I was really impressed with the Stories of Autism photo exhibit the other night. I’ve realized in writing the blog that sometimes it’s incredibly difficult to convey my thoughts and feelings about things in words. I end up saying stuff like, it’s great! I loved it! It’s super cool! over and over again, but there is no real meaning attached to that. It’s frustrating, because what I want to do is transport you into the moment with me, and say, “see this? Experience it with me, and then you’ll understand where I’m coming from, and I’ll know what you think about it, and we’ll have understanding.” I think good writers are supposed to be able to do that with their words, but clearly I struggle and end up defaulting to, “It’s awesome!” :-)

I walked around this echo-y room with old wood floors at Wallingford Center looking at these beautiful black and white photos of kids hanging on the walls. I didn’t realize that all would be from the Seattle area. If you check out the link above, you can see most of them. They’re all fantastic, although I have to say the smile in Sam’s eyes made me smile the most. What drew me in, though, were the short story cards placed next to each picture written by the parent/parents of each of kids which gave varying perspectives and insights on having a child who is on the autism spectrum. Some were incredibly positive. Some, not so much. Many talked about the humor brought into the family’s lives by the child who has ASD. A few addressed the parents’ concerns for the future of their children. They all were unique, poignant, and personal. For a pic of two brothers, the mother wrote about how her oldest son is learning to cope with being awkward, and the younger is just starting to learn that he is awkward. I liked that line a lot for its honesty. One shared how her son’s intense concentration helped him run a marathon in record time. Another parent shared how it isn’t typical for a seven year old to spend his summer figuring out two to the 200th power or writing code with numbers, to confront older children hurting a little bird, with no thought of the consequences to himself, or, in fourth grade, to stand up in front of his class to talk about differences and how bullying is wrong. While none of these things are typical, I’d sure love to meet this kid.

In many of the stories, parents shared their distress of seeing their once happy, healthy babies suddenly withdraw and change as they developed with autism. I can’t imagine what that would be like, and I don’t blame the parents for wanting to know what happened. Some referred to autism as a disease or plague that MUST BE CURED. I talked with a mother at the show who said to me that ASD manifests itself differently in each person, like cancer might in any individual. I really struggled with this, and it continues to weigh heavily on my mind. Although I know autism can be debilitating in certain areas to those even mildly or moderately affected, let alone severely, I have a hard time likening it to cancer. The comparison just feels wrong to me. I guess I don’t think of it as a disease that takes over your body with the intent to kill you. Instead, I think of it as one facet of who a person is. But, maybe if you're a parent who perceives that the child you knew, or the child you hoped would be, was taken away by autism, you have a different view.

I have a lot of confusion going on in my head about AS/ASD right now. I spend a lot of time thinking and reading and learning and talking about this, but taking a class or two and reading certainly don't make me an expert (unlike with fashion!). I’m searching for understanding as I consider what I’d like to do and what advocacy actually means. There are a lot of hot-button issues out there that draw great controversy between parents, educators, medicine, science, any joe-shmoe who has an opinion, and people who have AS/ASD. I can see both sides, but it’s murky waters in my mind. It’s terribly unclear to me what’s right, if anything is. Am I even entitled to have an opinion? After all, I’m not a parent of a child with ASD. I don’t know what they go through or how challenging it is to raise and care for a child on the spectrum. I’m a “neurotypical”, so there’s no firsthand knowledge here. I have limited experience in interacting and working with people who have AS/ASD, and even if I did, I don’t think I could speak for what another individual wants or needs. I don’t know what it’s like to navigate this world with a real or perceived disability. Logically and emotionally, I understand the argument for interventions and a cure, but I also get why there might be some resentment on the ASD side, especially for the high functioning, for being subjected to behavior modification and interventions designed to make a person more “normal.” My question is: what’s so great about being quote-unquote normal anyway? I mean, Really???

Yada, yada, yada. I know that if more than a handful of people read my blog I might get bombarded with opinions from all sides about this, and in most cases, what I’d probably say to each person is, you’re right. The thought of that makes me want to put my hands over my ears and curl up into a little ball. It’s all so overwhelming. I understand the benefits and privilege of being able to function “normally” in this world. I can’t pretend to understand the pain and challenges of parents who want to see their children, at any age, connect and behave in typical ways. I get why parents worry about what will happen to their children as they age. I know that a lot of methods backed by research and evidence have been proven effective in helping kids with AS/ASD learn, socialize, communicate, and make progress developmentally. I know that if there was a cure some people would snap it up in an instant, and others would choose to refrain, and I think that’s ok. Above all, if it’s expressed in any way, I think it’s most important to listen to and respect what the person with ASD wants and feels.

The idea of normal scares me a bit. I’m often drawn to differences. In my own life, I’ve experienced feeling like an awkward outsider on many occasions. I’ve noticed that I think differently than others, and I’m fascinated by others who think differently too. It’s a good thing. I’ve been reading a book on Asperger’s syndrome and relationships, and the author tells a story about a subject who went to a dinner party hosted by a woman who was really into motorcycles. For some reason the man with AS couldn’t believe that a woman would be that into motorcycles, and he didn’t hide his disbelief. The real clincher came when the woman talked about her new boyfriend and how thrilled she was that he was equally into bikes. The man with AS was totally taken aback and responded with something to the effect of, “A boyfriend? Why do you even need a boyfriend when you have that throbbing piece of metal between your legs???” Ha! Love it! How often do you encounter someone who speaks his/her mind so openly? Now, since I’m a person who really thrives with emotional connection and relating to other people, I probably wouldn’t be a great romantic match with a person with AS, but what I want to know is, can I get this guy’s phone number to invite him to a dinner party? In the grand scheme of life, I think differences like this make things more interesting and colorful, not terrible.

Difference…disability…difference…disability. Maybe one or the other, maybe both. Maybe it depends. I don’t know. If there are two camps, I’m darting back and forth between them trying to figure it out.