Sorry I have to ask this

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Just going off on a train of my own thoughts here, but sometimes I wonder if it would make everyone happier if Level 1 ASD were to be just split off into something else that isn't even called "autism" anymore.

Like the Asperger's label used to be.

It's a spectrum, and there are even "Levels" acknowledged now.

Ezra's school has children who are affected enough that some may need around the clock care for all of their lives.

Ezra seems to question those of us who don't need assistance of that nature. How can we be autistic too?

Would a person asking that question just be happier and more accepting of those people, if they were to be called "Asperger's" again, officially?

It's funny. I'm a Level 1 diagnosed person who has no problem dealing with the fact that the label under which my diagnosis lives also encompasses people with more intense versions of the impairments that got me my diagnosis. I'm okay with sharing the spectrum.

Yet those very people are the ones who don't seem to want ME on it.

Last edited by BirdInFlight on 27 Dec 2016, 2:36 pm, edited 1 time in total.

I do understand - my nephew (in law) is severely autistic and in many ways his life is very different to mine. The care he needs is constant. Yet, at the same time I see glimpses of myself in him - though obviously watered down. I need lots of daily living support (can't safely cross roads, can't cook unattended) but work with people but it's miles from his support.

I think one 'interesting' thing is that in my baby videos, I clearly regressed at around 16-18 months though I didn't lose any language skills/fail to develop them. But you can tell something is off even at that age, especially when compared to videos of me at 12 months.

My mum was palmed off a lot when I was small. Then, at 6 years old I was diagnosed with a hearing loss and my parents stopped looking for answers. I think a lot of my communication difficulties were put down to my hearing loss. So were my social difficulties.

This behaviour is very interesting to me, it is seen in every kind of group; from patriots to pop culture aficionados, to people living under a diagnostic label. Spectra within spectra wondering, arguing and striving to define what is and is not under the remit of their respective label. I don't get it, but it's fascinating all the same.

Yes. I see this a lot in the vegetarian world.

I don't think that the intent of this thread is to intimate that those requiring less support should not be recognised on the Autism Spectrum. I think that it was an innocent question regarding the mechanisms causing a lack of early identification of ASD, as well as the ability to successfully pass as NT. I don't think that anyone here is trying to boot anybody else off the spectrum.

FandomConnection -- there is history behind why I posted that remark.

Ezra is a a great member of this site, and an asset.

But this is not the first time he has asked this kind of question about people on a different part of the spectrum -- and although he words it nicely on this thread, in the past he has expressed a much more outright cynicism of "higher functioning" autistics, in which he has all but claimed he doesn't really believe these people's diagnosis.

In the past, a couple of years ago, he was being very, very cynical about this and had a very nasty argument with me about it, in which he was very disrespectful, calling my life "50 years of baggage".

So there's a history. And he keeps on about this every once in a while. Same questioning.

I think Ezra has not yet been in a situation in which he has to push his limits with regard to surviving in "the real world."
Ezra, as you overcome obstacles in your life, you will become aware that people can survive neglect and ostracism despite their disabilities.

I think people can naturally have or develop the capacity to become very good actors/actresses in daily life, especially around strangers. It's not unlike how a sufferer with depression can seem utterly fine, even happy, until the mask inevitably slips off when they're alone.

To use me, as a person who has very recently received a diagnosis, as an example (but not a justification):

- I 'pass' a lot of the time but have always been perceived as more than a bit odd by my family/people I know. This oddness has played to my advantage as being viewed as having a different take on problem solving and a unique frame of reference/observation that people find amusing.

- Having discussed it with a couple of people, they have said that retrospectively, my diagnosis makes an awful lot of sense

- My special interest, being a physical activity that I did in a competitive/professional capacity for some years was interpreted as dedication rather than outright obsession

- I have substantial social difficulties and much of what would be my social life are activities that appear social on the surface but are largely individual pursuits. My social interaction strategy allows me to be around people and appear functionally normal/funny for a time but it is hugely demanding and exhausting keeping it together.

- I have a long history of other mental health problems that perhaps masked my Autism diagnosis, so it wasn't exactly smooth sailing before either.

- I simply didn't discuss the ins and outs of my sensory issues and other problems for fear of being seen as crazy/crazier

- I am very academic and articulate (to a point) and so if it wasn't interfering in my achievement, my 'odd' behaviour and habits as a child weren't a problem.

- This all said, I can go for long periods where I am entirely not functional and when it has come crashing around me it has cause all manner of difficulties in my life and what relationships I do have.

With my parents' denial, both are medical professionals, and are well aware of the presentation of ASD. I was kept down in preschool for lack of both social skills, and motor skills, but was not investigated for ASD or anything else. I even told my mother once (I was 12) that I have difficulties with social interaction, and she yelled at me, saying I am 'not like that'.

I have also been punished for ASD-typical behaviours. For resisting physical interaction, my mother and father have forced me to hug them for excessive periods of time (a minute or more). I have told them that I don't like it. For stimming in public (rocking during a concert), I was grabbed hard by my mother, and told quietly that I was behaving like a ret*d, and even young children thought there was something wrong with me. She held onto my arm tightly, and digging her fingers in, for the rest of the night. I had a mark on my arm. She has also told me at the dinner table, in front of everyone, that I cannot leave until I have had a 'proper conversation' with her, because she knows that conversation is hard for me. If I made a mistake (like expressing a different opinion to her in the conversation) she would yell at me, and tell me I was acting stupid on purpose.

I have learnt to repress my ASD traits when with my parents, or risk punishment. Because of their denial, I have never had instruction on social skills, or anything else. I was suicidal for several years simply because I wanted to never see them again (I'm fine now). I never told them about it, because I don't trust or like them. I have to pass more at home than at school. Anybody who has accepting parents is very lucky.

My mother totally disagreed with the change in the DSM because she still sees Asperger's not being the same as autism. I feel the same way too but I have seen too many people having a diagnoses of Asperger's when in fact they have classic autism so hence the merge. But I think they should make a completely separate condition which they have, they call it social communication disorder and it's not autism.

I do genuinely hope, actually, that Ezra never does have to face any serious obstacles, but continues to be able to have good care. I really want this to be a world in which people with autism more severe than mine have a secure life no matter what.

I also wish there was more help for those of us who supposedly don't need as much. Because even though some of us in that other part of the spectrum are expected to just "get on with it," some of us are struggling very badly.

I believe my language impairment and development was blamed on everything about me like social skills, socialization issues, being too detailed in my speech, taking things literal, not knowing the rules of having a conversation etc, so all this was blamed on my hearing loss and language delay. Plus I had cluttering. But yet everyone ignored my rigid behavior like wanting things a certain way and always wanting to do things the way I was taught to do it and not liking change in my environment. There was only one social worker that called it autistic like behavior and my school district noticed it too so they wrote I was an unusual child because I wasn't classically autistic but had some autistic behavior. As if no one would know you can have symptoms but not be autistic because it was either you had it or you didn't. But wait this kid has some autistic behavior so she must be unusual. My mom says me being too detailed in my speech was part of language development but I had grown out of language issues by 6th grade but I was told in high school I tell too many details when I talk and even on here I write long posts so huh. I should have asked my mother last time "if my details were due to language development, then why did the girls on my softball team accuse me of being too detailed in my stories when I was in high school and I certainly didn't have language delay by then. Why did they say that to me?"

I still feel much of the "confusion" lies in the fact that there is the "old autism," and there's the "DSM-IV and afterwards" autism.

The "old autism," like I stated before, had very well-defined symptoms. There was very little doubt that the person had autism. And it was "classic autism" exclusively.

Under the DSM-IV and later, though, autism acquired a much broader meaning--which the general society hasn't really grasped as of yet. When one speaks of autism, an image of the "old autism" reveals itself to many people.

This is what's behind even some psychiatrists/psychologists in 2016 saying that "if one can talk and initiate social interact, one cannot be autistic." They didn't get the "memo" which was the DSM-IV.

Therefore, it is widely claimed that people, especially, with the "milder" forms of autism are "excuse-makers" and that ilk.

I believe the solution would be to educate the general society about the fact that autism is now a "spectrum," rather than a single disorder.

Right.
To EzraS: I am currently seeking an assessment because I am unable to function normally in everyday life. As I have detailed above, I have been forced to pass anytime I am with my family, but I still have great difficulty. If diagnosed with ASD, I would be on the higher-functioning end of the spectrum. A diagnosis of ASD would mean that, at this point in time, that is the condition which best describes my presentation. Therefore, as psychology/psychiatry is imprecise, there is not currently a described condition which fits my presentation better. It is not a matter of all people on the Autism Spectrum having the same magnitude and manifestation of difficulties, rather psychology/psychiatry would currently describe their conditions as being of the same type.

Yes, it seems to me that the Asperger's designation was useful in signifying that the person was able to function yet had a set of impairments marked enough to warrant a diagnosis.

It's just that this set of impairments seem to be similar to the set of criteria for autism, just "watered down" as someone else put it.

The social communication diagnosis might be useful, except that Asperger's criteria (or ASD level 1 as it is now) encompasses much more than only the social impairment.

It's an interesting dilemma though.