Clearing Up Some Misconceptions about Neurodiversity

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In the case of wheelchair users, no one even expects there to be a cure, at any time in the foreseeable future, for all or most of the many different chronic conditions that might cause someone to need to use a wheel chair. I would expect most people with most such conditions to consider cures to be desirable, but pie-in-the-sky.

In the here-and-now, what's most important, to avoid being "confined," is accommodations in the form of elevators, ramps, curb cuts, wheelchair-friendly bathrooms, etc. Indeed the very phrase "confined to a wheelchair" is rejected by many disability rights activists, on the grounds that a lack of accommodations for wheel chair users is far more "confining" than the impairment of not being able to walk. The disability rights movement would be outraged if someone were to say: "All these accommodations for wheelchair users are too expensive. Let's put all that money into medical research to cure them instead."

Anyhow, a closer parallel to the autism community might be the blind and deaf communities. I haven't yet read up on this in detail, but it's my understanding that there is indeed some controversy within those communities as to whether a cure would be desirable, at least for people born blind or deaf. Of course, for someone who was born sighted and/or hearing and who then lost one or both of those abilities, restoring those abilities would clearly be an unalloyed good. But there is some debate over whether the same is true for people who were born blind or deaf. As I understand it, the main issue is that, if a person's brain has not developed to handle that kind of sensory input, then introducing it later in life could cause more problems than it would solve.

A major difference is that blind/deaf people are rarely neurologically challenged (other than their respective sensory input deficits) and most are independent and able to converse with each other and easily form associations.

There's an online group of mostly right-wing-leaning anti-neurodiversity folks who call themselves the "autistic dark web." They seem to have named themselves after something called the "intellectual dark web," which seems to be an alt-right-dominated group that tries to appeal to liberals.

EDIT: See documentation here.

Last edited by Mona Pereth on 25 Dec 2019, 8:35 am, edited 1 time in total.

Well, yes, it's a different kind of disability.

However, any attempt at a total "cure" for autism would necessarily entail even more radical changes to a person's nervous system, with potentially even more resulting chaos in the person's life, than the introduction of a new kind of sensory input.

A sudden change even to just one dimension of autism can cause chaos in a person's life. (See An Experimental Autism Treatment Cost Me My Marriage by John Elder Robison, New York Times, March 18, 2016.) All the more so could a sudden change to multiple dimensions of autism have drastic unintended side-effects.

It can be argued that the risk is worth it for the most severely disabled autistic people. But, for the less severely disabled (and not just highly successful folks like John Elder Robison), there are good reasons to be wary of the idea of a radical "cure."

EDIT: Even for the more severely disabled people, the principle of "First do no harm" should still be a key consideration. IMO there needs to be more research on ways to help them communicate. Major breakthroughs in that area might render more radical brain rearrangements unnecessary.

Looking back at my autistic life, I can confidently say that a "cure" is not what I needed. My family did not even try to "help" me with any therapy. My childhood was well before the spectrum was recognized and I realize that any therapy back then was misdirected and not very helpful. My aspie daughter is getting the support that I could have used to make my life much easier.

I am close to finishing Robison's book "Look Me in the Eye" and I am amazed how it confirms the idea that "we are completely different but so similar in areas affected by autistic traits". A case in point, we both were in the corporate world and very successfully designing electronics. Robison was pushed in a management position which was the beginning of the end of his engineering career. I had the opportunity and was tempted, but luckily had a former boss and a friend talked me out of it.

Autistic people who want to be "normal" or NT come from all political persuasions, right & left, skin colour, nationality and sexuality, politics have nothing to do with it. Like any number of medical conditions, they just want their condition to go away or improve.



John stated that he never regretted the therapy and it was largely his wife`s depression that cost his marriage as the therapy allowed him to tune into emotions where before he could not, quote:






https://www.telegraph.co.uk/health-fitn ... -emotions/

Problem with the above question: How many people would voluntarily spend more than a very tiny amount of time with other people's children in general, including NT children, without getting paid?

Caring for kids, even NT kids, is work, and most people don't do it without pay unless the kids are their own or at least very close relatives. (Indeed, anyone who was willing to spend a lot of unpaid time with kids, of whatever kind, would probably be looked upon with suspicion as a likely pedophile.)

Anyhow, Bailin obviously does enjoy her work and takes pride in it, even if she's not willing to do it for free. Would you ask any other kind of professional to do their work for free, or treat a willingness to work for free as a some kind of test of their sincerity?

See also my reply to another part of the same post.

Last edited by Mona Pereth on 25 Dec 2019, 5:37 pm, edited 2 times in total.

The therapy also was not a total "cure" for his autism; JE Robison is still autistic. It was a treatment for just one aspect of his autism (a treatment not appropriate for all autistic people, many of whom are over-sensitive to other people's emotions, rather than being oblivious). And, while JE Robison felt that this particular treatment was worth it, despite the cost, I suspect he probably would not have felt the same about a treatment that attempted to radically rearrange many more aspects of his brain, with a high risk of taking away his unusual abilities as well as disabilities. He is a longtime strong supporter of the neurodiversity movement.

My point was that even a treatment for just one aspect of autism can have radical unforeseen consequences. An attempt at a total "cure" would be far more radical in its consequences. Hence great caution is justified.

Last edited by Mona Pereth on 25 Dec 2019, 7:10 pm, edited 2 times in total.

What I'd like to see is less debate about cure or no cure , and more discussion about how the time to getting a diagnosis can be shortened for people like me ( severe mental illness since my late teens) . 27 years from Asperger's being in the ICD IN 1992 to getting a diagnosis is simply not good enough .It's meant substandard help and support . I'd like to see more recognition that ASD and severe mental illness can occur together , and with it quicker diagnosis of such by mental health professionals .

Actually, one of the biggest differences between autism and other disabilities is that, for most other disabilities, there has never been such a loud, politically strong, elite-backed, celebrity-endorsed, high-profile push for spending huge amounts of money on research to find a "cure" as there was in the case of autism back in the 1990's and early 2000's, up until several years ago or so.

For most other disabilities, it is simply taken for granted that they exist, have always existed, and will continue to exist in the foreseeable future. Even if a total cure is desired, no one expects it to happen soon, and no one expects the search for a cure to be treated as a national emergency.

Consider intellectual disability, which affects more people than autism does. There have never been any high-profile organizations with names like "Cure Intellectual Disability Now!" or "Defeat Intellectual Disability Now!" (or "Cure Mental Retardation Now!" -- to use the term that would have been used before 2010 or so). Instead, parent advocacy for intellectually disabled children has always focused on making sure their kids get adequate services, including the best education that is feasible.

The most likely reason for this difference is simply that autism was a relatively new diagnostic category, and hence was perceived, by some very influential people, as an "epidemic." It is now generally believed, by most experts, that the "epidemic" was really just a re-classification of lots of people who previously would have been thought of as (depending on their level of intellectual ability) just "ret*d," or just "geeky," or just "weird." But, for a while, here in the U.S.A. at least, the idea that autism was an "epidemic" sparked a loud outcry to treat this "epidemic" as a national emergency and pour billions of dollars into research to find a cure ASAP.

Besides claims of an "epidemic," the pro-"cure" outcry also entailed a lot of demeaning (or worse) rhetoric about autistic people. One example is the infamous 2006 Autism Speaks video "Autism Every Day," in which a mother talked about how she contemplated driving off a bridge with her autistic daughter, and said she didn't do this only because she also had an NT daughter. (Worse yet, she said this in the presence of her autistic daughter, who was right there in the room during the interview.)

Last edited by Mona Pereth on 25 Dec 2019, 9:09 pm, edited 3 times in total.

I agree. More of the huge amounts of money currently being thrown at autism should go into better services, including training for mental health professionals (and other health professionals too, for that matter). There is still a huge shortage of mental health professionals qualified to diagnose autism in adults.

To this day, many psychotherapists and psychiatrists still know very little about autism. In 2008, my boyfriend was told, at a mental health clinic he went to for a while then: "Yes, we know that Asperger's syndrome is in the DSM, but we don't believe in it." Based on what I've heard at in-person support groups I've attended during the past two years or so, there still seem to be plenty of psychotherapists and psychiatrists who reject the very idea of autism except in the most extreme cases.

I think this idea of advocating money be "diverted" is simply not going to happen. Disability advocacy in Australia has successfully managed to get bipartisan political support to create a fund of "new" money for what we call the "National Disability Insurance Scheme" which subsidises people diagnosed with mental or physical disorders/acquired illness. The problem for us is my daughter has been continually rejected for funding support so the manner which it's dispensed is inconsistent

Have you been applying on your own, or with the help of a lawyer or social worker? Bureaucracies can be byzantine .... Also, not all autistic people are likely to qualify; it would depend on their specific disabilities.

Last edited by Mona Pereth on 25 Dec 2019, 9:24 pm, edited 2 times in total.

Probably not but other professionals don't claim to have special insight into the children they are treating or want to form associations with their clients.

By ourselves, rejected three times. The reason I am furious is the first time the NDIS government officer contacted us and had all my daughter's paperwork and said everything was fine. Then without a reason the person we liaised with vanished and we were told to apply again. After the third occaision I gave up.

our school has advised that we pay a disability consultant to put the paperwork in but it doesn't make sense as other parents have had no such obstacles so I want to get to the bottom of this.

I think there is always going to be schism between the needs of NT parents of moderate-severe autistic kids and the self-advocates who are high functioning. The former group will always seek a cure (nothing of course on the horizon) and the latter group are always going to claim they are not disabled. Never the Twain shall meet.