Monday, September 16, 2013

Aspergers and Me



List of Female Asperger Traits

This one may come as a shock to some but not to others. I've hinted at it massively on this blog, but when I was in my early 30s, a therapist told me she believed I had mild Aspergers,  it blew open the door to understanding many things.

This would be backed up by another therapist even a few years later as well as medical professionals who agreed with the diagnosis. Some Aspies do not get an official diagnosis and in the Asperger community, this is somewhat controversial but especially for those slip through the cracks as children obtaining a diagnosis can be expensive. My therapist tried to make it more "official" but since I was already on disability the expense was not approved.  Since then, another therapist has backed up me having Aspergers and it's become a known fact on medical records. There are those in the Aspie/autistic community who have had to depend on self diagnosis as adults without the involvement of the professionals.

Other Aspies are totally self diagnosed after seeking answers as to why they were so different from their peers, and now information online  has increased. I have been part of Aspergers communities online, including one message board where I was there for almost 10 years and have several now real world but long distance Aspie friends. Some of these friends are officially diagnosed by psychiatrists--this testing costs several thousand dollars, some "diagnosed" by therapists like me and some self-diagnosed as adults. With these friends, we do relate deeply on many things including what we faced as young people.

It is known that this is a whole other ballgame then severe autism, I understand that, I even used to substitute teach in special ed classrooms where there were autistic children who were totally non-verbal. Aspergers is by far a paler cousin of the spectrum where one is verbal but has problems with social cues, and social ackwardness. Even when young I was referred to as the "absent minded professor", and did things like reading World Book Encyclopedia for fun.

In my case, I would be considered high functioning and on the MILD end of the Austistic/Asperger spectrum, but it definitely had life impacts. For some time, I battled about even exposing this, but then I think on this blog, I have discussed everything else about, and on my own social website under my real name, "the secret" so to speak is OUT so why hedge so much about it here?

This book was like the story of my life:
I supposed I didn't want people to use this as an excuse to dismiss my words, and my studies here, if anything Aspergers can give on the talent to see things in a new way. There is major stigma that can come for Aspies and there are websites out there where they mock Aspies as all a bunch of fat nerds, making "excuses" for why they do not fit into society. I don't care, all I know is this helped answer a few questions of why and how I was different. One thing I am not a fan fiction sort, I hate science fiction, so be careful of even letting Aspergers characterize me or picture stereotypes here that are far too rampant. There is a wide difference between a full autistic, stereotypes like Rainman, and even between individual Aspies themselves. One thing I want to add too is that Aspergers shows itself far different in girls then in boys, and the Asperger professionals have written about how many girls with Aspergers have not been diagnosed though this is changing.

Part of me has questioned the Asperger label wondering if thoughtful, quiet, book focused people used to be more the "norm" maybe back in the 19th century when character counted more and the narcissists weren't the top dogs being rewarded by society held back a bit, with their propensity for deception and lies held back a bit by stronger social ties.

There are many Aspies now undiagnosed and diagnosed who are part of academia and other areas in society where their different way of thinking is considered an asset. Aspergers can bring talents. It is a known fact that many Aspies flock into academia. 

I seemed to have odd talents mixed with deficients. For instance I can read about 10 books a week, and speed read with ease. I can remember things that I read even years later. Patterns are easy to discern, and my level of "booksmarts" always seemed high. In childhood and later, my IQ tested very high . However with this came other problems, some "holes" as it were, problems doing math, executive function, social cues, problems understanding verbal instructions even before my hearing loss.

Today Aspergers affects my life still, aging is different for those with Aspergers. Many things that come simple for ordinary people do not come simple to me. Later I will discuss such things as executive function and the rest, but one moment hit me hard, this weekend, using a library computer to print pages for a volunteer presentation, I lost the slip of paper that had my assigned computer password and name on it, forgetting that I needed to enter it into the computer hooked to the printer. Such gaffes impact my life all the time. Thankfully the librarians were kind about this and know me enough to tolerate my quirks well. Life seems overwhelming to me, and things that come easy for most do not come easy to me.

One aspect of Aspergers is the world can pass by as a confusing overstimulating mess. My levels of anxiety were high especially growing up. Hey with the kind of parents I had, I had to act "normal" or risk being smacked. Aspies can suffer from higher levels of depression and anxiety. 

As a child I was very quiet, and teachers knew something was very different,  while I could get a friend here and there, the social problems made things very tough. I did not fight or act out but was ostracized by other children. The teachers noticed I could read adult books by the age of 6 but that I was not being included by the other children. That combined with the kind of upbringing I had worsened things for me. As for my parents and family's treatment of me, I was quiet and not a troublemaker, and even if I was a bit different or quirky it does not excuse how I was treated and it was wrong.  Add in the fat kid bullying and well, it wasn't a pretty picture.

However with good grades and quiet behavior, I slid through the cracks. Of course 30 years ago little was known about Aspergers but many of my problems were ignored by my parents and I was in the private Catholic school system where there was far less special education resources and education. The nuns who were my teachers, were pleased enough I was quiet and got my homework done. The sad thing is my parents just shunted me aside even ignoring aspects of OCD and tics that I displayed.

One thing about Aspergers is that there is a connection between autoimmune disease and food allergies. Given that I am diagnosed with autoimmune conditions that makes sense. Autistic leanings often are part of Prader Willi- and Fragile X, now do you understand why I want some of that genetic testing being trapped in this body? Why was I so tall so young and a foot taller then all other kindergartners in my class? Learning that 9 out of 10 women with Aspergers suffer from IBS was also interesting to me.

My qualities of being a "deep thinker" which was not welcomed in my family, and others actually singled me out more among the non-readers I was related to. Most of my family were extreme neurotypicals including my mother though one of my friends theorizes that my father was an Aspie since he was an extreme computer genius with a tested IQ of 140.  They say that Silicon Valley is full of Aspies, and yes there are many who are talented in computers and my father was one. My father also displayed many of the same negative non-Aspie personality attributes as my mother though I would say she ran the show and he was her enabler. Her word was law, and I was chopped liver.

While I have some intellectual talents, sadly computers and math were not among them, though if I can go into a certain mode of thought, I can fix a computer sometimes and one friend found it odd, that I manually went into a computer registry and removed files from a virus. She said, "How could you tell what was a false file?", I said "By the patterns". She found this odd.

With my father being a would be Aspie, I tend to disagree with this, since he was so high functioning socially and had a very good job. In other words many Aspies do struggle with making a living and functioning in society. As if I didn't have enough challenges outside my weight and upbringing? The Aspergirl book, went into how hard it is for Aspies to fit into the workplace, and while I was disabled for my physical problems, I remember the office politics bowling me over and driving me crazy. I could keep jobs pre-disability, but my stress levels were very high.

I have a running theory about Aspergers and weight, one thing I have noticed is there does seem to be a sub-set of people with Aspergers who are very obese. What is going on with that? I met a man who is over 500lbs in my community at a disability group, who told me he is a fellow Aspie and I could tell he was a bit more on the severe side of the spectrum. I wish they would study that. I am researching it myself now. This article says children with Aspergers are taller and heavier then their peers, I definitely was.

I do have a nephew who is diagnosed H.F.A. [high functioning autism] the half way point between Aspergers and full blown autism. I did disclose my mild Aspergers to a few relatives, who agreed with it but it did not change any of the abuse or their attitudes towards me.  But even there the causes of autism or Aspergers are controversial. I muse about the refrigerator mother old school theories about autism and Aspergers given how I was raised.  In my opinion, Autism and Aspergers are multi-faceted probably with different causes for different people. One thing they do know is the rates of it are skyrocketing.

One thing with Aspergers, Aspies do have empathy. That is one claim that angers me when people try and claim Aspies have none. We have it. Aspie females often feel deeply if anything. My life has been one of repressing my emotions around non-understanding neurotypicals, to "fit in", not being a female Spock.

I plan to write more about Aspergers on this blog too. Yes I know, a 500lb Aspie, who would expect it?


10 comments:

  1. Life sucks for Aspies on so many different levels. So very tired of being accused of things I did not and never would do.

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  2. Yes I think while Aspergers can bring gifts it can bring mighty challenges, sorry that others blamed you for things that you did not do and misjudged you. It's horrible. They misread Aspies so easily.

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  3. I do not think society has got it all right that you should work to "fit in" with it.

    Be yourself. Based on your writings on this blog, you are a person worth knowing and worth being accepted for who you are.



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  4. Thanks Anon, your kind words mean a lot to me.:) I definitely have given up on "fitting in", a lost cause --my gifts and good things are even related to being different and agree with you about society.

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  5. Just wanted to send a note of support. It takes courage to come out as an Aspie, and it's always empowering to find someone else who is talking about their experience. I'm also a big woman with Asperger's -- self-diagnosed, in the process or receiving a formal diagnosis. My blog on living with Asperger's is here: http://owlparley.com.

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  6. Thanks I read several pages of your blog and liked it. I will be back to read more. You are a very good writer. It did take me some time to decide to come out as an Aspie but now am glad I did. The Aspie community has been a supportive one for me. Thanks for your support :)

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  7. Thanks for sharing this. OMG, this fit me to a T.

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  8. I found out about Aspergers around my early 30s. Before then even counselors didn't know what to make of me to a certain extent especially on Aspie related things. I hope the information can help you.

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  9. Hi. I found your blog after searching for info on the downsides of WLS (my mother had it), and I see you're a fellow Aspie too. Cool. :-)

    I apologise in advance if this comment is disjointed. I tend to write exactly what comes into my head, and editing can take a very long time, time I don't have right now...

    Autism seems to run in my own family. My two kids were diagnosed as being 'on the spectrum', as was I, as was my father, and I'm sure his two sisters and at least one of their kids are there, too. From what I've read, actual rates of Autism are not skyrocketing; rather, diagnostic criteria has become better able to identify kids on the spectrum earlier. It also includes the hordes of Autistic adults out there, like ourselves, who have finally discovered why we are the way we are.

    By the way, my dad also had a good job and still has a reasonably successful social life. He says it's because he learned how to 'work the system'. It's weird - to me, it's very obvious how scripted his social interactions are, but none of the NTs seem to notice or care. I think some people pass better than others. (possibly your dad did, too?)

    Computers and math are also not my strong traits. My parents were the sci-fi geeks who went to conventions (in costume!), not me!

    Rudy Simone is really good. I read one of her other books: "22 Things A Woman with Asperger's Wants her Partner to Know" - obviously meant for my partner, but I got a lot out of it myself.

    I'll be real honest: I don't believe "Aspergers" or "Autism" is the reason for the majority of my troubles in life. It's simply the way I am. More problematic is the social construct where one way of being, exhibited by the majority, is deemed "normal", and everything else is pathologised. Whether it be a certain neurology or a certain body type. Like you, I've given up on fitting in. It's like telling a gay person that they should choose to be straight: damaging to the spirit and ain't gonna happen anyway. Be your authentic self.

    Once saw this on a T-shirt: "I am not a defective dog. I am a perfectly good cat."

    Did I mention I love your blog? I do. :-) Cheers!

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  10. Hi Tess, I am glad to meet a fellow Aspie, sorry I am late in my response here, I responded on your other comment too.

    That is interesting you have so many family members on the spectrum. Sounds like genetic related Aspergers definitely. I definitely know that having Aspie adults know why they are different it HELPS THEM. I believe it helped keep me more together to figure out WHY I am different, I have sought support in the Aspie online community for 10 years.

    I am glad your Dad did okay, I wonder if some mild Aspie males with the right skills can manage in the work world better. Maybe he was able to figure "The system" out. I never managed it well, even now it confuses me. LOL They are high functioning Aspies who learn to cloak. I did it though it was very hard for me but I had the days where I was in teaching. He sounds like he is able to do well so no NTs see his differences. Mine picked up on some anyhow. I think some people do pass better then others. There are people too on different places on the spectrum as well.
    I am bad at computers and math, wish I was better. Utterly bored by the whole mess even if I had skill at it. I would like to read that book. I have far more troubles from the weight and health, I think even with the Aspie stuff, I could have found some niche, maybe as a teacher.
    I would say in our society, normal is growing more NARROW, which worries me as it is having implications for people career and money wise and breaking down social connections.
    LOL I like that saying...:)

    Thanks for the encouragement! :)

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