of panic, and she committed to seeing it through. He is a fantastic, normal boy.
    But, the “family planners” operate on that panic, that fear. They are like vultures swooping down, waiting on the critter to gasp his last so they can feed.

  • Jim says:

    A further thought:

    “… a company that just got a patent for genetic testing for autism.”

    Initially there was ‘infantile autism’ and one was ‘born’ autistic – such as I and my brother and other family members. Over many decades many autistics were also wrongly assessed as schizophrenic; I have met many older autistics who were wrongly labelled as schizophrenic. Indeed it was only in the early 1980s that ‘childhood schizophrenia’ as an alternate label was discarded and the English researcher Lorna Wing brought the writings in German of Hans Asperger [Austrian, 1940s] to the attention of the English-speaking communities, hence ‘Asperger’s Syndrome’.

    I began working in disability with children born blind or partially sighted. In the mid-1970s research indicated that children born totally blind ‘became’ autistic at a rate of 20%. In 1980 I had a student in a Chicago special school who was born neurologically ‘intact’ but was neglected and, living in slum housing on the South Side in infancy, ingested lead-based paint – in large amounts. I taught him when he was a teenager; he was classically autistic, but due to adventitious cause. in 1992 I worked intensively with a young man who was also classically autistic and had been diagnosed as such in the late 1980s by a psychiatrist. He suffered an acquired brain injury at birth due to the umbilical cord being wrapped around his neck; he was deprived of oxygen. When the Rumanian dictatorship collapsed it was found that there were many neglected children in orphanages displaying autistic traits or who were, to all intents and purposes, autistic, due to total deprivation, not for genetic reasons.

    Thus there are many ‘pathways’ to becoming autistic, but in all cases it is the quality of care/management given those children that decides whether they will become functional members of society. I am offended at the notion of screening in utero as it is likely that foetuses [infants-to-be] such as my brother and I would have been found to be positive and possibly ‘terminated’. Autism is not a disease; we don’t need to be ‘cured’ and we are not happy about the notion of eugenics being practised on us just because we are different. We just think differently and need instruction and strict training about how to communicate and relate to sentimental neurotypicals. Being autistic is just as meaningful to autistics as is being neurotypical to the majority population. However it is becoming harder for autistics to function in the brave new world of the sentimental left who decry rules and structure and extol gross emotionalism. We need clear rules and love structure, and lacking an innate capacity for empathising, have difficulty coping with the subtleties of neurotypical relating.

  • Michael says:

    Anybody here watched/read, “The Man in The High Castle?” The main Nazi character is very much like the “father” cited here, and his story in the book is enlightening and instructive. What this leads to is true Evil, and the destruction of the moral foundations of humanity as a whole – no matter what your beliefs/religion are. This is more than a little frightening and our future is won or lost in this, not in petty politics regarding taxes, employment, and infrastructure. (Easiest, quickest access to “… High Castle” is via Amazon – please watch if you haven’t.)

  • […] Fisher, a mother with two autistic sons, wrote, “Can we all be honest, and acknowledge that when they say ‘fetal genetic […]

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