Wednesday, August 31, 2011

What is Neurodiversity? What Should It Become?

Well, this is a little embarrassing. After so many people read the TARDIS post last month, I had intended to make this blog bi-weekly instead of monthly. I worked on my novel the week after that post, and then I planned to set it aside to work out a follow-up post. Unfortunately, the universe believes that if I plan to do something, that thing must never be allowed to happen.

My partner Liz has a condition called Rasmussen's Encephalitis. It's an underlying condition related (distantly) to ALS, and it causes epilepsy. After being under control for several months, she had an episode which required her to be cared for full-time. Normally, this is an inconvenience, not a major disaster. She has episodes like this 3-4 times per year, and she also has several smaller episodes that require her to rest and recover but do not require her to have full-time assistance. Her longest episodes are usually around a week. Maybe two weeks, if you count the time from her first seizure until she is totally “quiet” again.

This time, she had 3 weeks of high activity, with around a week of lead-in during which her seizure activity was escalating AND a week of diminishing seizures before they stopped. She was actually beginning to experience them while I was working on the last blog post, but since they were relatively short and she only had 1-2 per day, she was not reporting them to me. On top of the disconcerting length of this episode, she experienced a paralysis of her left side that made it impossible for her to care for herself. I had to lend walking assistance, and during the worst part of the episode she was unable to leave her bed.

While these episodes are not unheard of, they do take their toll. I am Elizabeth's “memory”. I keep track of all of the details of her medical history and treatment. I read the available literature on her disease and take notes for the doctor, and I make sure she remembers all of the questions she wants to ask during an appointment. For her part, Elizabeth is my eyes and ears. She is very much a people person, and she is the reason I am as social as I am. She also keeps an eye out for me. Her medical condition is often a convenient excuse for me to bring her along to meetings or work functions, and when I am having trouble, she will watch and listen and then tell me who seems trustworthy and who is feeling negativly toward me.

For nearly a month, I was cut off from that. I basically only talked to her family and one friend who also has a partner with epilepsy. It gave me a lot of time to think, but because my attention was on Elizabeth during basically the entire thing, it did not give me a lot of time to write. Eventually, her family saw me beginning to slide downhill, and she went to finish recovering with her parents.

When she was gone, I was able to come back to my novel a bit, but I've really had a hard time coming back to this blog. I thought a lot about it, and I started to think a lot about Elizabeth's condition, too. Like me, she is neurologically different. Even after the paralysis and the seizures passed, she experienced visual/auditory and visual/tactile synesthesia. Her long term memory has been affected by her condition. Her emotional makeup and her ability to express it is also different—for instance, she sometimes cries loudly and vehemently without any emotional attachment to her weeping at all.

So I started to ask myself: What is neurodiversity? We talk a lot in the Asperger's/Autism community about neurodiversity, but what we tend to mean is ASD. We want to be accepted, we want to be allowed to use our own judgments about what is a “symptom” and what is a “talent”, and we want people to accept that our way of processing information and emotions is just as valid as theirs.

I looked at several neurodiversity sites, and that was all I found. So I started to ask myself this question: If I don't want neurodiversity to only mean “ASD”, then what am I talking about? What do I want to include?

Obviously, I want to include Elizabeth. Clearly, her synesthesia affects her artistic abilities—she not only self-reports that it does, but her color studies are full of “vibrating” colors that look like sound waves in various moods. So even if she has some symptoms that aren't good for her, something about her messed-up neurology is worth celebrating. So I think epilepsy needs to be in our conversation, as well as other neurological disorders/conditions like epilepsy.

There are also a lot of “autism-like” or “often confused with autism” disorders out there, and some of us that think we're “on the spectrum” might have these. And there are sensory processing disorders that don't have the other symptoms associated with autism spectrum disorders, but they should still be part of the neurodiversity conversation.

The same could be said of Tourrette's. Also, schizophrenia and schizoaffective disorders. I would have them all in the conversation.

I imagine that at this point in the discussion, a few of you are shaking your heads. I can understand why. After all, it would be good to have an outreach when we are talking about political rights under the ADA, special needs education, and rights for adults, but the autism advocacy movement (let's not use “neurodiversity” quite yet) needs to focus on some autism-specific issues, too. After all, some of our specific needs are different from the needs of people with other neurological differences.

Most importantly, some of you are saying, what we have isn't a disease. It's not a disability.

Well, it is and it's not. ASDs come with deficits and benefits. I would put forth the idea that all of these other neurological differences do as well. And while it is true that I celebrate my razor-sharp rationality, my nearly-perfect memory, and my ability to see and hear patterns, I also lament my inability to tell when I'm being made fun of and my tendency to devolve into a nonverbal mass of screaming, sobbing flesh that tries reflexively to carve out its frustrations on its own skin.

I don't want a cure, but I have been forced by my own brain to seek treatment or risk seriously harming myself. Again, I would put forth the idea that this is true of all of the neurological conditions I have mentioned so far. It is also equally true that the Asperger's/Autism community needs to focus inward on strategies for individuals that are grappling with these specific conditions.

I just don't believe that it's impossible to do both. I do believe, though, that it is necessary to use the more inclusive term when we're talking about a wider community outside of ASDs.

To use an example from another activist/acceptance movement, when the LGBT movement was put together, it married the fates of gay rights and transgender rights movements by forging a mutual respect and a recognition that several of the obstacles faced by the two groups were similar. Even though there were specific needs within each community that had to be addressed separately, the very recognizable LGBT (or LBGT or BLGT or...) label that finds allies in myriads of civil rights groups and NGOs allowed both groups to become stronger for their mutual reliance upon one another.

I think it's time for the neurodiversity movement to step up its game. We need to become more than just another label for ASD activism. After all the voices I have heard on Wrong Planet, Twitter, ASN, and other discussion forums lamenting the feeling that we aren't accepted, shouldn't it be incumbent on us to be the first ones to reach out and accept other neurAtypical individuals that have conditions very different from our own? I see the beginnings of this on Wrong Planet, but it is not a widespread and conscious aim of most advocacy sites that I run across.

I find myself at the end of this particular topic, but I have others in mind. If we are truly different in a measurable way, then we must tell each other our stories and we must have a conversation that reaches beyond “coping and daily life”. I'm hoping that by airing my thoughts, I might be able to find some people who disagree with me enough to have a long conversation about where I'm mistaken and what I can learn from them. I hope to see others doing the same thing.