What is autism? How the term became too broad to have meanin

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The author is wrong on two points. “Self Diagnosis” has nothing to do with autism prevalence rates. That is determined by professionally diagnosed people, period.

Again, most ND proponents are not ableist elitists throwing severe autistics under the bus. Again if we were so determined to throw the more severe under the bus why would we be spending time trying to close the Judge Rotenburg Center, oppose ABA and sheltered workshops that do not generally effect us?

I have been on WP six years to the day, and read autistic spaces and the vast majority of us do not trivialize autism.

The author opined as many have that people that can advocate are not qualified to opine or have a say in the treatment of severe autistics. There is partial truth to this claim. But if we have problems understanding the experiences of the most severe why should NT’s who do not share the common traits, who have not had autistic burnout or childhoods where we were functioning lower be the only valid people to determine treatments for the severely autistic?

As I have said often if and when science proves autism are really separates conditions break up Autism otherwise why break autism up because of a feeling? We don’t break up most conditions because it seems like separate conditions.

The disruption and infighting in the autistic and autism communities is being caused
by aspie supremacists and those advocates for the low functioning who want define autism as it was defined in the 1960s. Those groups have very little in common. What they do have in common is they want to dissociate themselves from the other autistics and break up the spectrum and who been way way way too successful in defining the incorrect perception of what the ND movement is about.

a lot of non verbal autistic support neurodiversity

The author was born in 1990 - at the time in the Uk, all early intervention was Lovaas-based. TEACCH and PECS is what he wpould have been exposed to. I rreckon us int he ANI-L and INLV community would have been workign against his mum in putting Larry Arnold onto NAS's board. I remembeer the mid-90s AGM to this day.

Lorna Wing was working on the spectrum model in the early to mid 90s...

I was taking part in all the research that would later underpint he neurodiversity model at the same time...


Suppose it's somewhat predictable that the last cohort of ABA-onyl folks would comprise the Autistic Dark Web..

It's closed to further comments . I guess it got too heated .

There are a couple of points that I do not agree with at all with what the author is saying. The first point I do not agree with is that nonverbal Autistics in nappies do not have the ability to speak for themselves. I know that there are many of them who are perfectly able to speak for themselves if given the communication aides that work for them. KingdomofRats was a fine example.

Secondly, I do not think that an Autistic person with an IQ of 30 has an IQ of 30 BECAUSE he is Autistic. I think that intellectual disabilities can be comorbids but are not because of the Autism. I have not looked at the diagnostic criteria in a long time but I do not believe that certain IQ levels are required for an Autism diagnosis. As far as my understanding goes, IQ levels are used to classify people so that the needs of their severity levels can be met. If I am wrong, feel free to correct me. But this is an important point, if I am correct, because "true Autism" should not be defined because someone has a low IQ and needs that kind of support. "True Autism" is exactly what it is. It is a diagnosis given to anyone who is significantly impaired in a number of categories in the diagnosis. Even if the impairments are not visible to the superficial eye, they are still impairing. Even if the help that someone needs because of those impairments might not look just like the help that someone else needs who might have motor skills issues or incontinence or nonverbality, it does not mean that that person does not require significant help. I am a perfect example of this. I LOOK like a level one who could pass for an NT but I actually tested and scored a level 3 and I need very substantial support even though the support I need does not look like the support a nonverbal person in nappies needs. But just because my support looks different does not mean that I am less impaired.

The reason I say this is because, as ASPartofme stated, I do not believe that Autistic people, especially adults, who have lived with their condition their entire lives, are any less qualified to advocate for the entire Autistic community than NTs are. We understand things in our experiences that most NTs will never be able to even thoroughly grasp or comprehend. The other thing that I like to tell people in this regard, is that in order to get a diagnosis of Autism in the first place, whether we are "high functioning" or "low functioning," we all have to meet the requirements of the same diagnostic criteria. Even if our severity levels in each area can manifest differently or can be on very different levels, we all have to fit into the same criteria in order to get the diagnosis. We all have to be impaired on a significant level in enough of the categories within the diagnostic definition.

The other problem with what the author is saying is that he is really generalizing. That kind of thinking really upsets me. He is speaking as if a "high functioning" person is always high functioning in every area across the board and all the time and as if a nonverbal person in nappies is always low functioning in every area across the board all the time. I know that he is wrong in his implication of this. People who are assumed completely not able to do anything except to soil themselves and involuntarily bang their heads are much more capable of so many things than others like to think. And I am not 100% convinced that head banging behavior is always involuntary. Mine sometimes is but I don't think everyone's is. I think that a lot of these nappy wearing nonverbal Autists bang their heads all day and lash out of sheer frustration and anger because they have so much to express but no one is making the effort to understand them and they are thus being treated like nonhumans whether that treatment is intentional or not and they know it and feel it. Most of us know Carly Fleishman's story. So I think the author is not quite on target in these areas.

He is also an Aspie but I wonder if he really understands the severity of struggles that so many of us "high functioning" people deal with on a daily basis and how crippling our struggles are even if we look like we have it all together or look NT at first glance.

And maybe we should separate cancer and only call it real cancer if someone is in stage 4 on a death bed but someone like my close relative should be allowed to have what he has be called cancer because it is slow non aggressive type that won't kill him in a few months. He is just as cancerous as anyone else. His leukemia is just as legit as anyone else's.

I didn't read the article but have an opinion anyways, which might be completely irrelevant: Analogy - Burn victims. There are decision points for various treatments and support -considering which body parts and percentage of burn. One does not say to the person with a 1% on the big toe --- that's *not* a burn - it is, but clearly it's not the same experience as a 90% burn. (Hugs for burn victims.)

Maybe we need a new pdd-nos in the dsm 5? For those in the grey area. I have a gut feeling that it's part of the problem. Before, they could put someone in that category if one didn't quite fit the requirement or if the severity is too mild, now they have to make a probably difficult cut.

I 'm not sure where I stand as to functioning level (or the ICD 11 equivalent) . I would say I'm not level 3 , but the truth is I need quite a lot of support to maintain independence . With short term, verbal interactions I'd come across as intelligent if perhaps a tad odd. That would be my interaction with most people. However I struggle when it comes to practical skills. The only thing I'm reasonably OK at is money management. Of course struggling with practical skills is not something most people are going to see.

I do think some people on the spectrum can be more capable than a cursory interaction with them would suggest . I also think the opposite can apply . Overestimating or underestimating a person's ability to function are, to my mind, both problematic .

It's premature to divide up the spectrum beyond severity levels.

I do think research needs to focus more on the specific problems of the most severely disabled autistic people, rather than on trying to "cure autism" in general. And by most severely disabled, I primarily mean disabled in terms of (current) ability to use language-based communication, not just severity of what are currently defined as "autistic" traits per se. Indeed, the primary sources of distress for severely disabled autistic people and their caretakers are not what the DSM 5 would define as their "autistic" traits per se, but rather their lack of language-based communication, together with injurious behaviors toward self and others -- these latter behaviors most likely being caused, in part, by frustrations due to inability to communicate. So, IMO, their lack of language-based communication needs to be emphasized in autism research much more than it is now.

Anyhow, if the point of a proposed reclassification is to make a separation based on IQ and (current) ability to use language-based communication, then bringing back the DSM IV classifications doesn't quite do it.

Even under the DSM IV, there were people diagnosed with "autistic disorder" who had high IQ and could talk, although they were a minority among people diagnosed with "autistic disorder." Indeed, most of the founders of the autistic rights movement where people who had been diagnosed with "autistic disorder" (DSM IV) or even "infantile autism" (DSM III), which had an even stricter definition than "autistic disorder."

Contrary to what is apparently a popular belief among parents of severely disabled autistic children, "Asperger's disorder," as defined in the DSM IV, is NOT synonymous with what was informally called "high functioning autism." The latter term referred to people diagnosed with "autistic disorder" or "infantile autism" who nevertheless had average-to-high IQ and could talk, albeit with a significant delay in learning to talk. On the other hand, part of the definition of "Asperger's disorder" is that there must be no significant speech delay.

Most of the founders of the autistic rights movement were people who had been severely disabled as children but eventually learned to talk and then managed to get a good education. (For example, Jim Sinclair learned to talk at age 12.)

Some documentation regarding the meaning of "high functioning autism" vs. "Asperger's syndrome":

Here are the actual DSM IV diagnostic criteria for "autistic disorder" and "Asperger's disorder". Note the absence of any requirement that people diagnosed with "autistic disorder" must have a low IQ, or that they must never learn to talk even after a long delay.

Looking at Is There a Difference Between Asperger's Syndrome and High-Functioning Autism on Tony Attwood's site:

^^ Whilst I can see that that there probably isn't low functioning Asperger's I don't think it's exclusively high functioning either . IMO it straddles moderate and high functioning .