Tag Archives: autistic spectrum disorders

9th April 2019

09 Tuesday Apr 2019

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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.)

I digress.

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:


2nd April 2019

02 Tuesday Apr 2019

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Autism Awareness Month:

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:

https://swirlymind.wordpress.com/2017/03/11/please-dont-support-autism-speaks/

Autistic Apraxia

06 Wednesday Mar 2019

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That’s a new term, for me; I learned it today, and spent the afternoon crying (off and on) because I think my daughter may have it, and I didn’t know, and we didn’t get her assessed for it, and she struggles so much with language and I haven’t known how to help her, all these years.

When she was a completely non-verbal toddler, Speech and Language tried to get me to ignore her; “You anticipate her needs so well,” they said. “We’ve never seen any parent understand what their non-verbal child wants the way you do. How do you do it?”

I couldn’t explain it… she’s my darling. Of course I can read her. That’s my only real job, in this life–to love and support my kids.

“You actually anticipate her too much,” they continued. “If you could make her wait a little longer, make her ‘ask’ for things non-verbally, for example by making eye contact with you, it might encourage her to speak.”

I *said* she couldn’t speak. I *told* them. I’ve been telling everyone that she can’t do it (except her; her, I tell she can speak, she’s got a beautiful voice, I love hearing it, and I don’t ever point out how she muddles words and her voice is garbled and she sometimes can’t force even a garbled half-word through her lips; I loved it when, age 4, she learned to say “fish” and what she actually said was “boosh”).

No one offered us anything, other than Picture Exchange and a lanyard with little pictures she can select to indicate what she wants (she CAN select them… as of THIS year…. she is 12). I tried, a little, for a little while, to ignore her into speaking. But I’m not a monster–I was utterly incapable of ignoring my baby’s needs, just like I could never “just ignore” her round-the-clock (yes, literally) crying as a baby.

Who are these people? How can this be “neurotypical”? How can anyone, with any empathy at all, claim we’re the ones without it, when they treat us like this?

I’m so sorry, Naomi. I didn’t know what to do. I’ll research, I’ll find communication aids, I’ll find specialists, I’ll do better. Mommy loves you so much. I’ll do everything I can, to get you whatever you need.

A Brief Bio, 3rd January 2019

03 Thursday Jan 2019

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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.

Recent Memories, September 2018, 1

24 Monday Sep 2018

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She called herself, “Spin”–one of her alter egos, one of the media through which she accesses the verbal communication the rest of the world seems to take for granted–and she spent an hour with me, playing on my phone and laughing at our shared jokes. I can tickle her again, it seems (and I *promised* her there would always be tickles, 6 and 7 and 8 and more years ago, and I KNOW SHE REMEMBERS, so I’m glad there are tickles now, just like I promised) and she laughs again, not every day, but at least she’s not crying every day anymore, and this may not last forever (what does?) but it’s good right now.

He plays Uno with us, almost every day. We’re about equally good at applying the rules, he and I, and perpetually appeal to the other adults for further instruction (I should be an adult, but I understand why I sometimes don’t seem like one–I catch on so slowly, at team games, at rules with variations, at anything with social give-and-take, so of course my own children are sometimes tempted to see me as one of them, just a strange older child who sometimes tells them what they can and cannot do, and makes their food, and sends them to their rooms to calm down when they get agitated). I digress.

We spend so much time laughing, the 2 of us more than anyone else in the room, and I help him, I suppose I “make” him cheat, to be quite frank: “If you do x, y will happen to me/Jake/Douglas…” and I chortle in my joy (yes, that’s from “Jabberwocky,” and yes, I had to look that one up, and no, it’s not a perfect quote even though I did look it up) and I don’t even care if he knows he’s my pick to win every game we play, even at (especially at?) my own expense, because what *is* a mother, if not the person you can count on to always be on your side, to tell you right from wrong and then turn around and declare that, ultimately, she would still love you and your sibling(s) best no matter what evil you committed?

And besides: he really *doesn’t* understand the rules, yet. When he’s a little older, we’ll stop reminding him to say, “Uno!” every time he’s down to one card. Or we won’t, and he will hardly be the only autistic teen/adult in the world, who gets some special dispensation so he can join in with everyone else, now will he? And if you don’t like it: FIGHT ME, BRO. It is right and just and good, for the more vulnerable to be given more help. I doubt my stance on that will ever change.

Stop digressing! Okay, I will.

She watches us, sometimes. She’s not yet confident enough to play, but I wonder if she would try if it were just the 3 of us? I’ll ask, in time; but only once I remember the rules better myself… that’s not a bad idea, generally speaking. How could it be bad? It’s a chance for me to properly be the adult, in the only situation where I’m convinced I can really be fair: arbitrating between the 2 of them, each the only entity I love in the same way, and with the same ferocity, that I love the other.

A Link to “Supporting Claimants: a practical guide by Jay Watts”

07 Friday Sep 2018

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This is important to me, and it’s excellent advice for health-and-social-care workers in the UK. It is also (am I giving a trigger warning?) harrowing reading, if you have a little imagination and read it thoughtfully.

I periodically fill these forms in for my own beautiful, beloved children–40-odd pages, covered in questions which instruct me, in various ways: “Tell us, as explicitly as possible, how broken and helpless and developmentally stunted your children are. Give us as many grim details as you can, think of everything you and your children just endure bravely, all the things you just accept and try not to dwell on, in your everyday lives… Now describe that all in excruciating, minute detail, and remember to be honest about the emotional strain caused to both you, and your children.”

The respite is never more than a year or two, before they’re asking me to claim again, answer questions by phone, clarify something. I suffer from anxiety and depression anyway; spending hours fixated on the reality of all the struggles my children face… well. It usually takes me a week or more to complete the forms, and at the end of it, I feel as if the government would prefer me to kill myself and my children too, rather than give us money to live on. That’s not hyperbole or the disordered thinking of a depressed mental state: in a rational frame of mind, regularly taking my antidepressants, after a good night’s sleep and some tea and toast, I genuinely believe most high-ranking officials in this government would prefer our deaths–even by murder/suicide–to our continued survival, as long as the blame didn’t fall on them.

I remember the last telephone conversation I had with the DWP. I was asked if my autistic, non-verbal, self-harming, incontinent overnight (both bowel and bladder) 11-year-old could just change her own nappy, and why did I have to be awake in the middle of the night to help her?

When I described her efforts to clean herself, the things she understands (she needs to be clean, she doesn’t want to smell) and the things she doesn’t understand no matter how many times I show her, walk her through it, remind her (how to clean herself properly, how to make sure the poop is disposed of hygienically) when I spoke of how she sometimes grows frustrated and hits herself during self-care tasks, and how the last time I let her clean herself for a few days, to help her learn, to try to give her a little privacy and independence, she got thrush (a yeast infection, we’d call it back home) from repeatedly, clumsily, uncomprehendingly cleaning poop into her vagina, I broke down sobbing.

I cannot imagine how much worse it would be, were I claiming for myself; like most mothers, I’m willing to suffer intrusive questions and beg for mercy and cajole and plead for my children, in a way that I wouldn’t be able to find the energy for, if it were just to help me. I am unsurprised that, in the face of the increasing harassment of disabled people in this country, suicide rates in the disabled population are rising (and have been, since this party took over the government). Anyway. I digress, or at the very least, I’m growing long-winded.

Perhaps I should have just shared the following link without any introduction; I could write another 750 words on this, and still have more to say, so what was even the point of sharing this much; but it seemed important to tell you, and especially my new readers, why I care so much.

The article I’m linking you to isn’t about some hypothetical, pitiable, but ultimately distant human beings I’ll never have to look at. It’s my own sweet babies, their futures, what would happen to them if something happened to me, it’s about the system that would swallow them up and maybe, maybe look after them–and maybe leave them to their own devices, scared and unsafe and unable to properly clean themselves, each of them a constant fire risk, a risk to themselves when their ungovernable, autistic meltdown rages send them into a fury of self-harm, of dashing their heads against walls, of my little boy trying to hurl himself down the stairs, because (as an actual example) there was an unskippable ad (commercial) that interrupted his favourite YouTube channel.

It is so hard to keep them safe, clean, fed, even when I am with them 24 hours a day. It is natural that I live in a state of recurrent terror of what would happen to them, if I were no longer here; how could they navigate the welfare system, themselves?

http://asylummagazine.org/2018/08/supporting-claimants-a-practical-guide-by-jay-watts/