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autism

LEGO®-Based Therapy – These kids are from my planet

14th October 2014 by Jax Blunt 7 Comments

So, I’ve been reading How to build social competence through LEGO®-based clubs for children with autism and related conditions (Daniel B. LeGoff, Gina Gómez de la Cuesta, GW Krauss and Simon Baron-Cohen) for a little while now.

The premise is basically that if you have a structured environment and activity, you can use it to develop social skills. I was interested in whether you could transfer the learning points to something other than LEGO® (minecraft or a programming activity for example) but the book isn’t particularly forthcoming on that, being very tied up on evidence bases and so on.

lego based therapy 2

Buy at JKP | Buy LEGO®-Based Therapy

at Amazon (kindle or paperback)

In itself, this is a book for professionals, those running group therapies, working with multiple children. There’s lots of discussion about whether including non autistic children in the groups is worthwhile, and lots of debate as to why LEGO® works so well.

This all seems to me to be missing the point slightly. Basically, if any of us, autistic or not, find a group where we have common interests and goals, we are far more likely to have increased social interaction. If you never meet anyone you like, you aren’t really strongly motivated to chat, and work out how to get along with people, are you?

Through the whole book, I was struck by the single minded attitudes of the professionals quoted. Eg

Labeling of otherwise inappropriate social behaviour as ‘disrespectful’, ‘rude’, ‘inappropriate’ or ‘impolite’ is a waste of time and creates a potentially pejorative and negative social environment. This is never helpful. Focusing on positive social communication is vital. Commenting on positive social interaction so that the other group members notice and can identify those actions which elicit positive attention and praise is much more effective. Saying which behaviour you want, rather than telling participants what not to do, is very important.

No, really? Have these people never come across the ‘don’t think of the elephant’ experiment? (Go on, try it. Tell someone not to think about elephants and then ask them what they’re thinking about. We only hear the thing, not the ‘don’t’. So if you’re parenting, try to change from saying ‘Don’t run’ to your child, to ‘walk’. It works better.)

Also, as I said this book is aimed squarely at professionals. So “The identification and diagnosis of potential participants should necessarily be undertaken by qualified mental health or neurodevelopmental specialists.” Thus letting out charities or parents from trying to apply the principles described. This seems rather a shame to me, there are many charity groups with high levels of expertise who I’m sure could facilitate this type of group as they are already running group activities for children who would benefit. And parents are often expert in their own children, and that expertise should not be discounted. I’m spotting a bit of gate keeping and empire building basically, and that makes me concerned.

There are also some strands in the teaching of social skills that I’m finding quite uncomfortable. So for example

Potentially stigmatizing repetitive actions, such as thumb-sucking, hair-twirling, nose-picking, hand-flapping, repetitive speech mannerisms or vocalizations, can be addressed in individual therapy, and then prompted or reminded with an agreed-upon cue or gesture during subsequent group sessions. This cueing or prompting of corrective actions is also often usefully shared with peers, who might prompt an appropriate alternative gesture (eg thumb under chin, forefinger at mouth rather than thumb in mouth; fists pumped in excitement as opposed to hand-flapping). Again, these should be arranged and implemented only by qualified therapy staff.

Now, to the best of my knowledge I’ve never flapped my hands. I’ve no doubt if I had it would have been encouraged out of me. The things I do – chewing the inside of my lips, twiddling hair bands, fiddling with yarn, are all low key and overtly acceptable. I’m still left confused – why is fist pumping acceptable, and hand flapping not?

Is this book describing a therapy that’s supposed to develop social skills useful to the participants, or improve adherence to social norms so that the rest of society feels more comfortable? There’s really very little physical difference between flapping your hands and pumping your fist, so the acceptance of one is down to a wider social tolerance, and that to me is wrong.

I’m very aware that there are social skills that many autistic children and people are lacking. But when therapies cross into normalisation instead of skill building, I’m seeing all sorts of red flags. Advice including: “therapists unfamiliar with current trends in verbal and nonverbal greetings among different age groups should try to observe some typical age peers engaged in greetings, for example at school, a sporting event, or other social gathering.” makes me wonder, who are we teaching the social skills to here? The ability to match your activity appropriately to the group at large is the skill required, not acquiring one specific set of greeting behaviours. I think the authors of this book are beginning to miss the point slightly.

There are some positive points here – it’s definitely an interesting read. But I think the things I took away from it aren’t necessarily what the authors intended. I’m definitely rethinking my ideas about a minecraft group – I probably will still do it, but the aim will be to get children interested in minecraft together to have fun. It’s almost impossible that they won’t learn some stuff from that interaction, and it may well be that some social guidance will be required, but as it will be a parent supported group, that will be down to the parents to encourage observence of the limited set of group rules that will be set up cooperatively before the group starts. We won’t be letting any qualified experts get stuck in, that’s for sure.

And hand flapping will very much be allowed. While adult directed activity to determine who is cool, will not.

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Filed Under: Book club Tagged With: autism, JKP books, LEGO®-Based Therapy, normalisation, social skills

Nerdy, shy and socially inappropriate. By Cynthia Kim

20th September 2014 by Jax Blunt 7 Comments

image

Buy at JKP books.

Buy on kindle UK

Buy on amazon.com

Nerdy, shy and socially inappropriate: a user guide to an Asperger life is a book by Cynthia Kim writer of the blog Musings of an Aspie. Unlike other books I’ve read recently on Aspergers, this one was like sitting down with one of the understanding friends I’d so like to have handy in real life. So much of it tallies with my experiences growing up undiagnosed, although it seems that Cynthia had a family environment more tolerant of the differences she displayed. (I think my family mostly wanted me to be happy, and couldn’t quite appreciate that I could be happy *and* different. And solitary. And bookish. And so on.)

One of the major characteristics of many post diagnosis books appears to be a feeling of woe – in my recently arrived post diagnosis pack, there’s a diagram of the transition phases including denial, anger, sadness and so on. What if you don’t feel anything negative? For Cynthia, and for me, the autism (or aspergers) diagnosis clicks into place, and sheds light on things we’d never understood. This is a positive thing, and I’ve not a lot of time for people trying to tell me I should think otherwise.

Of course there are differences between my experiences and the authors. We aren’t one and the same person, despite the many similarities, not least the martial arts interest. But this book is a personal memoir, as well as a practical guide, and it never feels exclusive. It’s never telling me my experience of me is wrong, if you see what I mean, just that our experiences might be different.

There are also lots of factual/ informative sections which were particularly interesting. And hints and tips on how to manage various of the challenges that come along with this different way of processing life. I’m going back to reread the chapter on Executive Function, and then I might be handing it out to various other people I know struggling with those aspects.

All in all, I can’t recommend this book highly enough, particularly to anyone diagnosed in adulthood, or just wanting to understand the aspergers experience. I would say that I found it particularly useful covering the female experience, but I don’t think it’s written in such a way that men would get nothing from it. (Not being a man, I can’t really tell you that definitively though.) (I have felt that some books written by male authors are exclusionary – there are aspects of life that they just gloss over.)

So, go buy it. Preferably from the nice affiliate links at the top of the post. Thank you. (Disclosure: book was received for review from JKP books.)

If you’d like to read more of my personal experience of diagnosis, my post So, autism, is a good place to start.

And if you’re interested in books about adult women and autism, you might also enjoy Pretending to be normal.

Jessica Kingsley Publishers
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Filed Under: Book club, read52 Tagged With: aspergers., autism, Cynthia Kim, JKP books, Musings of an aspie, review

So, autism.

15th July 2014 by Jax Blunt 31 Comments

wpid-img_20150125_162530.jpg

Back in my 20s, while doing a lot of martial arts (up to 5 2 hour sessions a week) I started getting problems with my knees. And sometimes my hips. And I had them checked out by doctors, had tests for arthritis (runs in the family) and no one could find anything wrong with them.

Fast forward through 20 years of hip and back pain, sciatica, physiotherapy and so on, and finally an antenatal physiotherapist calmly noted that my legs are different lengths, which twists my pelvis and back and causes a multitude of problems. She prescribed a raise, that I wear pretty much all the time, and it solved the problems. I’ve had very few issues since, and I’ve even managed to take up running, and run a 10k.

My hips, knees and back aren’t the only problems I’ve had all my life.

I’ve been diagnosed with anxiety and depression many times. I’m frequently (nearly always) lonely. I don’t get people, in person. I can’t follow conversations where lots of people are talking, I constantly miss the subtexts. (I have some peculiar sensory things going on. Please don’t wear velvet near me.)

I’ve just been diagnosed as on the autistic spectrum. Given my intelligence level and ability with words, the most appropriate diagnosis is Asperger’s Syndrome.

How do I feel about this?

It fits. In the same way that discovering the leg length difference explained all those physical issues, this explains oh so very much of everything else. I feel a sense of relief, along with a nagging irritation at all the people who dismissed the difficulties I experience with comments like “oh, everyone feels that way”. You know what? I don’t think they do.

There is only one problem. No one has invented a raise for the brain, so I can’t just wipe out 20 years of emotional difficulties in the way I did the back pain.

But. Another thing.

These aren’t only my problems. This is partly to do with societal expectations. There is this idea that it’s necessary to be the life and soul of the party, to be able to laugh, and joke, and carry on in a crowd. Not everyone can. Not everyone wants to. And there is absolutely nothing wrong with that. I would very much like to enjoy some social occasions. They don’t have to involve hundreds of people and lots of noise. If they do, I can pretty much guarantee that I won’t remember half of the people that I meet. I’ll smile and say (hopefully) appropriate things – but I won’t necessarily make a great deal of sense. And if I make it through the whole day, I may be silent for hours afterwards, and feel a need to go and stare at the sea.

I love the sea. It grounds me. I miss my running – I haven’t been running since the thing. I think I might start walking – walking should be OK, shouldn’t it? Is running OK? I’m waiting on test results. The likelihood is that the thing was just a faint, but it’s come on top of all of this diagnosis process and it’s just made everything that much harder to deal with.

That’s life, right? We all have our things, someone told me that the other day. It made a great deal of sense at the time, but I can’t now remember who it was. Sorry.

But yes, overall, relief. This is me. Some bits of me are different to lots of you. But I’m still the me I was before you started reading this post. Nothing has changed. Has it? Will you think about me differently now?

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Filed Under: It's where it is Tagged With: aspergers syndrome, autism, diagnosis

Some days are diamond, some days are stone

6th May 2014 by Jax Blunt 12 Comments

Can’t use the title I wanted to use, because I already used it. So I’ve had to put the whole lyric in, instead of just half 😉

It’s been that kind of day really.

Big started the day with a physio appt, (which meant I started the day hauling her out of bed and going to a physio appt) to replace the one we totally forgot two weeks ago after the last Kentwell mini. It’s really just a case of keeping up with the exercises, but she finds it hard to remember to do them regularly, so she’s been referred for a course of pilates classes, on the NHS. Apparently you can be referred for one batch of 6, and that should teach you enough to do it on your own, but if you want more classes you can pay and go to the ones I’ve been going to. Which makes me feel a bit better – I thought the physios were referring direct on to a paid service, which didn’t sit all that well with me.

Then Tim had another eye appt, and I was waiting for a woman who we’d cancelled, but was supposed to be ringing, and she didn’t turn up or ring, so I don’t know what’s going on with Tigerboy’s communication group yet. And I think it probably started last week 🙁

When I’m waiting for something to happen, I find it really hard to do anything else. And I had another appt of my own this afternoon, which was kind of filling my head.

That made 4 1/2 hours of talking about myself, my childhood, my thought processes, difficulties, confusions and so on. And I don’t actually know what the psychologist concluded, if anything.

It’s a bit like scraping your brain out with a spoon, into a bowl on the table in front of you and having someone poke it a lot, then trying to fit it all back in again. It doesn’t feel quite like it fits. And it’s in the wrong order, and a bit bruised.

(It’s not at all like that really, but I’m trying to explain how I felt when I came back. Wrung out. Shaken up. Lost for words.)

And while I was gone, Small thought it was going to rain, and rushed to bring the (still wet) washing in. And I told him it kind of needed to go back out again, so he took it out, and then hung it all crammed together on one side of the airer. And I snapped at him.

🙁

Bad mummy.

And then I took a very deep breath, reined in my inner Sheldon, and thanked him for being thoughtful, apologised for being horrid, and dealt with redistributing the washing myself.

Slightly better mummy.

On my way through town decompressing after my appt, I popped into a charity shop, and picked up a copy of Eleanor and Park. When I got home, I discovered Tim had confiscated Big’s internet devices, and she was very happily planning a herb garden instead. Once she’d done that, I gave her the book.

eleanor and park

Good mummy.

Then I did the cooking, even though it was her turn, so she could read.

Come on, I must be doing alright by now?

Except dinner was a bit late, because we were doing this all over the kitchen floor.

reading jigsaws

He loves jigsaws. And he recognises quite a lot of the letters and will read them out. I probably was taking it a bit far trying to teach him to blend the sounds though, given he doesn’t really talk. So now he points at each of the letters on the ball jigsaw before saying ‘baw’. Unutterably cute. Not sure whether that’s good or bad mummy to be honest!

There’s more to come. I bought some diverse picture books in the charity shop too, and we read one of them tonight. You’d have thought by now I’d have learn to scan books before reading them at bedtime, but no. The dolphin was a gonner, and poor Smallest sobbed and sobbed, so we had to have a chapter of Milly Molly Mandy as well to settle her down.

Bad mummy. Gah.

I think that’s probably about evens over the day, yes? I’ll quit there before I fall behind!

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Filed Under: It's where it is Tagged With: autism, Eleanor and Park, jigsaws, reading, stuff

Running.

20th March 2013 by Jax Blunt 40 Comments

In the snow.

Feet thudding along the pavement out towards the sea, weaving bergen the school children loitering their way home.

I wanted to see the sea. I wanted to be out of the house. I wanted time for it to be just me, not mummy, not partner, not geek, not liveotherwise, not even Jax. Just me.

So I ran. Then plodded down steps and scrambled and staggered along the shingle beach, dodging the waves, tide high on this spring Equinox. In the snow. I did mention the snow, didn’t I? Up and down steps over groins, not sure how far I’d come or how far I could go. Just keep running.

When I first started I couldn’t run round the block. 0.4 of a mile defeated me. It took several attempts to get that far without pause. Now I can run for half an hour without pausing, which means I get to go more interesting places, like the beach. It’s good living near the beach for that.

I’ve run 10k, once, for charity. And now I’m adding my miles to 5000 miles for autism. I like to count.

I went to the doctors recently. I asked about adult diagnosis for aspergers or high functioning autism. He wasn’t interested. Told me there’s no funding for it, I’d have to apply to the PCT and what’s the point?

The point is I want to know. I want to know if all the various treatments for anxiety and depression throughout my life were pointless because they were trying to dampen down a part of me that is actually normal for me. I want to know if feeling constantly overwhelmed and like my head might explode is just something I have to work out how to live with. I want to know that it isn’t me being stupid, I’m just not wired to understand social interaction and the constantly changing rule sets.

To not really have friends.

I want to know. Is that wrong?

But it doesn’t look like I’m going to. So I guess I’ll keep on running. 3 miles today. (Although I walked up the hill. And then spent the next half mile trying to decide if that meant everything after that was ineligible for 5000 miles. Because that is how my brain works. I need to know the rules. The fact that most of the rest of the world ignores or changes the rules as they feel like it is painful. )

How far shall I run tomorrow?

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Filed Under: It's where it is Tagged With: 5000 miles, aspergers., autism

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