Today I want to share a blog entry from “non-verbal” autistic teenager Henry, who uses AAC to communicate. I believe he’s no longer a teenager and no longer blogging, now (or not blogging on this platform) but he makes excellent points about the need for AAC.
I wish someone had offered us AAC when my little girl lost all her words. Maybe she wouldn’t have been silent for so long, if we had helped her when she was 18 months old, instead of crying about her speech regression. (Don’t get me wrong–it’s STILL sad to me, when I go days without hearing her beautiful voice–but that’s *my* pain, and as her mother, I have no right to make her aware of, or responsible for, that pain.)
My son started talking when he wanted to (age 3) and despite obvious delays and the heavy use of scripted language (which sometimes requires an interpreter, for lack of a better word) I’m not sure he’d have ever used AAC. But–I wish we had known that was an option, I wish we could’ve made him aware that it was an option, and then, the choice would have been his, not society’s.
But don’t take my word for how necessary AAC is. Take Henry’s:
Wow. I feel like I’ve let my team down–I was going to try and post every other day, this month. That is not going well.
However, I had forgotten that the kids are on Easter break, at the minute. I have been refereeing 2 high-needs autistic kids (most autistic people have high needs, to be honest–all I’m saying there is, my kids are obviously autistic in a way that makes it a little easier to qualify for support) and trying to do battle with an astonishingly bad cold + sore throat. (I’ve lost my voice, unless I talk in an unvarying monotone about an octave below my usual lower range… it’s great, I literally sound like a robotic dude who can’t show any emotion or alter my volume at all.)
My kids are wonderful. They really are, and I spend a lot of time these days feeling awful about all the times I invaded their privacy, by posting on the internet about their meltdowns and toileting needs and self-harm and other things. I didn’t know any better; I thought it was okay, because in so many cases, I was posting about my own childhood and adolescent struggles, as well. Even now, I probably go too far sometimes, because there is SO MUCH overlap between the way my kids are, and the way I was/am.
I mean, I was an adult before I learned how to make eye contact, and it still physically hurts, most of the time; I couldn’t put on my own socks until I was older than my “severely autistic” daughter, who, at age 12, can put her own socks on. My son (diagnosis of classic autism as well, but in the USA he would qualify for Level 2 Support, not my daughter’s Level 3 Support) uses zippers and buttons more effectively than I can. My daughter and I can barely sleep–my son seems to sleep fine. My son and I can speak, although we need some help being interpreted–my daughter is functionally non-verbal.
My IQ has never tested lower than 122 (self-test) and never higher than 145 (let’s split the difference and say it’s around 130, shall we?) and I have a first-class science degree from a British university, but I can’t walk outside alone because my social deficits have led to a lifetime of bullying and genuine fear for my own safety. My kids don’t cooperate well enough to test their IQs, and they currently attend a school which will, eventually, offer them the chance to get 2 or 3 A-levels (4 A-levels is roughly the equivalent of a high school diploma, in the States) but they are confident, excited people who have never been ostracised for being different, who fly out the front door and head down the street without hesitation if I say we’re going to the playground.
In short, our experiences are very similar, and also, very different. That’s autism, to be fair. We autistic people all have very similar, very different experiences and reactions. (Just like neurotypical people.)
For all that my kids and I have faced similar challenges and I *know* how rough being autistic can be, I hope they know how loved and amazing and beautiful they are. YES, being a parent is the hardest job on the planet; YES, autism brings its own challenges to the situation; YES, there are things my kids might struggle with less, were they not autistic; but I would not change my kids for anything. I hope they understand that, and I hope that when they are my age, they will love themselves the way I love them, regardless of their unique struggles.
Final note, summarizing the “who has it worse, me or my kids” question (which isn’t a good question anyway): it’s called the autistic spectrum for a reason–it is a spectrum–but it’s not linear. It’s more like a sphere, and we all have “high” and “low” points on it, regardless of cognitive ability. I am great with language (at least, written language and one-to-one conversation) but terrible at motor skills and perception, and somewhat bad at sensory filter and executive function. Rebecca Burgess has done one of the best graphics I’ve seen, which explains her “high” and “low” functioning areas… please, try to keep this graphic in mind, when thinking/talking about autism:
I’ve decided the way I’m going to approach this month is to alternate between negative and positive posts.
Today’s post is about Ido Kedar. He’s a young adult, I believe (20ish?) who spent the first half of his life classed as non-verbal. Because he couldn’t speak with his mouth and had motor difficulties which made it hard for him to type, use sign language, etc, “professionals” assumed Ido was much less capable than he actually is.
The post below is from his blog, and features a link to a podcast about the ways researchers are now trying to explore the experiences of so-called “low-functioning” or “non-verbal” autistic people. Ido participates by using Augmentative and Alternative Communication (AAC).
This is just one of the many reasons we should always presume competence/understanding/the ability to make choices, even in young children or people who struggle to communicate in more typical ways.
This is always a hard month for those of us who are autistic, or for parents who love their autistic kids. This month has been turned into a fund-raising event for Autism Speaks, an organisation with a TERRIBLE human rights record, which exists primarily to make money for its board, and also, to fund research into eradicating autism.
The only way to get rid of autism, is to get rid of autistic people.
I’ll say that one more time: the only way to get rid of autism, is to get rid of autistic people.
Autism like being left-handed, or being gay, or having red hair–these are things you can hide, but they are always a part of you. Denying that, trying to eradicate it from yourself, can only cause harm. In coming weeks, I hope to talk about “masking” and how harmful it is to autistics; it is, essentially, the same thing as left-handed people being forced to write with their right hand, and it causes untold psychological damage (bed-wetting, regression to a younger age, meltdowns which are sometimes mistaken for behavioural problems, PTSD, etc).
This month, I hope to share some links about autism, and I’m going to start with the history of Autism Speaks. You can find many posts on this subject, especially within the autistic community, but this one is relatively short and the links to Autism Speaks videos seem to work, so this is a good introduction.
Some of this is harrowing–one video made by Autism Speaks features a “mother” (I use the term loosely) who talks about wanting to commit child murder IN FRONT OF HER CHILD, for one thing–so be gentle with yourself: