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. 

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.

Autistic At Work

You may also be interested in my post about Autistic people finding jobs and my first post about coming out at work.

It's been a month and a half since I came out at work, so I thought I would update.

I pretty much just drop subtle hints here and there. I have put up the "no puzzle piece" logo on my desk, as well as a pin that says, "I love my Autistic brain."

One of my teammates confided he believes he might also be Autistic. (Autism must be contagious)

I have a great work environment that is most interested in using people's natural talents, rather than trying to force us into molds. While I do have to learn certain things for my job, the tasks I am given are based on my strengths. I also have a boss who freely gives praise where its due. This really helps me.

He also praises me for accomplishing things he now knows are harder for me than other people. At the same time, he tells me where I've done less than optimal things and shows me how to correct them (usually communication with other departments). In other words, he's slowly teaching me social skills. In general, he takes care of the social aspect for the team, but he's also teaching us to be able to fend for ourselves.

In general, I believe I owe a lot to just being in a great environment. I don't have any regrets disclosing my diagnosis. I simply feel freer to just be myself.


You might also be interested in reading, Asperger's on the Job (Canada) or Asperger's on the Job (US version). This book helped me make the decision to come out at work with confidence and I lent a copy to my boss to read. 

Coming Out Autistic

I decided to come out at work. My blog is listed on my LinkedIn profile. Most people probably don't bother to click, but I'd rather just be open. People keep saying they've never met an autistic adult. I'd argue they have, but never knew it because they don't realize when they're staring one in the face. So here's my face, for all to see!

I also figure, especially after reading Asperger's on the Job, that I have a lot to gain by informing my boss and team how to best work with me. I'm giving them the operating manual to my brain. I wrote out traits about myself and the way I prefer to work. 

We recently had a restructuring at work, and I have a completely new boss and team. I took it as a new beginning and opportunity to work differently. I don't have to hide parts of myself, or at least I hope. 

I told my boss first and gave him the book to read. On the plus side, he is dyslexic, so he was very understanding. However, it will take him a long time and a lot of effort to read the book. I should see if there's an audio version. 

Today I told one of my co-workers. He said he was surprised, but not totally. He said he had his suspicions, but I didn't get to ask him in detail. Not that it really matters, I'm just curious. Sometimes I wonder how obvious it is to others.

There's only one more person on my team to tell. I've dropped hints to others here and there, and then there's Nikki, who I went to the disability fair with who knows. 

So far everyone is cool and wants to know if there's something I need to make my job easier. I say I don't want any special treatment, but I do require some patience in some ways. For example, when I blurt out really blunt things, I need to not have people take it personally. I also am specifically telling them that I want to be included, but I need their help. I also rely on them to temper my honesty when dealing with other departments, so I don't divulge too much info, for example. I'm not great at the diplomatic business talk, so I need to write my ideas down, then have someone else filter through it and present it.
I'm totally ok with that. Things will just work more smoothly if we help each other out.

I'll keep you up to date with how things progress. Are you "out "at work? Why or why not?

The Line Between Honesty and Privacy

I've written before about the permanency of the Internet and how I think all bloggers should be careful about what they disclose about themselves and more importantly, their children.

While I believe in being open and honest in my blog (as I am in real life), I also ensure to keep a little bit of me and my family to myself. I believe that is the safest and most respectful thing I can do for myself and my family. So while the stories and experiences I tell are 100% truthful, I do leave out extremely personal details - there's no reason for you to know my address or exact location, for example.

Also, not everything in my life unfolds in the order seen here - I do auto-schedule some posts - partly as a safety measure and partly out of simple practicality. I have limited time in which to write, so in order to keep a consistent schedule (I've been aiming for Mon-Wed-Fri lately) it means I have to write things ahead of time when I have the time.

While I aim to help others on a similar life path as ours with the experiences we have, I also try to write in a way that is respectful to my son and hopefully will not embarrass him in the future. I want him to be able to look back at this blog and see how life was with him from my perspective.

I think most of this should be understandable or obvious to most people, but consider it my little disclosure statement and way to explain and maintain my integrity as a blogger.