Do you ever feel annoyed about what people think of mild AS?
daydreamer84
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This is what I'm annoyed about. My mom knows that my papers said "mild," but there is apparently nothing mild about my AS according to her and my counselor. Even diagnostically mild is still prominent.
Yes, I'm the same. My original papers ,which were given to me by a psychiatrist when I was 13, said Asperger's and explained that it was related to Autism but was milder (this was when Asperger's was a new disorder, so the papers explained what it was). They said that I had "some ability to relate" as an observation from the interview while also stating the results of ADOS or some similar acronym of formal test done on me. The psych I see now doesn't think I'm mild at all, and my mum agrees that some of my symptoms are more severe. Overall, I think I'd be on the milder end but mild AS is still a significant disability not just a quirk or a difference. Of course it's a difference but so are many other neurological disorders, Down Syndrome is a different distribution of chromosomes, cerebral palsy is a brain difference. Left handedness is a difference and so is choice of shirt colour. A difference says very little. ASD is a difference and a disability.
I think it's very arrogant of people who have ASD or think they do or might to think/say that ASD is just a difference but that down syndrome, William syndrome, bipolar disorder, intellectual disability etc are disabilities or disorders. For those who think these are all differences and not disabilities, I disagree. They (including ASD) are all differences and real, significant disabilities.
ASPartOfMe
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It puts people with "mild" ASD's in a position where it makes it very difficult to be successful no matter what they do. The world expects you to tough it out. If you can't do so you are regarded as lazy, excuse maker or a faker. If you can tough it out at best you will be constantly stressed and unhappy, at worst you will break down. When that happens you are considered weak and a loser as well as a burden to the "hard working taxpayers" .
It also means people in high positions with respected degrees can say things about us that would get them suspended or fired if they said the same thing about most any other minority.
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
I think what would help a lot would be if society gave people with "mild" ASD or BAP the option to be left alone.
I want to be able to go about my life, to work on the things that I consider important, to communicate only with those who I consider important, and not worry about social rules and conventions. The latter is best achieved by not participating in NT-style socialisation. The problems start if society has social rules that mandate that everyone, including all candidates with "mild" ASD and BAP, participate in a range of activities that involve socialisation.
Path A: Not to participate in the social activities expected by the surrounding culture.
Social result: Being perceived as aloof, rude, and uncaring, and receiving corresponding comments.
Personal result: Being able to put talents and passions to the best possible use, in many cases producing results that are beneficial to society at large.
Path B: Forcing oneself to participate in the social activities expected by the surrounding culture.
Social result: Burning extensive energy to avoid being perceived as aloof, rude, and uncaring, and yet still making social mistakes, and receiving corresponding comments.
Personal result: Not having the energy to put talents and passions to the best possible use, leading to frustration or even depression.
My personal philosophy is to assume that everyone is already trying to be a good citizen, especially in the case of ASD or BAP. Together with 3 friends I run a software business ? each one of us works in a different location, we collaborate remotely, and we don't socialise NT-style. Three of us, including myself, are BAP or "mild" ASD. I avoid pushing my colleagues to work "harder", and they pretty much do the same for me. All of us know that each one of us is intrinsically motivated, and if we make mistakes, that's part of learning ? as perfectionists we beat ourselves up enough, no need to exert any NT-style group pressure.
I think I am extremely lucky. It took more than 20 years of conscious effort to get to this point. I don't make friends easily, and I abhor socialising. The only way to reduce sensory overload is to modify the environment accordingly. Not socialising is a key element on the route to a reasonably happy life. The notion of "learning to tolerate" a higher level of sensory input is counter-productive. It leads directly into path B, and once you reach the point of burn-out, society may view you as unproductive. Then, surprise, surprise, "mild" ASD may be reinterpreted as not-so-mild.
I suspect that to many people with mild ASD or BAP path A is not available in their local context.
The bottom like for me is, not what you have or to what degree you have it, but how it's impacting your life that matters. When I was going to school with 200 or so ASD kids, we were all one school. No one knew what level or or type of autism the other kids had. We were all just ASD. Lots of us have problems in addition to our ASD as well. Most of us are here on WP are here for the same reason why me and my classmates were in that school. That's all that matters.
Very well said daydreamer84, I think the problem is that people stereotype everything and this also apply's to AS and well just about everything on the planet and admittedly one thing gets tied with one common saying to make things 'simple' which is to speed things up in the terms of association but is normally extremely wrong and just brings about mostly negative things. People AS or not are all an individual and different meaning no one person AS or not can be put into all the same set category's and this also apply to NT's to with NT's being in the same stereotype groups for people with AS. To conclude I basically hate the idea of categorization, the word will never improve until as silly beings stop grouping each other so much, we need to learn to see one as themselves only and that things like religion and color are just who they are (that they are jewish etc) not in a term which categories them as something as though they may follow the same religion they are all individuals still.
A good example of the contortions that some people go through to present themselves as socially acceptable: http://www.nzherald.co.nz/opinion/news/ ... d=11276717
...And to be a shy person in our extrovert-worshipping age can be seen as being inadequate for the task of relentlessly positive self-presentation. I recently wrote a memoir called Shy as part of a PhD in Creative Writing at RMIT University and have been exploring the different definitions of the word "shy" as part of a quest to understand the impact of shyness on my own life story...
...Part of my research involved interviewing my mother, Melbourne University psychologist Professor Margot Prior, who has been studying temperament for more than three decades. In her view, all children fit somewhere on a spectrum called "approach-withdrawal", ranging from the most engaged and extroverted kids to the most withdrawn, fearful and anxious kids. For the shy ones among us, this fear comes from our biology, specifically from the reactivity of our nervous systems. American psychologist Jerome Kagan has studied the physical symptoms of so-called "timid" and "bold" children and found in the timid ones a neural circuitry that is highly reactive to even mild stress....
Note that the words autism, ASD, or BAP are not even mentioned, even though the author's mother specialises in autism research (see http://www.latrobe.edu.au/otarc/about/margot-prior-wing and https://www.researchgate.net/profile/Margot_Prior).
Further interesting statements from the above article:
I now call myself a "shy extrovert". If I was an introvert, I might be quite happy to remain in the background and avoid social situations. Shy people long for social connections but have to fight through a thicket of fears to make such connections.
The author seems to fit the profile of an extroverted Aspie. I sometimes wonder whether extroversion and ASD really fit together, or whether "extroversion" in the ASD context is simply an attempt to go down path B (see my post above), based on the assumption that with enough effort social mistakes can be avoided, and with it, the negative reactions.
My own digestive system has reacted to decades of nervous stress by developing a range of food intolerances.
Extroverts are supposed to enjoy socialising, and supposed to refuel their batteries while doing so. I am not sure how the latter is compatible with the effects of ASD anxiety and sensory overload.
I remember, many years ago, long before I had heard of ASD, I also convinced myself that I was not entirely introverted, but rather somewhere on the middle ground towards extroversion. That phase didn't last long. I realised that I am extremely selective when it comes to engaging with others on a regular basis. In particular, networking is one of the activities that I dread, and I avoid it as much as possible, to minimise sensory overload.
"Mild AS" is certainly not something to be dismissed or trivialized. In fact, milder cases can be harder to deal with precisely because they are mild, because it is harder to find help. Many people with mild AS live in endless cycles of effort and burnout, trying to keep up with the NTs around them without having any accommodations--either because they've been convinced that they don't need help, or because they simply can't get any since they're thought of as "too high-functioning". There's a stereotype that disability must always be severe and obvious, and since these people aren't severely or obviously disabled, they are often judged as though their disability were a willful, rebellious or malicious decision. Some even judge themselves that way, coming to self-hatred and a feeling of worthlessness.
Severe AS has its own problems, but I can't trivialize mild AS; it's not a trivial experience to have. It's not severe, it's not obvious, it doesn't define a person or take over their identity--and yet it's still a big enough part of their lives that many of the assumptions made about neurotypicals no longer quite apply to them.
I relate to this. I didn't know til now what it was that I was fighting against but it has resulted in a lot of self-loathing, grief, anxiety and years spent with depression. I thought I was crazy and insecure and weak. I didn't want to have my own children because of it and the fear that they would have the same problems I did and do. Whatever it is, it's genetic; my father has worse problems than I do. The men on his side of the family often don't turn out "right" and we girls are different to "normal" girls. We didn't have insurance growing up and sometimes parents think something will go away if they ignore it or that it isn't so bad if the kid is doing okay in school or they don't put all the pieces together and see a pattern of issues so real problems can go unacknowledged and unsupported. I agree that this is a difference, and a DISABILITY. I vacillate wildly on a daily basis between knowing this is what I have to doubting it. But since reading about it and understanding all this, I have been a better person because now I can validate these problems and tendencies and can do something about them. I don't feel so powerless anymore. I don't know if I will ever be able to confidently claim the "label" but I also know this is one of the best things I've ever been "obsessed" with. And for the first time I feel a sense of "sameness" with other people.
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RDOS Aspie Score: 145 or 144/200 Aspie, 68 or 57/200 NT
Defies categorization. A mixed bag.
I agree with what has been written in this post, can't quote because I am typing on my cellphone but totally agree about stereotype, mild asperger struggles being misunderstood, categorizing people in groups being harmful more often than not, the romantization of aspergers, etc
know the OP doesn't want to talk about his friend but I have to comment that your view on autism is unrealistic. Autistics only doing logical things and thinking logically is just not true. And literature and social rules ARE logical and many aspies like to study the logic in it me included. Just because you can't understand the logic in it doesn't mean it is irrational and doesn't follow patterns.
also assuming things from situations without using logic is being intuitive. Many autistics are intuitive!
You're right on the money EzraS. No matter where you are on the autism spectrum the impact is very real, with very real and difficult challenges to face. Some of us carry heavier burdens than others but we all have burdens to carry.
Even mild Asperger's has significant and real challenges for those who have it.
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Diagnosed Asperger's
yes, i've at least seen plenty of people who have this attitude that people on the milder end of the spectrum are either self diagnosed hypochondriacs who are just a bit "nerdy" or "socially reclusive". Or they have been misdiagnosed under a relaxed testing regime, which they believe diagnosis personality traits over malign symptoms.
On quite a few occasions i've noted such individuals to be parents or carers for individuals on the highest ends of the spectrum that require all round care and these individuals seem to feel that because of the physically extreme nature of there situation that it could require it's own separate diagnosis (in some cases preferring older terms like Kanner's baby to autism to describe there situation).
I think to write off asperger's as just being a bit nerdy could be a pretty quick indicator of a lack of any really experience with it.
I admit maybe there could be some issue with misdiagnosis as there's some fairly sound theories that even autism may be linked to other things and vice versa that they may never be so clear cut as we would like, but perhaps there is a big difference between saying this and saying people with mild AS are just making a fuss out of nothing (because oh look how much worse it could be).
Thing is people on the milder end of the spectrum could be those who are most left to fend for themselves as often the resources are concentrated towards those on the higher end of the spectrum. So are not always left in the better situation as a result.
And i've definitely become aware over the years that the amount of ignorance about autism as a whole (even surprisingly from people who have had some kind of exposure to it) is pretty chilling sometimes (after all it's still genrally accepted that we are looking for a "cure" to autism rather than seeing it as a difference).
It also means people in high positions with respected degrees can say things about us that would get them suspended or fired if they said the same thing about most any other minority.
well put, i often feel like this could be the bigger issue that we are possibly a million miles away from having a public discussion or some kind of understanding about.
A friend of mine who's dealing with the government in the UK right now said to me the other day that "all he want to do is get out of everyones way and keep drawing comics' which is what he's good at and is trying to make a living doing. Then on being forced to goto the disability benefits office they told him "we're not gonna fund your luxury life style for you to sit around and draw comics everyday" and so are forcing him instead to go work (for no money) stacking shelves.
It's truly distressing being face to face with these attitudes and feels like staring into the face of madness sometimes.
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