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

Marla is a blogger, artist, homeschooler, and mother of Maizie (a really cool autistic kid). We've commented back and forth on each other's blogs a number of times, and recently she asked if she could do a written interview with me on some aspects of autism, terminology, education, etc. Originally she was going to post my responses on her blog, however, after actually writing out my responses (and noting how lengthy they were) I determined that I would prefer to post them here myself.

This isn't the kind of thing I normally post, and is definitely more personal in nature than I usually get into here, but after some consideration I decided that it would probably be worth getting out in the open. I figure that there are likely others out there with histories similar to mine who might be questioning whether they even have a "right" to public self-advocacy because they don't necessarily fit every autism stereotype in existence. Plus, I think it's good and important for younger autistics and parents of autistic children to see that yes, we do grow up and become adults, and that we turn out in a variety of ways just like anyone else.

Questions in bold are courtesy of Marla. Responses are courtesy of me.

I've broken the interview up into 3 parts, because my responses were so long. This is Part I.

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1. Reaching a diagnosis for our daughter took years. How old were you when you were diagnosed with Autism? Were you aware of the diagnosis and what were your thoughts or feelings regarding your diagnosis at that time?

An accurate diagnosis took years for me as well. My parents knew I was different from the beginning, and I was identified as having social and behavioral difficulties in early childhood (in addition to being generally “quirky” and having certain unusual skills).

Wright Flyer replica drawn when I was 19

Nevertheless, throughout much of my youth I did not have any specific “official” diagnosis that I know of.

Still, though, I was aware that there was “something going on” with me based on how I was treated in school and elsewhere, and how people talked to and about me. Sometimes I was given extra help and told that it was because I had “difficulties staying organized”. I was also told on multiple occasions that I was “socially immature”. Etc.

I remember being worried that perhaps I was “retarded” and that nobody was telling me, because sometimes I went to the same room for help as the special education kids did. However, I was also in the gifted program for a few years.

Me at around age 2

Altogether it was very confusing and I expressed this confusion in part by wondering if maybe I'd been born with some weird thing nobody was telling me about (like an extra head or a tail that got removed!).

As a teenager I was evaluated for ADHD and for a while everyone (including me) thought that was the magic answer to what was going on with my brain, but despite getting some help from medication, I still had “other stuff” going on that did not seem to fall under the ADHD umbrella. I was also diagnosed as having social phobia for a while (as my social confusion was interpreted as fear; it wasn't, but apparently that's a common mistake made when evaluating autistic girls especially).

After a very rough start in community college, I was educationally evaluated and found to exhibit patterns characteristic of learning disabilities, which thankfully resulted in my getting some accommodations – I don't think I could have graduated without them.

Anyway, to make a long story slightly less long, I was finally diagnosed with PDD-NOS and then Asperger's in 2005, at the age of 26. I was referred by a psychiatrist for evaluation, which was performed by two psychologists: one investigated my developmental history and discussed my various issues with me, and the other performed testing. I was definitely aware of the diagnosis because I was there when it was given.

My thoughts and feelings following diagnosis were initially a combination of relief and a bit of disbelief. I was, on the one hand, amazed at how so many of my experiences suddenly had context when they'd just seemed “scary” and anomalous before.

However, on the other hand, I did a lot of second-guessing of the diagnosis and of my own self-awareness surrounding it. I was very worried at first that accepting the diagnosis would mean “using it as an excuse” (and some of the web sites I read during this time did not help in that regard).

I also kept finding myself coming up against stereotypes and misinformation – e.g., comments suggesting that if you understand that you are autistic, you can't actually BE autistic, and that if you can communicate at all, you shouldn't claim to be representing an “autistic” point of view. I certainly didn't want to do anything dishonest or harmful, or to claim to be anything I wasn't, so initially I found myself really wrestling with wanting to publicly advocate but wondering if I was “legitimate” enough to do so.

Over time, though (particularly as I continued communicating with other autistic adults), it became abundantly clear that there was something unmistakably “real” that I had in common with these individuals.

I'm not saying we're all alike, or that I can communicate well with every autistic person there is, but rather that there are some patterns that come up so often (in our communication styles, in the way we use language, in the way we developed as children, in the kinds of struggles we have as adults, etc.) that they can't really be anything BUT evidence of something genuine and shared. So now I do feel more or less okay presuming that I can speak out as an autistic self-advocate, and in some ways I feel like I have a responsibility to do so – after all, there are almost certainly others out there with histories similar to mine who may be as apprehensive as I was in the beginning, and I think it's a shame that so many of us end up held back by stereotypes and misinformation.

2. I find that adults with Autism have excellent advice for me in regards to teaching, advocating and caring for my daughter. Did your parents do anything in particular while growing up that you found helpful? Did they do anything that caused more harm than good?

My parents did a lot to help me growing up. I know based on memories and papers I have that they tried their best to get me appropriate school services – I am sure it is at least partly due to their efforts that I ended up being given remedial help in some areas and “enrichment” in others. They also (especially my father) seemed to have a sense of what areas I needed help in outside school and rather than making a huge deal out of them, they would just come up with strategies that helped me address these areas.

One thing that comes to mind in this regard is when I was in my early teens and hadn't figured out basic grooming skills on my own – I didn't know how to wash or brush my own hair or use soap properly. This was one of several things that I guess most kids just “pick up”, but which I didn't. So for a while I had to wash my hair in the sink (while clothed, of course) under supervision so someone could show me the proper steps, make sure I actually went through through them. After a while I was able to take over that stuff on my own, and I have been quite scrupulously clean ever since establishing a routine in that regard, but it was definitely a hard area for a time.

There were also some things they (particularly my dad and stepmom) did for all the kids in the family (I'm the eldest of 5) that were probably somewhat unusual, but which ended up being really good for me. For instance, they had a chart on the wall for a long time that listed all the household chores that needed to be taken care of, and each week we'd all do a few things from the list. My stepmother (being an engineer herself) took great care to write out all the little sub-elements of each chore – the result being that instead of the chart just saying “clean the kitchen”, it described what was involved in cleaning the kitchen step by step. So I was able to learn how to keep a tidy environment that way, because I didn't have to deal with the ambiguity of just being told “clean this room” -- rather, I got to follow specific steps like, “Pick up items on shelves and dust underneath them”.

As for whether my parents did anything that caused more harm than good – I think like all parents they were human, and certainly there were areas of overcompensation or misunderstanding. Sometimes it seemed that they were being a bit over-protective, and other times, it felt like I was being pushed too hard to do things I didn't have the tools to do, but I don't think what I experienced in this regard was more or less extreme than that experienced by most people growing up. Overall, I think my parents did the best they could with the information they had.

3. School can be a challenge for individuals with Autism. What was your schooling experience like? If you could go back and have school be done differently what would you change?

My view of mass education is that it needs a major overhaul -- not just for the sake of autistic kids, but for the sake of all kids. While I believe very much that certain academic standards ought to be met (e.g., that teachers, whether they be in public, private, or homeschool settings should try their best to impart true information to their students), I do not believe that committing to try and teach children things that are useful, interesting, and true translates to a "one size fits all" educational experience. Some kids need more structure, others need less. Some have sensory senstivities that make a "regular classoom" effectively inaccessible to them. And all kids learn/absorb information about different subjects at different rates.

If I could go back and design an "ideal" educational environment for my child and adolescent self, it would definitely take a lot more individual variables into account.

The environment would have been a lot quieter, for one thing, and there would have been more unstructured time for "research" in rooms packed with interesting books and materials to experiment with.

There would have been no requirement to eat in a noisy, smelly cafeteria, or to play kickball at recess -- I would have been allowed to just read or do whatever else was actually relaxing for me on breaks, as opposed to a mandatory activity that just left me more stressed out than before.

There would also have been more diverse opportunities for physical activity and exercise -- i.e., more play structures and swings, ladders to climb, etc., as opposed to just sports fields and the expectation that anyone older than eight would play team sports during every recess and gym class.

There would have been more attention paid to the problem of bullying, and kids who got bullied would never be told, "Oh, just ignore them," or, "You're provoking them", or "Nobody likes a tattletale".

There would have been more visual materials available for kids like me who were good readers but had auditory processing difficulties that made lectures very hard to attend to and process.

Teachers would have been better informed as to the variant developmental styles of their students; e.g., I wouldn't have been sent out in the hall as I was for such offenses as "answering rhetorical questions" or interpreting things literally.

That's just a few things, but those are the ones that come to mind immediately.

4. Many children with Autism have difficulties with their health and often struggle with fine or gross motor skills. How was your health growing up? Did you or do you still struggle in these areas?

Well, as a baby I was apparently very “colicky” and cried a lot, and I got a lot of fevers and ear infections as a toddler – but other than that, I've generally been in pretty robust health my whole life. I still rarely ever get colds or flu, and when I do get these things, I recover very quickly.

Probably the most significant health issue I've dealt with over the long term is simply that of knowing how to best interpret my own bodily signals and take care of myself – there was a period in college wherein I barely ate or drank anything just because I was too busy to think about that sort of thing, and by the time my body started feeling odd enough for me to notice, I felt really bad. At one point I actually started worrying that maybe I had a brain tumor or something because I just felt so tired and dizzy all the time, but once I learned to do things like drink enough water and eat actual food regularly, I felt a lot better.

As far as fine/gross motor skills go, I have always had reasonably good fine motor skills. I've always loved drawing and have also done a fair amount of calligraphy; at one point in high school I was writing out my assignments in calligraphy and my English teacher told me to stop because he was sure my homework was probably taking me hours!

Writing/drawing from when I was in kindergarten

Gross motor skills are another story, though. I have always been good at climbing (apparently I was “in and out of my cot like a monkey” fairly early on), and my sense of balance was excellent. I used to climb on high shelves and up tall trees without an ounce of fear, and was good at walking on balance beams and fences.

However, I was terrible in gym class growing up – I couldn't really throw, catch, or hit a ball at all, and I have a long history of “tripping over my own feet”. I used to fall down a lot while walking/running as a kid, and nowadays I still have a lot of bruises on my legs as I am forever walking into objects.

I am not sure what this particular set of strengths and weaknesses says about my brain, but it has definitely been interesting growing up with it.

Continue to Part II

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

Back to Part I

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

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

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Part III

7. Do you consider yourself to be “high functioning” Autistic or Aspergers? I hear a lot of debate about the ‘Autism Spectrum’. What do these terms mean to you? Is there anything parents need to keep in mind when using these terms to discuss Autism?

Right now (based on what I've heard and read) opinions are divided on whether "autism" and "Asperger's" exist as separate neurological entities. Some people (professionals included) seem to believe that almost everyone currently diagnosed with Asperger's could actually be just as accurately diagnosed as Autistic, whereas others see definitive differences between the Autistic and Asperger's cognitive profiles.

Personally I do think the data support the existence of some cognitive "sub-profiles", and that over time these sub-profiles may be correlated with particular types of brain architecture. There might very well, for instance, be a cluster of individuals with good verbal facility but poor motor skills, and a cluster of individuals with poor verbal facility and good motor skills (along with many other clusters; those are just examples). However, I don't necessarily think that the present ways most people think about Autism, Asperger's, and PDD-NOS actually reflect degrees of brain similarity and difference between these sub-groups.

For one thing, different people are diagnosed in different settings for different reasons -- e.g., sometimes a person might have a designation of Asperger's from a psychologist, but have an "educational" designation of Autistic or learning-disabled for the sake of being able to access particular school programs.

And personally, I have a hard time shoving myself into any of the usual stereotypical categories.

I have some areas within the language domain where I excel (such as vocabulary) and other areas within the same domain that pose tremendous difficulty for me (such as "spontaneous speech" - I have a lot of trouble answering unexpected questions).

I have a bachelor's degree but not a drivers' license.

I have a long-term partner with whom I cohabitate, but get flustered when co-workers ask me questions like, "How are you?"

Me and Matt (my SO)

I have no trouble paying my bills on time, but it took me until at least age 25 to figure out what credit cards were actually for and why anyone would bother with one (and I still mostly avoid using them, as to me it feels like paying for something twice).

I learned to read before I was toilet-trained.

I spoke early in the sense of learning to pronounce words, but even as an adult struggle with accurately describing when I am hot, cold, hungry, ill, etc.

Given all that, as far as I'm concerned, it makes the most sense to just call myself "Autistic" when the situation calls for any sort of identification along those lines, and then specify more about my actual abilities as needed.

As far as the "high functioning" thing goes, while I admittedly have used this terminology before for the sake of convenience, it isn't something I like to promote the use of, as on a large scale, "functioning labels" seem to hurt more than they help. Once you introduce the idea of "functioning levels", you have a situation where those designated as "low functioning" tend to get written off and presumed incapable of learning much, whereas those of us designated as "high functioning" are presumed to not need support, or not need particular kinds of support that we might actually benefit greatly from.

Plus, there's the fact that a person's "apparent" functioning can differ tremendously based on the environment a person is in, or what they are doing. I am not the first person to suggest this, but in my opinion, "functioning level" really only makes sense when applied to particular skills. E.g., it is quite possible that someone with good verbal skills (who would be more likely to be perceived as "high functioning") could have more difficulties with daily living than another person who is minimally verbal. So in that case, it makes sense to say that the first person has higher verbal functioning but lower daily living functioning, whereas the second person has lower verbal functioning but higher functioning in daily living skills (such as, say, doing laundry).

Some people might consider this too complicated, but I think that it does a great disservice NOT to recognize that people might need very individualized forms of help, and that you can't get everyone the help they need by simply assigning them to one of two superlative categories.

What's more, even if you want to take the "clinical" angle, there is actually nothing in the diagnostic criteria that says anything about "severity". As I understand it, autism is a cognitive style, not a list of things a person absolutely can or cannot do. Hence, it makes sense that you're going to have a population of people who are all autistic due to how their brains are wired, but who vary considerably in their abilities at any given point in their lives. I think that a lot of the confusion that comes into play in autism discourse occurs because people are so desperately trying to conceptualize autism as a list of specific skills (or lack thereof), which makes it extremely difficult then to understand that autistic people do grow up and change over time.

As I see it, it is very important to continue to recognize HOW someone learns and perceives, regardless of what specific things they end up learning how to do. There have been a number of experiments in which both autistic and nonautistic subjects were able to complete a task, only it was evident that the autistics were using different strategies to do so. And it's crucial to recognize things like that, as they could be quite relevant to things like education.

Regarding the term "Autism Spectrum": personally I like it as a term, but I probably conceptualize it differently than some, and I don't agree with some of the ways in which it is conceptualized it. I am an electrical engineer by occupation, and hence very familiar with the electromagnetic spectrum. So when I think about the "autistic spectrum", I think of it in much the way I do the electromagnetic one, meaning that I don't see it as implying anything about people on it being "better" or "worse" than one another, but just different in their particular attributes while still having something important in common. I guess I sort of see it as analogous to saying, rather than, "Mary is on the high end of the spectrum, while Bob is on the low end", something more like, "Mary is violet-autistic, while Bob is orange-autistic".

I think that if the spectrum concept is to be at all useful, it can't be about making value judgments about people, but rather about indicating that persons in the same general demographic still vary as individuals. I know that there is some "danger" in using the spectrum term without qualifying it as I have here, as people will sometimes just assume that you are obviously using it to imply a linear gradient from people who are "more nearly normal" to people who are "more impaired in an overall sense", but personally I plan to keep using it (qualified as necessary) because it's a very useful shorthand. If I don't say "spectrum", I feel like I have to say something like, "All persons who are or could be identified as Autistic, PDD-NOS, Asperger's, Rett's, etc.", and that just feels cumbersome.

As far as what I would say to parents: I don't really want to give advice about terminology, however, I do think it's at least worth telling a kid that yes, they think and learn differently, and that they might need different kinds of help in some areas than others their age, but that they are still first and foremost a person. One of the biggest issues I dealt with growing up was feeling much of the time like I was "bad", "dumb", and "lazy", as I had no other explanations available for why some things were so hard for me.

When I couldn't do something others my age could, I often felt like it was due to some horrible moral failing on my part. This is not to say that I was never actually naughty -- all kids are sometimes, and I was no exception -- but looking back I am often shocked at how many things I spent years feeling guilty about that now are obviously cases of my not being developmentally ready for a given thing.

Similarly, I am only just coming to the point of learning to use my strengths effectively as an adult, in part because some of them (like my tendency to form very strong, intense interests) were considered pathological by teachers and others while I was growing up (some of my elementary school teachers saw my fixation on Star Wars as evidence that I was "too lazy to learn about anything else).

My Star Wars figures all lined up

If my strengths and weaknesses had been conceptualized differently, I probably would have been considerably more at ease growing up. This may not be true for all kids, and they will of course vary in what they can conceptualize at a given age and developmental level, but I definitely think they need to be told something at some point.

8. How has blogging affected your life? Why do you blog?

I began blogging without presuming that anyone would necessarily be interested in what I wrote -- I initially started out just wanting to have a repository for some of my thoughts on longevity (a major interest of mine), but over time my blog evolved into a kind of platform for commentary on several of my interests and my outlook on life in general. Blogging is a great medium for me because not only is it text-based and asynchronous, it allows me to just be myself and have people choose to respond or not based on their level of interest in what I've written.

I have always believed that human associations are best when they are not "forced", and one positive way in which blogging has affected my life is that I've been able to get to know various people who share my interests in a very relaxed, organic way. I have also learned a lot about language and communication in general through some of the conversations I've had online. And I've also gotten a much broader sense of the sheer variety within humanity by interacting with people from all over the world. I've loved to write for years so I am more than thrilled that so much has come out of the combination of writing and internationally-networked computers.

9. I can think of many questions to ask you but had to choose just a few for this interview. Is there anything else that you would like to share with parents who are raising children with Autism?

Well, one thing that I would like to share in conclusion (but that isn't necessarily a direct response to this question) is that it is very, very important to recognize all autistic people as autonomous individuals and to encourage self-advocacy whenever possible. In answering these questions the way I have, I've probably edged close to “self-narrating zoo exhibit” mode (to borrow a phrase from self-advocate Jim Sinclair). This is something I know can sometimes be very helpful both to parents of autistic kids and to other autistics, but at the same time, it's something that I need to be careful not to over-do, or at least only do very consciously.

It's very easy for those of us who grew up figuring nobody cared about our experiences to over-share when people show interest, and to then regret it later when we realize we've set ourselves up to feel like we have to tell our stories on demand all the time. I'm not saying I felt like that in this situation (I didn't at all, and I was actually happy to have the opportunity to write out some things I've actually wanted to for a while), but still, I've learned enough about the self-advocacy sphere at this point such that I figure this matter is worth mentioning.



I guess what I'm trying to say is, as much as it's good and useful for autistics to learn to describe our experiences, it's equally important for us to learn and be taught that our lives and selves are our own, and that we have just as much right to refuse to answer questions as we do to tell our stories on our own terms. In other words, teaching kids (and adults!) to say “No” and “I don't know”, or “I'd rather not discuss that” are just as critical to self-advocacy as teaching them to describe their sensory issues is.

"Don't Worry, You Sound Fine!"

I had a bit of a minor epiphany this weekend regarding communication -- specifically, my own efforts to communicate, and what things contribute toward whether or not these efforts are effective.

Generally speaking, I feel that my communication is effective when the "output" I generate (whether it be in the form of text, speech, art, or any other means) corresponds to what I actually know, think, and feel about a particular subject or concept. While it can be difficult to gauge in advance whether any communicative effort will actually cause others to obtain a true, clear understanding of what's in my head, I can definitely say that my efforts "feel" more or less effective depending upon a variety of circumstances.

Anyway, though, the realization I had this weekend was that I probably need to be a lot more careful about using speech to discuss complex ideas. Sometimes I think I err too far toward the side of assuming I can do it effectively when, in fact, I would be a lot better off using a different medium or at least trying to get a sense of what the ideas I'm going to be discussing will be in advance (so I can write possibly-copious notes or even a script).

I'm usually reasonably okay with speech when I'm answering questions like, "What time is it?" or "What is your zip code?" -- that is, basic factual queries with easy reference points in the "world outside my head". There's also a particular sort of social setting I seem to do all right with as far as speaking goes, and that is the setting wherein those around me know me really well, to the point where we've got a lot of shared context -- and when the conversation itself isn't demanding constant responses from me.

The settings I find speech less effective in tend to be those wherein (a) those I'm trying to communicate with don't necessarily know me very well, and/or (b) I'm in a position of having to "summarize" ideas (or even just report on what I know about something, or how I feel) in real time.

The issue with trying to communicate with people who don't know me very well is that a lot of people apparently run around with all kinds of assumption sets in their heads regarding what it "means" when a person says this or that thing, or uses language in a particular way, etc. This is especially problematic when I'm trying to use speech, as one thing I've noticed is that speech tends to be taken as more indicative of what a person "really thinks" than writing is, even though for me, speech is actually a lot less likely to be accurate (which is one reason I love having a blog to point people to -- they're a lot more likely to get a sense of what goes on in my head from reading a few posts here than they are from talking to me for an hour).

I only became aware of this particular social bias a few years ago, and I'm still trying to figure out how best to deal with it.

Anyway, I've been told on more than one occasion, by people trying to reassure me (I suppose), that I "sound fine", and that I "shouldn't worry" about whether or not I'm coming across as articulate or not. This is where the major part of my recent minor epiphany really comes in -- basically, it occurred to me this weekend (in the context of a rather unusual communicative interaction, at least for me) that when people tell me I "sound fine", they're most probably assuming I'm nervous or something, and therefore trying to set my mind at ease.

But the thing is -- I'm not actually nervous, at least not in the way people seem to think I am in the circumstances where they tend to tell me to relax and not worry about how I sound. Rather, I'm just well aware of how often I've ended up saying things that have failed as far as communicating what is actually in my head goes, and when entering interactions, I am quite reasonably concerned about avoiding this.

I know I come across as "articulate" at least some of the time, but as far as I'm concerned, this can work at times as something of a liability as opposed to purely an asset.

For one thing, nobody (as far as I know) thought I had "speech issues" growing up, as I'd amassed a fairly large and complicated vocabulary by the time I was in preschool, and my elocution was generally very clear. But internally, I was often very disconnected from what I was actually saying -- to the point where I often couldn't describe sensations accurately at all, which led to no end of difficulty for my parents as they puzzled over whether I might be hungry, tired, sick, or just cranky. (I only found out later on that it is actually quite common for autistic kids to have no trouble reciting "innumerable nursery rhymes" -- as I could as a youngster -- yet not be able to explain how we feel in real-time.)

Furthermore, because I didn't even realize the extent to which words were "supposed to" connect with one's actual thoughts, I grew up with a lot of distorted ideas about what it meant to think something, know something, or even feel something.

I remember, for instance, teachers telling me that if I couldn't explain something from memory on demand, that meant I didn't really understand it. In sixth grade I once had to give an oral book report presentation, and even though I'd read the book I was presenting on multiple times, I was not able to summarize it in real time or even explain why I liked it. I had pictures and impressions in my head regarding what the book had been about, but the words just weren't there. This ended up getting me into trouble, as I ended up barely saying anything during the presentation, which was interpreted as me being "too lazy" to have actually done the assignment.

It wasn't actually until after college that I gradually came to realize that I actually knew a whole lot more than I thought I did about numerous things -- I just wasn't very good at expressing my knowledge verbally on every subject I had actual knowledge in.

Given this, it might sound contradictory that I have also experienced the opposite phenomenon on numerous occasions. It's not. Basically, due to the same general confusion over language that sometimes resulted in my being convinced I didn't know certain things because I couldn't talk about them, I also sometimes assumed that because I could speak fluently about something, that meant I did understand it.

I remember even in college being really lost in a chemistry class I was taking, only to be repeatedly reassured by the teacher that she could tell that I "knew my stuff", based on my sporadic interjections of certain words during class discussions -- when in fact, I'd barely studied and was actually quite clueless. I eventually buckled down, studied a lot more, and became considerably less lacking in clue, but my first semester went pretty badly in part because I still (at age 18) didn't really understand what it meant to "understand" something, and to demonstrate one's understanding.

So, basically, when I say that I'm concerned about how I'm going to come across when I speak, it's not about my having "public speaking jitters", or worrying about looking dumb, or anything of that nature. Rather, it's about knowing that my "speech module" doesn't automatically engage with my "thinking module", and hoping to find ways to avoid having this lead to problems. It's actually kind of astounding to look back and realize how much more clueless I was about communication even just five years ago than I am now, and I suspect I still have a lot to learn moving forward!

On Long-Term Brain Maintenance

This post was to be my submission for the Hourglass I blog carnival on the subject of aging. It was finished too late for inclusion in that carnival due to Life Getting In The Way, but I'm posting it here anyway as I said I'd post something, and because if not for learning about the carnival, this post likely wouldn't have been written.

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In many respects, the brain's health is intricately dependent upon the overall body's health (e.g., a problem in the circulatory system, such as a clot, can wreak havoc on the brain via disrupting its blood supply). Anyone who wants to keep their brain in good shape over the long term would therefore do well to monitor their body, paying attention to such variables as diet and activity level as well as "lab values" like blood pressure, cholesterol, and other measurable factors.

Of course, due to individual genetic and other factors (socioeconomic class, etc.), it's still possible for a person to try their very best to maintain their health and still end up developing dementia and other brain-affection conditions, but the following common suggestions still represent good basic sense:

- Keep hypertension under control to help ward off vascular dementia

- Avoid or quit smoking

- Check your HDL levels and try to keep them high

- Keep challenging yourself cognitively -- and don't restrict yourself to crossword puzzles! Volunteer, read about interesting things on the Internet or from books or magazines, listen to podcasts, learn new computer interfaces as they come out, etc.

- Get plenty of physical activity, at least to whatever degree your individual life variables (disabilities, location, etc.) permit.

I'm sure the above suggestions will be quite familiar to most readers, as they're a pretty standard set of Helpful Hints for Aging Brains.

But what happens when a person is already doing all the above? What about the 90-year-old who has followed every guideline she could find with anything resembling decent scientific support -- how much will "good basic sense" help her as she moves toward her tenth decade and beyond?

Those are precisely the questions I often find myself coming back to when I read popular articles on the subject of brain health in the elder phase of life. I don't think there's anything wrong with such articles, and I'm sure some folks who read them end up beneficially changing some aspect of their lifestyle or going for an overdue doctor's visit as a result -- but the bottom line is that no amount of common-sense health maintenance can guarantee anyone good cognitive functioning* as centenarians or supercentenarians.

One of the most fascinating things about the brain is how it must simultaneously change constantly over time (in response to new information and other inputs) and maintain the aspects of its structure that permit it to keep functioning as a person wants it to as he or she ages. This is true for the body as a whole, of course, but particularly interesting to consider in the case of the brain, as (unlike other organs and parts, which can be transplanted or replaced by prostheses) the brain is unique to each individual in such a way that you wouldn't ever be able to replace it with another and expect to get "the same person" as a result.

In other words, while a heart transplant (certain urban legends notwithstanding) won't give you a personality makeover, a brain transplant (if such a thing were physically feasible) would essentially replace an entire individual consciousness with another.

It is this uniqueness and irreplaceability of brains that makes them of special concern in thinking about healthcare across the lifespan.

Before continuing, a brief disclaimer: I am not suggesting in anything I write here that I expect humans to someday become "immortal" in the sense of being basically omnipotent and invulnerable to any possible threat. While it's fun to write science fiction stories about infinite electronic "consciousness backups" and futures in which the descendants (or intelligent creations) of today's humans manage to escape from this universe through a wormhole into a fresh, new universe, I would hardly call such scenarios relevant to real people facing the effects of brain aging now or in the relatively near future -- except in the sense of being engaging to the imagination.

That said, I do think it more than reasonable to surmise that the conditions presently grouped together as "the dementias" will likely someday:

(a) subsume the phenomenon of milder memory loss and progressive cognitive difficulty currently considered "normal aging", and

(b) become amenable to preventative, maintenance, and rejuvenation treatments.

As far as existing options go, certain pharmacological agents seem to improve cognitive functioning in persons with dementia. For example, many individuals with dementia currently take drugs that work on the cholinergic system in the brain. The rationale here is that since some dementia-affected brains show reduced numbers of cholinergic neurons (and related activity), cognition in these individuals can be improved by increasing the amount of choline available in key areas of the brain (such as the hippocampus and cortex).

This explanation strikes me as somewhat simplistic, though, and I strongly suspect that dementia will be revealed as more and more complex the more it is studied. I don't see the current generation of drugs as either "optimal" or capable of accounting of what is likely the full picture of what causes people's brains to change over time in ways not welcomed by those experiencing the changes. It will be interesting to see the long-term results of drugs intended to break up amyloid plaques, of potential treatments that alter protein regulation, but it should probably not be assumed that any treatment will comprise a single "magic bullet" that protects the brain indefinitely.

Rather, future preventative, maintenance, and treatment regimens for age-related memory and other difficulties will likely consist of a system including:

(1) Early detection -- the sooner physical changes associated with Alzheimer's and other dementia variants can be identified, the sooner the person experiencing them can begin treatment, thereby diminishing the likelihood of "compounding" degeneration.

(2) Maintenance of the healthiest possible brain state. While the essential functions of human metabolism make it impossible to prevent all degenerative signs, we can certainly at least think in terms of minimizing the impact of these signs. Some contemporary drugs (e.g., cholinergics) will likely assist in this regard, and more advanced medications with fewer side effects will likely be developed over time.

(3) Rejuvenation of brains which have accumulated functionality-affecting compounds, or which have experienced the beginnings of cell loss or other neuronal degeneration. It remains to be seen how much functionality (i.e., memory and cognition) can be restored in brains that have experienced such things as widespread cell death, but the brain's incredible plasticity and built-in redundancy give us a hefty leg up in this regard even in the face of the relentless march of metabolic processes.

(4) Failing the above three options in the near-term, adventurous types may even consider cryonic suspension in the event of severe brain injury or illness. While most assuredly a gamble, there are some cryonics options with costs comparable to typical funeral expenses, making these options a reasonably valid (if still controversial) incarnation of Pascal's Wager suitable even for atheists.

As far as what I'd like to see, in addition to the above (primarily technical) developments, one thing that strikes me as tremendously important is the accessibility and equitable distribution of any effective brain-maintaining resources that end up being developed. I'm no great shakes at socioeconomic policy, but I have seen the great lengths people will go to to access, preserve, and affirm the value of that which they consider precious.

Another thing to remember is that efforts to develop treatments must occur in concert with efforts to avoid such things as abuse, neglect, and overmedication in the present and near-future population of persons with dementia. Plenty of people alive today are already dealing with dementia first-hand -- and it's important to avoid letting these people get pushed aside and "warehoused", forgotten in the energetic rush to find cures.

It would be wonderful if humans made such progress in mitigating brain-degenerating conditions that our primary concern looking forward was the possibility that someday we might run out of room for our vast memories, but we're not there yet.

The way I see it, if people can afford fancy cars, designer slippers, golden toilets, advertising for endless "Reality TV" series, and rhinestone-encrusted dog collars, there's no reason to figure that the world-at-large is somehow lacking in raw resources. At the very least, it's worth running the experiment that entails (1) affirming the value of all persons regardless of age, and (2) making fair access to life (and brain) sustaining care resources a priority for individuals of all ages, regardless of disability or other status.

After all, whenever a brain is lost (whether it be to one of the fatal dementias or to accident or other illness), an irreplaceable individual is lost forever -- and I would say that individuals merit at least the same courtesies most humans reserve for old paintings and books and other one-of-a-kind treasures!

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* By "good cognitive functioning" I mean "functioning capable of sustaining a person's life and permitting memory retention, recall, and lucid conscious awareness". I don't mean "functioning typically" or "functioning normally" in the sense that "good cognitive functioning" is sometimes assumed to imply.

Hourglass Carnival Entry Delay

Well, due to an annoyingly long wait in a pharmacy today (I had to pick up a prescription at Kaiser, and it ended up turning into a 2-hour exercise in meditation on the subject of patience), my entry for the Hourglass blog carnival on all things aging-related will be delayed until tomorrow.

That might be too late to make the official cut, but I am still going to list the entry as being intended for the carnival.

Thanks (pre-emptively) to Ouroboros for setting the event up in the first place.

Ouroboros Announces First "Hourglass" Blog Carnival

The excellent biogerontology blog Ouroboros - Research in the Biology of Aging is going to be hosting a nifty-sounding blog carnival (aptly named "Hourglass") on July 8:

Topics of posts should have something to do with the biology of aging, broadly speaking — including fundamental research in biogerontology, age-related disease, ideas about life extension technologies, your personal experience with calorie restriction, maybe even something about the sociological implications of increased longevity. Opinions expressed are not necessarily those of the management, so feel free to subvert the dominant paradigm. If in doubt, submit anyway. About the only sorts of things I’m going to turn away are quackery or promotions of a commercial product. So, no growth hormone commercials or glowing reviews of your own book, please. :)

Sounds like fun! It will be really interesting to see what participants come up with. I'm going to see about catching up on some of my biogerontology reading and submitting a post -- I've been thinking about "aging and the brain" recently, so perhaps I'll look into that subject area.

(More details here).