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Tag Archives: autism

10th April 2019

10 Wednesday Apr 2019

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aac, asc, augmentative and alternative communication, autism, autistic spectrum condition, autistic spectrum disorder

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:

https://rosesareredforautism.wordpress.com/

9th April 2019

09 Tuesday Apr 2019

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asc, asc kids, asd, asd kids, autism, autism parenting, autistic spectrum condition, autistic spectrum disorders, parenting

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:


4th April 2019

04 Thursday Apr 2019

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autism, autism awareness, autistic spectrum condition, autistic spectrum disorder, ido in autismland, ido kedar

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.

http://idoinautismland.com/?p=808

2nd April 2019

02 Tuesday Apr 2019

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autism, autism awareness, autism parents, autism speaks, autistic spectrum condition, autistic spectrum disorders, child abuse, child murder, hate group

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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asd, autism, autistic apraxia, autistic spectrum disorders, non-speaking, non-verbal, parenting

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.

Sorry!

28 Thursday Feb 2019

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anxiety, asc, asd, austerity, autism, benefits, depression, dwp, foreign national, proof of ID, residence permit, welfare

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.

Disability Payments

20 Sunday Jan 2019

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anxiety, anxiety and depression, asd, autism, disability, disability payments, government assistance, happiness, mental health, mental illness, spectrum disorder, welfare

After 10 years or more of realising I’m disabled, I’m finally going to do it. I’m finally going to apply for government assistance (benefits or welfare, you might know that as) so I can have some quality of life, and get some help for my various and debilitating care needs.

In time, I hope to be able to refurbish my house, so that I don’t have to bend–if I never had to lean and pick anything up, my back would go out less frequently, and I could reduce my reliance on strong painkillers, which would result in my having more energy and thinking more clearly. This would likely make a return to higher education more feasible, which could, in turn, eventually lead to a paying job that I could work from home (that’s the absolute pinnacle of the dream, anyway).

For my autism and social anxiety, I would love a service animal. I have never felt utterly terrified when stroking a dog, but I would need one that was incapable of jumping up, barking excitedly, etc, as my little girl is terrified of dogs… I’m only going to be able to afford an animal like that, if it’s a government-sponsored deal.

With a service animal, could I even work outside the home, one day? Not to spout a cliché, but stranger things have happened.

Most of all, my husband could feel better about his reduced hours at work (he went from working full-time to part-time, in order to help take care of me and my kids, also both autistic) and whilst he’s happy to do it (and knows we’re all safer with him here–they can’t physically attack me if he stands between us, etc) he worries an extraordinary amount about the money we have (or don’t have, really) coming in. If I could take a load off of his mind, I would consider that only fair.

He’s the reason that, for the first time in my life, all my short stories and blog entries seem to have happy endings.

A Brief Bio, 3rd January 2019

03 Thursday Jan 2019

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amateur author, asc, asd, autism, autistic spectrum disorders, biography, bipolar disorder, chronic illness, creative writing, journaling, mental health, mental illness, parenting, writing

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.

Christmas, 2018

30 Sunday Dec 2018

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asd, autism, best christmas so far, children, christmas, family, happiness, husband, kids

It was wonderful.

I was so, so ill, both on the day and for about 10 days before. (I’m still coughing fire, sometimes hard enough to wet myself… gotta love stress incontinence, amiright?)

New Husband Jake sorted everything out. I did a 2-hour shift on Christmas morning at the suicide prevention hotline, and then, I basically slept until an hour before the kids came back from their dad’s. (We alternate; it was his year to have them Christmas Eve and Christmas morning, and mine to have them Christmas afternoon and overnight.)

While I slept on the couch, Jake finished wrapping their presents, cleaning their rooms, rearranging furniture (including building new beds and hooking up new electronics) and he brought me coffee and cold & flu tablets when I finally woke up.

The kids–sometimes overwhelmed by Christmas–utterly loved their gifts, especially the lay-outs of their “new” rooms, and for the first time in my life (including my own childhood) I witnessed a Christmas with no child meltdowns.

I am so, so blessed. I have never been this happy before, and yet, I feel like overall, I am becoming happier.

I love you, Jake. I love you, Sweet Babies. Thank you for making this life worthwhile.

Recent Memories, September 2018, 1

24 Monday Sep 2018

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asd parenting, autism, autism parenting, autistic children, autistic kids, autistic spectrum disorders, children, kids, my babies, parenting

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.

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