Published on 12, July, 2020
I have Asperger’s syndrome. Why do they class Asperger’s and autism as the same now when they are so different from each other? I mean Asperger’s is a genetic condition which affects the way someone thinks and makes them slightly different and socially awkward and more anxious. Autism on the other hand in the classic sense is a debilitating condition characterised by the inability to speak and vocalise words, intellectual disability and aggression with violent outbursts. Why do people with Asperger’s dominate the perception of autism. Everybody seems to forget about these kids who cannot talk at all. People view people like us people with Asperger’s as what autism is. This is not the case classic autism as it used to be defined was basically someone who regressed around the ages 2-4 into losing all speech and ability to function. It seemed to start around the 50s to 60s. Whereas Asperger’s has been around for maybe thousands of years. There is cases documented of people who may have had Asperger’s way before the 50s. A woman in Russia in the early 1900’s at the beginning of that decade worked with under a dozen kids who would have been declared as autism highly functioning or Asperger’s syndrome nowadays. These kids were quiet and inhibited but showed great ability to work machines and understand mechanisms of things and patterns. However it appears that people who have Asperger’s are born with it and always have it. They may take a while to develop language but they never develop it and lose it forever the same way someone with classic autism does. I have known people who had one child who lost the ability to speak and function about 2-4 years old and never spoke again and had to be put in a care home. But none of the boys other siblings had this happen to them. So how do you explain this sudden regression in some people that doesn’t happen with every other kid in that same family. Something must be causing a sudden regression especially if it’s only in a specific family member and no others. Asperger’s on the other hand is genetic and if one family member has it they all are almost garuanteed to have it more or less. If anyone has any thoughts on this please do share them as I would like to make more sense of this.
Martin said:Asperger's is not in the current clinical diagnostic manuals. It was removed around 2013, so very few people have been so diagnosed since.
firemonkey said:I was dxed with Asperger's in 2019
There are two major standards that are used internationally for the diagnosis of autism: DSM (an American standard classification that is used elsewhere, including by some assessors in the UK) and ICD (published by the WHO and also used in many countries world-wide, including by some in the UK).
Under DSM-5, autism has been diagnosed since 2013 as Autism Spectrum Disorder Levels 1-3.
As you were formally diagnosed with Asperger's in 2019, this would have been under the ICD-10 guidelines. ICD-11, which was endorsed by WHO members in 2019 and published in 2022, removed "Asperger Syndrome" as a formal diagnosis.
So no new diagnoses should reference Asperger Syndrome, other than perhaps as a passing additional comment that it might previously have been labelled as such.
People who were formally diagnosed with it previously are, of course, free to continue using it - if they wish. My earlier comment refers to one reason why they may prefer not to do so.
Neurospicy! I like it!
Profound Autism is difficult for everybody the person themselves, their family and friends etc, but is it that different to someone with severe epliepsy or other serious disabilities? To me you see fixated on Aspergers/Autism and I wonder why? I don't doubt your sincerity about wishing seriously affected people could get better help, but the fact is we don't know enough about the causes of Autism. People with serious autism are not heard in the same way as other seriously disabled people aren't heard and it's sad and terrible. It's your feelings about your own autism/aspergers that get me asking questions.
Personally I do not care for labels! I do not like the connotations around Aspergers on a moral level. So now we have ASD / ASC, again, I do not like the terminology describing a disorder or condition. Why cant it just be AS (Autism Spectrum). I think this would convey the information that we all have commonality but are different. However, labels are designated by neurotypicals to fit into nice NT boxes.
One I do like is Neurospicy
Yellow tree 118 said:she invented it based off Hans Asperger’s work.
Lorna Wing also pioneered the idea that autism is a spectrum condition.
Another factor to keep in mind is that many autistic people who were originally diagnosed with "Asperger's syndrome" (back when it was an official diagnostic term) prefer not to use it as they find it morally repugnant.
"Hans Asperger worked with the *** during the Holocaust and his abhorrent descriptions of some autistic children as being less ‘worthwhile’ than others led to dozens of children being sent to a Nazi clinic, where they were murdered.
There had previously been debate about how much Hans Asperger knew about what the *** were doing, and whether in fact his work had saved some autistic children from death. However, more recent research has discredited this narrative by showing that Hans Asperger was aware that he was sending children to their death at a Nazi ‘euthanasia’ clinic and had made statements in line with the Nazi regime’s murderous ideology of ‘racial purity’."
From; https://www.autism.org.uk/advice-and-guidance/what-is-autism/the-history-of-autism/asperger-syndrome#:~:text=Hans%20Asperger%20worked%20with%20the,clinic%2C%20where%20they%20were%20murdered.
I guess it because I feel sorry for people who are really struggling. You know there is people who have profound autism who don’t want that life. I just wish someone could help them. It’s easy for us to say how great autism is because we don’t have profound autism. Their voices never get heard. It’s sad. Do you not think?
Why does the distinction, if there is one, between grade 3 autism and grade 1, that used to be called Aspergers bother you so much? You write a lot of posts about this sort of thing.
There is a massive difference. Someone who is completely disabled that has to live in a care home is different from someone who can live independently with minimal support. Lorna Wing was an important researcher who argued for the diagnosis of Asperger syndrome she invented it based off Hans Asperger’s work. She came up with the diagnosis in 1980’s
Might be of interest.
www.frontiersin.org/.../full
Very interesting about the saddle.
I am wondering if this is because there are far more autistics in the middle who go unnoticed and/or have no issues and so never get tested and included in the statisics? I think there should be an ASD Level 0 category. It is so rare for stats to not form a bell curve, so I wonder if it is in fact really a bell curve, but missing the middle.
There is support (some of it genetic) for viewing what might be considered 'profoundly autistic' people as autistic people with 'comorbid' intellectual disability. After all, those people with intellectual disability who are sociable and outgoing are not called 'profoundly neurotypical'. Unlike intelligence in neurotypicals, which follows a standard bell curve, most being near the middle with few at the extremes of intelligence, the graph of autistic intelligence distribution is saddle-shaped, with fewer people falling in the middle and more on the extremes of high intelligence and low intelligence.
Think of a spectrum. A spectrum of abilities and support needs in all the myriad aspects of life. You may find a quick read in the DSM5 revised '23 cam illuminate. Also reading the book "Nuerotribes" will give a sense history and back story on the terms. They are but terms. having labels and hoping for one and not the other is, for me, unhelpful. Iwas releaved to have two finally under one term. They fall within the spectrum for autism. NO difference.
I grew up in 90’s. Few times I was picked by teachers and commented that I’m autistic or probably autistic. I had selective mutism for some time at school, but even after that and before that I never learned to interact with a group. And it’s my life long persistent problem. One of many I have. I’m not diagnosed, but quite recently I heard from a professional that I have many autistic traits and most probably I have Asperger. Sometimes it’s hard to tell them apart. In my family neurodivergent traits run in our blood. My mom, grandpa and me are very much alike. That’s why my mom answered my teacher that there is nothing wrong with me, I’m normal like her. But there are much more than the genetic factor. Also when we look at the diagnostic criteria- Asperger also falls there. Persistent problems with communication and social interactions (not necessarily meaning the person is severely disabled or unable to speak) but having problems to communicate on non verbal level, not understanding cues, talking too much or not enough, having restricted and very intense interests, maybe a low functioning person would study a closet for hours, high functioning person would sit hours and study derivatives. Once here on the site someone published details of their diagnosis, personal details removed (higher needs). A lot of the issues mentioned there affect also me. The difference is how I manage it and keep it for myself to not disturb others. That person was unable to mask like me. But the stress is similar. I think we all need to remember that there are in both groups autistic and allistic (I don’t like dividing people) - there are people with milder and severe disabilities. And I’m not sure if it’s true that the high functioning autists take the whole picture of autism, taking into account how often people hear the phrase: “you don’t look autistic”
As near as I can fathom it, my Aspergers/Autism (that's what it says on my DX, helpful, huh?) has caused me to experience (In common with a lot of people here, maybe the vast majority) social isolation and other forms of PTSD inducing life trauma, which adds to our problems, and may be the complicating factor that makes it so hard to nail down what Autism actually is.
you not the only one I'm autistic too and maybe we can be friends also and new here in the community and maybe we can also hang out
Think of Autism as a difference with Typical communication and social linguistics, which affects the ability to mature with peers, a difficulty filtering out incoming noise (the same mechanism responsible for higher anxiety but also hyper-problem solving), and the hyper-focused, Monotropic brain. Now, add or subtract other disabling or intellectual factors keeping these the same. Add or subtract supportive family and community. Add or subtract being allowed to learn and thrive in ways which tap and develop potential. In either scenario you're still autistic.
Yellow tree 118 said: Why do people with Asperger’s dominate the perception of autism. Everybody seems to forget about these kids who cannot talk at all. People view people like us people with Asperger’s as what autism is.
By perception I assume you mean through media exposure - largely through entertainment (TV shows / films).
Here the non verbal autists are unelikely to make interesting viewing for an entertainment program whereas having the likes of Sheldon Cooper etc get into amusing social misunderstandings makes people laugh.
There are some good cases of "classic autism" receiving media attention though - think of the film Rain Man where Dustin Hoffman played the autistic savaunt. This required a different lead actor to carry the film as Rain Man on his own just wasn't interesting enough for the public.
That is the essence of it I think.
I was dxed with Asperger's in 2019. I scored at classical autism level for social communication, and Asperger's level for social interaction. I'm neither a highly successful autistic person or one requiring 24x7 care and supervision. I'm in the vast middle. I have cognitive strengths and relative cognitive weaknesses. I've been called everything from a dullard to a genius.
Autism (both what used to be defined as ‘Asperger’s’ and ‘profound autism’) has *multiple* influences and risk factors. Genetics is just one of them, it is definitely not 100% genetic. A better understanding of other contributions to autism phenotypes may help you understand. These include:
this article is more in depth: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6420889/#CR5
Exposure to toxins and natural disasters is also linked, which may contribute to the increasing prevalence. Regression is not limited to the ‘classic case’ of a child loosing the ability to speak- there are also plenty of cases of autistic adults or older children loosing skills after experiencing high levels of stress, even those who may have been diagnosed as having aspergers before. Ultimately we still don’t know “what autism is” on a biological level or why regression happens, and the diversity of individuals on the spectrum means reductionist diagnostic criteria that overlooks other struggles (like sensory issues) is no longer suited to the clinical needs of the population.
Asperger's is not in the current clinical diagnostic manuals. It was removed around 2013, so very few people have been so diagnosed since. It was replaced by autism spectrum disorder or condition (ASD or ASC). It is characterised by support levels from 1 to 3, with 3 requiring the highest levels of support. What you call Asperger's would now be found within ASD Level 1. What you are describing as 'classic autism' would fall under ASD Level 3.
There has been a move away from seeing autism as linear with Asperger's at one end and profound autism at the other. This approach is seen as less than useful, as people needing a great deal of support may not have their abilities recognised and people needing less support may not have their very real difficulties addressed. People with ASD are now viewed as individuals, with individual traits and difficulties, varying one from another.
All forms of autism (ASD) have a large genetic component.
The inability to speak can affect autistic people of all intellects. As a child I had selective mutism at school, I did not speak at school for 3 months after I started, aged four and a half. I have a science PhD, so am very far from being intellectually challenged