A stimming timeline

STIMMING

In May last year, I wrote a post about stimming. I commented on some of Geordie’s past stimming, observing that his movements had changed and become less obvious (and less ‘weird’ in the eyes of society) as he was getting older. At the time of writing that post, I wondered if he’d stopped stimming — although I was under no illusions he’d ‘grown out of it’.

He hasn’t stopped, by the way. You just need to know what to look for.

Stimming – or stims – are a wide variety of self-stimulating behaviours that people with ASD may exhibit when experiencing sensory overload or high levels of anxiety. Stimming can be a repetitive motion such as hand flapping or rocking, repetition of words or phrases, vocalizations, or even the repetitive movement of objects. Stimming still puzzles many neurotypicals, who often want to eradicate or control stims. While stimming may seem alarming or strange to the rest of us, these behaviours do serve a purpose for those on the spectrum.

Maureen Bennie 

If you google stimming or stims you will discover a multitude of definitions, articles and blogs on this subject. Mother of two children on the autism spectrum, Maureen Bennie, provided one of the more clear and accurate ones I could find in a quick 5-minute search. I particularly like her last two sentences.

Geordie’s stimming appears to be most prevalent when he is anxious about something, but it also appears occasionally when he’s bored. Along with the changes in his stimming behaviour, there has also been an increased awareness of what he is doing.

I thought it may be interesting to make a little timeline of the changes in his stimming, if only for my own reflections:

     ♦ 2 years old (approx) – 4ish:

Geordie was obsessed with HotWheels Cars. He would spend endless amounts of time lining them all up, then moving them all forward one space, and back one space. (I am not 100% sure if this is stimming or not, but when he was doing it, he wasn’t aware of anything that was going on around him at all which was characteristic of later stimming movements.)

3 years old – 4 years old:

Hand flapping, quick jerky movements which sometimes extended to his whole arm and occasionally, but increasingly ended in a jump. These would sometimes be repeated several times.

5 years old – 10 years old

The hand flapping and jump evolved into pacing forwards and backwards with hand/arm flapping and punctuated by the occasional jump. This movement would go on for anywhere from about 30 seconds up to 10 minutes or more.

♦ 9 years old – 11 years old

Although the pacing/hand flapping movement was still a major stim, it started being replaced by ball-bouncing. Geordie would go into the backyard and pace up and down the grass, bouncing a tennis ball. Again, he would do this for varying lengths of time and ahead of various activities (but always, every day without fail, before he went to school).

♦ 7 years old – right now

Geordie has been known to pull at his fingernails (and also his toenails) until they bleed. He picks at them with his fingers, but never chews them. I suspect he does this a lot while at school, but he also does it while he’s watching TV. The sound is very rhythmic.

♦ 11 years old – 12 years old

One day, Geordie came home from school with a Yo-yo. It became his stimming activity for about 8 months. The yo-yo lived on the kitchen bench, and Geordie would intermittently appear in the kitchen and start using it — again, always before school.

♦ 9(ish) years old – sometimes still now

Pacing and talking to himself is particularly prevalent when Geordie is angry, frustrated, stressed or very anxious. I am not sure if he is aware of this, though suspect he is at some level because if we ask him what he said he can get very annoyed and always denies doing it.

♦ right now

Geordie taught himself how to juggle during the Christmas holidays. First two balls with one hand, then three balls with two hands. He’s very good. He ‘practises’ quite a bit because it’s his current stim.

The most obvious and prolonged stim was the arm flapping and jumping one. 

This movement, above any of his other stimming behaviours, was the one that happened anywhere — at home, at relatives’ houses, at the shopping centre, at restaurants and at school.

It was the movement that was frequently commented on and referred to by one of his Year 1 teachers as ‘flapping around’ and ‘deliberately disruptive behaviour’.

It was the action I was initially embarrassed about and tried to get him to stop — and because of this (or rather, my inability to get him to stop), it also signifies the time I first learned what stimming was.

He was doing this a lot when we were referred to his psychologist for his eating anxiety. She taught us that this movement was like having an itchy spot and, like an itch, if it wasn’t dealt with it could be agonising. She worked with Geordie on this too and got him to recognise it and name it. She taught him to tell us, “I need to jump,” so we could take him somewhere private, where he wouldn’t be stared at.

This was the turning point.

Recognise stimming for what it is.

Name it.

Deal with it.

The thing is — everybody stims, autism or not. Think about your repetitive pen-clicking, toe-tapping, neck cracking, finger drumming. They are all stims. They’re just less noticeable and more socially acceptable.

One wish I have is that stimming would be talked about more openly, rather than hiding it. It is not something to be ashamed of.

I would love to know of other people’s experiences if you want to share.

 

 

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Positives

I follow several blogs and Facebook pages that have ‘autism’ as their central theme, most of which are written and/or managed by people who have a diagnosis themselves.

One of these, which I’ve only recently discovered, is Autistic Not Weird — a webpage/Facebook community run by Chris Bonnello, a primary school teacher with Asperger’s who has turned professional Autism speaker.

A recent post by Chris said this:

We spend so much time and effort talking negatively about autistic people — discussing only their difficulties and calling it ‘autism awareness’.

What if we took some of that energy and made people aware of HOW AWESOME autistic people are too?

— Chris Bonnello

I believe he makes an excellent point. Looking back at many of my posts, I don’t think I’ve talked negatively on the whole but most of them are ‘this is the experience that happened to us and this is what we did about it’ or ‘look how much he’s improved’ or ‘if I’d known then what I know now’.

There are times, few and far between thankfully, I find myself thinking ‘why us?’, ‘why him?’ or ‘it’s not fair’.

Every parent of a child with special needs thinks this at some point (and if they tell you they don’t, they’re covering up). The thing is — it’s okay to feel this way as long as it doesn’t overwhelm you and become the norm.

For those times when I do feel like that, Chris got me thinking it would be nice to have a little list of all the things that are wonderful in our Asperger’s World.

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Image courtesy of Stuart Miles at FreeDigitalPhotos.net

Raising our child with Asperger’s Syndrome means:

♥ we are allowed into a world where we can see things from a perspective we would never have considered otherwise

♥ we get to slow down, seek out the really valuable and fun activities, rather than trying to fit in every experience, everywhere and with everyone

♥ we appreciate more — the little successes and small joys are so much more worthwhile

♥ we have developed an insight into people — family members, friends and the community as a whole — often seeing people for who they are, not who they claim to be

♥ we have an amazing opportunity to learn from a young mind who can express himself beautifully and with honesty

♥ we have developed empathy and can use it to help others

♥ we get to live with a unique individual who is sensitive, serious, has the quickest mind and wit — and is as funny as can be, making us laugh every day!

Next time someone ‘sympathises’ and tells me how hard things must be — I think I might need to set them straight.

Yes, things are tough sometimes. The learning curve is momentous. There are slumps. But the highs and the benefits and the joys outweigh these negatives — if only we know how to access them.

Living outside the box is a lot more fulfilling than living inside it with everyone else!

Thank you, Chris, for opening our eyes.

 

 

 

OMG! He did it!

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Image courtesy of Stuart Miles at FreeDigitalPhotos.net

There are no adequate words to describe the joy a parent feels when their child has achieved something and you have to say to yourself, “See — there was nothing to worry about.”

Nothing in the world feels as good as your child proving you wrong.

Camp has happened!

It was a success!

For three days and two nights, I’d lived with my mobile phone glued to my side. Every time it buzzed or rang, my heart stopped.

All for nothing!

It was all okay!

Geordie stayed both nights, ate the food, participated in the activities — and he talked openly about it all on the way home and over the next couple of days.

Not everything was brilliant:

♦ the food was sub-standard (especially the lasagne ‘which had way too much cheese’ and the fact ‘they only had white bread’)

♦ damper cooking was unsuccessful (burnt black like charcoal — inedible)

♦ boys in his cabin talked all night and the ones at his table did gross stuff with their food and the water jug

But there were significant highlights:

♦ the giant swing was ‘scary but awesome’

♦ the flying fox was fun

♦ all the other activities (team initiatives, movie night, ‘a minute to win it’ games) were pretty good

♦ the girls got the bats in their cabin, but the boys didn’t

♦ ‘You should’ve heard the boys in my cabin burp!’

 

I’ve written about the significant preparation that went into getting Geordie to go on this camp.

Perhaps stupidly, I asked Geordie if he thought us taking him to Birrigai beforehand helped him when he went with school — but I needed to know.

At first he said, “Nah.”

Then he said, “Well sort of — a bit.”

I’ll take that. If what we did helped just a bit, then that’s good enough.

As always, every new experience is a massive learning curve for all of us.

And it’s with the support of everyone around us that we get through it all.