100% agree. It’s not something you want. I’m completely over being polite to the people who spout this “I have the symptoms but no diagnosis” line then try to speak about it.
Most undiagnosed child Asperger's, which turns into undiagnosed adult Asperger's, will never be diagnosed by the individual nor a professional. There's a lot of it out there.
My main reaction is due to all the undiagnosed people who swear they have it and attack me for giving my son the help and treatment he needs. It’s an ongoing issue, stemming from ignorance on their part. Hence my lack of patience or sympathy any longer.
A large part of the neuro-devergency community is not fan of the Asperger’s term. The primary reason is that the distinction between Aspergers and Autism was based on outdated—and frankly, problematic—believes around IQ.
This was in the UK though.
Also—since I talking about this—I think many in the neuro-divergence community don’t like High Functioning Autism either (and it is not included in any of the diagnostic tools anyway). The reason cited is that it is rather ableist to call it “high functioning” and would much rather focus on the specif disabilities which needs accommodating.
I was reading about HFA, and I don’t think that exists in the diagnostic tools either. I think the focus instead is to just diagnose people with autism spectrum disorder and then enlist the disabilities which needs accommodating. The more sever cases has a larger set of disabilities. I’m guessing you would have had a pretty limited set.
I think this is the right choice as there is a little bit risk of ableism in separating a disability as high functioning. The reason we give diagnostic is that some people need accommodation for their disabilities, being accurate about which sets of disabilities need accommodation is better in every way, as opposed to a blanket term like high functioning. The term also risks people perceiving some superiority (intended or not) when it is referred to as such.
The term Asperger's was simply a holdover from the man who brought the condition to light. Period. Anything else is inference, and I hold with malice.
See the fact that the new categories still imply a categorical difference and there is therefore still a categorical difference. In fact, the difference between autism categories is generally massive. Whether or not that difference includes IQ would be down to the individual, but often it will. The term Asperger's having nothing to do with it.
What they didn't like was the implication that Asperger's isn't tightly connected to the other autism categories. It may or may not be. They don't know, either. The renaming was a weird point of focus and highly political. What is true is that almost anyone would have a difficult time observing that Type 1 autism (formerly Asperger's) bears any resemblance to Types 2 and 3.
Wikipedia has this to say:
> Disagreements persist about what should be included as part of the diagnosis, whether there are meaningful subtypes or stages of autism.
And cites a paper [1] claiming:
> The elimination of subcategories was controversial for various reasons, including concerns over the removal of an important part of an individual’s identity and community, specifically related to Asperger’s disorder, as well as concerns over losing services due to an individual no longer meeting more stringent diagnostic criteria. However, the evidence for the existence of subcategories within ASD has continued to be very weak (Miller and Ozonoff 1997, 2000). Furthermore, the shift from multiple subcategories to a single dimension resulted in improved diagnostic specificity and good diagnostic sensitivity, with over 90% of children with PDDs meeting DSM-5 ASD criteria (Huerta et al. 2012; Mandy et al. 2012), and with the remainder likely captured by the new social communication disorder diagnosis.
It looks to me that if they would have kept multiple categories, that would have been a political decision (in particular, identity politics for thous which identify as Asperger’s). It seems like the current single category / multiple dimensions has proven it self to be a much better approach for diagnostic. That is evidence suggest this is a successful change, with both autism advocates and psychiatrists preferring the current single category approach.
These severity levels do not specify intellectual impairment, only social communication impairment and restrictive and repetitive behavior. Intellectual impairment is specified as a boolean with or without. So basically—as I understand it—what was previously described as Asperger’s is basically Autism spectrum Disorder with this boolean set to false.
I actually went ahead and did some further reading and it turns out that people (both psychiatrists, researchers, and autism advocates) are very happy with this arrangement. Intellectual impairment does not correlate (or correlates rather barely) with other required specifications of the disorder (including impaired social communication) and the accommodations required are vastly different.
ICD-11 has 8 subcategories of Autism Spectrum Disorder, and what was previously called Asperger’s is probably 6A02.0 - without disorder of intellectual development and with mild or not impairment of functional language. (pp. 36)
Note that psychiatrists and researchers alike are no fans of the ICD-11 approach, claiming things like:
> As ICD-11 defines ASD in a broad constellation of symptoms or behaviors that can hardly be differentiated from other mental disorders and autism-like traits, the risk of false positive ASD diagnoses increases significantly. This will lead to further limitation of access to ASD-specific services for individuals with a true positive diagnosis of ASD and likewise disadvantages individuals with a false positive diagnosis of ASD due to delays in access to or even missing out on disorder-specific care (e.g., dialectical behavior therapy for borderline personality disorder). Further, since ICD-11 draws particular attention to high-functioning (adult) individuals with ASD, there is concern that “prototypical” as well as low-functioning cases increasingly become neglected in research and clinical practice. [3]
1: https://iris.who.int/bitstream/handle/10665/375767/978924007...
2: https://www.autismalert.org/uploads/PDF/INFO--DSM%205%20Diag...
As far as I know there is no solid evidence he was involved in that, though there seems to be evidence it did happen.
I don’t tend to tie what I know to Wikipedia until I’ve done the research; too many things I’m knowledgeable about are blatantly wrong there.
My personal feeling is that it’s likely he did these things. At no point is there more than circumstantial evidence he actually did them. That evidence is strong (his job, it did happen, etc) but I don’t think there’s a signed order or the like that would cement it.
The problematic beliefs I was referring to was the notion of high IQ. IQ is a very controversial term in psychology, and has a very problematic history. Even though it was initially conceived exactly for the purpose detecting individuals which may have learning disabilities, it has since grown into something which was integral to the eugenics movement. Today we know that IQ has some racial and class biases which we should probably avoid when creating taxonomies which are then used to describe people with disabilities.
Our current testing to measure IQ has racial and class biases.
I don’t think IQ itself (as a concept) is the issue; it’s our quantification of it that is flawed.
The focus on high IQ is problematic for a number of reasons, including racial and class biases. There are also theoretical implications surrounding intelligence, there is no evidence that there is such a thing called general intelligence let alone that this g-factor can be measured and presented as a single number (why not a matrix or a tensor?).
Having a diagnostic based on such a murky concept as intelligence is indeed very problematic. It is much better to just leave the question of intelligence unanswered when we are diagnosing people with autism. And instead focus on the disabilities each person has. If an autistic person takes an IQ test and measures with a significant deviation (< 70) we can safely say that this person has a learning disability and should be accommodated accordingly. If another autistic person takes the same test and measures normally (~ 100) then that doesn’t add anything to the diagnosis.
All that said, I was curious about it a few months back, and decided to look up how popular IQ tests are among psychologists, and I found out that they are very much falling out of fashion in favor of more focused tools. If a psychologist uses an IQ test, they are much more likely to use the individual subtests and never actually measure the whole IQ of the individual. I didn’t search for how popular they are among psychiatrists though, so IQ might still be a popular tool when making diagnostics, but I would be very surprised if things were any different there, especially now that intelligence is no longer used to differentiate Asperger’s from Autism.
EDIT: I’ve been doing some reading, and I found an excellent secondary source on why some researches and autism advocates want to abolish the term high functioning and in particular to advocate against using IQ to separate autism into sub-categories.
https://www.spectrumnews.org/news/large-study-supports-disca... [PDF]
Of course you are free to disagree with people who’s actual job it is to diagnose autism. But I don’t see what that brings to this conversation.