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.