I don't always tell others about my AS diagnosis, whether I know them well, or not. Sometimes I do, but with quiet trepidation as I await the response. I will not lie. The response determines how likely I might be in future to disclose my diagnosis. I always blurt it out quickly, through the sound of my pulse rushing in my ears making me almost anxiously deaf to the world for that moment I await the response from the other party. I lean in, hoping for some sign of acceptance... I almost always get one of two responses.
The most common- "I would never
know." or "I can't tell." and sometimes, "Well, you certainly have done well for yourself!"
Then the other, which I hate the most.....silence. It's a wide-eyed look of disbelief, and shock. I don't know for sure what these people are thinking, but I can surmise it is either that I am lying, crazy, or they just don't know what to say.
I don't like the congratulatory praise of passing as normal. It feels fake to me. It feels wrong to celebrate not looking autistic. I know what the other person is likely meaning, and I know it is rarely a statement that they make out of ill will. They are simply saying what they're thinking, and what they're thinking is that they'd never guess I have a developmental disability. There are no clues most of the time, and the little ones that are there don't seem to add up to much more than quirks, as far as they can see. I don't condemn others for this viewpoint. I actually do see some value in them seeing something that is outside their idea of what autism is, or more descriptively what it isn't. They don't think it is a well dressed, woman who drives, runs a household, and does all the things most moms, wives, and women do. Autism doesn't always mean those things, but it can. For me it does.
The second reaction....silence is the the one I hate. I hate it for so many reasons, but mostly I think it's because it's ambiguous. I don't know what the other person thinks for sure. There's something about a proclamation that's left dangling out there without a response that feels naked, vulnerable, and invalidating. It's like when you ignore a child's question because it's off-topic, or not appropriate. I feel like that child in this instance. Sometimes, I do think people don't know what to say back to me, but others I am certain is because they think I am making it up. They are postulating that I am one of those trendy people that jump on all the new diagnosis's taking on all the symptoms like a hip hypochondriac.
In some ways the silence is more insulting when I detect it's there in the capacity of disbelief. The majority of people in the world have a very narrow idea as to what autism is. It's so many varying ways of thinking, being, processing and feeling that I could never cover the full scope of what it means to be autistic in just this one post. Just like NTs, we are all different. I have met many autistics that I can identify with. I have met many that I can't at all. I have met some that I flat out don't like. I have met a few that broke the stereotypes of what even I thought it meant to be autistic. Yes, even those of us on the spectrum aren't always aware of how others on the spectrum differ from each other. We're all learning. So, when I am met with that blank stare when I disclose my AS diagnosis (usually when talking about my boys) that says "You? No way. If you're autistic, then we all are." It does feel like a dismissal. They don't know me, or my life. They don't think about what autistic kids might look like as adults. I write extensively on this blog about the many challenges that I face daily from social issues to face blindness to sensory issues. Those are not things that I would share with anyone anytime. Just because I am not highlighting my struggles it doesn't mean they're not there. Of course being autistic is about so much more than the struggles, too. It's about the way a person processes the world, and that has it's good, and bad points. I don't in any way want to put the idea out there that in order to prove my autistic-ness that I feel that I need to pull out my portfolio detailing all of my struggles, and pain that proves to others that I am indeed autistic. I think that is a common retort, though. I understand it's place in that when we feel our (or our kids's) diagnosis is dismissed by another person. Their doubt feels like an invalidation of all the trials of being misunderstood, unsupported, and denied can entail, so in return we often want to list all the ways in which we have indeed suffered, but I tend to hesitate to go in that direction. Not because I have not ever suffered, but because I don't want them to walk away from me with the idea in mind that autism = struggles. I don't want their pity. I want them to respect me as a unique person with a lot to offer the world in part because of my autism, not in spite of.
So, what are some ways a person can respond that would feel more accepting to you? If you have some suggestions please leave them in the comments section below.
Some of mine are:
"That's interesting. Tell me more."
"Really? What is that like for you?"
"When were you diagnosed?"
"Does that mean your sensory system works differently?"