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Tuesday, August 08, 2006

Astonishing, maybe... but true

Why I believe I have Asperger’s Syndrome,
a form of Autism…

and possibly Dyspraxia as well.

By Lydia Glider-Shelley Monday, August 07, 2006

I began to research adult autism accidentally. I followed a link, describing the humane treatment of livestock, and found information about Temple Grandin. This information did not exactly “sink in” at the time, but I began to think I had symptoms of autism, however I did not realize how many or what it meant if I put it all together.

I took a test on this British website: which said that:

“The sole purpose of this measure is to screen for the presence of indications of autistic spectrum conditions. It is not a diagnostic tool and The National Autistic Society takes no responsibility for any misuse of this measure other than its intended purpose.

This measure was developed through the Greater Manchester Consortium to develop local services for people with autism.

It is intended for use in any setting or service for adults, including Learning Disability, Mental Health, Probation and Employment Services or Further and Higher Education.”

Here are my explanations for the responses I gave to the test questions. Following are further puzzle pieces, added as they come to mind… enlightening now that I have a context to put them in.

1. I seek the company of other people conditionally, for example, if I need an opinion or a partner for musical performance… but seldom just to “hang out” or go much of anywhere.

2. No doubt about it, I like to share my interests, enjoyment and achievements with others. But I don’t like to “toot my own horn,” either.

3. While I often “feel” others’ pain, anger or other emotions, I don’t recognize it for what it is, and it just makes me uncomfortable and sometimes even panicky. I often misread their facial expressions and/or body language, too.

4. I’ve often been told to wait my turn, and have had a bad habit of interrupting. While I’ve learned to control this, it is with great difficulty. Sometimes I feel as though I’m going to burst while awaiting my turn.

5. It’s always been a prevalent speech pattern for me to repeat things, sometimes in a stuttering manner… but also I’ll often rephrase and say the same thing two or three times because I don’t quite know if I’m coming across to the listener.

6. I often repeat what others say to me, to make sure that I understood them clearly.

7. I’m often told to speak more quietly, that I tend to be inappropriately loud… or the opposite, that I’m not enunciating well enough and speak as though I’ve got rocks in my mouth.

8. I have often used words which mean something to me but others do not comprehend my meaning… sometimes because their vocabulary is not as extensive as mine, other times because it’s a word I made up, but which seems to work. For example, when talking about a black neighborhood, I’ll say “The Hood” but not everyone understands the reference so it often draws puzzled looks.

9. I said no to this one because of its ambiguous wording, but I do have repetitive physical habits that drive me mad, and which I would love to be free of. They are: a) picking at my head (scabs) until it bleeds, b) chewing my fingers until they bleed and c) chewing the inside of my cheeks ‘til they hurt… and this last habit has caused me to push on my face so often and so much that I’ve developed unattractive permanent lines in my lips.

10. My mother tried hard to break my intense attachment to objects early on, but I do remember having a habit of sniffing a diaper pad – and later the edges of bedspreads – while “clicking” my tongue. (I can demonstrate…) I still wake up sometimes and catch myself doing this with the edge of a pillowcase in my sleep.

11. I have problems filtering background noises if there are too many. For example, if the television AND radio are both on, and someone speaks to me, I can’t understand them nor process any thoughts. I “short-circuit” and must leave the room or turn off one of the audio sources. I also have great difficulty functioning within any kind of group… due to the fact that when there are several people speaking, it sets me off.

If the total score exceeds 4, particularly if it includes a score of 2 for questions 7 and/or 9, further assessment of whether the person has autism is necessary. My score was 12, and I had a 2 on question 7.

There are so many things that add up together and make me sure that this is why I’ve had the sort of problems I have, it’s hardly likely to be coincidental. Witness:

All of my life I’ve had digestive troubles, IBS as a child and young adult and gallstones now. I also have a swallowing problem that tends to be more prevalent when I’m upset.

From the earliest age, I never felt like I fit in or belonged anywhere. I always had an innate sense of “wrongness” although I had no idea what to do with that feeling, so naturally I always have felt uncomfortable around most people, especially larger groups.

As a child, I did anything I could to avoid “recess” where I was expected to mix & mingle with my peers, who tended to give me wide berth as they saw me as crazy. When given the chance, they taunted and teased me, saying “Lydia, pity ya” among other things. (The saddest part is that I didn’t “get it” and understand what they’d been saying all those years ago until just recently) I had no desire to expose myself to constant rejection from them… so I tried to find ways to avoid going outside with the other kids: taking my time and eating my lunch VERY slowly, asking for assignments from various people such as painting a barrel for the gymnasium, re-shelving books for the librarian, etc.

I’ve grown better at keeping my thoughts to myself, but for most of my life I stunned people by blurting out whatever was on my mind, regardless of consequence. In fact, at times I delighted in the astonished reactions my comments drew from people. This tendency sprang up in places such as church, the classroom and other places where it was not appropriate to just “say something” as well as in more informal situations.

While I’m very good at striking up conversation with strangers, I have a problem with knowing when to cut it off and end the conversation. This makes me feel incredibly awkward in social situations, even one-on-one.

Sometimes I talk on and on about something and don’t notice the other person is not the least bit interested in what I’m saying until they yawn or start looking desperate to get away from me… then I’m terribly embarrassed for having rambled on like that.

I quite often don’t “get it” when someone is teasing me or joking with me… taking them quite literally. The reverse is true as well: often my jokes don’t seem funny to anyone but me. In fact, quite often people don’t follow what I’m trying to say at all.

Speaking of awkward, I’ve always been clumsy… and often it’s because I just don’t “notice” that there’s something there to stumble over or run into. It does, however, relate to my inability to properly judge spatial distance. I always thought this was a quirk of my eyesight-related problems, but since it seemed to go beyond what that could explain, it’s a relief to have a reason for it. Perhaps this is why I never enjoyed games involving balls.

I quit playing all games some time during my 20’s. I don’t know if it’s related to this condition or not, but I don’t enjoy playing most games at all. If I am persuaded to play a game, however, it must be one that involves words and vocabulary. (I kinda like “Mad Libs” – does that qualify as a game?)

Sometimes I find it difficult to make eye contact, and people can misunderstand, thinking I am shifty or dishonest. I’ve often blamed it on my eyes, because when I don’t wear my glasses, my left eye will cross if I concentrate too much… but I find myself avoiding eye contact even when I DO have my glasses on. This is something I have tried to work on, with little success. It’s often made me feel inferior.

I’ve had a tendency toward Obsessive-Compulsive sorts of behavior, such as focusing on one thing to the exclusion of all else. This can be temporarily beneficial, but usually over time it turns out to be problematic.

I never have gotten into a proper rhythm with hygiene, housekeeping, meal preparation, etc. and for years have blamed this on my poor husband’s night shift schedule, but it’s really not his fault. It’s all me.

I have always wanted to be a spontaneous sort of person, but find it hard to just go do something “at the drop of a hat” so to speak, without prior warning and preparation. Until just recently, I never could quite grasp how long it should take me to prepare for things, which led to a lot of anxiety surrounding appointments and other obligations which require me to be somewhere at a specific date and time. I still struggle with time and how many things I can accomplish in a given time period, etc. such as cooking all the elements of a meal and having them ready to put on the table at the same time.

I get very upset if my belongings are moved or missing. But since I’m a packrat, and also busy, my “things” pile up and my family walks on eggshells, afraid that if they move any of it, I’ll freak out: and I will. I’m learning to be more accepting of changes, but still find massive changes to be extremely stressful. (Like if someone else is cleaning my house from top to bottom… although I am grateful for the help, I’m extremely anxious while they’re doing it)

Conversely, I detest routine and schedules… which is a shame, because all of my reading thus far regarding ASD and AS suggests that what I need MOST is to create and stick to a schedule somehow. Hopefully therapy will help me to do this.

I suffer from terrible claustrophobia, and can’t stand to be stuck in a crowd, particularly indoors. For some reason, I can tolerate elevators okay, but being in a small crowded room to work for more than a few short minutes is out of the question.

Another problem I have is “texture issues” with food, which is why I have an aversion to most fruit and many other foods. My mother used to just tell me I was peculiar. She’d make me stay at the table and finish what was served to me, even when I protested that it gagged me.

Although I prefer being barefoot, I wear socks to bed, especially when the temperature is my preferred 70 degrees Fahrenheit. I like my socks to be snug, and it bothers me if they slip down so that there’s loose space beyond my toes.

To a neurotypical person, all of the above MIGHT seem coincidental. But I’ll wager that there’s not a single Autie or Aspie out there who reads this that won’t say “welcome home.”

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