Response to some concerns about neurodiversity paradigm

Post Reply New Topic

Sorry, I couldn't resist:

Can you cure gay people?
My doctor says you can. He has just recently cured one of pneumonia.

Being neurotypical does not guarantee a happy life. I think some forget it, blaming autism for all the problems of autistic people, even those caused by other conditions or unhealthy environment.

On the contrary, IMO, we need actually need a much, much, much stronger sense of "identity" than we have now in order to build the kind of community (subculture) that will get us the things we need, such as:

1) Autistic-friendly workplaces (and not just in Silicon Valley -- which, by the way, has become far less autistic-friendly over the past couple of decades).

2) Better education and better therapy for autistic children of all kinds. (This includes fighting against or reforming the ABA monopoly.)

3) Research to focus primarily on (a) the actual worst problem of the most severely disabled autistic people; namely, their lack of ability to communicate; and (b) whatever can be learned from the experiences of severely disabled children who managed to become independent or nearly-independent adults.

Ha ha. I don't have a disability. I am so happy that myself and my children are on the spectrum. Really, I have a happy family, thanks to autism. Gosh, my two children are happy and smiling every day. My wife and myself have looked at each other and said so many times: "This is heaven!" And my wife is the one telling everyone that, if she had a choice and has to do it all over again, she would still choose to raise autistic children. A few weeks ago, I danced some Waltz steps with my 11 year-old daughter, for the first time. It was like a dream come true. How else do you want me to describe to you that our family life is not only perfect, but better than most neurotypical families?

See, this was the diagram I used earlier this year in a public presentation in a conference (well, the talk was in Spanish, but I have translated it back to English.)




Hmm, what if the majority of these "extremely disabled" autistic people are caused by the way their parents raised them? Have you paused to think about this possibility, at all?

I will write about "socialization and escapism" in the parents forum. See, the thing is, in the name of love, with the best intentions, parents, and our society, are destroying the lives of our autistic children. And people don't learn.

I would love to help low-functioning children, trust me, I've tried all too many times. BUT, the obstacle has always been the parents. Parents interfere too much, and are totally unable to pick up new skills. And that, is the root problem why their children don't develop well. You know how often I've felt I needed to place a piece of duct tape over the mouths of other parents? Gosh. Parents like to talk, but they don't use their hands to communicate with their children. I don't see any problem with autistic children, really. All I see is that the adults, and our society, are so, so sick. We've been trying to cure the wrong patients, all along. The problem is not in the children. The problem is on the other side. Intellectual disability, behavioral problems? That's how I describe our society.

I don't know if the majority - it is still possible to have both autism and some serious disability of different nature - but many enough to be concerned.
As I have expressed in another thread, our parenting culture is sick, treating children like their parents' wish fulfilling machines, not independent human beings . NT children are more likely to survive it without too much harm but autistic ones are on a lost position.

eikonabridge: Good for you sir i wish you and your family a happy and long life.


Mona: I support all your views on education.

The problem is you've still not addressing the Achilles heel of the ND movement which is what i referred to as the "diversity" or identity bit.

We all know as soon as Austism becomes an identity the minority strongest group that is happy to be identified with the condition, that seams to want to control the discourse will scream "dont touch my identity nazi" at any scientist in the west that trys to develop treatments to help those who want / need those treatments.

(I say west because i cant see the chineese buying it)

Its the old problem as old as humanity im afraid whats good for one group is bad for another.

Whats good for the fox may not be good for the hen

Whats good for the boss may not be good for the workers

Whats good for the high functioning aspies that work, no problem getting married families and what counts for a "full life" get their own cute identity (even though it makes no difference as their officially autistic by diagnosis anyway)

What then for the pragmatic aspies wanting to improve the efficiency of their mind that want treatments developed?

What about those at the bottom end of the spectrum with missing / duplicated dna will they just have to "suck it up" live a painful short, stressful life of indignity in adulthood to save the feelings of the oppressive minority?

I dont think your going to make turkeys want christmas / thanksgiving no matter how fun its made out to be.

Many references by many that seam to insinuate parents and education are to blame for severly disabled children with dna defects that echos the "refrigerator mums" from a past era.

More vague un scientifically proven references made to ways to save these kids that reminds me of the bleach & "voodo therapies" often seen on the net.

Whilst agreeing the priority should be the most severely disabled, I'd like more prompt help for people like me .
I have been a psychiatric patient since the autumn of 1973. It took moving and being under a different MH trust for a pdoc to refer me for an assessment . The diagnosis of Asperger's came nearly 46 years after being a psychiatric patient . Even if we go from 1992/1994 when Asperger's became a dx, that's a 25-27 year delay . That's an atrocious state of affairs .

I support it: screening for masked (or previously masked) autism among psychiatric patients with other conditions.
But first the mental health specialists should understand autism a bit more, especially that in autism some symptoms mean something different than outside the spectrum - shutdown, as an example, may look like catatonia but has a different mechanism inside.

I think a screening tool can be available relatively soon, there was a paper about slower extinguishing of neural signals after visual stimuli in autism, so with simple EEG and a computer screen you can "see" autism inside the brain regardless of other symptoms.

I agree that we need much more prompt diagnosis and treatment for adults. We need many more psychotherapists and psychiatrists who specialize in autism including adult ASD, and who understand things like how depression and anxiety in autistic people may need to be treated somewhat differently from depression and anxiety in NTs.

My point is that the research priorities should focus primarily on the most severe actual problems of the most severely disabled people, rather than on the search for radical "cures" for "autism" in general.

Current research, whose holy grail is a radical "cure" for "autism" in general, tends to use only mildly disabled people as subjects (insofar as it uses people as subjects at all, rather than "mouse models" with artificially-induced autistic-like behaviors) -- thus almost completely ignoring the most severe actual problems (e.g. lack of any ability to communicate verbally) of the most severely disabled people.

A treatment narrowly focused on improving overall mental "efficiency" would not be objectionable.


I've repeatedly advocated that there be more research into the specific actual problems of the most severely disabled people, and I've repeatedly pointed out that there is currently an extreme shortage of such research, a shortage that should be remedied. Please stop ignoring this. Please stop claiming or implying that I, and other neurodiversity activists, are ignoring the problems of the most severely disabled people.


Let the Chinese be the main ones to pay for further research along the lines of the current research agenda, then. All the more reason for research in the West to change its focus to important areas currently neglected.


The problem is not (for the most part, at least) a moral failing of the parents. The problem is lack of knowledge of the best ways to raise an autistic child. Any moral similarity to "refrigerator mums" begins only when parents defensively cling to their ignorance. But the ignorance itself is not primarily the parents' fault; the main problem is the primitive state of the science of educating autistic children.


Which "ways to save these kids," specifically, are you comparing to "bleach"?

There needs to be more research into better ways to educate autistic children of many different kinds -- including ways that have been around for a while but haven't yet had enough money spent on researching them, such as D.I.R. Floortime.

Leaving aside the effectiveness & success of the treatments as that's not the issue here:-

Here`s the parents statements on the suramin trial, are they not severe enough?

suramin

incase link doesn't work: https://health.ucsd.edu/news/topics/Sur ... ments.aspx

Here`s another on stem cell trial again not disabled enough?

https://www.dailymail.co.uk/health/article-6912381/Parents-non-verbal-autistic-schoolboy-11-claim-spoke-sentence.html

incase link not working: https://health.ucsd.edu/news/topics/Sur ... ments.aspx

Of course scientists will also study the whole spectrum to get a better idea of what they are dealing with.

(forgive the messy quotes & url`s im still getting the hang of using this site)

The suranim trials are an exception to the general rule that the more severely disabled autistic people are under-represented in mainstream autism research studies. But the general rule still holds, for the most part, as documented in this academic journal article.


The stem cell thing is not mainstream autism science, hence is not even relevant to any point you might be trying to make about the priorities of mainstream autism science. See Spectrum News articles here and here.

Or did you intend your reference to the stem cell thing as an example of the "voodoo therapies" you were comparing to "bleach"? If so, that was not clear. You seemed to intend it as a counter-example to my statement about how (mainstream) autism research has been neglecting the specific needs of the more severely disabled autistic people.

By the way, please do not use the Daily Mail as a source of info on autism science. For example, that article has a section titled "Can Stem Cell Therapy Help Autistic Patients?" which starts off with an unsubstantiated claim that autism is caused by a combination of (1) decreased blood flow to the brain (a claim contradicted by this study here) and (2) immune system dysfunction (a vast oversimplification of what's known and not known about a long-observed, real but far-from-100% correlation - see Symptom or cause? Autism and immune dysfunction). More generally, the Daily Mail is notorious for sloppy sensationalistic journalism.


Of course.

However, here's the thing:

There have been tons of studies of molecular mechanisms of autism, e.g. how a certain gene causes a certain protein to be formed (or not formed), which in turn causes some specific thing to happen (or not happen) in the brain, which in turn causes one or more "core symptoms of autism" (i.e. one or more of the defining traits of autism as per the diagnostic criteria). There have been a bewildering variety of such studies, given the many (over a thousand, by now) kinds of genetic anomalies that have been associated with autism.

But I don't recall ever seeing any news about any study of the molecular mechanisms behind the ability to learn language, or of the causes of a lack of that particular ability in some kinds of autism. If you ever read about such a study, please let me know.

I know researchers working in genomics that themselves have autistic children. There is no surprise that their children are not doing well.

Suramin? Stem cells? Gosh, how about Hyperbaric oxygen therapy (HBOT), SCD diet, Repetitive Transcranial Magnetic Stimulation (rTMS), etc?

There you go, one parent after another embarking down the same failed paths. What can you do, except to watch their families suffer and fall apart? There is absolutely nothing you can do. I don't know why these parents can't see the failure of others that have gone down the same paths. The first time you see one such case, you feel sympathy. The 100th time you see the same thing repeat, you don't even bother to react. There is a reason I don't bother to interact with families with low-functioning children anymore. It's always the same story: the parents are the problem, not the children. The paths they have chosen are simply not sustainable. Sooner or later all these parents disappear, not to be heard ever again.

(OK, my daughter is optimistic. She is sitting next to me. She says: we can help people digitally, or in person. Ha ha. It seems that she is telling me not to give up. Smart girl. So proud of her!)

I seem to recall you mentioning that you do occasionally speak at conferences. Have you spoken at any other conferences besides the ones listed here, and, if so, how many? How were you received at these conferences?

Also, have you been in contact with Dr. Stephen Shore?

My last talk was at the IEP Day conference (Saturday, May 4th, 2019): http://www.iepday.org/. I guess I can release the English version of the handout, now: http://www.eikonabridge.com/pull_not_push_english_handout.pdf. Yeah, the talk went well. But so what?

You have to understand how I use my time. I work. I raise my own children, including doing fun projects with them. I research and write. I get together with some local families. I participate in talks. So, giving talks is pretty low in my priority. It's OK, I do it once in a while, but pretty much I know the parents get excited during my talk, but when they get back home very few put my words into practice. The main thing is, between helping other people's kids, and developing my own kids, guess where I will spend my time? Ha. See, yesterday I just ordered some epoxy resin material from Amazon, so this weekend we'll do some casting with my kids. And I placed a hold in the library for Randy Pausch's "The Last Lecture" book for my daughter to read. We just came back from a vacation to Machu Picchu recently, too. Things like that. See, some friends asked me: but do children like to visit archaeological ruins? I dared not to tell them: but my kids are so well developed that their minds operate at another level! I told my children about the history of the Incas, so they could have a view about human societies and values, about the difference in technologies, things like that. I mean, other families have issues just getting their kids onto an airplane!

I will contact Dr. Shore. The thing is, I don't have a whole lot of time to prepare for talks. I am still writing my second book at a snail's pace. Preparing talks eats into the time I need to spend on the book. And you know the kind of essays I write are non-trivial. I mean, I derived Dunbar's Number analytically, for instance, with math formulas. For the origin of autism, I had to search and compile research studies into color blindness, schizophrenia and bipolar disorder, looking into Amazon tribes. And when I hit a jackpot with the Two-fluid model for the visual cortex, guess how many papers in liquid helium and superconductivity I had to read? What I do is extremely rare. Even rarer than the department of Social and Decision Sciences at Carnegie Mellon https://www.cmu.edu/dietrich/sds/people/faculty/simon-dedeo.html. I am a one-person army in what I do. And none of what I do takes precedence over my regular work and raising my own children. I would much rather be at the passenger seat than be at the driver seat. But, right now, I am the one single person in the world doing what I do. The two-fluid model is just the beginning: it opens doors in other fields like AI as well. I mean, once you understand the level of things I do, you can also understand why I don't have time or patience to deal with parents of low-functioning children. Are they kidding me?! Sorry to say this, compared to those parents/families, I operate at a totally different level. At work I need to understand the equation of intelligence by Alex Wissner-Gross. Do people even grasp at what level I need to operate? My world is a different world.

As i mentioned in the post ( i said leave aside the outcome) the daily mail article + the suramin one was just a casual 2 min search of examples of the types of severity of the kids that take part in these licenced invasive trials, it wasnt meant as a scientific report of each therapy.

Im well aware of the scam stem cell industry that goes on in panama and india alongside real stem cell research in autism.

As a general rule in a modern society today the younger the autism diagnosis the more severe the traits in most circumstances. High functional aspergers doesnt normally get diagnosed until the teens (most of the time)

So when genuine licenced invasive medical trials take place on under 15 year olds like genuine stem cell research etc it can be assumed they are severely impacted.

The last post was really a question of what ND would classify as "severe" barring in mind in ASD approx :

30% are non verbal
70% have an intellectual disorder
Most are unable to live indep

Also not forgetting that part of the reason autism and aspergers was combined was because the boarders of severity are sometimes ambigious with many aspergers : high func sufferers in and out of mental hospitals their whole life, regardless of the assumed mild autism diagnosis.

I've gained much respect for you and your approach through reading this thread.
The community is lucky to have you.
Why other humans going around fighting for government solutions and trying to gain power is beyond me. You just educate and move on. This is so refreshing.