I got a tweet to my @Train4AutismCLB account the other day, just out of the blue, that really got me thinking about goals and motivations.
For those who aren't in the autism community, there's a bit of a rift regarding the charity Autism Speaks, which is the biggest, most visible autism charity out there. Many people who are higher-functioning autistics believe that one of the organization's stated goals of "curing" autism would only take away a facet of their personalities that make them what they are. Then there are those who would love to have a cure for autism or at least some way to relieve some of the nastier aspects of autism and help their loved ones to have an easier time functioning in today's society. It's a fine line, no doubt.
But the tweet I got was from someone whose profile said they were an aspie, which is shorthand for someone with Asperger's Syndrome. This is a high-functioning form of autism where people are very smart and can be super-focused on a particular topic, but their social skills are not developed to the standard that is considered normal. That's a very gross oversimplification, but it works for the purposes of this post, I think.
So this person who tweeted me was asking me not to support Autism Speaks because he/she feels autism is not a disease to be cured. Here's the text of the tweet:
The sender is right. It's not a disease, it's a condition. And I'm so very glad that the sender feels comfortable enough with his autism/Asperger's Syndrome that he doesn't feel it needs to be prevented or cured.
But... I know plenty of people who truly suffer with their autism. I know kids who almost can't even be communicated with because their autism is so severe. I know kids who have trouble being outside because their autism-related sensory issues make the simple feeling of a breeze painful for them. I know kids who are obese and sick because they simply can't handle anything but the blandest foods and aren't getting the nutrients they need to nourish their own bodies as a result.
My own son has some very severe sensory issues. He can't keep his mind on one thing for more than a couple of minutes most of the time because he can't control his own focus on sights and sounds around him. He can't filter those stimuli out and leaps in a rather full-bodied manner from place to place.
He loves to watch fireworks, but can't get near them because of the sound and shockwaves of the explosions.
He gets excited about seeing his neurotypical (non-autistic) friends, but doesn't know how to interact and play with them. I've seen him look at other NT kids his age and I just wonder what's going through his mind as he watches them.
He can't fathom why people don't just want to follow along with him as he obsesses over stadiums, or why they get annoyed when he repeatedly asks everyone he encounters where they were baptized.
He has trouble handling his own emotions and he uses some pretty nasty language when he gets frustrated, language that some people would consider physically threatening. I worry that he's going to get himself into trouble with some of the stuff he says if he says it in the wrong place (like around more paranoid parents at a playground, or among TSA at an airport, things like that).
So yes, I would LOVE to see a cure for autism or something that relieves his symptoms. My son's issues are severe in a lot of ways. And it's not just for him, it's for me, and my wife and my daughter. We all do the best we can with him, but I'm never going to lie and say that it's an easy row to hoe. It's tiring to be asked where we were baptized over and over for an hour at a time. I would love to be able to let him run around our own house without fears that he's going to open windows and try to climb out or throw glassware and watermelons out.
And he's not as severe as a lot of the kids where he goes to school.
The people who are managing their autism symptoms or thriving with them are totally fortunate, no doubt. I am so grateful that there are people who have overcome these issues. Perhaps some of them can share their successes and how they did it so that those of us who are still struggling with a lot of this.
But to exhort people to not support a charity because it's trying to help figure out a problem that plagues a lot of people (increasingly over the past few years - the rates of autism diagnosis have gone from 1 in 110 to 1 in 68 since our son got his diagnosis about five years ago) is not fair, and frankly I find it a little selfish. Autism treatment is causing money problems, stress problems, health problems, and just plenty of general strain on the world. It's affecting millions of people, and not just those who are actually diagnosed.
If we can help those who need the help, and leave alone the people who decide they have things under control and can handle it, then that would be the ideal situation. Just because one person with a diagnosis has excelled because of it doesn't mean that everyone will.
Autism is a spectrum of diagnoses - the saying is that "if you've met a person with autism, you've met ONE person with autism."
And that idea is really a pretty important message even outside the spectrum of autism. Just because one person has... say... pulled themselves out of poverty, or overcome health issues, or what have you, that doesn't mean that the next person's situation isn't different enough that they might have a harder time doing what the one person did. We are all different. Everyone needs varying levels of help in their lives, and we need to remember that before we go passing judgment on them or their motivations in life.
@Train4AutismCLB please say no to Speaks. they want to cure and prevent autism which they shouldn't since autism isn't a disease
I think you covered it all Jamie. We develop rules to live by but not the flexibility to perceive them differently. I read an article recently about a young man in South Carolina who had just passed his drivers test. He appears with enough makeup to make it clear he identifies as a female. The rules state you cannot take a drivers license picture in a disguise so the license bureau employee made him take off his make up. They knew he was a boy though he appeared differently. The rigid application of the rule though, has the complete opposite effect that was intended. This young man now appears as a young male on his drivers license, yet if he is ever stopped or asked for ID he will appear different than his picture, as if in a disguise. Flexibility is as important as the rule itself, especially if the rule is poorly written.ReplyDelete
Acceptance is the cornerstone of all these situations, I think, Mark. We have to understand that not everyone has the same outlook on life. Ironically, given the underlying topic of this post, people on the ASD spectrum sometimes have the hardest time with this fact.Delete