9.09.2014

Nature is cruel but we don't have to be [Temple Grandin]

[Please note: I had actually written this a year ago, but it was never on this blog]

Often when an individual is shy or awkward or finds it difficult to easily engage with others, the line of thinking often ends up at a stop called “Asperger’s”.

This is not a terribly far leap of logic, though the concept of Aspergers as a separate diagnosis entirely is no longer being recognized- at least officially in the United States and generally in Western countries which follow diagnostic criteria of the DSM.

With the introduction of the dsm5, all distinct diagnoses formerly falling under the autism spectrum have now been subsumed under the large umbrella of Autism, to be classified as a broad spectrum disorder… which seems to be a growing trend.

With all that said, I am actually autistic as opposed to having Asperger's. “High functioning” autistic, to be more precise- a term which is not used in a standard fashion and which can cause much misunderstanding. I was, however, diagnosed as such several years ago and this is not a case of Asperger’s being swept into the current DSM5 confusion.

While many diagnosticians would like to say- and often do say to save time- that the only true difference between Asperger’s and HFA [or High Functioning Autism] is that there is no language delay in Asperger’s, the truth is a bit more complicated.

While language delay is a very relevant factor, social difficulties seem to be more often a standout issue with Asperger’s while HFA will more often have a larger grab bag of issues. I will expound upon that shortly.

That I am autistic, I do feel I have some relevant commentary on the issue. Beyond that, I also did quite a bit of research into the possible manifested clinical differences between individuals diagnosed PDDNOS vs HFA vs Aspergers.



Someone said the other day that I don’t “look” autistic, because I did actually mention that I am autistic. They took one look at me and made the aforementioned comment.

I don’t seem to fit any of the strangely shaped boxes that people build for themselves and label “autism” (quite often before ever meeting someone who is autistic) so I end up defending my diagnosis instead of discussing my experiences as an autistic individual. To the point where I generally just tuck that part away inside me.

A little background for general info, so you [ as the reader] can decide whether my experience may be relevant in your view: I was not diagnosed as a young child, but I have been diagnosed and had it confirmed several times based on the results of neuropsychological testing, psychological, academic and medical reports as well as personal reports and reports of those familiar with me. All of these records [neuropsych testing, psych, school and health records, as well as parental and personal reports] date back to when I was about four or five to the most recent testing.

Including those making and confirming the diagnosed are a well known and respected professional psychiatrist in the field [no I don't name drop so as always, make the decision for yourself whether what I say is legit or not] and a very prominent hospital. It is not particularly important to me that I be a poster child for autism.

What is relevant to me are some of the challenges that are associated with it, that are not restricted to social issues. That is a common misconception.

My experience though:
***I have problems with recognizing and recalling faces. If I know you for years, this is not so much a problem, but if you get a drastic hair cut or color change, you should talk to me as you approach me because I will recognize your voice much easier than your face. I’ve learned though, to pay attention if someone has a distinctive walk or a favorite hat or unique piece of jewelry. If someone approaches me in a generic setting- like a grocery store- I don’t usually have a context for how I know them. They could be my neighbor, a coworker, a fellow student. If all they say is “hi” and give me an expectant smile… there is high potential for panic, upset and insult. You can try to work around that, but sometimes you just piss people off. If it is an important academic or similar contact, you can potentially REALLY screw up. But, oh well? Ha.

***I didn’t talk really until I was closer to four than three. I think that, combined with all the extra stuff involved in having an auditory conversation (tone of voice, pushing, turn taking, interpretation of tone, sighing, coughing, little indescribable noises…), PLUS a bit [ok more than a bit at this point] of auditory processing messiness that can be common with autism makes spoken communication a bit more challenging. Even more, I suspect, than it might be for the average person. There is often an ebb and flow that I might not have the hang of. I can miss pertinent information. Other people are intuitive in a conversation,I have to be analytical and it is DAMN EXHAUSTING. Sometimes when I say things I forget to attach all the appropriate bells and whistles that make it easier for other people to hear, but are often nnecessary for me. That has variable results. Because of this, by contrast my written communication seems to excel.

***Visually, I can have difficulty interpreting my environment. I don’t always see a picture as a whole scene. It just looks like different things and I can’t gather the meaning through a connected context.
If you saw a bunch of beige string in a five year olds hands, she was sitting on a picnic table, there was glue and scissors and art supplies around… You would know it was beige string. My brain will not always piece together context clues.sometimes I wonder why a little girl is sitting in a park on a hot summer day laughing and hold a handful of spaghetti. It can be disorienting.

***change is difficult. I don’t mean inconvenient. I mean, inside, it can be downright traumatic. But it’s not ok for a 31 year old to throw a total meltdown tantrum in a store because they stopped carrying the only conditioner I’ve used for the past five years- in fact no one carries it, because it has been discontinued. I’ll get the cops called on me. I’ve had to train myself to in the very least freeze that nonsensical turmoil, that is almost a primitive reaction, and try to find some kind of soothing safe space or activity or something. It’s upsetting. And it’s upsetting that it is upsetting. I feel I’m a reasonable person and then inside of me flips like a five year old in a candy shop? It’s pretty awful.

***As with change, new things are difficult. They strike right at the heart of everything that scares the crap out of me.

***It is better now, but for a while I had quite an uneven profile of ability. ...and I guess, I mean "better" is relative. My activities of daily living were pretty pathetic. I had no ability to clean or organize my room- it was not for lack of trying. My brain literally could not provide me the skills to do so. I couldn’t especially cook, I was afraid of using frying pans (I actually wrote a post about that), there were a lot of things that people take for granted, so I was never explained how to do them. So I couldn’t cook myself dinner but would be writing research papers on like, the cellular lever of a neurological disorder… and that is very typical of moderate to high functioning autism.

***I have had a history of fine and gross motor control retardation- it matured slowly, and is now not really as much an issue. I do think there are some coordinated activities that I have to put more conscious effort into, though and my dexterity may be a bit lacking with some things. But again, this is not unusual for those with autism. It likely accounts for a lot of the general “awkward” discussion surrounding aspergers and autism but I think there is misconception regarding what the awkward terminology actually refers to.

***it took me a long time to emotionally mature and this was very very obvious. I didn’t really feel very ready to understand and handle particularly serious romantic relationships until I was maybe 26 or older, and yet found myself in them, which was a bit difficult.

***structure in life generally and in schedule as well as executive functioning are also abilities which have been a long time coming and things which have necessitated at least partially active effort to improve upon.

So while social dysfunction and difficulty is certainly a part of it, and by necessity comes into play because of other aspects… it is not the whole syndrome. Or most of it.

In some cases, very severe social anxiety may be mistaken for being somewhere on the autism spectrum.

There is also a saying: if you have met one person with autism… You have met one person with autism.

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