December 6, 2023 - 3:45pm
According to a paper recently published in the science journal Nature, Chinese researchers have successfully used gene editing on mice with a mutation associated with autism. These mice displaced repetitive actions and unusual social traits, but the gene editing changed their behaviour, suggesting that these kinds of behavioural abnormalities can be reversed.
If this could be successfully applied to humans, it would have massive implications for the understanding and treatment of autism — but would cause a huge conflict among autistic advocates, parents, and medical practitioners.
We can see this already with cochlear implants to treat deafness: some deaf people resent the implication that it is a deficiency to be cured, rather than an identity to be celebrated and respected. The comments below reaction videos of deaf kids having cochlear implants switched on are often full of angry remarks about how deaf people do not need to be “fixed”. Some deaf activists have even described cochlear implants as “child abuse” and argued that they are “genocidal” (in the sense that they would “wipe out” deafness).
If it were possible to “reverse” or mitigate the symptoms of autism, it’s fair to say this would cause a debate as incendiary as that over cochlear implants — if not even more rancorous.
The Scottish Green Party recently voted to ban any treatment aimed at modifying the behaviour of people with disabilities — comparing it to conversion therapy for gay and transgender people. And as one autism activist wrote today, “Any time you write an article about ‘treating’ autism, you are failing the autistic children and adults who need supports, understanding, acceptance, and services that they are not getting because all funding is going into those f***ing ‘treatments’. Do better.”
One important difference between this issue and treatments for deafness is that cochlear implants are not suitable for all deaf people, can take months or years to adapt to, and do not restore or replicate “normal” hearing. Hence there are lots of solid medical reasons why some deaf people should not and do not use them.
However, if, hypothetically, it were possible to “cure” autism, then it is hard to think of reasons why severely autistic adults and children would not benefit from this.
The 2021 Lancet Commission defined “profound autism” as typified by intellectual disability (such as an IQ below 50), very limited language skills (such as lacking the ability to communicate to a stranger using comprehensible sentences) and the need for round-the-clock supervision. It is estimated that this describes the reality of around 27% of people with autistic spectrum disorder.
For those with milder forms of the condition, such a “cure” might offer negligible benefits but devastate their broader political-cultural identity. It would also exacerbate the divide between the parents of people with severe autism and individuals who have milder forms, with the former often angry that the latter claim the same condition as their profoundly disabled kids. For their part, many activists with milder autism resent the implication that they are “not really autistic” and have pushed back against the Lancet’s “profound autism” definition.
Executive Director of the Autistic Self Advocacy Network Julia Bascom told the Washington Post of concerns “about the human and legal rights of the people who would be so labelled”, and that devoting funds to “profound autism […] would result in research aiming to ‘prevent’ or ‘cure’ autism.”
A middle way might be to talk about amelioration or mitigation rather than curing or reversing. The author Steve Silberman is a critic of formal distinctions between profound and milder forms of autism, but notes that children labelled “profoundly autistic” would be deemed to have “mild” autism if that had “better support and accommodations”.
This suggests that if gene editing were presented as a means to improve symptoms and behaviour without “curing” autism, it could offer help to the most severely affected in a way acceptable to autism activists. But if the diagnosis and treatment of autism becomes another way to distinguish between different political and cultural tribes, as we’ve already seen with Covid and vaccines, then autistic people themselves will be the ones to suffer most.
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SubscribeAs someone who moves in the world of the profoundly autistic, the neurodivergent crowd make my blood boil. How DARE YOU speak for the kids and adults who will spend their entire lives dependent on someone to take them bathroom, who cannot brush their own teeth, bathe themselves and are often reliant on heavy medications to stop them from beating their own brains out. How DARE YOU use your keyboard warrior nonsense games to try to threaten scientists who are trying to help people who were never born with the advantages that you have.
Grow up.
Presumably the social justice warrior is against the heavy medications they are reliant as it deprives them of their neuro-divergent identity that we should be celebrating.
Actually, often they aren’t. They often are very against behavioral therapy though. Now, they aren’t *entirely* barking up the wrong tree here. But, ABA therapy (the main issue in terms of therapy) can be very beneficial for some/many cases.
It’s the definitional change that’s relevant.
Neurodivergent? What does that even mean. Its a squishy political-medical classification. It’s the Left attaching a political identity to a medical diagnosis.
Neurodivergent is a self-diagnosed made up identity. But there is such a thing as ‘mild’ or high functioning or level I autism. Autism in the current DSM is broken down into three levels and the diagnosis is based upon observed behaviors: observed by the diagnostician and reported by parents and other authorities such as teachers. There is no test that can rule it in or out, it is a behavioral diagnosis.
There used to be a separate diagnosis of Asperger’s Disorder. If your child had language before the age of three, they might fall into this category.
If you are given a diagnosis of autism you are then usually told (or your parents are told) where on the spectrum you lie. The level indicators do not suggest one person is more autistic or not than the other, but it tells you how much support that person is currently in need of, and this can change over time. You can ‘present’ as being very much in need of support as younger child, but make great strides, and vice versa. This movement usually stabilizes as the child gets older.
The neurodivergent crowd are a group that has grown out of a group of high functioning people (and I would note that many of these people are self diagnosed as self diagnosis is a thing in the US) who are autistic or who have ADD/ADHD or both. They are pretty much quintessential wokists. They are victims, and they revel in this. They know because they are. There often seems to be an overlap these days (which wasn’t always there) with gender fluid identities. They worked hard to change the symbols associated with autism awareness and fundraising, bye bye puzzle pieces and light it up blue – these are associated with ‘cures’ which are LITERALLY GENOCIDE. They would flood Facebook etc with the hashtag #ActuallyAutistic, have incessant fights about the language used to describe people with autism, first Autistic was bad. Then ‘low functioning’ and ‘high functioning’ was bad. ‘Low’ implying lesser and ‘high’ implying a lack of disability. People first language. Then it was ‘I am autistic’ is fine, because autism is the person’s identity and thus parents who want to ‘cure’ autism hate their children, because if they weren’t autistic they would be a completely different person. They would join support groups for parents online and bash the parents who asked for help finding therapies or just looking to vent with similar parents about the difficulties they faced with children’s behaviors. You hate your child. People like us have faced genocide. People want to kill us. And so on. Their hatred for parents of children with autism seems only to be matched by their hatred of higher functioning autistics who don’t toe the line when it comes to therapies or cures, ‘you are self hating!’. Pretty much a distillation of wokist theories and activities. Interestingly a lot of #ActuallyAutistic lot seem to be boosted by mothers who are white, liberal, progressives. How odd!
All these people want to do is build up their social/moral currency because it justifies smug absolutism. Once they establish the oppressed identity they believe they can do no wrong and it’s just a cascade of dialectical absurdity from there. I think they’ve actually eclipsed anything in Orwell’s novels. Andrew Doyle’s character jokingly says they actually read Orwell as a Self-Help Manual.
This entire conversation is a prime example of SJW mystification that looks something like Liberation Theology’s Preferential Option for the Poor which basically embraces Poverty as synonymous with Holiness. In this situation, an individual doesn’t need to try to remediate their Poverty but leans into it.
Only a Leftist needs a “political-cultural identity.” The Left’s entire Inclusivity Model is based on Social Disability. It’s an attempt to create a Plurality of People with Oppressed Identities entitled to redistributive Equity. This Oppressed group is then supposed to serve as their Solidarity Alliance. So of course they don’t want to give severely disabled people the option to treat their condition because if treated, those people are no longer useful to the Left’s political agenda
Well said. The left loves disease, as it loves all forms of misfortune, deformity and inadequacy – for it is nothing more than the expression of whinging resentment; and without the multitudinous cavalry of apocalypse, where on earth would such killjoy resentment be? Stewing in its own unbidden bile, that’s where. So autism might be cured? No, no – we don’t want that; it’s “neuro-diverse”. Neuro-diverse! Think about that word: resentment now specialises in euphemisms which dress up nothingness and incapacity as alternative avenues of “experience”… The open emblem of such spiteful perversity can be found in art, now so badly hollowed out and void of quality that unmade beds and tins of faeces can vie with Velazquez and Raphael for our attention. Future historians – who most probably will come from cultures other than our own – will at least be able to point to the nonsense of “woke” as the final, logical expression of Marxist stupidity. Sadly, we have to live with it – and attempt to survive it…
Spot on. As I go further down the Marxist Vortex it’s pretty clear that Post-colonial theory and all these outgrowths are all completely predictable outcomes of a vapid philosophy.
Its lipstick on a pig. Beautifully crafted Romantic writing that never finishes a thought but sounds profound. Its something like; by stripping all luxury out of life, everyone will be guaranteed abundant comfort, security and necessities thereby creating equality. Then once equality is established everyone will cooperate, forgo selfish desires and absorb themselves into the oneness of humanity.
Almost sounds rational and aspirational…until you realize they get to reimagine the definition of luxury, abundance, security, necessity and equality. And what do you know, the new definitions are the exact opposite of the original.
Did anyone notice that a lot of young people with autism decide to opt for a medical treatment that includes surgery, sterility, lifelong hormone therapy etc., to wit ‘gender transition’. If that is OK, what is wrong with gene therapy?
Would gene therapy to change sex chromosomes be outlawed by the SNP?
The sort of idiocy that only the 21st century could deliver;
“some deaf people resent the implication that it is a deficiency to be cured, rather than an identity to be celebrated and respected.”
This is actually fundamental to understanding how progressive activists see the world. They take a concept that everybody agrees with; that disabled people should get public accommodations and then pair it with the notion that the accommodations aren’t needed because of a disability but a “difference.”
This seemingly trivial and subtle distinction allows the Left to reclassify people into a wider political group instead of just treating people like individuals in need of medical care.
Has “do better” ever been uttered unironically by someone who’s not an imbecile.
If you oppose the treatment, I suppose you could always opt out. Kind of a crappy option for the child you are caring for.
Yeah, the mildly autistic crowd can say ‘no thanks’. The kid with severe/profound autism who can’t communicate when they are ill, who become so overwhelmed in social situations that they become physically aggressive to themselves and those around them, who are dependent on a dizzying array of social workers, doctors and therapists in order to acquire the basic skills of daily living (and may never do so) would, I’m sure, be grateful that their cousins in the Level I ASD bracket wish to remove this option for them.
If autism is genetic, why is it on the rise?
Have breeding patterns changed so radically that genes are surfacing now that were absent in previous generations?
Or are we dealing with an interaction between genes and environment? Maybe people with a certain gene are susceptible to novel environmental toxins?
I don’t think anyone really knows why autism is increasing.
We don’t know why autism is on the rise. There have been various reasons put forward: c-sections, age of parents, auto-immune issues and the environment, and the debunked vaccine theory. It is quite possible that much of the rise is due to an increase in looking for it. ASD as a diagnosis isn’t that old and over the last few decades it has changed. Say, in 1970, it would have quite possible for a child with what we would now call severe autism ‘level III’ autism to have been labelled as mentally retarded, or going back further, as having childhood schizophrenia. Again, a child with what used to be called high functioning autism, now often mild autism or ‘level I’ autism, may never have received a diagnosis.
Over the past couple of decades people have been much more comfortable about accepting a label of disability, and as with the neurodivergent crowd, it can be a badge of honor. Many parents will actively seek out a diagnosis for their child these days, whereas in years past they may have been ashamed of having them labelled. I know of many parents who have gone from doctor to doctor looking for one who will ‘see the autism’.
That said, if you look at the website of the National Council for Severe Autism, they argue, using the very well kept data in California, that there has been a genuine rise in the number of cases of autism and this is an economic time bomb as level II and level III cases need significant support throughout their lives.
Ugh I just wrote a huge comment in response to this ‘awaiting approval’.
I think it’s mainly genetic, assortative maiting could be the cause of rising numbers
Think of the slightly autistic male computer programmer, getting married to a slightly autistic female programmer, surprise surprise, the children are even more autistic
That said. I also think just knowing more about the condition has resulted in more cases being diagnosed
Yes, I think assortative mating. I grew up with an (undiagnosed) autistic older brother, and inadvertently married someone who I now realise was also undiagnosed autistic, hence my autistic son, with more severe problems than the generation above.
Other genetic differences are on the increase as we learn to survive with them and reproduce. We can be thankful for modern medicine on an individual level, and troubled by these implications on a population level.
“If autism is genetic, why is it on the rise?”
Because of over-diagnosis.
Concept creep basically. It’s come to be a catch-all term for all human variety.
‘That person seems like a bit of a misfit in certain groups I fit in with’ – *whispers knowlingly* – ‘Yes, I think they’re on the spectrum’
I started teaching in the late 70s.
In my first school there were no autistic children, I had come across only one during my teaching practices. Similarly in my first class of 36 children aged between 5 and 7, in a poor area of Salford I had no children with eczema, psoriasis, food allergies or severe behavioural problems requiring medication but that began to change. I left teaching for several years but returned in the early 2000s to find the number of children in my London school with autism , all manner of allergies and behavioural problems was off the scale. Every form teacher would have several allergic children and other special needs children in their class.
Blaming genetics is convenient but it is not the answer. I think we need to consider the causes of what is making children so chronically ill or is damaging their brain function.
In the US over 50% of children have some form of chronic condition. What are we doing to children to cause this?
Many theories have been postulated and most quickly shot down in flames without full examination. I recently read Robert Kennedy’s book it made a lot of sense to me and I am deeply concerned that his view point is so readily trashed and silenced as crackpot. It certainly isn’t. We owe it to children to discover what on Earth has made so many to suffer and stop it immediately.
It may sound uncaring to suggest that those who oppose any treatment for autism, no matter whether the candidate or guardian thereof wants it or not, should be the ones to pay for the social costs.
It is already the case in the UK that payment of sickness and disability benefits is not withheld from claimants who refuse medical or surgical treatments. The reason is that many such treatments have problematic side-effects or carry significant risk, and people therefore have a right to refuse them and still receive benefits. Equally, of course, claimants who want treatment but are stuck on long waiting lists also receive benefits while they wait, provided they are eligible.
autism is nowhere near as easy to define as a physical deficit like deafness.
No doubt genuine autism is quite well defined, and it would be good to reverse the deficits of people who are literally beyond all communication, but the ASD fashion has the same level of definition as a horoscope reading. People buy into it as an easy identification and explanation for their individual problems essentially.
I asked my adult autistic son if he would take a cure for autism if one became available. He said yes, absolutely he would. I explained the analogy re the deaf community, and he said people who enjoy their autistic identity are welcome to it, but he doesn’t see autism as his personality, and didn’t have any qualms about “who he would be” without autism.
He also pointed out that everyone in our family wears glasses; we don’t “identify” with any “visually impaired community”.
Before anyone jumps in and says he doesn’t sound properly autistic, I’ll just add that school was a wretched 12 years of suffering, that he has a carer to interact with the wider world for him and, like many with autism, he has physical comorbidities that are also problematic.
As an autistic person I would say no to the cure due to that within the back of my head it tells me there is no way to cure it due to this autism within me feels like it’s a part of me which a lot of autistic people has mentioned which you can find on YouTube or anywhere on the internet…it makes me who I am and what I do…It feels like it’s not a disability but I just think and feel differently than others but can do certain things that most people can’t do that’s not a disability…All autistic people have their own opinions on whether they would or wouldn’t want a cure due to we are all on a certain side of the autistic spectrum…but in my point of view I don’t believe that there is a cure for this…even if they tried I just know that my personality would be gone and I would loose my abilities that it has given me…I would be like a zombie. And I believe what I have is genetic…my theory is that it came from both my mother and father although they are not autistic but they both do these certain things that I do that a lot of autistic people would do…for example my father was a genius on computers and he had a good eye at shooting targets whether it was Darts, Range shooting, and very good at snooker which he was a professional at that led him to get many trophy’s which he also got for playing darts too, On the other hand my mother is into creative things…she loves making furniture’s for the garden or for the house that’s just handy…and she’s obsessed with puzzles…but there is this side of her where she come up with very silly things where she thinks these certain problems can be fixed in such a simple way…for example if a garden fence broke she would think that it can be fixed by using Sellotape or blu tack…or if she had a pet stick insect and one of it’s legs fell off she would think that it can be fixed by gluing it back on which she once did and she glued the leg on the wrong way LOL…and she’s not always a good learner due to she doesn’t pay much attention to those who try to teach her…and there is this side of her where she has anxiety problems and she worries so easily over certain things that’s not a problem, So everything that my autism has given me seems to be everything that my mother and father had…like their interests and worries and certain things they were good at doing…I’m good on computers just like my father, I’m good at shooting targets on gaming and good at darts along with playing snooker just like my father, I’m good at Art and creative ideas just like my mother, I fear things within the world and have anxiety problems just like my mother, And I think certain things can be done in such a simple way…just like my mother’s thinking, So my parents fears, interests, abilities, and their little disabilities was all genetically transferred to me that became my autism…and their interests had led me to have autistic traits.
The article of course highlights the problem with the label autism/autistic. It’s used too broadly. The ICD-10-CM category seems to cover the most impaired but the nuances will be lost on the general public. ICDs 11 etc I think may better cover the lesser impaired but don’t have a generic name that’s different. The formal diagnosis is key but even that can be fraught with complexity and linked to how further ‘support’ may be justified.
There is clearly a large spectrum and the 27% referred to by the Author are deeply disabled. The much less disabled do not and cannot really represent what might be best for them.
“It’s used too broadly”
Semantic inflation, all the rage these days.
Exaggerations, mission-creep, weaponised diagnoses (medical, political, religious, etc) – psychological games abound. One can even witness it on these very pages – e.g.the tendency for some commenters to reliably and repeatedly blame a monolithic entity called, ‘The Left’, for all of the ills in the world – sneering at ‘Spoons; deluded secular Jews; Hollywood-ification of the Hamas/Israel conflict; the decline, nay destruction, of the West; Saudi Arabia turning to Russia; dead babies in the NHS – and that’s just today!
Yep agree DA. Suspect we are all a bit prone to it occasionally mind. But we do get a fair about of catastrophising on Unherd. It’s what sells of course.
Ah yes – the politics of autism. I am very, wearyingly familiar with it. It consists of a lot of people with loud voices who speak for no one but themselves.
But we are getting ahead of ourselves. If someone can convince me that gene editing could ‘cure’ you of having, oh, I don’t know, colourblindness, or red hair, or white skin, I might start to take it seriously.
Awaiting approval.
Why?
Just… why?
Those comparing a potential treatment for autism as being the same as “conversion therapy” have got their argument completely the wrong way round.
Surely, a medical invention which helps ameliorate autism is the very same thing as a medical invention which helps ameliorate (if you believe this to be the case) gender dysphoria?
Yes, but why stop at autism? If you can bio-edit this particular characteristic, it doesn’t take a genius to twig that you can potentially do this for a huge raft of characteristics. And very probably, you can do this after the fact, as in, well after birth. Moreover, you can do it to yourself, or to those you (seemingly) created, or to others with no connection to you. As they can to you, of course. A slicing, dicing, gene-splicing, arms race, with everyone standing unsteadily on the shifting sands of selfhood and identity.
The woke folks want to intervene for the gender dysphoric to change their gender and are outraged at any suggestion to wait before offering life changing hormones and surgeries. These same people don’t want to help blind, deaf or autistic lead better lives. Hypocrisy anyone?
Autism does not have a genetic cause.
And while we are on the subject of false diagnoses, the propensity of enslaved Africans to flee was never a mental illness.
Socially disapproved of behaviour have a long history of being pseudo-medicalised by those who are discomforted by them.
https://en.wikipedia.org/wiki/Drapetomania
https://en.wikipedia.org/wiki/Female_hysteria