1. I get your point about autism and ableism, and I am wondering if the real issue is the enormous changes in how autism has been defined since it was first discovered. Autism was originally a truly horrific, devastating condition for the patient and for the family. But once Asperger Syndrome was folded into Autism Spectrum Disorder, “autistic” could refer to people like my kids, who have some challenges, but also friends, careers, and happy independent lives. Of course it is insulting and ableist to treat my kids’ condition as something undesirable. But there are profoundly autistic people who will never be able to live independently, who might engage in self-harm unless supervised constantly, who never learn to speak, and whose lives (and their families’ lives too) appear to be a torment. I think it is valid and not ableist to characterize profound autism as something we would hope to avoid and/or cure.
2. As for Tylenol, I wonder whether the studies that found a link have gotten the causation backwards. There is a lot of evidence linking high fevers during pregnancy to autism. Maybe it was fevers, and not the Tylenol the moms took, that is causing the autism? (Incidentally, Scott Alexander made a similar point in his reviews of all the studies on ivermectin during Covid. There were scientifically-valid studies showing that ivermectin helped, but they all were conducted in countries where there were high rates of infection with parasites. Alexander’s hypothesis is that ivermectin treated the parasites, as it is meant to do, and so the patients were better able to fight off Covid. But the ivermectin did nothing for Covid in patients without parasites.)
3. I love the photo of you and the memories of such a happy time together!
Thank you for this cogent analysis, Mari! Your explanation is why I find the word "ableism" difficult--because you are correct that profound autism is disabling, no question, in the same way that being a quadriplegic is disabling. The point of the word, I realize, is to not see disabled people as less than human. Autism is on a spectrum and you're right that the most profound versions of it are challenging and in need of good treatments. More functional kids with autism (like yours) are in a different category, and when I wrote about this issue in my newsletter I didn't make that distinction.
I did not know this about ivermectin--fascinating. It's an interesting theory (there's that word again) about fevers during pregnancy and their connection with autism, as well as other health problems in children.
You're welcome! I like your "Amen"--as in, truth in talking about medical research, or any other research, matters, and we're not going to debate that value. Hugs!
Very good stuff today in your column, Theresa. You provide anyone who reads it the opportunity to take in the recent autism pronouncements from the White House with a healthy dose of skepticism based on solid science. Furthermore, your observations regarding the parents of autistic children and adults put a needed human face on this whole discussion; thank you.
You're welcome. I'm glad you found the column persuasive. Calm reasonableness is so important right now along with, as you say, healthy skepticism. We will get through this touch time, but it will be hard. Hugs!
Great article! A few thoughts:
1. I get your point about autism and ableism, and I am wondering if the real issue is the enormous changes in how autism has been defined since it was first discovered. Autism was originally a truly horrific, devastating condition for the patient and for the family. But once Asperger Syndrome was folded into Autism Spectrum Disorder, “autistic” could refer to people like my kids, who have some challenges, but also friends, careers, and happy independent lives. Of course it is insulting and ableist to treat my kids’ condition as something undesirable. But there are profoundly autistic people who will never be able to live independently, who might engage in self-harm unless supervised constantly, who never learn to speak, and whose lives (and their families’ lives too) appear to be a torment. I think it is valid and not ableist to characterize profound autism as something we would hope to avoid and/or cure.
2. As for Tylenol, I wonder whether the studies that found a link have gotten the causation backwards. There is a lot of evidence linking high fevers during pregnancy to autism. Maybe it was fevers, and not the Tylenol the moms took, that is causing the autism? (Incidentally, Scott Alexander made a similar point in his reviews of all the studies on ivermectin during Covid. There were scientifically-valid studies showing that ivermectin helped, but they all were conducted in countries where there were high rates of infection with parasites. Alexander’s hypothesis is that ivermectin treated the parasites, as it is meant to do, and so the patients were better able to fight off Covid. But the ivermectin did nothing for Covid in patients without parasites.)
3. I love the photo of you and the memories of such a happy time together!
Thank you for this cogent analysis, Mari! Your explanation is why I find the word "ableism" difficult--because you are correct that profound autism is disabling, no question, in the same way that being a quadriplegic is disabling. The point of the word, I realize, is to not see disabled people as less than human. Autism is on a spectrum and you're right that the most profound versions of it are challenging and in need of good treatments. More functional kids with autism (like yours) are in a different category, and when I wrote about this issue in my newsletter I didn't make that distinction.
I did not know this about ivermectin--fascinating. It's an interesting theory (there's that word again) about fevers during pregnancy and their connection with autism, as well as other health problems in children.
Hugs!
Amen on all counts. Thank you.
You're welcome! I like your "Amen"--as in, truth in talking about medical research, or any other research, matters, and we're not going to debate that value. Hugs!
Very good stuff today in your column, Theresa. You provide anyone who reads it the opportunity to take in the recent autism pronouncements from the White House with a healthy dose of skepticism based on solid science. Furthermore, your observations regarding the parents of autistic children and adults put a needed human face on this whole discussion; thank you.
You're welcome. I'm glad you found the column persuasive. Calm reasonableness is so important right now along with, as you say, healthy skepticism. We will get through this touch time, but it will be hard. Hugs!