Most people with autism spectrum disorder (ASD) don’t like changes in their routines. It is all about rules, regulations, and order. This can be because they experience the world as confusing and chaotic, and it is their way of clawing back some sense of control. They like the predictability that a routine provides. If you know the end of the story you can relax and pay more attention to what is going on in the middle. People with autism call ‘normal’ people Neurotypicals (nt’s). Nt’s generally don’t like to know the end of the story – we like a surprise. You could say that I am the opposite of a person with autism – I don’t like routine and rules and will change my schedule at the drop of a hat depending on my mood.
My son Michael was diagnosed with autism a couple of months after turning three. He was lucky to soon get into the AEIOU – an intensive early intervention program in Brisbane for young children with autism. This was very stressful for him – a new place, new routine, and having to deal with other children with autism (they were often noisy and upset).He went there for 5 days a week and I drove him from the suburb of Auchenflower to Moorooka (a trip that took about 40 minutes). You have to think carefully about how you do things with ASD children because once you do it one way, you usually have to keep doing it that way. For Michael this applied to the route taken to and from the AEIOU. It was very important to Michael that I drive the same way every day. Any deviations would result in a tantrum or meltdown; a situation that can be very dangerous in a moving vehicle.
A couple of weeks after he started at the AEIOU I was driving Michael home from Moorooka. My daughter Tessa was two and she was also in the car. I wasn’t concentrating, it was raining heavily and my head was in the clouds, and I missed the usual turn-off on the freeway. What followed could be described as the beginning of World War 3 – Michael went ballistic. He screamed and carried on for the whole trip home. In the car he took his seatbelt off and was attacking me while I was driving. Being a responsible and thoughtful psychologist I immediately lost the plot and was screaming at him to stop. Poor Tessa didn’t know what the hell was happening and was crying. I kept driving as it was too dangerous to stop in the rain and on a freeway.
We finally got home safely, I don’t know how we did it, and Michael was still tantruming. God knows what the neighbours thought was happening. I got Tessa into the house and had to drag Michael screaming and kicking out of the car. Once inside I locked the doors because Michael was trying to get outside. He was punching and kicking the doors. I took Tessa upstairs – we often had to escape from Michael in those days – and left Michael to calm down by himself. This was a strategy that worked most of the time but not this time. He kept screaming so I carried him upstairs, put him on the sofa and wrapped him up in a doona and squeezed him hard. Like many children with ASD he likes the feeling of deep pressure on his body and it has a calming affect on him. Eventually he calmed down and stopped crying. The tantrum had lasted for about 3 hours. All because I drove the wrong way home!
PS. Michael turns nine at the end of this month and is doing extremely well. He certainly doesn’t tantrum like that anymore. This is partly because of the wonderful work done by the AEIOU. Thank you to all the dedicated staff of the AEIOU and founder Dr James Morton. The photo is of a sunflower that Michael grew from seeds provided by his learning support teacher Kerri at Holy Family school in Indooroopilly.
21 thoughts on “Invisible Straitjacket – the Autism Files”
One post has disappeared from your blog? The sunflower is very beautiful perhaps it is your reward for doing so amazingly well with the tantrum?
It’s just invisible – ha! I just made it unsticky from the front – if that makes sense – so it’s gone to the back of the queue. I need a lesson on how to use wordpress. I think the sunflower is beautiful to – they were monster sunflowers and also autistic (all of them with their faces toward the shed instead of looking outward).
The title “Invisible Straitjacket” gave me a shiver. It really describes the challenges our children face in life. If I change the names to Tom and Sean, that is an episode out of my life too. Keep writing, love to all.
Thanks for your comments Helen. I got the title because I feel like I am the one wearing the straitjacket but the person with autism is also wearing one.
I’ll admit that I am only superficially familiar with the concept of autism, Gabrielle. The fact of autism certainly presents some challenges to the assumptions that philosopher types have held and continue to hold with regard to norms and kinds of reasoning. This is the first time I have read of autism in the context of routines. Maybe just my lack of dedicated reading, but the majority of what I have read has led me to think of autism mostly as an unusual sensory condition or deprivation. Very interesting to note from your first four sentences that you have pretty much described the mindset of the ‘normal’ majority; and the philosophers and ‘academics’ who assert our norms. I have no idea what that means in the bigger picture but I have a feeling that understanding autism is among my set of necessarys before I leave this fine planet. My deepest respect to you and your family.
Thanks for visiting Brad. I agree that NT’s also like routine but with autism it is all about the degree – we all have aspects of autism but it is the severity that separates (and this is the bell curve of normality stuff). You are spot on about the philosophical stuff – learning about autism has widened my eyes to the assumptions we make about the human condition. Eg. Theory of Mind is supposed to be an essential aspect of being human but it is theorised that people with autism lack theory of mind (the ability to live in anothers shoes – or to emphathise) – does this make them not human (of course not) – I don’t actually agree that ASD people don’t have theory of mind but that is another kettle of fish.
What a beautiful sunflower Michael grew. The topic of the autism spectrum is fascinating to me. I like what you said in your comment about how all of us have aspects of autism but it’s a matter of degree -that is, a continuum. I’ve never been fond of the digital divide of “normal” and “not normal.” It seems to me that just as there are many different hues on the color spectrum and they all blend into each other, there are many expressions of being human.
My best to you and yours.
Thanks for your comments Thomma Lyn and I totally agree with you about the continuum thingy. The world would be a poorer place without people with autism. Some of the smartest and most creative people on the planet had autism. Autism is fascinating and I plan to occasionally add to the autism files.
Invisible Straightjacket sums it up so beautifully Gabrielle. I think I mentioned one other time, that we often refer to ASD as the invisible wheelchair. And I wholeheartedly agree Gabrielle… the world would be a poorer place.
Where would silicon valley (not to mention Microsoft) be without ASD – ha! I also refer to the invisible prison – thanks Graham for taking the time to comment – I know how busy you have been.
The story you share brings tears to my eyes. I am a single mum with MS to a seven yr old boy with Autism. Unfortunatley he was diagnosed to late for early intervention, so we battle through on our own. He can only attend school part time as he has melt downs and attacks the other children and my days are spent travelling back and forth to school trying to get him to stay in the classroom, we are still waiting for funding and Victoria is one of the hardest states to get it. I can so relate to the senario you described, my son has a map book in his head and if you leave the expected route for any reason you have hell to pay. Please keep writing your memories of this disorder as it puts a smile on the faces of those who battle it daily, thanks for making me smile. Shelly
Thank you Shelly for reading and appreciating my story. It’s funny how so many asd people are very visual and it is that very trait that makes them ‘have a map book in their head’. I’ve got plenty more stories where that one came from (just have to write them down) – my son makes me laugh, cry, get angry and be very proud, so keep tuned.
It is so important for every one to read stories like this one, and you tell it so well Gabrielle. It make me understand more about autism.
That’s great Benedicte – I want to raise awareness of autism. It is through awareness that my son’s life will be a made a little easier because people will be more tolerant of differences.
Thanks for the memories. Things are so different for you all now, more than five years later. You’ve done a great job with him. Ta.
Thanks Lisa. Yeah – a lot different these days, much better but still very strange world (different types of problems and less of them).
Thanks Gabrielle, you have taken me back down memory lane. I too have a son with ASD, who is now 14 years of age, but I had almost forgotten the temper meltdowns. In saying that though, the severity and manner may have lessened but not completely dissipated. I don’t know if it’s because I can handle the situation better now, maybe I recognise the onset or, more importantly, my son has matured a little and is more tolerant of circumstances. Either way, it’s a good thing because now hormones have kicked in and I’m now in a whole new world of challenges! But he is so worth it….
One of the reason I write this stuff is so I’ll have a good memory of it – even now it seems like the distant past as he is coping so much better now – but you are right in that it will never dissipate completely. The teenage years are a challenge with all those hormones kicking in – for all children but particularly those on the spectrum. Thanks Debra for commenting.
Your story reminds me of a passage I read from Oliver Sacks describing his experience getting directions from scientist Temple Grandin when he was going to visit her for the purpose of writing about her autism. He missed one detail and interrupted to ask for clarification, whereupon she repeated the entire set of directions verbatim. In even a mental journey, she was not able to take a detour.
I don’t have any personal experiences with autism, so it’s interesting to read about it. There’s so many ways of being alive, and the dimensions of humanness are very large.
I’m sure she thought the man a fool – love Temple Grandin (as you would know she revolutionised the cattle management systems of modern day farming by thinking like a cow and ‘thinking in pictures’). Thanks Aletha.