I'm Not Sorry About Autism

You don't usually hear conversations that go like this:

"My son's eyes are blue."

      "You must be strong. It's because God knows you can handle it."

"I have black hair."

     "Oh, I'm so sorry to hear that. What's it like for you?"

"My husband is white."

     "That must be so hard to deal with."

"My best friend has an IQ of 114."

      "You're such a saint to be his friend."

With the exception of hair dye, the sort of attributes I mention above can't really be changed. They are part of the person - the way they were born. So is autism. It's part of me, part of my son. I'm not sorry about it. It's just a small part of what makes us who we are.

So imagine my surprise when my husband tells the plumber working on our house that our son is Autistic and he tells my husband he's, "so sorry."
(Also lucky I wasn't there or he would have gotten an ear full)

I don't know any other life without autism and I don't know my son without autism either. We would not be the same people. I'm not sorry about who I am. It's different, but there's no reason to feel sorry for us.

You may be interested in I Make No Excuses

Who We Are Autism Documentary

I'm proud to say this documentary on Autistic people was created right here in Quebec. It profiles four individuals going about their daily life. It's only 25 minutes and subtitled (not perfectly) in English.

I highly recommend checking it out!

Watch HERE.

But You Don't Look Autistic

People often call autism a "hidden disability." Indeed, for the most part it is. Unless you are able to make complex measurements and facial assessments like in this study, for the most part, autism goes visually unnoticed. You usually have to talk to a person or observe them for a certain amount of time before knowing and even then, I'd wager most of us pass under the radar the vast majority of the time.

I'd like to remind everyone that doesn't mean we don't exist as adults. That doesn't make us invisible or any less present. That doesn't mean we do not have disabling problems and issues with daily living. It doesn't automatically mean we're "high functioning" or functioning at top capacity. All it means is you don't notice us because we've gotten good at "passing" and being "social chameleons." This doesn't indicate it's a good thing either.

I recently took the Little Man to the ER because he had a stomach virus and I was scared he was getting dehydrated. One part of his sensory issues is an outright refusal to drink water. He also refuses juice. In fact, he refuses to drink anything other than soy milk and Pediasure. (Thank goodness for Pediasure!) (Also note how much this child is exactly like me - I have always hated drinking and do it very slowly, usually through a straw, and only because I know I need to live.)
You can imagine that during times of stomach upset, not drinking is really not a Good Thing™, so a mama tends to worry. Anyway, I took him in to make sure he was not dehydrated and hoping for some other options. So I told the ER doctor that he was Autistic and this is the cause of our hydration difficulties.

The young doctor chatted with the Little Man a bit and then declared over my son's head, "if you hadn't told me, I would never have guessed he was Autistic. I mean, how does it present? He seems fine."

I'm ashamed to say, this mama had nothing good to say in response. Thousands of things went through my head - should I disclose I am also? Maybe that would teach him how we look. Do I tell him he flaps? What does that matter? Do I tell him to f-off? Do I mention that I don't really care about his opinion because that's not what we came here for and I really only need to know if my child is dehydrating or not, thanks!?

Instead I just said, "he's a good kid..." because he is. I don't care if others can or cannot tell he's Autistic. That's not important and it has nothing to do with how intelligent, disabled or anything he is or not. How he looks to has no bearing on anything else about him. How he looks is just a small fraction of the amazing person he is. And that's the case with everyone. Looks are not important and looks can be deceiving.

We don't need to LOOK Autistic (whatever that means!) to BE Autistic. Society needs to let go of the whole Rainman idea as the correct representation of Autism and understand the spectrum is wide, vast and varied. We are diverse, just like everyone else. Just like no white person is the same, no Autistic person is the same. And there's more to all of us than meets the eye.

The Benefits of My Autistic Brain

If you look online, you'll find lots of lists of the ways the Autistic brain is different and beneficial to the world. Not all of us are the same, so I'm just going to list some of mine for fun.

Memory: I was called "The Walking Encyclopedia" as a kid. I remember random facts. I remember birth dates of people I'm not even in contact with any more, celebrities, everyone. I remember conversations. I remember snapshots of life - for example when I used to study, it was easier for me to remember the whole page of notes than to remember each individual fact. In other words, my brain can take a snapshot of the page, almost like taking a picture, and during a test, I can recall the page and read it over again for the fact I need, in my head.

Hyperlexia: I wouldn't say I'm hyperlexic so much now, but I was as a kid. I still love words and languages and my major talent is spotting errors. If there is a spelling error on a page, I just have to look at it and it literally jumps out at me. It's useful (since I work as an editor) but it can also be crazy making. Because of that, I rarely have to edit what I write. I write pretty much just one draft and maybe edit for the way the sentence sounds, but very rarely for spelling or grammar.

Hypergraphia: I have a love/hate relationship with this! For example, right now I'm REALLY tired and should be in bed, but I can't stop writing, so I just keep making more posts. What you're reading now has probably been written a month ago, no joke!
I also write to process my thoughts and I just think I'm a better communicator through writing. In fact, even my hubby and I write to each other so we can communicate clearly. It results in very few fights or fights that don't take long to solve.

Sharp Senses: I see things people don't see easily, like small things on the floor. I'm the best at finding lost contact lens. Call me! lol
I also hear sounds people hardly notice. This can be annoying. Especially when trying to sleep.
I smell things quite strongly, which means I can smell rotting food easily, but I'm also sensitive to scents/perfumes and those can give me a headache. Can't have good without the bad!
I can feel very light touch and pretty much every hair on my body. Also annoying at times, but all these things make it very hard to sneak up on me. Also on the plus side, sex is amazingly intense and wonderful. (Sorry for the TMI, but it's hard to find Autistics talking about sex frankly and we do have sex, so I thought I'd throw that out there!)

Honesty: I speak my mind without a care in the world. This can be annoying to people who don't expect the honest truth from me, but those who can take it, appreciate it. I've worked hard over the years when it comes to my delivery, but I still slip up at times and cause offence now and then.

Happy Alone: Because I don't need the presence of people around me for validation or entertainment, I can happily go places alone. I don't need to wait for others to do things, which means I go out and enjoy life and I don't feel awkward or lonely doing it.

Extreme Focus/Obsession: Once I know what I want or like, I can maintain my focus on it easily. Like goals, for example. I achieve them because I am focused and tenacious. Some people call it stubborn - maybe it is, I don't know, but I get things done, so booyah! Good luck trying to stop me.

Ok, that's enough for now because I am REALLY tired and if I list too many, it will start to sound boastful and you'll all want an Autistic brain. :p

Autism Mom Vs. Autistic Mom

I've been doing a whole lot of reading lately and a lot of it is written by Autistic self-advocates. Some of it isn't really a revelation to me, being Autistic myself and all - and even without officially knowing my diagnosis until recently, I was already sensitive to certain things and had my own ideas about how I would raise my child. But other stuff I hadn't thought about - the language I was using and how.

I also have a special viewpoint (thought not unique seeing how Autism often runs in families) being both an Autistic mom and so-called Autism Mom (I'm not really sure about that term, so I'll have to think about it a bit more). But it's already easy to see very striking opposing viewpoints.

On the Autistic adult side, they write with a lot of anger, and for good reason, but it's still very raw and caustic (and triggering and hard to read at times). A lot of us have been abused by our own parents for being different...or just because our parents were abusive a-holes. A lot of us have been abused/bullied by peers, teachers, educators, counsellors - people trusted with our care. A lot of us have been harassed/bullied/excluded by society at large. So it's understandable there's a lot of anger. I get that. I've lived that. But I don't tend to use this particular blog to air that stuff. A lot of that stuff has been worked out through copious amounts of therapy and lots of writing and crying. That's not what this blog is for.

On the other side of the spectrum, no pun intended, are moms and dads who are neurotypical, but have Autistic kids. Some are doing a great job (and they should be acknowledged) and others are a complete mess, perpetuating abuse. I have issues with people looking for "cures" (there is no cure for Autism, unless you have a brain transplant and those aren't successful). There is no prevention other than abort your child or kill it. Or, hey, here's a crazy idea - if you want a "perfect" kid, you probably are having kids for the wrong reason and shouldn't.

I've written many times about acceptance. I stand in stark contrast to the "Autism Moms" for my refusal to do ABA or other "behaviour modification" training/enforcing/experimental abuse on my son. I don't force him to look at me; no one listens with their eyes, his ears work just fine. He is not broken. He is not to be "cured" because then I wouldn't have my son. But there's a lot of outside pressure because there's a whole lot of money to be made with these private companies who provide these services and prey on scared parents.

I get disgusted with NT parents saying things like (real quote), "I'm so happy I had a second child. She turned out fine and it was proof for me that my body is capable of making something normal." Fer real, girl?! And you posted that publicly for everyone to see and you have no shame? Shit like that just amazes me.

So I straddle these two worlds and it can be awkward. Over time, as I get more comfortable in my own skin concerning my new diagnosis, I think it will be easier to just be me.

All I really want for my son is to be happy. What I also really want is for him to have it easier than I did. I hope the world has changed a lot since I was a kid, but I'm still aware it hasn't changed enough yet. I want him to work on his weaknesses within reason, and not force him into something he's not. I want him to work hard on his talents and be the best he can be at whatever he's best at. I'm not so concerned on the how, or the when.

Our Journey Through the Spectrum

So it only took about 10 months, but I finally got confirmed what I always knew: The Little Man was diagnosed with ASD today. Part of me feels relieved and validated. The other part of me feels completely exhausted.

I've got a crazy list of things to do now: try *again* to get a social worker so I can get access to English resources in the area (if any), get him started in intense ABA therapy, contact the OT at the hospital, call back the speech therapist at the clinic, fill out all the necessary forms for tax credits/exemptions, start shitting money out my ass so we can pay for all this (not public services, but a lot of the clinics seem to be out in DDO, which means a whole lot of driving)...it feels like a lot right now. Luckily, I took the evening off work.

And for those who understand and like details, we did the ADOS, but not the ADI. We will re-asses in about three years. In his case, it's still too early to tell if he's got Asperger's (unlikely because of his lack of language skills) or PDD(NOS) since he's so "weird." (Not a surprise to me that it's difficult to fit any child of mine into a perfect box. I take some pride in that! LOL)

The plus side of a diagnosis: we get to skip all the lines at Disney if we ever go.

All I ask from my friends is understanding - we may take longer to do things. We may not always attend events or not for long. I may opt to stay home with him knowing that my presence is needed if he's had an over-stimulating day. This is nothing new, I've always arranged my life around him, but now maybe people will understand he's not like other kids and I'm not paranoid or coddling or spoiling him. We do things our way and every decision I make is about him. This is all I know. I've only ever mothered an ASD child. And based on hugs and kisses, I think I know what I'm doing.

Don't Stop The Stimming

This is a sad, but poignant article written by an autistic adult about how she was forced to stop her stimming behaviours.

It is beautifully written prose and clearly explains how she was hurt and silenced.

It should serve as a reminder to everyone to allow your child to express themselves in the way they know how and that makes them comfortable.

What do you think after reading it?