A beautiful and spot on account of perspective – what is a simple, daily act for some people is a massive hurdle for people with Autism and Asperger’s. If just one other person understands and acknowledges this feeling – the post is worth it.
Devereaux nails it again. This could be about so many people I know – including Geordie (and myself). Someone once said to me that they knew when Geordie spoke up, it would be something worth listening to.
Feeling a bit guilty because I haven’t posted here for a considerable amount of time (and I haven’t kept up to date with the other blogs I follow either – sorry). However, excuses abound — most of them revolving, sadly, around work. This unfortunate blip in my day is a necessary evil, partly because it is funding my second excuse — our upcoming trip to Italy.
We’re away for five weeks — three of them during the term, followed by two weeks of school holidays.
Now that our departure date is just around the corner, excitement is starting to creep in — for three out of four of us.
Geordie is not what I’d call keen.
I’d rather go to school than go to Italy.
This is pretty huge for a boy who hates school.
In fact, he revealed the other day he is now telling kids at school that he’s just being dragged along to Sydney with his Mum for three weeks for a “stupid dragon boating event”.
He figures it’s the least exciting of any potential destination so nobody will bother asking him about his trip when he returns to school.
I have to hand it to him — it’s a pretty good strategy for someone who hates talking about himself and answering a myriad of boring questions. Sydney is just down the road (sort of) and everyone goes there, so who would bother asking about his time away?
Except, his best friend AND his teachers all know where he is really going.
Oops! My bad.
Just about everyone is astounded when they find out he doesn’t want to go.
Who wouldn’t want to go to Italy?
It’s not Italy, per se. It could be anywhere.
It’s the unknown that’s the issue.
We’ll be staying in lots of places we’ve never been. Sleeping in beds that aren’t ours. Eating off crockery that’s not ours. There’ll be lots of people — way too many people. We don’t have a fixed daily schedule.
It’s like a never ending minefield of what-the-hell-is-going-to-happen-next-edness.
The other issue is the ‘fact’ that “Italy is just full of boring old buildings and museums.”
And then there’s the unexpected twist — in Social Studies, Year 7 have been studying ancient civilisations. Our hopes that this would inspire him in a positive way were dashed when we found out he doesn’t like his teacher. Bugger.
Finally, the ultimate insult. Not only are we making him go and making him miss his downtime at home in the holidays — we get back with a weekend to spare and then the first day back at school is his birthday.
Anyway — we’re going. We’ll modify what we do to ease some of his pain, but not all of it. He will have to deal with new experiences, and I am just living in the hope that once we get there, with new ‘early birthday present’ video camera in hand, he’ll find something to enjoy.
Before I return to my packing (and repacking), I’ll share one last gem from Geordie … I’m not sure whether to be impressed by his creativity or chastened by the reality:
I’m just like an old blanket you drag around behind you everywhere you go.
Tonight I helped a local group with some Autism awareness training, I think it went well. I used the coke can explanation to describe a day at school for Sam, Sam is fictional he is a little boy aged 10, he has red curly hair and a cheeky smile, he is a combination of my own school experiences and that of my children.
The coke can analogy was first described to me by another Autism parent a good few years ago and it has always stuck with me as the perfect way to explain the way a child bottles up everything and then let’s it all go once getting out of school. I have seen other people write about it, this is my interpretation.
The coke can example…
”Come on Sam time to get up”
The light streaming in the curtains burns Sams eyes blinding him.
Most Mums know their children better than anyone else. (I apologise for this generalisation—I am fully aware this is not the case in every situation, but I’m a Mum so am writing from the Mum’s perspective.)
We interpret the cries of our babies; we know when they’re hungry, tired, grumpy, happy; we know what they want; we understand toddler babble-speak.
For many Mums, this need to decode everything ends to a certain extent when their child becomes more articulate and verbal (at least until the teenage years, when it’s a whole new ballgame).
However, for me as a Mum with a 12-year old high-functioning, verbal, articulate child who also happens to have Asperger’s, it is yet to end. I’m still wading through a daily sea of interpretation, misinterpretation, guessing, second-guessing and problem-solving.
If a job required expert skills in ‘code decryption’, I reckon I’d be a shoe-in candidate.
While Geordie is very articulate in other ways, he often struggles to identify and find words for how he is feeling; or, he knows how he is feeling but can not work out why. This is common in Autism/Asperger’s, but not necessarily definitive, and can be the cause of what many people see as ‘anti-social behaviour’ or meltdowns.
Sometimes, working out the cause of Geordie’s anxiety or distress is simple; it may only take a couple of minutes. At other times, it may take half an hour, or longer — sometimes several days and very, very occasionally I am unable to work it out and we just have to move on.
The process involves a lot of questioning, a lot of guessing, a lot of elimination technique and an ability to decode expressions and read ‘between the lines’ of Geordie’s responses.
No matter how long it takes, or what the outcome is, you can be sure of one thing —
I know my child!
So, when I have other parents, family members, teachers, school psychologists or medical professionals telling me that what I am seeing and hearing and knowing must be in my imagination or the result of helicopter parenting it really makes me cranky. (**understatement)
I have weathered this storm of disbelief for nearly nine years now. On and off.
It all began when I asked Geordie’s paediatrician for a referral to Therapy ACT to get him assessed for Asperger’s/Autism.
He didn’t think it was necessary. I did.
If my natural personality weren’t that of a pig-headed, stubborn mule — I would not have taken it further, and we would not have a diagnosis! Our life today would be VERY DIFFERENT.
Since that first run-in, I have dealt with another paediatrician who thought Geordie’s refusal to eat and subsequent weight loss was because I didn’t understand nutrition, so she tried to send me to a dietician to learn how to feed my son. (She met the pig-headed stubborn mule.)
I have come across strangers in the street who’ve suggested I learn how to discipline my child. (They met the ranting tyrant.)
I’ve also known of several teachers (some of them Geordie’s, but not all) who’ve refused to acknowledge the need for ‘downtime’ among other things — I don’t have space here to list them all. (When they were Geordie’s teachers, they met the ‘parent from hell’ eventually.)
On the flip side, I should acknowledge that I have come across equal numbers of people, if not more, who are supportive, wonderful, understanding, flexible …
Over the years, my openness about Geordie’s diagnosis and its associated behaviours has increased — in parallel with my lack of tolerance for the non-believers.
Top of my list of people I’m gunning for at the moment is those who listen with false sympathy to a mother’s description of her child’s behaviour. They nod when the mother wonders if the behaviour might be a sign or symptom of Autism/Asperger’s — and then they blow it by turning around and saying something like:
Oh, I’m sure he’s just being a boy.
It’s just a phase — he’ll grow out of it.
Don’t you think you’re just being overprotective?
Really? My child does that too — everyone does.
Or my current personal favourite for its insinuation that it is the mother’s parenting skills that are at fault:
I don’t think it’s Autism — I think it’s behavioural.
I have heard each and every one of these ‘opinions’ multiple times — both directed at me personally, and at other parents.
They achieve nothing positive.
All comments like these ones achieve are to make the recipient (usually the mother) feel like she’s not doing a good enough job, or that she has failed her child.
The other thing they do, I’ve decided just recently, is paint the deliverer of the comment as someone who does not respect the opinions and observations and knowledge of others. In other words — a total tool who is not worth listening to.
A mother knows her child.
We need to respect this knowledge.
We need to acknowledge it — not belittle it.
To all mothers out there who are, or have been, struggling with the negative perceptions of other people:
Do not listen to them!
Listen to yourself! Believe in yourself!
Do what you know is right for your child — even if you have to fight, even if you shun people along the way, even if it becomes difficult.
Your child is more important than anyone else!
It will hurt. It will be stressful. IT WILL BE WORTH IT!
If you’ve met one person with autism, you’ve met one person with autism Remember this because this is about my autism You don’t have to be sorry, you don’t have to congratulate My autism is neither a curse nor a gift It is simply a human condition that needs no cure nor blessing I am not a neurotypical nor atypical autistic I have no superhuman abilities nor gifted skills, I am neither low nor high Just a hard functioning autistic with hypersensitivity to sounds and crowds, trapped in a concrete jungle of noise and people and the endless pursuit of materialistic goals My autism needs no cure, it needs vast open space to breathe and abundant solitude to heal I’m not proud of being autistic. I’m proud to let my weirdness shine. A half full glass is a half empty glass. My autism is both a disability and ability. Autism…
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.
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.
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.
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.
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!
Not so momentous, maybe, but for my boy it’s huge. He’s never been on a school camp — not because he hasn’t had the opportunity, but because he’s never wanted to go before.
I fully suspect he didn’t really want to go to this one either — at least not the ‘I’m so excited I can hardly contain myself’ wanting I often see in other children in the lead up to camp. However, he agreed to go because this is part of who he is becoming as he matures — the person who participates because he is part of the group.
I’d been working out what to do to encourage him to go ever since I found out about the camp last year. (Actually, it’s been in the back of my mind since he was in Year 5 and didn’t attend camp — all schools take their new Year 7s on camp.)
There are multiple reasons why he doesn’t enjoy this type of activity, but they all boil down to the unknown: unknown people, unknown location and unknown activities.
Geordie’s school use Birrigai for their Year 7 camp and, because of this, I figured the last two unknowns were things I could do something about to help him prepare.
Facts: Birrigai is a 45-minute bus trip from the school. They also hire out their facilities to groups during school holidays and weekends.
Solution: Take Geordie to Birrigai for an overnight stay.
Facts: I have been there more times than I care to count — as a teacher running a camp excursion, for teaching professional development days and as a student myself. In this time, I have done every activity they have on offer. I know the grounds like the back of my hand.
Solution: While I can’t have Geordie experience all the activities, I can show him where they are situated and describe to him what will happen.
I contacted Birrigai management and explained the situation. Hey Presto — we were in.
** As an aside, I should explain at this point: I personally do not like Birrigai. This is not based on the place itself — it’s a lovely setting, well maintained, flushing toilets — but rather on my own experiences as a student and a teacher. This forms a huge part of The Things We Do as parents to help our kids.
Once I’d booked, I sat down with Geordie and told him where we were going and why. This has always been a vital part of my communication with Geordie — openness and upfront explanations of our actions:
We are going to Birrigai so you can see what it’s like and so you know what to expect when you go on Year 7 Camp.
Note the use of when in that sentence, not if.
I’ve learned in the past, if I give Geordie an out, he’ll take it. Who wouldn’t?
But I also tried to make it clear that, while I wanted him to go, if he got there and it was too much, I would pick him up in the evening and take him back in the morning for the daytime activities.
Compromise and negotiation are key.
Anyway, as it turned out we had the whole camp to ourselves. This was brilliant as we were free to explore every inch of the place as and when we wanted.
We were lucky that Geordie’s mate, Owen, was available to join us.
Watching them explore — I think they had a ball. We talked about the different areas, the history of the place (it all but burned down in the 2003 bushfires, so I told them what it used to be like before that and how much better it is now) and they got to see the areas usually out-of-bounds for students.
Afterwards, once we’d returned home, Geordie was fairly non-communicative in his assessment of the place.
It was alright.
That was pretty much all I got.
I didn’t get: ‘I hate it,’ or ‘I’m not going back.’
He’s there right now! (And it’s been 24-hours with no phone call.)
As much as taking Geordie and Owen to Birrigai overnight put me out of my comfort zone I am ever so glad I did.
Taking away some of the unknown may not have been a huge contributor but I know it played a part.
Familiarity is important.
Preparation is important.
** And a second aside: I saw a new side to Birrigai myself — it’s a really beautiful, peaceful place when you’re not there with 100+ too-excited-to-sleep children. My full admiration and thanks go out to the seven staff members who are there right now.