Interview on Growing Up, Autism, and Other Things - Part II

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Part II

5. How was making friends for you as a child? How is it now? What advice can you give parents for supporting their child’s friendships?

Making friends was extremely difficult for me. My troubles relating to peers were evident from a very early age, and were one of the reasons I ended up in special ed for preschool (as by that time I had had “no positive play experiences” according to one of my evaluations). Based on what I can piece together from memories and old records, I was apparently somewhat afraid of other kids, occasionally aggressive, and not all that cooperative when it came to things like sharing.

I remember being very happy to play alone for hours, especially with toys that had lots of pieces I could sort (like Matchbox cars, Fisher Price little people, Lego, etc.), and seeing other kids as “interfering”. My favorite thing to do with others was (and still is, to some degree) probably what you'd call “parallel play” -- that is, being physically present with someone but not necessarily doing a lot of direct interaction.

There were a few neighbor kids I eventually became friendly with (one girl in particular who lived down the street; we both liked “She-Ra, Princess of Power” so we sort of bonded over that), and I remember doing a lot of side-by-side coloring and play-doh modeling with some of them. I also had a few defined “roles” for myself that I would end up in when group games were proposed – e.g., the slightly bossy older girl across the street often wanted to play house, and I would basically volunteer to be the “kid” -- which for me meant that I'd get to just keep doing whatever it is I'd been doing before (climbing a tree, etc.). Or when we'd be inside playing with dolls or Lego, I would have my own little area (usually a hospital or spaceship) where I would play through my favorite familiar scenes.

As I moved out of early childhood, though, things got considerably more socially complicated, and I pretty much lost touch with most of the neighbor kids I'd been even marginally friendly with. By sixth grade I had no friends at all in my school, and by seventh grade I basically wasn't even attempting to relate to anyone my age. I remember feeling like nobody ever said what they actually meant, and I had had so many bad experiences by that time with bullies, etc., that I'd become very defensive. I would basically ignore people or tell them to “stop making fun of me” if they so much as said “hello”, because I was so accustomed to people only being “nice” long enough for me to do or say something they could laugh at.

My parents and teachers did worry about this, and I was sent to counseling on and off in the hopes that I could learn some friend-making skills from that, but mostly I found the very idea of “making friends on purpose” perplexing. When people said, “Anne, go make some friends”, all I could imagine was going up to people and saying, “Hi, will you be my friend?” and somehow that just didn't seem likely to work.

Eventually I made friends with someone who actually ended up becoming my best friend, which I still count as one of the most significant positive experiences of my childhood and adolescence. Basically, I started communicating with her because my parents made a rule that I had to initiate contact with someone from my school once a week if I wanted to retain my computer privileges (as I was using the computer a whole lot then, to the point of being obsessed with it).

I chose this girl to initiate contact with because she was somewhat familiar – she and I had actually gone to church and Sunday school together when we were very young, and I'd always sort of admired her from a distance because she seemed so creative and interesting. She was very outspoken, didn't seem to care too much about what others thought about her, and did cool things like knit Dr. Who scarves way back before knitting became “officially” cool again. :) And I also knew that we both liked Star Trek, so there was some common ground there to start with.

The first time I called her up turned out to be a very unintentionally funny exchange: I said something like, “Hi Larissa, this is Anne from school. My parents are making me call someone in order to be allowed to use the computer. Would you like to talk about Star Trek?” She still remembers that conversation now, and I think that the fact that she was not scared off by it says quite a lot! We started communicating more after that, sometimes visiting each others' houses to play computer games and yes, discuss science fiction (and later music when we both got very interested in certain rock bands and decided we wanted to learn to play instruments).

Me (left) and Larissa (right) at 8th grade graduation

Larissa and I live on opposite ends of the country today and don't talk as much as we once did, but we check in with each other every so often and it's always like we're just picking up on a conversation started a long time ago. I think part of what made that friendship possible was the fact that she really didn't have a problem with being seen with me in public – she would sometimes tell me when I made a social mistake of some kind, but she wasn't mean about it, and didn't see me as the kind of pariah many others did.

Being friends with her not only meant I had a close friendship with someone (finally), but it also gave me a bit of “protection” socially that I hadn't had before – i.e., because I hung around with Larissa, I became a bit more likely to be seen as “quirky art chick” as opposed to “scary, mentally disturbed girl”. So I was still on the fringes socially (and fine with that), but not so ostracized anymore.

As far as what I'd say to parents regarding supporting their childrens' friendships: when it comes to autistic kids, interests can be a major jumping-off point for relating to people. Sometimes having a physical object to point at can be very helpful in meeting people. I've gotten into some fun conversations with people about things like Star Wars and robots because of my wearing Star Wars and robot t-shirts.

Also, it's important to remember that just because a kid is having trouble making friends, it doesn't mean that s/he is pathologically incapable of being friends with anyone. Friendship takes at least two people, after all. I didn't get to be friends with Larissa by hiding who I was (or trying to), or by acting “normal” -- I got to be friends with her because not only did we find one another interesting, she was also unfazed by my eccentricities. Nowadays I have a few more friends and I have definitely found that friendship is really a matter of finding compatible people.

There's something of a pervasive misconception I've noticed which states that it is important for autistic people to learn to act as “normal” as possible so that their eccentricities won't “scare off” potential friends – when in fact, there do exist people that simply aren't as likely to be scared off! Of course all friends have to learn how to show mutual respect and consideration for one another, and autistic kids are no exception to this – but there's no reason to presume that a kid should be discouraged from things like flapping, playing with his/her hair, or going on at length about dinosaurs in order to become “friend material”.

Also, I would definitely like to see more parents of non-autistic children teaching their kids about respecting those who are different. E.g., if a kid comes home making fun of an autistic classmate's mannerisms, it would be much better for the parent to say something like, “So what if Billy was spinning around at recess – he wasn't hurting anyone, and everyone does different things for fun.”

6. You discuss communication issues a lot on your blog. What is the easiest way for you to communicate? How did you discover this as a child or teen? Did your family and friends encourage various communication methods? Do you have any advice for parents as they work to find creative ways for their verbal or non verbal child to communicate?

The easiest communication medium for me is definitely text – more specifically, asynchronous text (like e-mail and commenting). It took me a while to really acknowledge this, in part because while growing up, the general attitude I picked up on was that quick verbal answers were taken more seriously than written ones.

While I am sometimes okay with real-time communication, and while there are some (rare) people that I seem to communicate reasonably well with across various mediums, my main sense in real-time interactions is that everything is going very fast – too fast for me to really keep up effectively.

I discovered that I liked writing better than speaking (for communicative purposes) sometime in my teens, I think – I started randomly trying to journal my thoughts, and was very surprised to discover how much more able I was to put my thoughts into words on paper and on the screen. In some ways I think I really started becoming able to express my own thoughts accurately only after a period of writing regularly – it was sort of like a little light started in my brain and gradually became brighter as I got more and more of a sense of what bits of language went with which internal events and ideas.

This is one area in which I can definitely relate to even some non-verbal autistics – that is, while most of this happened “behind the scenes” for me as opposed to where it would be obvious to others, I can understand what Sue Rubin (a non-verbal autistic woman around my age) means when she says that when she began to type, her mind “began to wake up”.

While growing up, I don't really think anyone really knew the extent or nature of my communication issues.

As best as I can tell from my memories of growing up, people often seemed impressed by my vocabulary and how “grown up” and formal my phrasing could be at times.

However, there were clearly “idiosyncrasies” to my speech and communication that were noticed by others (and which I'm guessing might have been identified as “autistic-like” if I'd been born a decade later), but from what I can recall, were mostly interpreted as evidence of my being “difficult” or “stubborn” or “annoying” while I was growing up.

I had an excellent rote memory that enabled me to recite much of what I heard and read, and often I would “recycle” phrases I'd encountered previously after the fact, trying to pattern-match them to the situations I was in. Sometimes this worked and the phrases came out sounding more or less appropriate (I fell and had to get stitches in my chin when I was around three, and apparently I kept saying, “I am trying to appreciate this!” while the stitches were being put in!), but other times they just sounded random.

I also remember my parents commenting that they never knew what was going on at my school because whenever they asked me what I'd done, all I could say was that I'd “played”. (Basically, I have never been able to verbally summarize recent event accurately – I need time for the memories to settle and process in my brain before they become amenable to linguistic description.)

I repeated stuff a lot, too – a favorite phrase for a while was “ring around the collar” (from a detergent commercial), and I remember someone nicknaming me “broken record” at one point. I reversed pronouns for a while, too (saying “Do you want a cookie” when I meant, “Can I have a cookie?”), and talked about myself in the third person.

As I got older, I also began to quote extensively from magazines and books, especially in the context of trying to explain the “whys” of human behavior – at one point my parents tried to ban me from reading parenting magazines in the pediatrician's office because I would read them and then go around telling people what they were doing wrong according to the magazines.

I didn't really have any sense of why I personally did things for a long time, at least not that I could put into words, so I tried to use things I'd read in this capacity as well. In sixth grade when I was having a lot of academic difficulties (probably due to increasingly abstract material), and was asked why my grades were dropping, I said something like, “It is because I am too smart and the material bores me.” I didn't actually feel that way (in fact, I was very worried that perhaps I was NOT smart at all at that time), but I'd read some books/articles suggesting that poor performance could happen in “bright but bored” kids, so I quoted from them, hoping that would make people stop asking me to explain things I couldn't.

That kind of thing happened rather a lot, and generally it led to my getting in trouble for “lying” or “making excuses” -- but looking back, it's pretty clear that I often simply didn't have the words to explain something going on, which compelled me to figure that “some words” were better than “no words”.

It really has only been in my 20s that I've developed the ability to (more or less) consistently tell when I'm just “saying words” and when those words actually mean something.

Also, I should mention that in addition to being comfortable with text for “deliberate” communication, I have also been in successful communicative exchanges that have not really involved words at all. Usually in those exchanges, it's a case of me and another person just being able to understand each other based on something like shared context.

My grandparents (paternal), my brother, my very young uncle, and me (with the sun in my eyes), circa 1983

I've always been close to my paternal grandmother, for instance, and while we have spent time talking and writing to one another on occasion, there's always been a whole other dimension to our interactions that has less to do with the words we're using, and more to do with...well, things like timing and wonder and fascination and science and trees and Madeleine L'Engle books.

It's hard to explain and I don't know if I've done it effectively here, but I do know that communication definitely isn't just about words even though I do find text quite useful. I had no trouble communicating with a friend's non-verbal autistic kid when I met him a while back, either, and I have also been known to make friends with cats. :)

Me with Toby, a little girl kitten

As far as what I would recommend to parents: the major thing is to provide as many different potential routes of communication as possible. If a kid seems to like writing, encourage this, and look at the differences between their written and spoken language. You may be surprised at how much more easily your child communicates via one medium as opposed to another.

Also, remember that there are avenues of communication other than spoken and written language -- sometimes a person with no obvious language of any kind will do things like arrange objects in certain ways or at certain times, or follow various routines, or respond to stimuli in a kind of pattern that can be discerned through observation. I very firmly believe that everyone communicates regardless of type or level of disability, so while it's important to avoid "reading into" behavior in weird psychoanalytic or "projective" ways, it is always a good idea to start with the presumption that the autistic person is both self-aware and aware of the existence of others. You might be surprised at what starts coming into focus when you adopt that presumption.

Continue to Part III