Because of this uncertainty, whenever I encounter an adult on the spectrum, or really just anybody on the spectrum who is older than Child 1, I always have lots of questions. And it's been through my blogging experience that I've been lucky enough to meet Laura; who blogs at Life in the House That Asperger Built. She is an adult on the spectrum, married to another adult on the spectrum, and they have two children on the spectrum. She's also super awesome and she was gracious enough to indulge me in an interview and my myriad of questions. Below is the result of that, my questions in bold (thanks to Dani and Cheryl for your input; Lynn, not so much).
On a sidenote: There's a lot of talk in the autie parent community about “whether to tell our kids of their diagnosis.” I have seriously struggled with this question, particularly the “when to tell him” part, and this post by Laura is an absolutely amazing response to those questions: I Wish I’d Known. Thanks Laura! You rock. And if you guys don't already read her blog, please add her to your subscription list, because she's really, really great!
1. You've described yourself as a "self diagnosed Aspie." Can you explain what that means?
Well, in a nutshell it means I haven't sought or received official confirmation of my condition (Asperger's Syndrome) from a licensed medical professional. I've read the criteria for diagnosis laid out in the DSM-IV, and have determined that I meet them.
I haven’t sought a diagnosis as an adult, mainly because I don’t feel the need for confirmation of the obvious. There was no way I could have gotten one as a child. When I was a kid, it was believed that Asperger's was exceedingly rare and ONLY boys got it. Girls were diagnosed Autistic, but it was reserved for only the most severely affected girls. Otherwise, we were and many times STILL ARE misdiagnosed as ADD, ODD, OCD, Bipolar, Depressed....strange, shy, abrasive, rude, manipulative. There have been many great ways to describe and mislabel us.
2. Tell me what childhood was like for you. When did you know you were "different" ?
Looking back, I'd say I knew pretty early on. I had some odd behaviors that the adults in my life just couldn't figure out. Also, as is typical with Aspies, I was hyper-verbal and pretty smart. My large vocabulary and above average intellect didn't jive with my emotional immaturity and unrecognized sensory defensiveness. I was often accused of being manipulative or obnoxious.
Things really started to unravel for me socially around 4th grade, and pretty much just got worse from there as I proceeded through adolescence and early adulthood. I sunk into depression, spent a majority of the time suicidal, and engaged in self-destructive behaviors. One of the most vivid memories I have is being 17 years old, sitting on the steps outside my shrink's office, rocking and crying. I just kept thinking, "There's something really wrong with me, and no one will ever be able to help me."
That's not to say I had a miserable existence, there were many happy times for me. My childhood was not an unhappy one, but it was volatile, very volatile.
3. Tell me about the day you figured it out. What was that like?
I can't say it was really a "day" it was more of a process. Shortly after we got Coleman's diagnosis, I got every book about Asperger's and NLD that I could get my hands on. I found one book particularly helpful and asked my mom and mother-in-law to read it too. As I read, I started seeing so much of myself it was uncanny. My mom saw it too. Suddenly, it was like someone turned a light on and it all made sense. She would call me asking if I remembered doing this or that EXACT thing she'd just read in the book. Or asking if an explanation of a behavior in the book was also the reason I had behaved a particular way or had done a certain thing as a child. It had never occurred to me that she didn't understand why I did things. All I knew was that she didn't like it. During this time of discovery, she confessed that much of the time I was a real mystery to her. There were so many inconsistencies and incongruities, and a lot of bizarre behaviors. No "traditional" form of punishment/reward type behavior modification seemed to work with me. It was a real struggle for her.
So the process started by being able to explain the unexplainable in my childhood. Since then there's been a lot of self healing, and acceptance. It's actually been an enormous relief. When you grow up knowing there's something "wrong" with you, but not knowing what it is, you feel isolated. It’s as if you are the only one "of your kind" on the planet. The result is an ongoing inner war. Constantly burying who you really are in an effort to fit in and be liked, only to eventually lose your ability to sustain the act and find yourself isolated once again in your "otherness". That all ended for me when I found out I was on the Spectrum, because I found an entire population of people very much like me. Many have had the same experiences, and struggles. Most think very much like I do, and very few, if any, have been bothered by my occasionally abrasive forthrightness.
4. How does being on the spectrum impact your parenting (as far as you know)?
I believe my case is somewhat unique in that we're all on the Spectrum in my house. So, I think for the most part, the impact has been positive. I'm not as baffled by my kids as my mom was with me. That's not to say, I always "get it", and breeze through parenting. Sometimes I'm still like, "huh?" But I don't think that's any different than if I was NT raising NT kids. Children are just really odd little creatures sometimes.
5. If you could go back in time and give your parents some advice about raising a child on the spectrum, what would it be?
To *my* parents I would say, don't be so quick to assume the worst. If the behavior seems inconsistent with what you know to be basically true about the child, there's likely a legitimate reason for that. Instead of thinking, “This stinks! I hate it when she’s _____(fill in the blank: willful, resistant, lazy) like this!” Try thinking, “This is inconsistent, where’s the problem and how can we fix it?”
That's what I would say to my parents, but in fairness, they didn't know they were raising a child on the Spectrum.
6. Growing up, did you feel misunderstood by your parents?
Wow, this could be its own 2000 word post. Short answer; HECK YEAH! But I wasn't only misunderstood by my parents, it was everyone. I think the two biggest problems I had, were not knowing that I was being perceived as a smart ass that was too big for her britches, and not being able to accurately predict the most likely outcome of a decided course of action.
If you're smart, people assume that what is obvious to them is equally obvious to you, so the result of something you did must have been your intention. Not so for people on the spectrum. In most cases, we have the most innocent of intentions, but are unable to see enough of the big picture to be able to anticipate where the wheels will come off.
As for the smart ass part, well, I didn't (and still don't if I'm being honest) understand that there were some questions that I couldn't just ask. People are put off by certain lines of questioning from a fellow adult, but when it's coming from a kid, well...people don't like it, get irritated, and label you something. The two most popular labels for me were obnoxious and smart ass.
7. As a teenager, what was your experience with peer pressure to "fit in?"
By the time I was a teenager I felt no pressure to fit in, I was socially cast out long before that. I wasn't part of any clique, and the friends I had never asked me to be anything other than what I was. I was not well liked, though for some strange reason I was well known (probably my big mouth), and though there was the occasional girl threatening to kick my ass for whatever reason, I wasn't really bullied. I think that's because I was a very angry and kinda scary teenager. There has always been something about me that people have found threatening.
8. Is there anything you think parents of kids on the spectrum should know?
I firmly believe that no one knows a child better than the parents, so I don't think there's much I could tell anyone about their kid that they don't already know. But I would encourage parents to give serious consideration to being upfront with their kids about their conditions, as soon as they feel it would be appropriate. This is something I feel pretty strongly about.
We know we're different, and we know it pretty early on. Having that knowledge without the explanations that go with it can cause unnecessary suffering. Being on the Spectrum can be a tough way to live. The sensory issues, sleep problems, racing thoughts, and social struggles can certainly take their toll. But, for me, finally learning that those problems come from my unique neurological wiring has made it so that I can stop beating myself up over my seeming inability to perform at the same levels as my peers.
It was as if I'd gone through the first 37 years of my life not being able to walk right, and telling myself what a loser I was that I couldn't walk like "they" could. I'd keep trying, and with each fall I would add to the list of awful things I believed about myself. Then one day, someone pointed out that one of my legs was significantly shorter than the other. "Oh! That's why I can't walk as well as they do! Well, that makes perfect sense. Now, I can stop expecting that of myself." Knowing really does make a difference. In the long run, I believe that difference to be a positive one.
Do you have questions for Laura? Put them in the comments...