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:
So… applying for benefits for myself went about as I expected it would:
The government department that pays me 2 separate payments, each month, 1 per child, and has done so for the last 7 years, doesn’t know who I am. I find this unlikely, and just more proof of the lengths this government will go to, to avoid paying vulnerable people enough to live on.
The thing is, I can’t prove my married name–I need a passport in my new name to change my residence permit, and I’ve lost my passport (I’m a foreign national, remember). And do I have the funds to travel to the American Embassy in London to get a new one? Maybe I would, if I’d been claiming the payments I qualify for, for all these years…. c’est la vie.
We soldier on. But I had a pure autistic meltdown (several, actually) in the weeks following my last blog post; I’m sad to say, I did spend a few days contemplating whether it would just be easier and better to kill myself. (I always hope those days are behind me, but somehow, they never are.) I’m sorry I disappeared, but survival is all you can manage, some days.
On the plus side, I’ve stumbled across the autistic Twitter community, and the amount of support I’ve found there is unprecedented. Expressing myself well in 140 characters is a challenge, but one that’s actually helpful, to me–I do have a tendency to waffle on, and a lesson in brevity never hurts. I just wish my brain didn’t reset and send my train of thought every which way when I move to start a new Tweet in a long thread…. I hope I improve at staying on topic, but I’m 35, rather old for the learning and performance of new tricks. We shall see.
I hope you all, my dear readers, are happy and healthy. Thanks for sticking around, erratic as I am–it makes me feel a little less alone to know that I have readers who come back time and time again, to read my musings.
I posted this elsewhere, and I thought it might go nicely here:
As an adult (and during the diagnoses of my 2 children with autism) I realised my “quirks” were, at least in part, due to my undiagnosed autistic spectrum disorder. Struggling through a world made for NT folk has left me with serious anxiety, depression, and other issues; it has not stopped me from achieving a BSc, parenting my 2 lovely kids, volunteering for a suicide prevention helpline, nor getting married to my wonderful husband… but it can make me a bit much at parties, what with the run-on monologuing, misunderstanding of personal boundaries/private information, and debilitating social anxiety.
I have one parent and at least one sibling with Type I Bipolar; my other parent has undiagnosed HFA (never spoke until age 3; inability to grasp abstract concepts; special interests; uncontrolled mood swings, especially when outside routine situations; terror of social situations; trouble understanding the difference between private and public info; visual stimming… all traits my children and I share).
Luckily for me, my mom and I share a special interest (reading for both of us, and in my case, creative writing and journaling) and that helps me cope. I can escape into books, poems, short stories, movies, or videogames; and when the pressure is too much internally, I can write about my feelings and the effects of my ASD, which usually lets off enough steam to keep me coping.
Emotional/mental challenges are the bane of my life, but I’m also in limbo waiting for tests re: some physical symptoms unexplained by my anxiety or depression. In no particular order, the 3 things I would most like to know are: can anything make my sciatica significantly better, aside from pills I don’t care for; what would my life have been like, if I’d seen an autism specialist (NOT an ABA salesperson) when I was trapped in puberty; and will I ever finish a collection of stories good enough to publish?
I am recovering from a childhood and adolescence spent in a fundamentalist Christian home, with added elements of child abuse and psychological trauma. I practice mindfulness meditation, journaling (as I said above) and the fine art of trying not to lose my damn temper. Autistic meltdowns are *much* more forgivable in children than in plump middle-aged women who look relatively self-contained… right up until the moment the cup runneth over.