An Iceberg: The Autism Files
My son Michael has Autism Spectrum Disorder (ASD) and would be described as high functioning. Some people ask ‘what is high functioning – does that mean he’s super intelligent?’
No, this is not what it means and I think ‘higher functioning autism’ is a better descriptor. Autism is on a spectrum from less severe to severe. The ASD’s fall under the umbrella classification of Pervasive Developmental Disorders – that means the disorder affects a great many aspects of the person’s life and functioning.
It is important to remember that autism is:
PERVASIVE
When Michael began speech therapy at the age of three, I told the speech pathologist that he had mild autism. She looked at me, shaking her head and said ‘there is no such thing as mild autism’. That statement hit me like a brick. Now, 6 years later, I have a far greater appreciation of what it means.
I now think of high functioning autism or asperger’s syndrome as like an iceberg. Most of the difficulties are not obvious to others, they are hidden under the surface but still have a major impact on the person’s day to day life.
A child with ASD may be sitting quietly at their desk at school and may seem at ease, but on the inside they may be feeling confused, anxious, angry or agitated. They may be overwhelmed by sensory issues (e.g., noise, smell,), confused by an unstructured learning environment, annoyed by disruptive fellow students, have difficulty with processing instructions and self organisation, dread the social nightmare which is the school playground at lunchtime, and be afraid of bullies. The list goes on and on.
The child usually knows it is important to hold it all together at school and they make an extra effort to cope. This can result in hyper vigilance – the ASD child feels like they are under attack and is constantly on the lookout for danger. Hyper vigilance is very tiring.
They usually save up all the tantrums for the safety of the home environment. I have had a number of teachers say to me that my son is generally well behaved at school and I am quick to inform them that this does not always translate to the home front.
Michael’s speech pathologist Leith Johnston use to make school visits to observe my son in situ and to advise on problems and solutions. She was a keen observer and could list all the subtle signs that not all was well (signs that the teachers usually missed). These signs would include things like excessive chewing (on shirt collars, pencils, rubbers etc.,), obsessive picking at scabs, lining up objects, hand flapping and wringing, avoiding eye contact, body slumping and leaning on supports, peculiar verbal noises/tics, echolalia (repetitive speech), uneaten lunch.
It is these types of behaviours that may be signalling anxiety and distress in the person with autism.
If you provide a supportive environment for a person with ASD, you can minimise their distress. We chose to move to a small village so the whole family could live in a healthy environment and Michael could go to a small school. We address problems as they arise. It makes life easier for Michael but there is still a lot of ice under the water.
Today I am writing this as Michael works quietly at his desk (completing homework which should have been done yesterday – did I tell you I hate homework). He was supposed to go to his sports day but refused this morning because his shirt was too small (that’s just the excuse for ‘it’s all too much for me’).
Sports days are generally hated by most kids with autism (noisy, chaotic, competitive etc.) and it’s one of those issues that we haven’t yet been able to deal with satisfactorily .
Staying at home is as good a solution as any.
Gabe Feathers McGee 
G’day Gabrielle, I think you continue to be brave in posting these very personal obsevations.
Two things, just briefly.
1. I hated sports days – because they were just boring and a waste of time and I failed to see the importance of one person running/swimming/hitting a ball faster than another. But I had no excuse, and no-one ever let me stay home – even if I had not finished my homework. Michael is lucky to have someone like you as a mum.
2. Have you read the article in New Scientist, May 1st 2010 (vol 206 No 2758) on p.32.? You should do so.
Fond regards as always,
d.
Thanks d – I don’t know where bravery fits into all this (autism is just my favourite topic of conversation). I loved sports days in primary school when I was better than everyone, and hated them in highschool when I was worse than everyone – haha. I’m not autistic but I do know what it’s likes to suffer severe anxiety and I will do anything to reduce the levels of anxiety that Michael experiences and if that means staying at home, so be it (plus it’s really hard to force a 25+ kg kid to go to school 🙂 I haven’t read that article (I tried googling but I need the title – the date is wrong I think).
Gabe, i can only say this is very interesting. i really appropriate your sharing and the way you seem to be handling this with.
who don’t hate homework..? if any one like them he should be given a special name in the book..
Bwahahahaha – yes, a special name indeed Dhyan. I think homework should be abolished or the school day lengthened and it’s done at school (would help working parents and give parents more time with their kids in the evening). A modern day solution. And if they do homework it should be in high school, not starting at grade 1.
Gabrielle, HUGS to you good loving mother. I had a friend, Kelly throughout elementary school and some of high school who had Asperger’s. She was fine most of the time until stressed by being singled out to answer in class or perform verbally in front of the class. It displayed itself with hand and leg movements and a facial tic. I lost track of her for a few years but when I was in my early thirties I ran into a mutual Acquaintance and learned that she became a very successful makeup artist and was working in the film industry. I have no idea why I wanted to tell you about Kelly and I apologize for taking up so much space here, but keep on keepin’ on sweet Mum and know you are an inspiration…whether you like it or not! 😉 Much Love Gabrielle from this mum to you.
Val, I loved hearing your story about Kelly. It’s always good to hear when someone with ASD has a successful career (which some of them do because they are so single minded). I think we all have stories of 1 or 2 kids at school who probably had aspergers (but we didn’t know it at the time) – often the ones in the library at lunch-time. Big hugs to you too 🙂 You can take up as much room as you want in my comment box.
Oh Gabe, aren’t sports days just the pits! So unstructured, so not fun!!! Small schools are definitely a great choice and often provide a really supportive environment. The move to super schools is a very bad one in my opinion… I was once a teaching principal in small schools and I feel that they will forever be the best teaching days of my career, although I do deraly love my current role working with young people who are experiencing difficulty with the schooling system. Hope your weekend is a good one Gabe,
G
Yeah Graham, the pits – I don’t look forward to them at all and Michael stresses for weeks prior to the event. The worse ones are in summer, with all that heat and sweating and sunburn. When things get too big (such as super schools) it’s usually the disadvantaged who miss out and fall between the cracks. I got the speedpoets mag (lost your email address because my PC imploded) – stamps are on their way. You haveagoodweekend too 🙂
I understand, our kids with ASD don’t have high attendance at sports days, and I think that’s probably better for them, as the stress levels, as you say, skyrocket at those sorts of things. & I agree – awesome that you’re unwilling to force Michael to go!
Thanks Ashely. It’s funny, but I still feel guilty when he doesn’t go (not that I could have done much about it). The main thing he gets upset about is the competing teams – because in his mind, his team MUST win and it’s the end of the world if they don’t. They didn’t win. It’s that black and white, perfectionist thinking that many ASD people have.
I hated homework so much, but happily my kid is old enough now to cope with it. Only rarely is it a problem, whereas in second grade (isn’t that ridiculous that there was homework in second grade!) — oIh, at that age she was so miserable. It was like torture for her and for us.
I’d love to bury in homework those mindless bureaucrats who impose it on kids. Also, I note that while my daughter isn’t autistic, she showed several of the habits you list associated with anxiety — especially the chewing her sleeves. About a year’s worth of sleeves got chewed, but I never did know exactly what she was nervous about.
How I wish schools would get rid of the pressure. It DOES NOT help kids learn.
Grade 2 is definitely too young Aletha – what happened to the child’s right to play. Many young people get anxious at school (not always ASD by any means) and chew their fingernails, thumbsuck, bedwet, insomnia etc., There’s a lot to negotiate with friends, work, and other stuff but sometimes it’s just their inbuilt nature/genetic predispostion to free-floating anxiety. I’d love to design a school that maximises every child’s feelings of safety and well being, so they can then get on with the work.
Another excellent write on this issue, Gabrielle. Is it possible for someone with ASD to willfully overcome their anxieties? I often read your posts with a sense of ‘yep. that’s me your describing’. The earliest memory I have of the kind of behaviour you describe is from Year 2. My teacher used to mock me (playfully of course) for speaking too slowly. ‘Hurry up! The train’s coming’, she used to say. I attracted plenty of bullies at school. It’s hard to know what to put that down to. Racism to some extent, especially the period I lived in Broken Hill. Cripes! I could easily get way off topic here. Anyway, I retreated quicksmart into myself at an early age and didn’t come out until I was well into my thirties. By the time I reached year 9 I was hiding under the school blocks to avoid classes then progressed to jigging school. I really feared that environment so much that I ran away from home and refused to go back to school. I sat down in the middle of an ice rink once (in my teens!!!) because I fell over a few times and then just refused to get up again. I had to be carried forcefully off. When I did finally start to engage in my thirties it was a real effort on my part to stand up against those anxieties and fight them, which brings me roundabout back to my question. Have I just begun to describe a person with undiagnosed ASD, or do I just fit into the category of extremely withdrawn?
You can overcome anxieties but it is a lot of hard work Brad, and even harder if the anxiety is related to being on the spectrum. There is an aspie quiz you can take to screen http://rdos.net/eng/Aspie-quiz.php but a professional assessment would be needed to confirm or otherwise. Just to give you an idea I took it and got 22/200 which is neurotypical (not aspie at all). It sounds possible that you might be undiagnosed aspergers(your writing sometimes reminds me of someone on the spectrum)or maybe something like social phobia – there are plenty of other reasons for being withdrawn. What do you mean racism – where do you come from? Now I really want to read your biography.
Thanks, Gabrielle. I had a go at the quiz and came out with both Aspie and neurotypical traits. The downloadable pdf of the results is very thorough.
I’m not sure of the reliability and validity of that quiz but it’s a starting place (and I found the questions very in depth and food for thought in relation to Michael – and my husband who has some traits but not enough for a diagnosis). ASD is not an all or nothing syndrome. Tony Attwood who is the leading expert on Aspergers says its like a jigsaw with 200 pieces – someone with autism may have 188 pieces of the puzzle, someone with Aspergers may have 120, and someone who is a bit of a loner and slightly accentric may have 80 pieces and a neurotypical person may have 30 pieces.Relatives of a person diagnosed with autism, tend to have more pieces of the puzzle.
Hi GB, Brad has a point. Much of your description of Michael’s behaviour applies to me too. But I love any solitary and non-competitive sport like sailing, fishing, swimming but all for fun. By the way, my youngest’s autistic stepson loves Tiziana and gets really involved in the mechanics of sailing!
People on the spectrum love water so sailing would be a good sport for your stepson Stafford. I think many people can relate to some of Michael’s symptoms but that doesn’t mean they are on the spectrum – they relate just as well to someone with a degree of anxiety. (I don’t know you very well Stafford but you don’t strike me as aspergers – going mainly by your great sense of humour and ability to retell stories that involve many social situations – but what do I know :)). I think one of the key issue with ASD is the inability to interpret social phenonemon or body language. You can do the aspie screening quiz if you want http://rdos.net/eng/Aspie-quiz.php
I so enjoy your posts about Michael. He’s a wonderful little boy, and he’s lucky to have you as his mom.
When I was a child, I was much like Michael — had to work so hard to hold myself together under stress of being overwhelmed by my surroundings and by other people, by sensory stimulus. And still today, too much talking and noise and scramble-scramble can overwhelm me and I have to spend regular time in what I think of as my turtle-shell.
I’m glad you enjoy my post Thomma Lyn. You picked the right place to live then – up in the mountains – writing, hiking, playing piano, playing with your lovely cats etc.
You have really increased my knowledge of autism and I am grateful for it. Suffering from anxiety myself I can only imagine what Michael must go through. However, he has one major ball in his court – you are his Mum!!
anxiety is horrible isn’t it; thanks Selma 🙂
I always find your autism files so interesting, professional and easy to follow(for me).
Reading the comments I see that every one is sitting on an iceberg and it takes a long time, a life time maybe, to adjust to it. I hope that I am not passing my anxieties and fears to my children.
Thanks Ben. Being human is a very anxiety provoking way to be I think. I’d be a bit worried if someone didn’t have any fears or anxiety – that would be just weird.
I happened to come across your blog and noticed that our children share the same therapist. Lieth is wonderful and she does pick up on things that are so subtle. I sometimes go in there almost thinking my high function preschooler with ASD is coping fine and going to do amazing when it’s time for school. Then when I see Leith she does remind me and obviously ground me of the realities that while silent she still suffers internally.
My daughter very much mirrors my behaviour as a child and I’m obviously aware of the genetic implications of ASD. I had many of the difficulties you described in your post and I often wondered why I was so weird and people didn’t understand me. I do want to point out though that i do have a sense of humour be it quite satirical and black at times, it has often been my way of coping.I know you can’t grow out of autism but as an adult I’ve found through extensive life lessons my empathy and understanding of others particularly body language has evolved and I do get those things now (didn’t always). I do however still struggle with organisation and executive functioning skills and often have melt downs when my rigid routines do get upset.
I guess my point is no two people on the spectrum are the same even t hough they may have some similarities. I have 2 children on the spectrum both polar opposites one loves water one vehemently hates it. I think a lot of the people who’v been quick to dismiss my children’s ASD have had a stereotype to which they believed all autistic children should slot into.
Thanks for stopping by Mother of 2 – Leith is fantastic, isn’t she – I had the same experience, I would go in thinking Michael was doing pretty good, and she would always cut me down to size – arrgh – but it is for the best to know the realities. ASD children are all unique, that is for sure, despite the stereotypes – sometimes it is hard to get services and resources because the teachers etc., don’t quite believe a child is on the spectrum (I have a good friend with a boy with high functioning ASD and she was always having to explain why he needed assistance – not fair and also demoralising).