Neurodiversity paradigm & treatment of autistic children

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A major concern of autistic rights activists has been how parents' behavior toward their autistic children is affected by the parents' attitude toward autism.

The anti-"cure" position was first articulated back in the early 1990's by Jim Sinclair, Don't Mourn for Us. Jim Sinclair's main objection to the goal of a total "cure" was that a parent's emotional fixation on that goal was psychologically harmful to the child.

For a more recent example, see: My Child is Autistic, What Now?, on the website of an anonymous "Autistic Science Person," comparing two sets of parental behaviors and two kinds of "therapy" for children:

(1) Those that tend to be associated with the "Tragedy narrative."

(2) Those that tend to be associated with the "Neurodiversity narrative."

It is at least theoretically conceivable, though, that a parent could desire a total "cure," yet at the same time recognize that parental behaviors in category 2 above are preferable. I suspect this is rare, but I could be wrong.

An ND advocate rather than a neuroscientist going under the label autism science LOL

Depends on the age of the children. The younger the diagnosis the more severe the symptoms. A spectrum news article this week confirmed approx 40% of kids diagnosed under 5 also have intellectual disability.(see link)

The biological event that caused ID and other mental health disorders also caused the autism so cannot be separated.

Even at a late childhood age co morbidity includes eating disorders which can lead to suicide in even the most functioning kids so not a light matter to dismiss.

A loving parent can hardly be blamed in wanting these issues to go away.

These days the older the child gets diagnosed the higher functioning they will likely be and the more say they will probably have on their autism. Also the more freedom to follow the ND way of life

The main issues I can see with these kids and parents is around employment and independent living since many parents may be unable or unwilling to have their adult child at home with them for life, especially if they appear unwilling or unable to get a job and move out.

Many hf autistic female ND advocates end up having children (most autistic men die virgins), many have autism but a lot are shocked to find it’s not their autism.

Many already have mental health problems of their own and are suddenly confronted with having to care for a child with severe autism.

Their carefully laid out plans come crashing down when their non verbal child grows big violent and destructive and doesn’t come with them to the grocery store, leaving them under de facto housebound.

As Mike Tyson one said “you have a plan then get punched in the jaw”


https://www.spectrumnews.org/news/sex-a ... rbidities/

The concern is tempered by the fact these activists don't actually have to live 24-7 with the children of these parents. It's easy to pay lip service about what these parents should or should not do when the activist actually don't provide anything constructive or practical in terms of support for the children they claim to be activists for.

There are NT parents who choose to sacrifice their careers, jobs, friends, family so they can dedicate their lives to look after their children. They don't look for validation and reward. If they spend much of their day changing adult diapers and cleaning poop from walls, listening to their child scream or watching their child bang their head on the wall suffering pain for hours then you might excuse them for wanting to cure their child.

If you've me one Autistic you've met one Autistic, so I'm just speaking for myself here...

I was diagnosed at age 64. I could not have been diagnosed before I was 40 because that was the year DSM-IV came out and made "Asperger's Syndrome" a possible diagnosis in the U.S.

My father is still alive (and quite old) and after my diagnosis I queried him a little about when I was very young. He said my Mom and he thought I was doing "weird" things but I wasn't misbehaving so they decided not to punish me. I am so glad that's what they decided! I'm still "weird" but by the time I was diagnosed I'd managed to do well for myself.

That's an overgeneralization.

All of the editors of Thinking Person's Guide to Autism, for example, are parents of autistic children. And one of the three editors, Carol Greenberg, is described as follows: "Diagnosed with Aspergers Syndrome at the age of 44, Special Education advocate Carol Greenburg's understanding of autism is enhanced by the daily triumphs of her autistic son's struggles with verbal language." Sounds like her son has significant disabilities.


"Thinking Person's Guide To Autism" does aim to provide constructive, practical advice, as well as critique of the status quo.

Also, a quick Google search turned up the following books that appear to be written from an autistic-friendly perspective (although admittedly I haven't read them and am not in a position to comment on how good their advice actually is):

- Start Here: a guide for parents of autistic kids Paperback by the Autistic Self Advocacy Network
- Managing Meltdowns: Using the S.C.A.R.E.D. Calming Technique with Children and Adults with Autism by Hope Richards and Deborah Lipsky
- The Real Experts: Readings for Parents of Autistic Children

I'm not a parent myself and I don't think I would be capable of the responsibilities of being a parent. So I don't talk about parents and children very often.

But it does seem to me that if my parents knew about "autism" and were obsessed with trying to "cure" me, this would have been very bad for me. In many ways I feel that my upbringing was very fortunate, and probably something that many parents of autistic children could learn a few lessons from, although I don't claim to speak with authority on the matter. (As it was, my parents saw me as a child with both strengths and weaknesses, and they focused more on encouraging my strengths. I'm very glad they chose to do that.)

Anyhow, the main point of this thread was to point out the historical origin of the anti-"cure" position. In the early 1990's, Jim Sinclair, author of Don't Mourn for Us, was one of a bunch of autistic adults who participated in panels of autistic adults at parent-oriented autism conferences.

Also it seems to me that parents should at least consider the impact of their own attitudes on their children. I would be interested in your comments on the specific issues raised within Jim Sinclair's article. (Please read this article in its entirety before you respond, if you choose to respond at all.)

Also I would be interested in you comments about the specific items on these side-by-side lists. (Please read these lists in their entirety before you respond, if you choose to respond at all.)

The author is apparently a neuroscientist: "Ira is an autistic self-advocate and graduate student in auditory neuroscience," according to the website's About page, which also says, "They currently write about autism, educate parents and professionals on accommodating and understanding autistic people, consult on research, and give informative talks. [...] Ira is on the board of Neuroclastic, an autistic-led nonprofit, and has been advocating for disabled students on their university campus as a disabled graduate student."

See also Meet the autistic scientists redefining autism research by Rachel Nuwer, Spectrum News, 10 June 2020: "Growing ranks of researchers on the spectrum are overcoming barriers — from neurotypical bias to sensory sensitivities — to shape autism science."


That's a statistical trend, not an absolute generality. It does make sense that (other factors being equal) parents would seek a diagnosis earlier for more severe and more obvious kinds of disabilities. However, if today's ASD diagnostic criteria and today's autism establishment had existed when I was little, I probably would have been diagnosed on the early side, because I was a late talker.


And indeed the point here isn't to blame parents, but rather to ask how the parents can best maximize the child's chances of doing well.

I would be interested in your comments on the specific items on these side-by-side lists.

Sorry the document is actually more harmful than good because ABA is the only evidence based therapy that has shown to have some long term benefit for autistic children. The reality is we felt it worked for our daughter when it was i) parent controlled and parent driven (not having some random person come in segmenting the experience for the child based on situational factors) and ii) when it was done within the limits of tolerance for our daughter and not based on some cookie cutter prescribed number of hours per week.

My attitudes toward autism advocacy are informed by my experiences.

After dealing with autism bodies/groups, ABA therapists, child psychologists, speech therapists, families of children with autism, paediatricians, doctors and OTs I can conclude that none of these groups cared or provided any constructive information or support for our daughter or for my wife and I as we came to grips with having a child on the spectrum.

Everything we did for our daughter we did ourselves and taught ourselves what we needed to know. We actively collaborated with my daughter's school and despite opposition from teachers, parents, and even some teachers aides we persisted with this collaborative approach within the education system, my daughter had some great learning assistants and teachers who were her biggest advocates. We never saw the need for outsiders telling us what to do.

The people I had the worst experience with are families of children on the spectrum (not unlike the parents you highlighted in the link you provided) who are so self-absorbed with their own problems that I wonder how they pretend to be interested in the welfare of other people's children? Many of the professional who claim to be "autism specialists" are a disgrace to their ethical code, They are cold and heartless and only interested in paying off their BMW or high rise condominium than worried about the children they claim to treat.

One stupid psychologist b***h who diagnosed my daughter for a school assessment stopped talking and we asked why she went quiet. She said she wanted to give us 5 min to have a cry as the results of the assessment "sunk in", I wanted to punch her in her sanctimonious face.

If you met one child with autism you have met one child with autism. Sorry, advocates work on cookie cutter approaches and talk a lot of BS. Not interested...But happy to critique

Firstly a student is not a qualified scientist but leaving that aside, if your referring to parents who may give some bleach like substance to their autistic kid made in a bath tub in India by a witch doctor then yes don’t do it.

Some parents may decide to do nothing but others may be more proactive like contacting Vancouver children’s hospital to explore into the 100 or so treatable intellectual disabilities that their child may have:

https://treatable-id.org

Or they may enquire into folate receptor antibodies their child may have where treatment on a positive test with calcium folinate may reduce autism severity if caught early enough:

https://www.researchgate.net/publicatio ... ile_Autism

Maybe they will wait for the suramin trial to finish?

https://www.prnewswire.com/news-release ... 24425.html

Maybe their child will be a responder to bumitanide (sorry spelling) that seems to have an effect with some autistic kids.

https://research.cmft.nhs.uk/news-event ... f-research

Maybe the fact that all these interventions have had a positive effect with some autistic kids proves the pathology of autism as opposed to the left handed ness natural difference that ND promotes.

I’m not pretending of course that anyone of these things are a “cure for autism” or works with all children and they didn’t exist when you was a child in the 50’s.

Just that being proactive on the pathology side is probably better than doing nothing.

Of course some parents in the future if treatments become available may choose to do nothing of course for their child with severe autism.

The most recent similar example was with hearing implants many decades ago. Most parents gave them to their kids, some however choose not to claiming their kids deafness is their identity, the opportunity to releave their disability has now passed and they are now permanently disabled.

How do these kids feel now I wonder on their parents decision?

How would you feel now if you was deaf because your parents could have chosen to treat you but decided against?

Does 99% of the population recognize these parents virtue signaling decision?

Do kids get taught about this in school, do they have monuments in town square forever recognizing these people and their sacrifice?

In between world peace, climate change, covid and paying the mortgage does anyone care about their deaf identity?

Their kids are left disabled and disadvantaged, only they carry that burden for life and no one else knows or cares for their parents virtue signaling.

Quite a few autistic researchers say that not enough research has been done on potential longterm harms of ABA, and that not enough research has been done on various alternatives to ABA. Problem is, the ABA establishment has become so entrenched that it's difficult to get funding for research that threatens said establishment's interests.

This isn't your fault, of course.


In so doing, you doubtless limited any potential harm, at least. Good for you.


I'm very sorry to hear that.


Good for you.


I'm sorry to hear you've had such bad experiences with parent groups. This seems odd to me. One would think the whole point of a parent getting involved in a parents' group would be to compare notes with other parents and share info about resources? What do you think is really going on with the parent groups you've run into?


Sorry to hear this about the "advocates" you've run into. Most of the "advocates" I've run into online are much more interested in critiquing the research priorities of the autism scientific establishment than in critiquing individual parents.

(I've seen some critique of individual parents for doing things like (1) publicly embarrassing their kids by posting videos of their meltdowns on YouTube, and (2) giving their kids blatantly unsafe treatments like "Miracle Mineral Solution," i.e. bleach. Hopefully the vast majority of parents don't do stuff like that. I don't get the feeling you would have done anything like that.)

I’ve never had ABA or been that interested in it, but what I do know is that much of this anti ABA is based on ignorance: -

1. ABA like psychiatric institutions has a dark history of abuse, but that has now all gone away and today it`s just like many other types of therapy. Today it`s almost certainly harmless but alas of limited value

2. ABA doesn’t cure autism & is largely about skill learning for children with severer forms of autism to make life easier for both child & family, i.e., teaching a child to tie shoe laces, get dressed by themselves. Some skills are perishable over time and are task limited. For example, helping a child be able to dress themselves if clothes are put in front of them. But they may lack the initiative a NT child would have to choose an appropriate outfit, to dress properly or have a shower beforehand.

3. Some skill sets taught are also good fun skills like being able to sort things in different boxes, i.e blue buttons in one box, yellow / red in another etc..

4. Where it strays into “NT training” areas like encouraging pretend play & eye contact its value is of limited value & probably useless

5. It raises IQ slightly in that these children as they are skill learning and using their brain, rather than just sitting around all day. Many are intellectually disabled and they literally do nothing of intellectual value plateauing in intellectual development at a young age.

6. Most of the anger against ABA stems from those that believe intensely in the Neurodiversity paradigm, which absurdly states neurodevelopmental disorders are a form of left handedness regardless of how disabling and life destroying and should not be changed. They forget that ABA doesn’t change anything just builds individual skills and raises IQ in kids that would otherwise be dumped in a corner to rot and be forgotten about. Kids that may have a higher chance of ending up in residential care in their teens as their parents can no longer care for them unless they are able to reach a minimal level of living skills & self care.

Dressing a two-year-old is easy, try dressing a 170kg 16-year-old if your 60+!

This can be seen in the type of language seen when they describe ABA “as like dog training”, they seem to forget that nearly all types of therapy have a strict serious element to it, (ever seen a therapist helping someone to walk again after an accident, more like a drill instructor) Obviously you wouldn’t get such harshness with a child but they do have to offer incentives like sweets.

Ironically incentives are offered to NT kids everyday to do well at school or good behaviour (Santa`s list of good / naughty kids) but they don’t seem to recognise that fact.

They are not interested in if it works or not for these kids, they just want it gone, because it goes against their belief structure.

This is why ND shouldn’t have too much power over autism matters, they are blindsided & not actually interested in helping individual people just playing identity power politics with other peoples lives while slavishly following the non-scientific Neurodiversity paradigm.

If you've met one autistic you've met one autistic.

I'm rather glad my parents pretty much let me be me...overall it worked out reasonably well...for me and them.

But if you've met one autistic you've met one autistic.

No. The ABA critics are very familiar with all of the arguments you make below and have written lots and lots of in-depth responses thereto.

I have a large text file full of links about the ABA controversy. I can PM it to you and anyone else interested if asked to do so.


Whether and to what extent that "dark history of abuse" is truly gone is a matter of dispute. (It's definitely NOT gone at the Judge Rotenberg Center, which still seems to be regarded as respectable in the ABA world.)

Anyhow, even a purely reward-based system, if carried too far, can have harmful side-effects. One of these is a conditioned fear of showing one's enjoyment of the things one loves, lest those things be taken away and held hostage as an occasional reward.

Critics also object to the amount of time spent on ABA, leaving the child with little or no time for spontaneous play.

Another objection, from some of the more severely disabled autistic people who can't talk but have learned to type: ABA doesn't take dyspraxia into account. What at least some of these kids need, most of all, is physical therapy to help them gain better control over their own muscles.


But there are lots of autistic people out there who say that they personally were traumatized by it. And these people are NOT just older folks who experienced the earliest forms of ABA.


These skills are good to learn. But there are other ways to teach them besides ABA. And if the kid is having trouble with them due to motor dyspraxia, ABA alone certainly can't fix that.


These skills are good to learn too, but are also the kind of thing many autistic children tend to do spontaneously. Indeed a greater-than-normal interest in "lining up toys" and classifying them is considered to be one of the classic signs of autism.


One thing we agree on.

Indeed an emphasis on eye contact is potentially not just useless but harmful, and the potential harms of this (for reasons obvious to many autistic people) have not been adequately researched.


Most likely, there are other approaches that could raise these kids' IQ quite a bit more.


The mere fact of offering incentives is not the issue.

A WP post from the year 2041 has just come through the wormhole:-

“Of all the things that **** me up from my childhood, the smearing, not being able to communicate or express my needs, biting myself and being used as a human punchbag at school”

“It was them Saturday mornings with Janet at the local ABA Centre”

“Being made to play pop up pirate, making tea for teddies and having to sing the head shoulders knees and toes song while doing the arm movements”

“they even claimed it was for gross motor skills”

“Abuse man total child abuse give me guantanamo any day my life would have been perfect without it”

“And them smarties she gave me she always took the purple ones”

I’ll never get over it

The pain the pain

On a serious note comparing the Judge Rotenberg Center which is a hardcore psychiatric institution where kids actually live and receive “treatment” to the kind of thing I described above that parents send their kids to for a few hours a week is non comparable.

You may as well compare a pop gun to an AK47

Any institution or care home for kids is going to be a magnet to peadophilles and all sorts of bad people.

Local ABA centers parents take their kids and are sitting there the whole time.

The reports of trauma you mentioned I wonder if they were coached into believing that from ND activists online?

Many young autistic people are vulnerable to this kind of propaganda they possibly read online. Rather insidious implanting false beliefs and turning the kids against their parents like a cult.

I don't know whether it changed my IQ but Dad taught me chess, Mom played a lot of cribbage & Scrabble with me, and there were books! (Including science fiction books!)