Professional clinicians vs. lived ASD experience

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As I wrote in another post, I was only diagnosed in 2014 with AS and since then I have only read the works of professional clinicians. Wrong Planet is my first experience of the ASD point of view (aside from anecdotes and quotations in said works) and to the best of my knowledge I have never met anyone whom I knew for certain was an Aspie, so my questions may sound naïve. I came across the following thread in the Wrong Planet General Discusssion forum:
viewtopic.php?t=101648
My question is not about the discussion going on in the aforesaid thread, but what I have observed to be a wide disparity between what NT professional clinicians say about us and what we say about ourselves. I should think that our own lived experience with ASD would be the more valid and correct of the two. One solution to bridging the gulf might be if there are any clinicians on the spectrum. Are there any clinicians on the spectrum who have written books about ASD? I would certainly love to read them and welcome any references that anyone could give me to such books. And am I correct about the disparity between us and them?

Because professional clinicians frequently do not have autism, and do not have direct access to our thoughts.

All they frequently have are diagnostic manuals and their experiences living in the wider world.

One cannot blame them for this lacking. Instead of being hostile, we should encourage these clinicians to be more receptive to autistic anecdote, so they could become more educated about us.

At the same time, we should be more receptive to learning the nuances of the wider world.

I recommend this post http://neurocosmopolitanism.com/neuroty ... t-clients/ and to take a look at the material and links found on Nick Walker's blog http://neurocosmopolitanism.com as a starting point.

Additionally, there are many books written by people on the spectrum that provide first-hand viewpoints of autistic experiences, and corresponding viewpoints on the neurotypical world that surrounds us. From my perspective, http://www.afieldguidetoearthlings.com by Star Ford provides astute observations on the neurotypical social context that are very much in line with many of my own experiences.

If you are looking for a comprehensive critical review of the bigger picture from a historic perspective, I recommend the latest book http://stevesilberman.com/book/neurotribes/ by Steve Silberman.

I think this is the EXACT reason as to why they focus so much on behavior and observed things as opposed to the things that autistics find more important. Like emotional regulation, sensory integration issues, meltdowns, and sensory overloads.

Which is why I tend to find the clinical descriptions of autism to be so "alien" but I use them as a gauge or rubric if you will of how the NT world sees it.
lol- getting a diagnosis is essentially yet another NT saying- yep, you're pretty weird, opps I mean autistic.

OHH!! I've read all of those and thought they were pretty awesome/spot on
A field guide to earthlings was amazing- blew my mind, helped me understand NTs (my family) SO MUCH MORE
And Steve Silberman's book was wonderful as well. I really enjoyed the historical perspectives between what was going on in Germany with Hans Asperger versus Khanner in America. Pretty cool stuff.

I can't thank you all enough for all this. I knew the disparity was not just my imagination.

The good neurotypical clinicians listen to thier clients and do not assume thier clients autistic traits are automatically deficits, impairments that need fixing. The idea here is NOT that every autism thing is a gift or the next stage in human evolution.

Clinitions that use the automatic Autism is a deficit idea fail basic psychology. Messages get internalized. An autistic who views thier autism as a curse is much liklier to be an unhappy, unfufilled person then one who is content or somewhat happy with thier autism.

It is a vicious cycle. Bad outside messages about autism get internalized. Autistic self esteem plummets, clinictions see autistics who are miserable and thier Autism is a bad thing view gets validated.

Example of a clueless "expert":

How can students with autism be supported through college?, an editorial published in the Journal of Autism and Developmental Disorders as recently as January 31, 2018 (and highlighted on the Science News site), begins by saying:

Wrong. Thirty years ago it was indeed rare for a student who entered college to have been diagnosed with an ASD. But, among today's older Aspies, it is certainly not rare to have gone to college thirty years ago.

The article then goes on to claim:


How "effective" the treatments were at increasing the likelihood of an autistic person going to college is debatable. Given ABA's lack of focus on a child's cognitive abilities, I strongly suspect that many of us were probably better off (at least in terms of academic achievement) un-diagnosed and un-treated.

The mind boggles, this one seems so obvious

I think there's merit and madness in both what the clinicians say and what the Aspies say. I'd like to see a fusion between the two camps, where each gets the chance to knock holes in the ideas the other presents, in a civilised and objective way, with a view to finding truth. I suspect the disadvantage of being a clinician (for the purpose of researching ASD) is that it must be hard to avoid falling into the trap of overmedicalising the condition - I'd expect a psychologist to do a better job here than a psychiatrist. Even then, the "psych" fields of study don't really cover ASD all that well, because ASD isn't so much a psych phenomenom, it's more the domain of neurology. So I think the main thing is to have a "big tent" that takes input from a wide variety of people, avoiding those who have any axe to grind and encouraging those who can keep their contributions reasonably free of politics and other irrelevent stuff.

I took a look at the 2009 thread that you cited. My first impression is an old saying
"If you met one Aspie, then you have met one Aspie." Which means that Aspies exhibit a variety of traits. Many of us are very different than others. We share many similarities but also exhibit many differences.

I think that sometimes axes need to be ground.

Overall, I'd guess that people are quite poor at imagining the minds of others. A large minority are convinced that everyone is like them, except that some cheaters pretend to have special needs or problems. Walter Chrysler was notorious for insisting that there was only one right way to do anything. Those who understand that people are different, such as the better teachers, are still in the dark about just how others arrive at the same conclusion. They experiment until something clicks. For most of history, blacksmiths made steel by following traditions that were little better than superstitions, wasting almost all of their time, but still arriving at an excellent result. I have even seen instructions on how to pass a math test using only non-math cues. This also shows that fools can pass through schools, and they do, in vast numbers. If they learn to cheat on tests, they learn to cheat their employers, or in our case, their clients.
The history of therapy is littered with dozens of great healers whose students could not do any good, and sometimes considerable harm. Sometimes the problem is that key concepts are just too large for average IQs to contain. All the soft sciences have historic waves of "fashion." Lamarck was ridiculed by western biologists for a long time, but now we see that he was onto something very big.
NTs can only make wild guesses at our reality. The most helpful thing I ever heard from a counsellor was that even though we both agreed I was probably taking the wrong approach, she wouldn't be able to say why logically. There's also a problem with assumptions that Aspies are similar to each other more than we are. NTs in general can't even understand dogs, and they are much more similar to each other, and not nearly as hard to fathom as some people.

Joshua Muggleton is an autistic psychologist.

So is Christian Stewart-Ferrer. But they mostly work in clinical practice. I would like to see more autistic researchers. Then we would get somewhere.

If neurotypical researchers, I quite like the work of Francesca Happe.

This misinformation is likely to continue for many years/decades.
Though I guess in 30 years time those assertions will be viewed as outdated, a bit like reading old books where the terminology makes you cringe.
For example the first school here for children with additional needs to become state recognised happened in 1947 and was called St Vincent's home for mentally defective children

That's mortifying these days, yet at the time state recognition of the school was much needed regardless of what it was called.

It gave with one hand and took with the other, a reinforcement of the second class status of children with additional needs, while recognising their right to education for the first time.

Totally agree on ABA, it trains, conditions, like behaviourism has limited value for holistic development. The time spent on this during sensitive periods of development instead of child led approaches such as mastery motivation cant be undone.
That potential is hobbled.

It's hard to find a balance between how things should be and how things are.

But surely not in a group of people who are trying to co-operate to find out about autism? OTOH I'm attracted to the idea of waging war on the bastards who say we're all faking disability to get an easy ride at their expense or that advocate or sell some of these "cures":
https://www.theguardian.com/society/201 ... ove-deadly