Coping with Autism: My Perspective, Part 1

I’ve been in one of those moods recently. The sort of mood which begs for some sort of output, some sort of creative release. The last time this happened, it was brought on by watching what turned out to be an abomination of a show. You could probably say that what brought this on is of more consequence.

This past week I was in Nottingham, volunteering as a counsellor in a youth programme called FSY (For the Strength of Youth). I was responsible for nine incredible young men, and it was one of the most rewarding and exhausting experiences of my life. I loved it. And yet, when it concluded on Saturday, I ended up in one of the lowest moods I’ve felt for a long time. Why? I’ll get into more specifics later on, but for now it suffices to say that I tweeted this at one of my particularly low points.

It’s true, I am perfectly happy being autistic most of the time. Much like my utter nerdiness, I like to think that I own it. It’s part of me, and I’m not ashamed of it. Still, there are times when I wonder how things would be if I was ‘normal’. When it gets as bad as this past Saturday, that feeling almost swallows me whole, and I just want to live life without this condition that I myself don’t even fully understand, let alone those around me.

Of course, that can’t happen. I can’t live life without it. Ha, actually typing that is getting me a little emotional. I can’t live life without it, but I can do my best to explain what my personal experience is like, and in doing so hopefully I’ll give a small piece of this insanely complex picture to anyone wanting to learn. Maybe that’ll even help those that have it much worse than I do.

So, here goes.

There’s a spectrum for good reasonspectrum

The first thing to note about Autism is that the term itself is incredibly broad. If you were to return from a visit to the doctor’s and tell your family, with a sigh, “I’ve been diagnosed with sickness”, you’d be imparting just about as much helpful information as I would in just telling you that I’m autistic. In both cases there could be immediate indications of the nature of the issue, but until elaborated upon the statement itself could mean all kinds of things. It is, after all, a category.

To be more specific (although even here there are limits to how specific I can even be with a blanket statement), I’m a high-functioning Autistic. I have Asperger’s Syndrome. I was diagnosed when I was 14 years old, and I’m now 23. Whoa, I guess it’s been almost 10 years. Even still, as I said, I don’t fully understand the symptoms. I’ve managed to pinpoint some of the more unusual parts of my mindset and behaviour, and in some cases I’ve seen them line up with other Autistic people I’ve met. Even so, I am not an expert, and there’s a good reason this article is subtitled “My Perspective”. This is by no means a definitive guide.

In this first part (boy I wish I could write all of this today, but there’s no time), I will talk about some of the comparatively light and inconsequential issues I find myself dealing with. We’ll get to the meatier matters soon enough, but this may help establish something of a backdrop.

In Scheduling and Adaption

schedule

If you were to picture someone with high functioning autism, it’s entirely possible that you’d picture someone who is socially unskilled, yet extremely competent and organised when it comes to things that capture their interest. If you’ve ever watched Community, the character of Abed Nadir embodies that perception. Boy, I wish I was organised. I wish I was even slightly organised. Still, even in my blurry schedule I struggle with sudden developments and changes. I remember one particular occasion on my mission when I found out that I’d be working with a different missionary for the day, about half an hour before it happened. I was not happy. In fact, I was just short of hyperventilating. I wasn’t angry, though, I was panicking. I’m usually pretty good at hiding my panic mode, but even smaller changes can flip that switch.

This one can be pretty frustrating to explain to others, and often there’s not a whole lot that can be done about it. I usually just quietly deal with it. If you can at all avoid altering an autistic friend or relative’s schedule at the last minute, I’d highly recommend it. If they’re anything like me, they’ll have an awfully hard time saying no, regardless of the distress such a disruption may cause.

In Conversation

The hardest aspect to explain is simply the general mannerisms that pop up in converstion. This is not something I’ve yet been able to articulate at all, because even noticing it is a fairly recent personal development – a direct result of actually trying to socialise, and thus meeting fellow Autistic people. In some cases, I noticed these mannerisms and suspected they were autistic before they actually told me. Still, I doubt everyone with autism is as comfortable talking about it as I am. Some may never have been diagnosed, and may be completely unaware. For goodness sake, even if you think you’ve developed this mysterious ‘feel’ for it, exercise some tact. More importantly, don’t make any pre-emptive judgements. It’s entirely possible you’re wrong.

conversationThere is a much more noticeable and thus much more common theme in my own conversations, and that is my accent. If I said that I’d been asked about the origin of my accent countless times, I’d be making an understatement. The most common assumption is that I’m American, although I’ve had guesses such as Australia, Sweden and Russia (!?). Occasionally, there are those that are confused by others’ speculation on my accent, and think I sound completely British. Up until fairly recently, I assumed that this was a result of my American father and an upbringing I can best describe as ‘scattershot’ as far as location is concerned. Then I found out that it was a trait I shared with other Autistic people. One good friend from my missionary service is also autistic, and despite being of British parentage and upbringing, people get confused about his accent too. Googling “aspergers syndrome accent” brings up this forum thread, which, while anecdotal, is certainly enough to indicate that this is not an attribute unique to myself.

And hey, I’m learning a lot doing through doing research for this piece. How about a book quote?

“The child’s accent may not be consistent with local children, perhaps maintaining the mother’s accent. One normally expects children’s accents to change to that of their peer groups at school. This is most noticeable when the family has moved to an area with a different accent. the child with Asperger’s Syndrome is less likely to change their accent to that of other local children. Sometimes the child’s accent is the same as occurs on their favourite television programmes.” –Tony Attwood, Aspergers Syndrome: A Guide for Parents and Professionals

Wow, I usually make a joke at the expense of Barnsley to explain why I picked up nothing of that accent, despite living there for the entirety of my Primary School years.

In Memorisation and short-term memory

memoryI have a shoddy memory. The most basic tasks and instructions can completely slip my mind. It’s irritating, not only for me but for those why rely on me. However, I have superb memorisation skills, with some glaring exceptions. The best example I can give is this: I have memorised, and can recite, a 565-word passage of scripture with relative ease. That’s slightly under half the words you’ve read to reach this point in the article. I can rattle off scripture after scripture, but ask me for the reference and I will mostly likely stumble. Why? Because scripture references contain numbers, and I don’t do numbers.

In the same vein, I can barely remember any significant dates, and this is especially noticeable when I try to learn history. I am equally useless in maintaining an internal map of geographic locations. Until two years ago, I would not have been able to tell you that Colwyn Bay was on the north coast of Wales, despite spending probably over ten years of my life here. YUP. Oh, and do you want me to find the family car upon the conclusion of a shopping trip to Asda? Um, we might be here a while. What was the make? And the colour? Nope, I just checked my brain and it turns out I have no idea what car my mum or my dad drive. I think one of them’s like a brownish green colour? I could be wrong.

I am dead serious with this stuff.  My mind seems to need a special reason to register things that others would consider easy and basic. Perhaps, for instance, the reason I can’t remember car brands is because I have no interest whatsoever in cars. For the most part that’s fine, but it can cause some problems. For example, at the end of FSY on Saturday morning, my good Scottish friend handed me the keys to his car so that I could stick my luggage into the trunk for the ride back. I went to the car park and realised, oh yeah, I don’t remember cars. Want to know how I identified it? I spotted a case of Irn Bru in the back seat. Dead. Serious. Also I am not Scottish racist.

Irn Bru

Next Time…

The most inconvenient, annoying and embarrassing part of my memory problem is my struggle with remembering names. In the second half of this piece, I will talk more particularly about the social consequences of autism, and the constant feeling I have of not belonging.

I’ll also talk about my past struggle with accepting the fact that I have autism, the stigma specifically attached the the term “Asperger’s Syndrome”, and the fact that some of my closest family members refuse to accept that I have autism at all. It… will get a little rough.

It’s not all gloom, though. I’ll be noting some of the many, many ways in which I’ve improved since my initial diagnosis, and in doing so hopefully give some ideas to those who deal with the same problems. I don’t want to be cured- I don’t have a disease, after all. I’m just different, and I want to help others understand those differences.

I obviously have a great deal of personal investment in the the cause of increasing awareness of autism, but that doesn’t change the fact that out of all the things I’ve written, this is by far the subject I feel strongest about. For that reason, I don’t feel shy about encouraging you to share this article, and especially the one to come. It may just help people to get that little bit more understanding of this life-impacting condition. Even leaving a comment and contributing to the discussion would be greatly welcomed.

UPDATE: Part 2 is here!

-Jesse (@BackBlogGuy)

(for a little side reading, this Blog also has some interesting thoughts)

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4 thoughts on “Coping with Autism: My Perspective, Part 1

  1. I am very grateful that you wrote this piece. You may find this hard to believe, but I think that I can (somewhat) identify with your experience.

    I almost can’t believe I’m writing this comment but, for some reason, I’m feeling inspired. I’m 23-years-old and I was also diagnosed with autism at age 14 (maybe it was 13, I can’t be certain). I can remember being a loner as a child, always feeling more comfortable by my lonesome than with other people (the complete opposite of my mother, whose mind works at mile a minute). I always had some trouble with looking people in the eye during speech and speaking above a mumble. However; I was always the studious one when it came to subjects that I cared very much about in school. I’m currently a student at New Mexico Highlands University – United States History major. History and English were my best subjects in school, although I hated school (I have a slight disrespect for authoritative institutions). I also do not have a numerical mind as I struggled through algebra classes throughout high school and college.

    When I was diagnosed, I didn’t really know what o think. Today, I still don’t know much about autism. I’m afraid of the stigma surrounding mental health issues and, because of that, I don’t’ talk about it that much. I usually only talk to to someone if they bring up the subject; I don’t initiate the discussion. Socialization has been the hardest for me, which is common throughout the spectrum. Most of the time, I have no problems with being alone. Isolation is still my best tactic for research because I’m easily distracted. However; even during the rare moments when want to reach out to people, it is extremely difficult for me to initiate a conversation. I just don’t what to say or how to say it. It’s like there is a secret that everyone on the planet knows except for you and you’ll do almost anything to find out the secret just so you can have a reasonable dialogue like a “normal” person. But, if a “cure” for autism was released today that was guaranteed to get rid of all my social anxiety, I would not take it – I wouldn’t have any idea how much of my personality that that “cure” would change. Maybe it would change everything about me.

    I would like to know a little more about your experience.

    1. Thanks for sharing! It’s pretty funny that we’re the same age and got diagnosed around the same time!

      My childhood memory is almost as bad as my working memory, and so aside for one or two completely random moments I can only recall fragments, at best, of any point before my teenage years. Most of what I know about my childhood, I’ve been told by others. I do know that I was also a loner. I’d sit in front of the TV and watch the BBC cartoon version of The Lion, the Witch and the Wardrobe over and over again. In primary school I was almost placed in a special needs group, but then they decided not to. I’m not sure whether they decided I didn’t actually have special needs, but either way my academic performance was such that they decided to keep me with everyone else. As far as eye contact and speaking clearly go, I was still struggling with that in my teenage years so I have some recollection. Nowadays, it’s a complete non-issue – most of the time. I’ve noticed that when I’m not fully comfortable, I have more trouble projecting. As for my later academic experience… it’s a long story, and one more to do with my fragmented family than my autism. Suffice to say I’ve been picking up the pieces since high school. I’m just about to go into University, but it’s a University I can afford rather than a University I want. As a result of my terrible date and location memorisation, History and Geography were by far my worst subjects in school as a whole. Matchs, though, was surprisingly one of my better subjects.

      I can’t say I know a whole lot more about autism than you do: what I do know is mostly limited to my own experience. Most of my learning process has been identifying those things I do differently. Of course, that’s nigh on impossible for some things, and the process of studying for and writing this article has helped me learn more about those trickier aspects. I’ve had very close experience with the stigma, so I can understand your hesitance to talk about it. It was only really during my missionary service that I began to feel comfortable – perhaps to a fault – with letting anyone and everyone know.

      As I talked about in Part 2, the social aspect is the part I’m most fighting to better myself at. The way you put is resonates perfectly with my experience. I certainly don’t plan on giving up. I want to have a large group of friends and even a family – That is, my own family, if you know what I’m saying.

      Thanks again for reading and sharing your thoughts!

  2. Hey Jesse, thank you so much for sharing this! This is amazing, it is insightful and even inspiring! I don’t have any personal experience with autism but I have worked with children with autism. And I have found that with the spectrum being so wide it’s hard to relate and to understand. I think those with autism are often underestimated and misunderstood. People often see it as something to try and fix or even hide, but the more an individual can understand them selves the more others around them may understand. And I think that’s what your article is doing it’s encouraging to hear you refer to your autism as a characteristic rather than an identifier. No matter what it is in life another’s prespective and experience is always valued, so thanx for letting us in! Look forward to the next article!

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