Is Asperger's syndrome / autism a disability?

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glider18
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24 Jun 2009, 11:28 pm

Kasanova wrote:
...If you're not disabled by it, then surely it wouldn't be AS?


Leading experts say you can take away autism from a person very easily. You simply shut us in a room by ourself---and poof---the problems go away. There is no social communication problems there because---there is no one to talk to. Thus the social and communication problems no longer exist. You would just have a different person in there. Remember---this is each of our personal views. Well, I don't socialize much at all. I have tried in the past---but it's just too awkward. Do I consider that a disability? No, I just don't socialize. No problem for me---I just curl up with my special intense interests that have ruled most of my life. I am quite the classic AS person.

Anyway, where I am getting at with this is this:

We have been asked to express our personal views on AS. I try to make it clear that my view is simply my view---not necessarily everyone else's. I view my AS as a difference---but that doesn't mean I don't have AS. I most assuredly do have AS. I have moderate AS. But---I do not view myself as disabled. I am different, I am challenged in some things, and I am autistic. No one should say that a person who views themself as different rather than disabled does not have AS---remember it is a personal view of each person. I like being autistic. In fact, I am proud of it. I consider it something that has given me great joy in life---wonderful interests, and savant talent in music. How can I view that as a disability? I view it as a difference. I am unique. I am eccentric. I am me. But yes---I do have more negative traits by definition than positives---so therefore, I live by focusing on the positives.


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glider18
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24 Jun 2009, 11:51 pm

I just thought of another way to explain my take on AS as a difference.

I will use some terms here that I don't like, but it will make the point.

AS has definitely screwed up parts of my life big time. I have no friends, and I speak to my neighbor on my east side maybe once a month; the neighbor to my south I have spoken to once ever; the neighbor to my west maybe once every 5 years, and the neighbor to my north maybe once every two or three months. On my first date (I was a senior in high school) I lectured her on the history of roller coasters. On subsequent dates, I carried house plan books along and made her analyze the plans with me. How she ever became my wife I will never know. And I have two sons---it is so awkward to play with them that I have gone to therapy and broke down crying over the frustration and guilt I have over feeling I have not been a good father.

However:

I am like a house. Not everything in the house works. I could keep trying to use the broken appliances and would therefore be disabled. But instead, I have learned to use the things that work and try to ignore the things that don't work. So what if the garbage disposal is broken---I just won't try to use it anymore (like my socialization skills). But that doesn't mean I (the house) am fixed. Instead, I will be different than the other houses and operate differently. Rather than go fishing with my sons the way most fathers do, I will instead listen to them and spend as much time with them as I can. According to my therapist, I am a good father. I am adequately giving my sons what they need---I just do it differently than most fathers do.


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Acacia
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25 Jun 2009, 1:20 am

glider18 wrote:
And I have two sons---it is so awkward to play with them that I have gone to therapy and broke down crying over the frustration and guilt I have over feeling I have not been a good father...... Rather than go fishing with my sons the way most fathers do, I will instead listen to them and spend as much time with them as I can. According to my therapist, I am a good father. I am adequately giving my sons what they need---I just do it differently than most fathers do.

These statements deeply resonated with me. I have a young son, and I've had many of the same experiences. Indeed, I often feel like it is difficult and awkward to play with him. Like I just don't "get" what I am supposed to do. I try and just be around him, read with him, take him outside in Nature, and include him in the things that bring me joy. But I can see his frustration with me. He acts out and misbehaves in trying to get my attention and keep me "present" with him. He rejects some of my attempts at shared activities.

All this can be seen as a complication of AS. For sure, he is not going to have the kind of dad who is signing him up for little league baseball, taking him out fishing, and watching NASCAR on Sunday afternoons. He is, at age four, already expressing interests and personality traits that I find difficult to follow. But I don't think I'm a bad father to him. I do all that I can, and I feel like that is a respectable effort. He'll turn out fine.

AS has been mostly a barrier when it comes to being a parent. I get sensory overload and anxiety when I am around my son for too long. When I get up with him in the morning and he has breakfast, I can't even stand to be in the same room as he is when he is eating his customary banana and bowl of cereal. The sound completely unnerves me, and makes me stim out of control, and I don't like him to see that. Of course I try not to let the stuff get to me, and attempt to focus on the positive. AS also plays a part in my intense love for Nature and Music, and I love to share these passions with my son. In certain ways, AS allows me to remain singularly focused in a way that can be beneficial in my attention and caring towards him.

It's a complicated issue for sure, with many pros and cons. But I truly feel as if AS remains a disability in this way. It keeps me from ever being fully and consistently "present" around my son. It creates problems with verbal and nonverbal communication. The hypersensitivity and anxiety are ever-present. It's not like I can ignore the fact that these obstacles are there. I can learn to work with them and adapt to be my best, but it will always be an uphill battle for me to maintain, when other fathers can just be themselves.

Again, thank you glider18, for your posts. Your personal experiences and attitudes certainly do convey a sense of optimism and the prospect of good things, even if such things may currently seem out of reach.


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ruveyn
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25 Jun 2009, 2:47 am

Kasanova wrote:
My AS has been disabling for me, so it is therefore a disability. If you don't have social or communication problems, how do you even have an ASD?


I overcame the problems by learning/formulating algorithms that made it possible to get along with the NTs. I am even married to one and most of my children (except one) are NTs. I simply learned how to "paint by the numbers" and I avoided many of the social difficulties. In the mean time I prospered in the wonderful world of technology and software and my Aspieness was a definite advantage. I converted into $$$$$.

My childhood was rough, but I soon learned to pass for human. Most of my NT friends have no idea that I am an Aspie. Every now and again my literal mindedness manifests itself and on (now) rare occasions I am socially gauche. But that is a minor glitch. As long as I do not fart in crowded elevators, I am just fine.

With a rough childhood I grew thick skin and hardened my heart. I was regularly tormented by NT male bullies when young so I learned to fight very very dirty. After breaking some wrists and arms and knocking teeth out, the bastards learned to leave me be. When the going gets tough, the tough get going.

Nobody messes with the Zohan or the Ruveyn for that matter.

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Kasanova
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25 Jun 2009, 8:35 am

I wasn't saying you didn't have AS glider. I don't know you and have never met you. I was just explaining how I see it in general - if someone doesn't have problems or difficulties, then how is it AS?

Being able to cover up these problems or deal with them well doesn't change the fact that they are ther. Yes, when they're on their own a lot of AS people are perfectly fine, but then when someone who cannot walk is sat down or lay down, they are fine too. That doesn't change the fact that they have a disability. It's great that so many of us can learn to deal with things and create coping mechanisms etc, but IMO AS is still a disability



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25 Jun 2009, 9:22 am

glider18 wrote:
MJE---Well, I am glider18, and as most around here know---I view autism as a gift. .


Quote:
AS gives you the ability to specialize, superior overall intellect, freedom from the obsessive need to "socialize", a natural inclination towards rebellion and innovation, heightened senses, introversion that breeds creativity and better chances at awesome splinter skills.


Quote:
To be diagnosed as AS in the first place it has to have a severe enough negative impact on your daily functioning. If it doesn't then you're not AS, and you would not be diagnosed as such (although you still might think differently)


The extent of my disability is in direct proportion to the time I spend in the NT world. For the last seven years, I have been the sole support of my family and I am forced to spend most of my conscious time in the NT world. I entered my field before I knew I had AS, before I became aware of what AS is, and with no real understanding of how different AS made me.

With 20/20 vision looking back - knowing then what I know now (everyone humming those country tunes - haha) I would have chosen a career that gave me more protection in the NT world, like a bubble for those kids with no immunities. Then I would have only negligible disability. But my job requires all-day interaction and I SUCK!! Every morning I feel like vampires fed on me all night.

With early diagnosis, good self-awareness, and skilled career counseling, the teens and young adults with AS could likely enter the world as somewhat eccentric but without disability.



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25 Jun 2009, 9:47 am

JanetFAP wrote:
The extent of my disability is in direct proportion to the time I spend in the NT world. For the last seven years, I have been the sole support of my family and I am forced to spend most of my conscious time in the NT world. I entered my field before I knew I had AS, before I became aware of what AS is, and with no real understanding of how different AS made me.

How true! I'm in a very similar position and this is absolutely what I've experienced. I got onto a career path, not knowing how deep some of my social/cognitive/sensory limitations were. So when I finally got a job in my field, I was unprepared, and I failed. Having found out about AS only in the past year, I am still in the process of re-structuring my whole approach to life.

With early and comprehensive support, no doubt my sense of disability would be less.


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glider18
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25 Jun 2009, 10:20 am

Kasanova wrote:
I wasn't saying you didn't have AS glider. I don't know you and have never met you. I was just explaining how I see it in general - if someone doesn't have problems or difficulties, then how is it AS?

Being able to cover up these problems or deal with them well doesn't change the fact that they are ther. Yes, when they're on their own a lot of AS people are perfectly fine, but then when someone who cannot walk is sat down or lay down, they are fine too. That doesn't change the fact that they have a disability. It's great that so many of us can learn to deal with things and create coping mechanisms etc, but IMO AS is still a disability


Hi Kasanova, glider18 here. Right now, sitting in this condo unit in Hilton Head trying to give my family a good vacation---I am sucking. Everytime I try to do something, the sensory overload is awful---and I can't read anyone right it seems. Maybe it is more of a disability for me too. I was just diagnosed at the age of 44 this past November. I try to be open-minded with everything as long as the discussion is civilized. And you are civilized. I try to deal with things from a positive viewpoint, but I have difficulties in life in this NT world. I can see after a lot of thought that there are definite markers here for it being a disability. I do have fun in life with my interests---but that is at the exclusion of those around me. Whenever I operate in the NT environment---I don't do so well. When I am absorbed in my world---I am different. When I operate in the NT world---well---I guess I do have disabilities.

I, and I assume many of us here in this autistic world, just don't like to be looked down on like we are defective. We can do things others can't, and they can do things we can't.


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25 Jun 2009, 12:33 pm

Roxas_XIII wrote:
Well, I for one am not tempted to follow the crowd, and thanks to my intelligence level in part, I have a more mature viewpoint than many others my age. I also think the fact that my IQ is so high that I was able to learn social skills in an anaylitical sense (as opposed to NT's who have social skills in an intuitive sense), which in turn made my AS more manageable and less obvious to the untrained eye.


I think this brings an important point to my view of autism, and life in general: Don't fight who you are. Autistics are told that they need to socialize more and they need to be less obsessive about their special interests. This exacerbates stress and depression, and creates it in those that don't have it naturally. Not only that, but it interferes with an autistic's natural abilities when those that are told this try to become more social or less obsessive.

Now, autistics on the low functioning end of the spectrum are disabled by their autism, and a number of others have comorbids that disable them, or disable them when combined with autistic traits. However, the high functioning end is not disabling by itself. Forces outside of the autism itself must exist to make it disabling.


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25 Jun 2009, 4:13 pm

gbollard wrote:
Michael,

Aspergers is a disability only if you let it become one.

In the early years of your life, it's crippling because people with aspergers are so different from neurotypicals and it makes friendships and relationships very very difficult.

As you get older, you learn to adjust, to build on your strengths and to compensate for your weaknesses.

Eventually, with the right attitude, you can rise above it.

It takes time and effort, but it's certainly possible.



This is a crock of horse manure. But its the sort of horse manure I might have spouted myself when I was younger and still held out hope of finding some employable niche for building a stable future. Get back to me when you're fifty, obsolete in your old profession and unemployable in any new one because your very age raises employers' insurance rates.

AS makes life very difficult socially and emotionally as a youth, during middle age it's easier to build coping mechanisms and almost forget that you have it. But once you pass middle age, unless you come from a wealthy family or own your own business, you're going to find yourself in trouble. Being unique, different, avante garde when you're twenty or thirty-something is chic. Once you pass forty you're just an oddball. Beyond that you're strange and eccentric and a little scary.

In the US, to answer the question simply, Asperger's Disorder, like any form of autism, is considered a qualifying disability under the Americans With Disabilities Act. You can apply for disability benefits; whether you get them will depend on how serious mental health professionals determine the effects of AS to be on your quality of life and your ability to survive on your own.



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25 Jun 2009, 5:06 pm

Oh, come on; it's not that bleak. By the time my generation is fifty, we will hopefully have managed our own disability rights movement, and gotten at the very least semi-equal treatment analagous to what black people have in the United States now.

You have to remember that it's not really, in most cases, the disabled individual that is unable to work; it's that there are these obstacles--in many cases, really minor obstacles--that come up because the workplace is designed for the mainstream, typical individual. Those obstacles can be removed; and a whole lot of new people could enter the work force. The "burden" of disability is almost entirely artificially created when the disabled are shut out of being able to do what they are capable of doing to support themselves. If those who could work were allowed to work, then there would be plenty left over to support those who couldn't. The number of disabled individuals is rather large, and this sort of prejudice is robbing the world of a valuable economic resource. Once they understand that it is profitable to hire us, believe me--once money starts talking--they will make those little adjustments.

Young? Idealistic? Well, can you blame me, when we've got our first "minority" sitting in the White House? It wasn't so long ago that they wouldn't even have let him vote. Things change. They will not always be so bad. And if you are fifty now, I think you will live to see it.


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JanetFAP
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25 Jun 2009, 10:50 pm

Callista wrote:
Oh, come on; it's not that bleak. By the time my generation is fifty, we will hopefully have managed our own disability rights movement, and gotten at the very least semi-equal treatment analagous to what black people have in the United States now.


You go girl!! ! This is a civil rights issue!! !

In my generation, parents of newborns with identifiable syndromes or other non-mainstream appearances (e.g. CP) were counseled to deposit them in an institution before they got attached to them. Kids with profound autism followed at 2 – 5 years of age. Those who couldn’t afford an institution hid their children. Only very dedicated parents kept their children (my mother also breastfed us much to the nurses’ horror) and raised them as part of the family. (oh yes, the good ole days!!)

My sister (an aspie - all four of us are) was one of the first special educators in the country (1970). Her first task was to go door to door following up on rumors to gather up kids for her classroom (a cardboard room), but they were not in the regular schools. We grew up not even knowing such people existed. In 1981, the first institution (New Hampshire) closed soon followed by the second (Vermont). They made a documentary of it and I knew a man who had spent his entire childhood in the Vermont institution. It was not that long ago.

Vermont has been integrating all learners in classrooms since the 80s, but I am in Arizona now where its still pretty scary (remember how separate, but equal played out in racial segregation?). It is great that special educators, enrichment (gifted) specialists, SLPs, etc all support the classroom teacher in differentiated teaching for all student’s benefit, but one of the most important aspects of integrating all learners is that the mainstreamers grow up knowing all sorts of people. Classrooms are melting pots of diversity.

Please know, dear youngsters, that we did not have the benefits you are enjoying. No one had a clue what was even wrong with me let alone what to do with me. It was hard for us then and it still is. But each generation gets closer to full integration and acceptance.

You will succeed!!


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26 Jun 2009, 7:42 am

Willard wrote:
This is a crock of horse manure. But its the sort of horse manure I might have spouted myself when I was younger and still held out hope of finding some employable niche for building a stable future. Get back to me when you're fifty, obsolete in your old profession and unemployable in any new one because your very age raises employers' insurance rates.


Ohhhh. So dark and cynical.

Can I be your best friend? :lol: :wink:

I agree.

As far as I've seen, the ADA helps nobody compared to before it was enacted. Disability groups have cried out that it has only increased workplace discrimination for most handicapped people more than it has ended it. Even then, it most benefits the "obviously handicapped" (blind, deaf, wheelchair bound, etc.). Those with more subtle disabilities can find themselves harder pressed for employment, and it should be no surprise when people with health issues are more often finding themselves laid off for the unspoken reason that the group health insurance carrier would either raise the employer's cost for benefits or cancel the plan because of too many "sick" people working for him.

I agree. NT or AS, the fact is that at 30, employers start looking at you differently. At 30, you learn enough to know that your career isn't your life, so some don't want people who still don't blindly live for career first. Other employers expect accomplishments on the resume by 30, and if you don't have them, they question your ability to do the job.

At 40, it gets significantly worse. I cynically say that your working life is effectively over at 40 if you don't have a nice list of impressive accomplishments on your resume.

By 50, you're on the edge of "retirement age" and nobody wants you compared to the fresh 25 year old out of college.

That's the cold reality most people face in the workforce. It's even worse in a bad job market.