In search of truce in the autism wars

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Current research certainly shortchanges the most severely disabled autistic people. See the thread Autistic people +ID often excluded from studies.

But it's the genetic research that includes them.

They SHOULD be included OTHER kinds of autism research as well, e.g. in educational psychology research. I strongly suspect that many (though not all) "intellectually disabled" autistic people might turn out to be not so intellectually disabled after all, if only enough suitable teaching methodologies were to be discovered and confirmed. Ditto for nonverbal autistic people, some of whom are already able to communicate to at least some extent via AAC.

I just now watched the video embedded by Dvdz: Wendy Chung and Autism: Could Genetics Hold the Answers? (The Mind Science Foundation).

I agree that genetics research can be useful in terms of identifying specific subtypes of autism in terms of their underlying causes. This can be useful for the sake of greater repeatability of tests for any purpose whatsoever, including educational psychology.

What worries me, though, is:

1) The prospect of prenatal genetics-based testing. IMO there needs to be some kind of legal limit on the kinds of conditions that prenatal genetics-based testing can be used to detect, if it is to be allowed at all. Otherwise we have out-of-control fad-based de-centralized eugenics.

2) The prospect of human genetic engineering. See the separate thread CRISPR to "cure" autism.

3) The prospect of epigenetic medicine. The ability to manipulate a developing brain via epigenetic medicine raises all manner of thorny ethical questions, and not just for neurodiversity activists. In my opinion, IF epigenetic medicine is to be allowed to be developed for autism of any kind, it needs to be confined strictly to the most severely disabling types of autism, and there needs to be more widespread discussion of the ethical issues before that kind of research proceeds too much further.

So, in my opinion, genetics-based "molecular" cure research needs to be de-emphasized as a funding priority. Instead, in my opinion, much more money should go into educational psychology, for severely disabled autistic people as well as for the less disabled.

But this is generally the model/approach used in treating disorders is to understand the genetic basis of the disorder first before embarking on treatment approaches to address behavior etc...

1) I get why you would be worried about prenatal testing. Looking at Down Syndrome, a majority of mothers-to-be who find out about their unborn child's Down Syndrome choose to abort instead of continue the pregnancy. But is this a good reason to cut funding to genetic research? What if genetic research finds a cure/treatment? Maybe, when presented with a third option, majority of mothers-to-be would choose to cure instead of to abort.

2) At the end of the video, Wendy Chung talks about a gene therapy applied to Spinal Muscular Atrophy (SMA). The full scientific paper for that is here: https://www.nejm.org/doi/full/10.1056/NEJMoa1706198. Children with type 1 SMA usually die before 2 years of age. But thanks to this gene therapy, 15 / 15 of the children were still alive and well at 20 months of age, compared to a 8% survival rate previously.

Timothy Syndrome (TS) is a rare genetic condition that is linked with autism. Like type 1 SMA, it also has a very dire prognosis for children who have it. According to this study, https://www.cell.com/cell/fulltext/S0092-8674(04)00842-6, 10 out of 17 children with TS died around 2.5 years of age. 5 of the survivors were formally evaluated for autism. 4 of them had autism and the last had severe language delays. Gene therapy, aka genetic engineering, might be able to help these kids survive and thrive like it did with the SMA kids, but only if genetic research continues to be funded.

3) I have no idea what you mean by epigenetic medicine. What is the difference between that and Adderall? Adderall is what they are giving to kids with ADHD nowadays, at least in the US, and it's manipulating a developing brain as well. What is the ethical conundrum with giving a depressed kid an antidepressant?



How did you come to this strong suspicion?

SMA is a fatal, degenerative disease. I don't have an issue with gene therapy for that sort of thing.


Because this condition too is often fatal and intrinsically so, I think gene therapy is justified.

By the way, "gene therapy" is NOT the same thing as "genetic engineering." The latter involves changing the DNA itself, which can be done with a sperm or an egg, or possibly even a newly-fertilized zygote, but NOT with a person already born. "Gene therapy" usually means epigenetic medicine, which involves suppressing or enabling the action of particular genes in creating particular proteins.


See above.

Anyhow, I have no issue with epigenetic medicine to save a child's life or to prevent DEGENERATIVE conditions and/or extremely severe specific disabilities.

I do have an issue where the purpose is to change the functioning of a child's brain for the primary purpose of making the child more "normal."

Re: Down syndrome. I feel that any medications for Down syndrome should be targeted at specific issues that most people with Down syndrome themselves regard as their worst problems. Preventing or treating the most severe manifestations of Down syndrome would be much better, in my opinion, than medication aimed at suppressing Down syndrome itself in its entirety -- which would involve suppressing even the good qualities that are said to accompany Down syndrome in many cases.

If preventing only the most severe manifestations of Down Syndrome, without targeting Down syndrome as a whole, can be accomplished with epigenetic medicine, I would have no problem with that. However, if the aim is to make people perfectly normal, I have a big problem with that.

Ditto for autism. I have a big problem with efforts to eradicate autism altogether, as opposed to treating specific problems of autistic people.


I actually do have an ethical objection to Adderall and other ADHD drugs too -- I don't like the idea of giving highly addictive stimulants to children. It would be much better (for at least some neurotypical kids, as well as for ADHD kids) if we had an educational system that accommodated a variety of learning styles, rather than having a single one-size-fits-all "mainstream" curriculum for the vast majority of kids plus "special ed" for the outliers. For at least some (not all) neurotypical kids as well as for ADHD kids, it would be great if the educational establishment could come up with some means of combining lessons in reading, writing, and math with physical activity of some sort, and/or other means of holding an ADHD kid's attention. (To the latter end, the educational establishment might perhaps borrow a few ideas from smart phone manufacturers.)


This requires a detailed answer which I don't have time to write at the moment. I'll be back later.

No. Only recently, within the past decade or so, has such an approach to medicine become even remotely possible.

But that's what I mean't, it's the current approach

There is perhaps an overestimation of genetic factors on autism given that many identical twins one may not have autism at all which suggests the role of pre or post-natal environmental factors.

A Swedish study suggests that unknown environmental triggers switch certain epigenes in one twin whereas the same genes are never activated in the other twin.

I did a google search for "what is gene therapy" and "what is genetic engineering". The following two urls came up:
https://ghr.nlm.nih.gov/primer/therapy/genetherapy
https://www.yourgenome.org/facts/what-is-genetic-engineering

As far as I can tell, gene therapy is just genetic engineering used for therapeutic purposes. Where did you come by your definition of pre and post birth?




You say that gene therapy is justified in certain circumstances and yet you want to cut the funding anyway?
Where do you draw the line? Is gene therapy only justified for fatal conditions? What about conditions which are not immediately fatal but require a lifetime of care like 7q11.23 Duplication Syndrome? (https://www.ncbi.nlm.nih.gov/books/NBK327268/)




You want to divert funding from genetic research into educational psychology. From your other reply, that seems to include research into "learning styles".

I went to scholar.google.com and searched for recent papers on "learning styles". (https://scholar.google.com.sg/scholar?as_ylo=2015&q=learning+styles&hl=en&as_sdt=0,5)

The first two open access papers I found were:
https://justin.vashonsd.org/Resources/HOM/LearningStylesMyth-PaulKirschner.pdf
https://career.ucsf.edu/sites/career.ucsf.edu/files/Article%20UCSF%20SEJC%20January%202017.pdf

Both papers state that there is no evidence that teaching students according to their learning styles is more effective.

What do you mean by "educational psychology" and why do you think it is going to be more effective than genetic research?

Just about every article I've ever read so far about genetic medicine (for humans, at least) talked about epigenetics rather than changing the DNA itself. For example, see What is genomic medicine? An introduction to genetics in health care on the Aetna website. Note the section on epigenetics near the bottom, and note the absence of any mention of editing the genes themselves.

Until today, I was not aware that editing genes within an already-existing human body was even an option. But I just now did some more Google searching on this topic, and it turns out that you're correct that this IS a major research area right now -- although this is a VERY recent development. According to this page on the website of the Center for Genetics and Society:


In the past, everything I had ever read about "genetic engineering" pertained to what the above page calls "Germline genetic modification":


Germline genetic modification has already been done for decades in plants (GMOs).

Regarding human genetic engineering, some articles on some ethical issues I came across just now:

- What Is the World to Do About Gene-Editing? by Stephen Buranyi, New York Review of Books, March 21, 2019
- Moratorium on Germline Gains Momentum by Pete Shanks, BioPolitical Times, 05.09.2019
- Genetically modifying future children isn’t just wrong. It would harm all of us by Marcy Darnovsky, Guardian (U.K.), Tue 17 Jul 2018

More later. Gotta run now.

It's ONE of the current approaches but certainly not the ONLY current approach.

Or, at least, no evidence that current implementations of the concept of "learning styles" are effective. This paper says the following:


When I spoke of "styles," I actually had in mind relative abilities.

The same paper also says:


Recoding from music to math can indeed happen, though perhaps only for specific mathematical concepts, not all of math. In my own experience, my familiarity with the piano keyboard, together with what I had learned about the physics of soundwaves, helped me gain an intuitive understanding of (base 2) logarithms. (Admittedly, I'm good at math to begin with; I don't know how well my piano knowledge would have helped me understand logs if I were less good at math.)


"More effective" or not, it at least won't have the side-effect of drastically cutting down the number of mathematical geniuses or the number of highly original thinkers. A genetic "cure" for autism could indeed have that side-effect.

I've already discussed some of the other issues I have with the genetic "cure" idea, and I'll discuss more of my issues with it later. In my next post I'll give an example of why I think there's probably a lot of room for improvement in the education of autistic children.

Last edited by Mona Pereth on 02 Jun 2019, 3:12 am, edited 3 times in total.

It's kind of hard to evaluate someone's potential intelligence when they are not yet able to talk and not yet able to communicate in any other language-based way (sign language or AAC) either.

There have been quite a few autistic people who had extreme speech delays (e.g. Jim Sinclair, one of the founders of the neurodiversity movement, who did not talk until age 12) but who eventually turned out to be intelligent enough to graduate from college.

Others might seem like slow learners, even after learning to talk, but nevertheless turn out to be quite intelligent and quite talented in some way.

For example, my boyfriend learned to talk at age 4 (only with help from a speech therapist) and then didn't learn to read until age 11-12. But his father, a mathematician/economist, was able to teach him math and computer programming before he learned to read. His father was also the one who finally did teach him to read; special ed back then was pretty much worthless. His father was also able to give him an intuitive grasp of many advanced mathematical concepts.

Eventually he got a degree in computer science education. But without the help he got from his father, he probably would never have succeeded academically at all.

Hopefully special ed has gotten better since then, but I see no reason to believe that it has attained perfection, or that it has become anywhere near as good as it could conceivably be.

@Mona Pereth

Let me try to summarize your position.

You want to divert 49% of autism research funding (59% -> 10%), more than $100 million, from genetic research into educational psychology because:

1) You believe that a majority of severely autistic children are like your boyfriend and Jim Sinclair. They can be taught, if only some method were found.

2) You have ethical issues with germline genetic engineering.

3) You are worried that there will be less mathematical geniuses or original thinkers as a possible side effect of a genetic "cure".

4) Although you do not state this directly, I think your objections to genetic research stem from your belief that autism is an integral part of someone, like race or sex, aka neurodiversity.

Is this accurate?