Disclosure in Exchange for Respect

In our effort to increase awareness and acceptance about disabilities, a subset of people seem to have latched on to the idea that if we just tell people we're disabled, others will suddenly understand be kind to us.

I'm talking about Sainsbury offering extra assistance to anyone wearing a sunflower landyard. Anyone with an invisible disability is welcome to pick one up for free and then shop freely, while displaying their diagnosis to the world in exchange for basic respect.

Or parents buying blue plastic pumpkin baskets or making signs or special treat bags that say, "be patient with me, I'm non verbal." But let's keep it real about what is actually happening: adults are withholding candy from children because they don't say "trick or treat" properly or at all. Who exactly is acting like an adult and who is the child in this situation? It's candy. It's cheap. People come to your home on one specific night a year and you've decided now you are the ableism Halloween candy police and must Lord over the visitors who are requesting candy? Give me a break!
Can we just agree to give candy to whoever comes to your door, without being racist, sexist, classist or ableist? Is it really too much to ask?

No one and no parent, should have to explain or disclose a disability in order to simply exist, shop, work, trick or treat, or just take a walk down the street. I shouldn't have to wear a giant sign on my head to have you be kind to me or use some patience.

Similarily, I had a conversation with a friend online recently where a meme was explaining some proper grammar for common expressions and I posted it not because I care about proper grammar, but because I wanted others to understand that those with speech impediments might get these wrong simply because they're hard to pronounce. My friend replied that people should at least know how to spell them correctly then. I said, "dyslexia is a thing and does not indicate a lack of understanding or intelligence." The friend responded, "people with disabilities get a pass."
No, that's not how it works. How about just don't judge at all? You are not the holder and giver of the "pass." We don't need your judgement. And a "bad speller" stranger on the internet shouldn't have to provide their diagnostic reports in order for you to not pass judgement.

I'm really tired of people suddenly requiring everyone else to provide an explanation for being different, needing some help, or just wanting a bit more understanding, in order to be treated like a human being. 

Life After Adult ASD Diagnosis - A Year Later

It has been over a year since my official diagnosis of ASD and SPD, and I feel like I've changed so much.

My journey started with learning and self-acceptance, and moved more towards advocacy.

I'm open and honest about who I am. I am open and honest about my limitations. I try not to boast about my gifts :) I still have a lot to learn.

Being open and proud has helped a lot. Not succumbing to the pressure to "be normal" has taken a huge weight off. Similarly, being able to tell people exactly what I need and how I work has helped for mutual understanding. I can explain when/why I come off the wrong way sometimes.

I think disclosing has been beneficial for me because when I tell others, I am able to get better feedback about how they perceive me. When I understand how I am sometimes giving off the wrong signals, so to speak, I can work to improve on that. Suffice to say, I'm still learning social skills and this awareness has helped.

My picture for the Amazing Autistic Women project

With diagnosis, I joined a club and met so many amazing people so far. I'm still learning and it's pretty cool.

How To Explain Autism to a 5 Year Old

I've seen a lot of talk recently about people debating if and when they should disclose their child's autism diagnosis to them. I am firmly in the disclosure camp, and the sooner the better.

I'll use an analogy to explain why. Let's pretend autism isn't in your brain, but a differently coloured ear that hears differently. Kids don't really notice colour, but they do notice differences. So they see their two ears, but one is blue. No one else in their family has a blue ear and they can see that. This blue ear means they hear things at a different pitch from non-blue ear people. They can still hear just as well, but the pitch is off, which means sometimes sounds get scrambled. They can see other non-blue ear people have entertaining conversations and laughing, but they can't always follow. They start to feel left out. People assume the blue-eared people don't understand, so they simply stop including them. The blue-eared person starts to wonder what is wrong with them. They think they are flawed.
Keep in mind, there is nothing inherently wrong with the blue-eared people, they just hear slightly differently. With time, they can also be taught to hear different pitches differently, or people make an effort to adjust their pitch for the blue-eared people.

Snap back to reality and autism is no longer about blue-eared people, but I hope the above makes some sense. In general, when you don't explain why someone is different and what that means, the conclusion a child will almost always make is that there is something wrong. Children take on a whole lot of different emotions and issues that have nothing to do with them. The same way a child will blame itself for a parent's divorce, they will blame themselves when they have problems understanding or making friends, unless you explicitly clarify things for them. (And even then, they still might, but you can at least try to make sure they don't blame themselves)

Explaining autism to them - both the gifts and the downsides - gives them the language they need to explain it to others. Over time, it will give them the confidence to be able to advocate for themselves. Unfortunately, as much as we would like to, we will not always be there for our children and they will have to face this world without us. They need the tools to be able to have their needs met when you're not able to fight for them.

So how to do explain autism? Well, I use opportunities to slip in little factoids now and then. If we're waiting for the bus and have nothing else to do, I say, "hey, do you know you're Autistic?"
He usually says, "yeah" now. "You know it means your brain works differently from other people's?"
Sometimes I tell him my brain is like his, but not dad's. Sometimes I tell him it's why he struggles with some things, but also has an amazing eye for details.
Then I leave it at that. Because at his age, I don't think he needs tons of details. He just needs to start learning the vocabulary, and to know there's nothing bad or wrong about him, just different.

I think about how I grew up without a diagnosis and how confusing it was for me. I blamed myself for so many things. I don't want him to have that experience. Knowing how his brain works means he can work with it, rather than against it, and he can learn tools or coping skills to be more effective.

Explaining autism (or Down's, or SPD, or Apraxia) is not a one-time thing. It's an on-going dialogue based on acceptance and trust.