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.
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