Saturday, February 21, 2009

Surfing the Spectrum!

Prompted by a comment from Mel, on my post The Look, I've been contemplating how to explain what Autism Spectrum Disorders are. I've been thinking about it for some weeks. Perhaps the best way to begin with a definition.

Autism Spectrum Disorders, sometimes called Pervasive Developmental Disorders (PDD), are a range of neurological disorders that most markedly involve some degree of difficulty with communication and interpersonal relationships, as well as obsessions and repetitive behaviors. As the term "spectrum" indicates, there can be a wide range of effects. Those at the lower-functioning end of the spectrum may be profoundly unable to break out of their own world and may be described as having Kanner's autism. Those at the higher-functioning end, sometimes diagnosed with Asperger Syndrome (AS), may be able to lead independent lives but still be awkward in their social interactions...Pervasive Developmental Disorder-Not Otherwise Specified may be diagnosed when a child has autistic symptoms but does not fit into another Autistic Spectrum Disorder diagnosis. Terri Mauro.

Two of our boys have an autistic spectrum disorder. Koala has Aspergers Syndrome, and Roo has PDD-NOS. Because no two children with ASD will present in the same way, I can only comment on how ASD effects my children and our family.

When our second child Koala, was a new born we didn't notice anything different about him. Often parents of kids on the spectrum will say that there was always something that they felt wasn't quite right with their little one. Perhaps their baby wouldn't make eye contact with them, they hated to be cuddled, or the parents just had an innate sense of difference about their child.

Looking back the signs were certainly there. Koala's startle reflex lasted for months. I have a fond memory of Bilby carefully approaching his sleeping baby brother and loudly yelling at him so that he could see little Koala's arms wildly jump. Bilby would then dissolve into peals of laughter!

Koala would also shake is head from side to side at an alarming speed. He usually did this when he was tired, so I simply thought that it was just a harmless thing he did like other babies who suck their thumbs. I now know that it is called a "stim." Older children and adults with ASD often find it extremely difficult to control their stims. Some kids on the spectrum might flap their hands, others shake their heads or rock their whole bodies. Koala still shakes his head early in the morning in his sleep, without even realising it.

Koala was the perfect baby! As he grew I did become slightly concerned by his fascination with doors. Long before the age of 2 he would lie near the front door and endlessly open and close it. He loved to push our sliding wardrobe doors for very long amounts of time. If we visited McDonald's he wouldn't be playing in the playground, but pushing the heavy doors open and shut, much to the alarm of strangers who were sure he would jam his fingers in the door. He never did, as he was so focused on the movement of the door.

I had no idea then, that doors were Koala's special interest. "Special interest" is a pleasant way of saying obsession, for that is exactly what a special interest is. Kids who have a special interest will happily spend all their time on their special interest. They will talk of almost nothing else. They will drive their parents and siblings to distraction with a near constant monologue and a series of repeated questions about the love of their life, their special interest. Because kids on the autism spectrum often have poor social skills, they will talk and talk to anyone about their special interest regardless of the verbal or non-verbal cues the listener is attempting to send, as to their lack of interest!

Koala's second special interest was trains and building train tracks. We have almost the complete set of Fischer-Price Geo Trax system. Koala would spend long hours in his room constructing train tracks. Often I would attempt to play with my son. I would pull out the impressive remote controls that made realistic train sounds and try to engage my son in play. Every attempt would end in failure with Koala screaming at me to get the trains off the tracks. I couldn't understand why he didn't want to play with the wonderful engines that went with his tracks. We took him to steam train festivals, watched endless episodes of Thomas the Tank Engine and a documentary on steam trains. When other parents told me that their child was obsessed with trains too, I knew that they had no idea what being obsessed with trains meant at our house!

As I've mentioned in other posts shopping can be a disaster. I now know why. Children on the spectrum often have sensory issues. This can mean they find loud noises, certain textures, light and so forth unbearable. Most of us neuro-typicals (NTs) have a sensory issue. For me it's slimy things like wet bars of soap, messy toothpaste tubes and cockroaches. Perhaps you can't stand the feel of a woollen jumper against your skin, or the sound of finger nails scraping along a blackboard. Now imagine someone insisting that you do the thing which fills you with terror. Imagine them telling you that you're being silly, there's nothing wrong with cockroaches, or whatever it is. How would you react? Multiply that by 100 and you have some idea of why kids on the spectrum have meltdowns over things the NT world tells them are "silly."

A meltdown is not the same as a tantrum. Young children have tantrums in an effort to get what they want. Kids on the spectrum do this too, but a meltdown is something different altogether. Perhaps a better way to describe a meltdown is a neuro-logical storm. A meltdown can seem to come out of no where. They are often caused by sensory issues, like the unbearable feel of the seam of a sock. They can be violent and long lasting. Any thinking person can see that a child in the throws of a meltdown has little or no control of their behaviour. The look on their faces speaks of sheer terror. (In this blog post I touch on the intensity of meltdowns and our journey with Koala.)

In our home many of Koala's meltdowns have often been the result of Theory of Mind problems. Theory of Mind is a complex thing, but basically it means the ability to understand that someone else does not have the same desires, ideas and feelings as you. Kids on the spectrum often assume you know what they are thinking. Stop and think for a minute of the implications!

Thankfully, Roo does not have meltdowns. He does have an ear piercing scream he uses when things don't go his way, but this is mainly due to him not being able to be understood when he attempts to speak. Roo's main challenges are centred around speech and language. Once he is able to communicate verbally I believe that he will be as "normal" as the next child! I have always thought of Roo as the icing on our family cake!

While low muscle tone isn't necessary for a diagnosis of Aspergers, many children with Aspergers have tone problems and general clumsiness. Koala didn't walk until he was 21 months old. All his gross motor milestones were very late. As a baby I bought him a pair of slippers with Mr. Bump on them. Koala had an almost permanent bump on his left temple. My young cousins, after having a cuddle with Koala, would attempt to put him down as they would with any other baby. Koala would simply hit the floor! Many a time I would open the door of the car and Koala would fall out, hitting his head on the curb. His muscles couldn't react quick enough to break his fall.

I have only scratched the surface of what ASD means for our family. I haven't mentioned the significant social difficulties; food issues; literal interpation of language; eye contact; anxiety or how all this impacts on our eldest son, Bilby. But I have provided a small window into our family which I hope will give you some idea od what ASD can look like.

I am thankful that Koala is a joy to educate. Like most kids with Aspergers Koala is very intelligent. He's well on the way to becoming the only natural speller in our family! He also has a great love of his faith. He will happily share treats without being asked, and always thinks of others feelings.

Much of the above seems to paint a less than cheery picture of life with a child with an Autism Spectrum Disorder. But I feel that our lives have been made much richer because of our sons' challenges. I have learnt patience beyond anything I thought I possessed. I have failed miserably many times, but the Lord has shown me time and time again, that I must lean on him when I think I cannot go on.

Lastly, I urge you to view this moving and thought provoking movie, made by autistic woman, Amanda Baggs.


myheartsathome said...

Absolutely brilliantly written, Tricia! Funnily enough I actually recognise some of these things on my own boy!

When he was younger he would spend AGES lining up all his matchbox cars, one after the other, bumper to bumper.

He too, is VERY focussed and gets quite put off when I think, oh look he is playing, I'll spend some time with him. Not all the time, but it happens.

I've also noticed that Jak is RIGID with his routines, I didn't realise how much so till the other night.

Every night, Jak goes to the toilet, brushed his teeth, goes out to the kitchen to get a drink and then goes back into the bathroom to get sorboline cream for his hands. This one particular night, as he was going to get a drink, Taylah went into the bathroom. Well, that was it, wasn't it - he completely spacked out. It wasn't till that moment that I fully realised how important his routine is to him. He thought she was going to have a shower and therefore he wouldn't be able to put the cream on.

I explained to him that that kind of behaviour is totally unacceptable, but I also told Taylah not to get in the way of routines..LOL!

I don't think Jak has any serious issues, but after reading your post, I do think I have an ever so slight appreciation of what your journey is like.

Thanks for sharing!

The Aussie Bush Kids said...


Wow, thank you for sharing I feel privileged to have a little glimpse into your world. You explained it so well.

CatholicConvert said...

The "literal interpretation" still catches us out after 11 years of living with Aspergers. The worst one we had was at the swimming pool when we were running late for swim class and we said "run and take your clothes off". Explaining a half naked child falling over while running with his pants down was not easy.

Priscilla said...

Hello Tricia,

I found your blog when you were replying to someone about AS at

I really like this piece you wrote about your little boy, K. I have added your blog to my favourites list and shall return every now and then to read about your homeschooling journey.