Self Diagnosed People: How Did You Learn About Autism?

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Sheldon Cooper is a caricature of a person with Asperger’s.

I told my counsellor that to understand Sheldon's social success, you had to know something about Bay Area real estate, and the advantages of holding a lease. I think that Bert is more typical.

I've been working with profound autists for about 20 years. I've read about and studied autism. There were females and males that I worked with and there was not much difference in the expression of their autism, "classic."
Then I got two HFA, and had to learn about that. Still no clue.

A long last a google subject caught my eye about HFA in women having a different presentation. I read the article. The penny dropped and suddenly my world experiences made sense. That was two years ago. My world still makes sense and I now have more knowledge and tools to work with to make my own life more rewarding.

It is very true that, frequently, women present with autism like men present with autism.

There seems, however, to be a “female” sort of presentation which involves the ability to superficially be socially proficient, while suffering something like sensory issues.

This possibility could underlie the under-diagnosis of females. “Officially,” there are 4-5 males to 1 female with autism.

The male-female ratio on WrongPlanet could very well reflect the true male/female ratio.

What is the male to femail ratio on WP?

To me, there seems to be almost as many females as males.

More maybe?

It’s about even to me.

I have the “female presentation.” I’m pretty good socially. Most people don’t know I’m on the spectrum. I’ve adapted some strategies that enable me to blend in well when I have to although this causes me some stress and anxiety.

I am very shy, though. Most people think I’m just shy.

I get burned out easily in socially stressful situations, and I have sensory issues.

I initially got tested after my family learned about autism and my brother told me that he thought I had it. Both my son and nephew were assessed and are on the spectrum which made my family more knowledgeable about neurodiversity.

I first heard of "autism" in the mid-1970's or so, first in a general book on mental health, and then again, a few years or so later, in a TV documentary on mental health. In both the book and the documentary, "infantile autism" was said to be a form of childhood schizophrenia. In the documentary, a little autistic boy was shown yanking his hair out repeatedly, a few strands at a time, thereby giving himself a small bald spot. Nothing was said, at that point, that I personally could identify with.

I first heard about "high functioning autism" in an online forum I participated in back around 2000. After a series of misunderstandings I got into with several people in that forum, someone urged me to look into the possibility that I might have "high functioning autism." I completely dismissed this idea at the time, because (1) the people in that forum didn't know me in-person, (2) I got along fine with most of the people in most other online forums I had participated in, and (3) I was still under the impression that "autism" was a form of schizophrenia, and I knew I wasn't schizophrenic.

Then, in 2008, I met the man who eventually became my business partner and then my boyfriend. I soon learned he had been diagnosed with Asperger's syndrome back in 2001. I did a little online research on AS, and this did sound like me.

The rest of the story is told on my blog, in a post titled My life as one of the many belatedly-diagnosed autistic older people.

My doctor suggested it after I had a visit at about age 25. I went back home and looked it up and suddenly everything made sense. When I was a teenager I was so confused as to why I couldn't talk like other people could, and I never understood why i always avoided eye-contact. After looking at the wikipedia I pretty much was a checkmark across the board.

I still feel bad for 16 year old me who was just utterly confused and bewildered at what was going on. I feel bad for young aspies who have to go through life not knowing what's wrong and whose parents are oblivious or uncaring. As a teen I always assumed "I'm just mega dumb, I guess", and going through life with that kind of self impression can wreck havoc.

I don't think that I'm on the spectrum, but perhaps close to it. The first time I came across the concept of autism was from reading online theories about fictional characters. I noticed a few traits that seemed to ring true for me, but I didn't give it much thought.

Then one day I wrote on an online forum about struggling to move on from horror fiction, vividly imaging it unintentionally and not being able to focus on anything else. At one point in the conversation someone suggested that I might be finding it so difficult because of the intensity of my sensory perception, combined with my ability to mentally conjure up such detailed visual images. That perhaps I felt things more intensely including empathy for people (such as victims in horror situations) because I was able to imagine their pain to some degree quite effectively. At the end of their post they offered a link to an Autism wiki page on sensory sensitivity. I briefly wondered if I should look into it more, but I decided against it.

On another post I mentioned my sensory sensitivity, but in this case I was talking about getting overwhelmed at supermarkets. I was looking for advice on how to stay calm. Someone mentioned their autistic son having similar issues, and how the son would carry a cloth cube around in order to relax. I also saw a video by some autism group floating around social media of a young boy becoming overwhelmed in a shopping centre and I found myself relating to him. The video seemed to capture what I was experiencing much to my surprise. At this point I was definitely starting to wonder, but I didn't want to get ahead of myself.

I was aware that autism is a multifaceted thing and sensory sensitivity by itself didn't necessarily mean anything. Then I found out about sensory processing disorder and I started to wonder about that.

Found a video about it but the sound effects made the video too painful to listen to. I remember reading the comments and someone had written "Is this supposed to be just informative, or are those sound effects secretly a screening tool?" Anyway, I stopped looking into it, I decided that SPD probably wasn't what was going on with me.

I experienced a rough patch in my mental health at one point, one that was unrelated to everything I just mentioned. Someone suggested a free online therapy website to me, so I checked it out. I was sceptical at first, but curious about what it was like. So I chatted with some of the counsellors there. I wasn't always sure what to talk about with them, so I jumped between topics and talked about whatever I was wondering about myself at the given time.

Admittedly I was secretly hoping that they'd tell me that I was almost completely normal and just overthinking things. That's not what happened (except with one of the counsellors, but in most cases it didn't happen).

Instead, a bunch of speculations surfaced. My original goal was to just get advice on what I'd hoped were simple things, and hopefully develop a better mindset, but they kept wondering if something deeper was going on. Three potential conditions came up. Generalised anxiety, O.C.D and autism. I even got a PDF from them about anxiety in autistic individuals so there was definitely a theme. One message read "Here's some information on autism that I've added on. I don't want to worry you, I just thought it might be of interest since we talked about it a little in our session today. Although I suspect you already know plenty!" Let me tell you, I wondered about that last part a lot. I was tempted to reply "What do you mean by that? Do I just seem like the type to research things? Was it something I said that made me come across as knowledgeable? Do you assume it's a special interest or something? Are you just being nice? WHAT DO YOU MEAN?"

Of course, she was right. I had done some reading on it despite trying not to. Found out about Wrong Planet due to the website being mentioned on an article discussing fictional characters potentially having autism. Didn't pay it any attention until the whole online therapy situation happened. Then I decided to check this place out to see if I could relate to try to figure out if I should just let the speculation go or if I should explore it further. Wasn't originally planning to stay here so long.

Decided to mention wondering about autism on another website. I was introduced to the term highly sensitive person which seems to fit. Then I came across Broad Autism Phenotype here and I considered that. I doubt that I'm autistic because I don't see myself as having a social disability since I don't think that I'm impaired. Awkward,neurotic and hypersensitive? Yes. Impaired significantly? No. Granted, I sometimes miss sarcasm, read someone's tone incorrectly and take things literally. I do experience sensory overloads, but they are followed by periods of derealisation and seem a bit different to how I've seen others describe them. Don't think I've ever had a meltdown. A few people online have suggested autism to me, but I've never had someone offline suggest it seriously.

When I looked into dyscalculia, it seemed to describe me eerily well. The symptom lists felt as if I were reading notes someone who had been following me around all my life had secretly written about me. However, when I looked into autism it wasn't like that. With that said, I do take into consideration that autism can present differently and there's more room for variation with such a condition.

Autism is not a disease. You can't die from it and you can't catch it, and it is NOT worse than cancer even though some people think it is.

Warning: pontificating.

I am uncomfortable with the "disease" or "disorder" jargon also. Although it may not inherently be those things, it is practically in today's culture.

Given the abuse ASD folks experience at greater frequency than NTs according to one online study (re: ACEs) and the seemingly magnified impact it may have on the hyperfeeling ASD types (IMHO), I would say that ASD can contribute to death or injury. Being left-handed can also ---- comic relief: it's a matter of time before I burn myself with that right-hand biased soup ladle at the cafeteria which I frequent for lunch. So as a left-handed AS person, I think I've "lost" 15 years on my life expectancy. I'm trying to gain that back in other ways: almonds or a quick jog up a flight of stairs, anyone?

Interestingly, one could say (and this is a huge stretch so please disregard the ways in which this is offensive) that both ASD and cancer are not inherently bad, both have different degrees of manifestation and are worsened by (or reflecting) outside factors. Both are good and bad -when they go awry (unto themselves or relative to the environment). 1-min Google Search yields similar thoughts "Cancer is not a Disease - It's a Survival Mechanism".

I think the first time I heard about autism was when I found a book in my parents' room that they had been reading. I didn't really connect the dots at that time though. I thought they were just paranoid.

Much later I saw a teenager on a reality TV show cover her ears and run out of the room when her mom used the vacuum. I remember thinking "oh, she's just like me"... then the mom on the reality TV show says "Sorry, her autism makes her sensitive to sounds."

Me ..... oooh.

I too am diagnosed now, with Aspergers, but that was something I could not afford for quite a few years after first suspecting that I was autistic.
_________

I never related to autism in books, or tv, any autistic people I met didn't seem that strange to me, though I couldn't relate to their challenges either.
I knew my mind worked differently, I believed for a while that I had ADHD inattentive type with sensory processing disorder. For the most part when my life was going smoothly it wasnt a perfect fit, but seemed to explain some of the things I found challenging.

When I experienced autistic burn out (I didn't have a name for it then) I had to accept that there was something more, I came to know the difference between innate abilities and learned skills, through the loss of learned social and communication skills in particular.

I didn't have the energy to relearn them, 7 years on and I still dont, nor do I desire to harm myself in that way again. I need my energy for more essential, independence skills.

I came to accept that I might be autistic as there were similarities with ADHD, and aspects of autism that I could relate to. The barrier was that I have obviously not lived in someone elses body to know the benchmarks for what is considered normal. I only know my own way of being and doubted that I was more than BAP.

As I couldn't relate to descriptions in books, I figured that people on the autistic spectrum were the ones I should speak to and after reading threads here, my life started to make more sense.
I was different to the norm in more ways than I had ever realised.

Unfortunately my realisations coincided with a time of much stigma and bullying towards the self diagnosed on WP.
That is thankfully in the past now, it did however make the process of self diagnosing way more difficult and put me in harm's way.

I doubted the realisations that had explained my difficulties in life, those moments of revelation somewhat muddied.
So I started a journal to record and analyse, as a relative and valid theme at the time was the issue of self awareness in the self diagnosis process.
I reflected on these daily observations as a way to balance out my doubts about the validity of what had been life changing realisations.

I will add that the years of masking without having an awareness of the deep level I was doing it on (by comparison to the more superficial NT masking) messed with the process so much. I had to rethink almost everything I had accepted as normal.