The Autism Files: Not all programs are equal

The Autism Files: Not all programs are equal

early warning signs (742x470)

Remember the paediatrician who said that the teaching hospital where Michael was diagnosed had an autism program? Well during the year that our son was attending the SEDU (age 3) we decided to enrol Michael in this hospital program. We filled out all the paperwork required and eventually got a letter saying we could start on so and so date with a group of ASD children about the same age as Michael.

On the day of the program I was filled with optimism but I was also nervous because I didn’t know what to expect and how Michael would react. I wasn’t happy that it was taking place in a hospital. First, it was always hard to get a car park in this particular hospital because of the sheer size of the place and numbers of people going there every day. Second, it was stressful for Michael because it was a crowded, noisy place with a great potential for sensory overload. This was the place he had come on several occasions to be assessed and diagnosed and it was likely he associated the hospital with mostly negative experiences – I know I did.

Well, I finally found a place to park in a multi-story building across the road from the hospital. I got Michael out of the car and holding his hand walked across to the hospital via a pedestrian bridge. It took about 15 minutes to find the correct floor and the exact room. We were asked to sit in the waiting room until everyone had arrived. Michael looked at the floor most of the time, avoiding the visual stimuli of a busy hospital, and held his body in the twisted position of someone who didn’t want to be there, flapped his hands and repeated words in distress.

When the program started all the children were asked to come into another room, where there was a whiteboard, some rugs on the ground to sit on, and a large working space. There was a sink near the door with a hospital tap, the ones that you can turn on with your elbow. The children that were in the room with Michael were relatively well behaved. Michael seemed to be the only one that was super stressed.

The female program leader stood near the whiteboard, asked all the children to come and sit on the rugs and proceeded to talk about something. All I knew was that this did not seem to be the way to go with ASD children. Where was the fun stuff to play with and the nice things to look at? Michael had great difficulty in processing verbal language, as did most ASD children. He wasn’t listening to the lady at all. He kept getting up and wandering around the room and I would hustle him back to his place on the floor.

When he spotted the sink and tap his eyes lit up and he toddled over to this watery delight; remember his obsession with water. He turned the tap on and he turned the tap off, he turned the tap on and he turned the tap off, until Mummy stopped him. This happened repeatedly for much of the session. The other children, to my amazement, sat in their spots and listened to the lady at the front. I didn’t understand – didn’t these kids have autism? Suddenly my high functioning ASD boy was the lowest functioning in the room and he was having a field day.

After the verbal introduction the children received 10-15 minutes of a type of speech therapy activity, which again involved lots of listening. Michael didn’t respond at all and ran over to the door, opened the door and ran down the corridor, closely followed by Mummy. I caught up with him and brought him back to the teaching room. Five minutes later he ran off again and I ran after him and brought him back.

Everyone was staring at us and looking concerned; we were disrupting the program. I was getting decidedly pissed off. Why didn’t the program have any ASD friendly activities? Why hadn’t they started the session with some play-based activities to engage the children? Why was my son the only one acting like he had autism? Michael decided to make a third attempt at escaping down the corridor so I grabbed him by the arms for dear life and told the coordinators that we had had enough and that we would have to leave.

I left that hospital with the feeling that I had been hit in back of my neck with a blunt object. I managed to get Michael safely in the back seat of the car, payed the exorbitant car parking fee and drove home with tears streaming down my face, apologising to Michael. We never went back.


The Autism Files: Where are all the Services?

The Autism Files: Where are all the Services?

Where are all the Services?

 In 2003 at the age of three my son was diagnosed with autism. The diagnosis was made by a team of clinicians, led by a paediatrician, in a large children’s teaching hospital in Brisbane. The news was both good and bad. It was good because the doctor was confirming what we already knew deep in our hearts, that he had autism, and now we knew for sure what we were dealing with. It was bad because – well this is autism we are talking about – it is a very complicated condition and we knew very little about it.

After delivering the diagnosis the paediatrician, seemingly upbeat, told me about the next steps in the process. He told me about the SEDU programs that are run by the Education Department in Queensland. These Special Education Development Units (SEDU’s) are ‘kindergarten’ type early intervention programs for children who need extra assistance because of Autism Spectrum Disorder (ASD), Down’s syndrome and other developmental conditions and disabilities. The program would run for a couple of mornings each week for a year or two and we would have to wait a few months before he could begin.

The paediatrician smiled and said that the hospital also had its own autism program that our boy could attend. This program was for young children and was one session a week (a couple of hours) for about 8 weeks. That sounded terrific to me (in my profound ignorance of best practice interventions for ASD) and I left his office feeling hopeful of the future.

On our son’s first day at the SEDU I had absolutely no idea what to expect. Playgroups had always been a problem for him, so attending a structured kindergarten with other children who also had special needs was a big black hole of not knowing as far as I was concerned. How was he going to cope? Would he eat his meals? Would he cry all the time and refuse to participate?

Well the day started out swimmingly with our son refusing to get out of his car seat in the car and then the progression into a monster crying fit. I didn’t know what to do! He was struggling so much I knew it would be very difficult, if not impossible, for me to carry him and his belongings into the classroom. My stress levels were rising with my blood pressure and the minutes were ticking away. I knew I couldn’t do this on my own so I locked the car and quickly went inside and asked for help. The director of the program (a wonderful and wise woman) nodded her head in understanding and came outside to assist me. Together we got that strong little boy with big fears and tears inside the SEDU.

I stayed for over an hour to see if he would settle and he did calm down enough to get through that first day, and the next and the next. The program was very well run and the teachers were knowledgeable and skilful in the area of ASD. He had assessments from speech therapists and occupational therapists, and the program was based around the results of these assessments. My son tolerated (sometimes even enjoyed) the program and improved in many areas because of the expertise and patience of the staff. But I knew it wasn’t enough.

After the diagnosis I had begun to do as much research and reading as possible in the area of autism. One thing stood out amongst the cacophony of ‘treatments’ for ASD and that was the benefits of intensive early intervention; intensive being the operative word and that meant 30 to 40 hours a week. These were primarily behavioural interventions involving a focus on learning theory and skills development with the use of Applied Behaviour Analysis (ABA). The SEDU program incorporated a number of these techniques but was only 9 hours a week and that wasn’t nearly enough to maximise the benefits for the child. It was a good step in the right direction but much more was needed.

I believed that intensive early intervention was the way forward for our family but when I looked around for service providers I found none. There were no programs in 2003 in Queensland that offered full-time placements in early intervention. I couldn’t believe it. The only option was self-funding an in-home program where I would have to arrange the employment of a number of staff who would implement an ABA type program (presumably designed by myself). The complexity and expense of this approach blew my mind and I didn’t know where to begin. I began to feel like a rat in a learned helplessness experiment.

to be continued


Food Wars: The Autism Files

Food Wars: The Autism Files

food wars photo

If you have children you will know that getting them to eat what the rest of the family eats is not always easy. However, there are kids who are fussy with food and then ASD kids who can be more than fussy with food. The difference is like the difference between your average person on a diet and the daily life of an anorexic.

The usual advice for the parents of children who refuse to eat what is on there plate is to let them go hungry and when they are hungry enough they will eat the food. Well, this sometimes works with ASD children but more than likely it won’t. Some ASD children will starve rather than eat a food which they find abhorrent. In fact, sometimes the only way to feed some ASD children is through a tube that is surgically placed directly into their stomach to bypass their mouths.

Imagine if someone sat you down at a table and insisted that you eat a plate of doo poo mixed with an assortment of insects and cod liver oil. Would you eat that when you got hungry enough?

I suspect not.

This is how it can be for ASD children who are faced with foods that they will not eat. There can be sensory issues behind this aversion (tactile, acute smell, taste etc.,). There can also be rules-based obsessive thought patterns behind the behaviour. There could be physiological reasons. There can be other ASD particular reasons which we neurotypicals may never decipher.

Whatever the reasons, it can drive parents of ASD children completely nutty with exasperation. I’m guessing macaroni cheese and pink milk isn’t the best selection from the five food groups for good nutrition.

My son, who was diagnosed with autism at the age of three, spent many years eating vegemite or peanut butter on white bread sandwiches at every meal and occasionally ham or tinned tuna, dried apricots and salty plain potato chips (only the ones with ridges on them; he wouldn’t eat the flat ones).

When we switched to gluten free white bread, nothing changed except he would have Mighty-Mite (a vegemite equivalent) or peanut butter on gluten free bread.

He refused most meat and all vegetables (except potato) and most fruit (except oranges and dried apricots). In later years he started to eat steak and bacon, but stopped eating ham and tuna. He later refused all fruits. He also stopped eating sandwiches altogether (toast was fine), but developed a taste for ‘junk food’ like pepperoni pizza (no other types allowed), hot dogs, bacon and egg burgers, hot chips. He smothers most foods in tomato sauce (only one particular brand is acceptable).

Then he also developed a taste for garlic bread and some curries. We went to a restaurant once and he ordered the duck and absolutely loved it.

Confusing isn’t it!

The presentation of the food was also a key issue. The use of the same bowls and cutlery was important in the earlier years. I was required to cut the bread symmetrically (a perfect centre cut). Placement of hated food items (eg. a pea) on his plate was a huge mistake. Putting different foods very close together on a plate was not a good idea (that’s probably why sandwiches never work and have to be dismantled by him into component parts before any part is eaten).

Hiding ‘prohibited’ foods is not a good idea for my son (hiding vegetables in the stew doesn’t work when your kid has an exceptional sense of smell and can identify onion from 100 metres away). Failure to adhere to the ‘rules’ of food would often lead to hysterics and running away from the table (sometimes he would run around the house several times until he had calmed down).

Over the years I’ve learnt not to force my son to eat what he refuses to eat. I won’t place unwanted food items on his plate in case he miraculously changes his mind.

I’ve occasionally negotiated with him to taste a new food (on the condition that he can spit it out if he chooses) for a reward. This has generally not achieved anything except annoying both child and mother.

I have discussed food and nutrition with him and tried to get him self-motivated to try some healthy options. He now understands that a diet of foods high in fat, sugar and salt (and low in vitamins, minerals and fibre) can have negative health effects in the long run (e.g. diabetes) but he still won’t eat fruit and vegetables. He says that he is considering eating them in the future and he really wants to be healthy but it is very difficult for him. I believe him.

As with most things in the ASD world, nothing happens easily or overnight. His diet is gradually getting more varied and he is motivated to keep trying.

If you are a parent or caregiver of a fussy eater on the autism spectrum, please remember:

Keep trying

Don’t feel guilty

Tomato sauce is packed full of vitamin C 😉

and there is always hope.


A good book on the subject:

Brenda Legge (2001). Can’t eat, Won’t eat: Dietary Difficulties and Autistic Spectrum Disorders. Jessica Kingsley Publishers, London and Philadephia.

Search Engine Poetry

Search Engine Poetry

searching for answers, hoping you’re wrong

my toddler is obsessed with water
toddler obsession with light switches and water
2 year old child that looks sideways
child sensory overload with hair dryer rocking stimming
toddler fascinated with peripheral vision
baby hates neck touched
toddler obsessed with light switches
rubbing material between fingers
need for sameness
child hates smell of fruit
toddler obsessed with fans

autism awareness blue


Bluebee the blogger and poet challenged her readers to compose a poem from search engine terms used to get to your blog.

An interesting and quite challenging challenge 😉

So here above is my ‘found’ poem. Each line is an actual string of search engine terms used by people who clicked on my blog.

It makes me a little sad that some parents may discover my blog through the googling of what are considered red flags for autism. Some might want to shoot the messenger and I can understand that totally.

I hope that some of the red flags are just red herrings. But if they are not, don’t despair – the earlier a child is diagnosed with autism the earlier that intervention can begin and the better the outcomes.


The Eyes Have It: The Autism Files

The Eyes Have It: The Autism Files


The Eyes Have It: The Autism Files

Children with Autism Spectrum Disorder (ASD) have difficulty with eye contact. They often don’t like looking directly into eyes or maintaining eye contact in order to share experiences with others.

Looking into a face, and particularly the eyes, gives us information about what people are thinking and feeling. We are reading and interpreting facial expressions. Individuals with ASD are missing out on this information, reducing their ability to understand what is going on in social situations.

Children and often adults with ASD not only avoid looking into eyes, but when they do try to read eyes, they are not very good at it. Here is a quote from a person with Aspergers Syndrome.

People give each other messages with their eyes but I do not know what they are saying (Wing 1992, p 131).

When my son was two years old some relatives commented that he didn’t have very good eye contact. I hadn’t really noticed. Later I did notice that he would turn his head away from strangers or people he didn’t see very often. He would look at people with sideways glances and became an expert at using peripheral vision.

His speech therapist pointed out that he couldn’t see things that are directly in front of him. This upset me greatly as I couldn’t fathom what it meant. Was he blind in some way or was he choosing to do this. When she interacted with him she would place objects to the left or right of his visual field.

I think that eye contact was very confronting for our son and that looking sideways reduced the discomfort. Interestingly I found that if there was a physical barrier (such as a glass window or a mask) between our son and the person, then he was quite happy to look directly at them. One year he played Santa Claus at the school play and he interacted perfectly normally with all the other kids. In fact, reveling in the attention he was getting as Santa Claus, hidden as he was behind the beard and mustache.

Another thing that he did, which may be related, was backwards hugging. A front hug appeared to be too confronting so he would back into me and wrap my arms around him.

When he was running in races at school he would have his head facing to the right. This looked very peculiar, but he was seeing directly ahead with his peripheral vision. Friends gave him a motorized Jumbo Jeep and he would do the same thing, head facing right as he drove around the back garden. He was seeing clearly in front of him with his ‘sideways looking’ as he drove the car and never ran into anything. It was very funny.

Teachers like children to look at them. They think the child is not paying attention or is being rude if they don’t look at them. However, children with ASD find it incredibly difficult to listen and look at the same time. They may be able to listen better if they are NOT looking at the teacher. This is an issue of teacher education. They need to understand that children with ASD should not be forced to endure eye contact. It is not essential to listening and learning and may be detrimental to both.

People with ASD can be taught to look at a persons nose, chin or ears instead of the eyes. The person being looked at will probably not even realise that they aren’t being looked in the eye. Everyone is happy.


Wing, L., (1992)  ‘Manifestations of social problems in high functioning autistic people’. In  E. Schopler and G.B Mesibov (eds) High Functioning Individuals with Autism. New York: Plenum Press.

Dr Sheldon Cooper and Aspergers

Dr Sheldon Cooper and Aspergers

The Big Bang Theory

I love the television comedy The Big Bang Theory.

At first, after seeing promos of the show, I thought it looked pretty stupid. But changed my mind when I watched a couple of episodes. I was hooked and thought it hilarious with brilliant script writing.

The main character Dr Sheldon Cooper has all the traits of someone with Aspergers Syndrome (not that it is ever mentioned on the show). You could say the volume control on his aspieness has been turned up for comedic effect.

The actor Jim Parsons who plays Sheldon is an absolute scream and has won numerous accolades for his portrayal of the genius theoretical particle physicist. He has the body language down pat and I can see my son, who has High Functioning Autism or Aspergers, in his mannerisms.

There is a huge number of people with Aspergers who are fans of The Big Bang Theory. The shows producers and writers are obviously getting it right.

Here are a couple of clips from Youtube if you are interested. There is also a clip of Dr Tony Attwood (world’s leading expert on Aspergers Syndrome) answering a couple of questions from people with Aspergers. Dr Attwood delves into the issue of Aspergian masks (pretending to be neurotypical) which is fascinating.

Watch them all, watch one, watch none – your choice.


ps. you have to click where it says ‘watch on youtube’ to watch these clips as they are not embedded on my blog 😉

Today is International Asperger Day 2012

Today is International Asperger Day 2012

Today is International Asperger’s Day, a day to celebrate and show support for people with Asperger Syndrome and their families and carers.

I’ve been blogging about Asperger’s Syndrome for the past few days and today, the 18th February is the day.

Here is a wonderful video of the amazing surfer Clay Marzo who has Asperger Syndrome. Tony Attwood is in the video discussing Asperger Syndrome and how the condition has helped Clay Marzo to excel in the waves.

Autism Heroes

Autism Heroes

Autism Heroes

Many people on the Autism spectrum (which includes Asperger’s Syndrome) have reached dizzy heights in their chosen career or creative endeavour.

There is a wonderful book for children (aged 8-12) on the autism spectrum called Different like me: my book of autism heroes by Jennifer Elder. It is very inspiring.

The book describes the lives of famous/inspirational people who had/have autism or who probably would have been diagnosed with autism if they had lived in this day and age. These people excelled in the world of science, art, literature, maths, comedy and philosophy. They all had great difficulty fitting in, but still managed to achieve great things.

It is beautifully illustrated by Marc Thomas and Jennifer Elder.

The book outlines the lives of:

Albert Einstein
Dian Fossey
Andy Warhol
Benjamin Banneker
Andy Kaufman
Wassily Kandinsky
Julia Bowman Robinson
Piat Mondrian
Alan Turing
Sophie Germain
Lewis Carroll
Isaac Newton
Nikola Tesla
Paul Erdos
Glenn Gould
Immanual Kant
Barbara McClintock
Joseph Cornell
Hans Christian Andersen
Temple Grandin

The biographies include some of their autistic characteristics.  For instance, Albert Einstein didn’t speak until 3 and didn’t speak well until at least 9. He was not considered very smart by his teachers and got thrown out of one school. But he had an intense interest in all things physics and went on to develop his famous theories of space and time.

Temple Grandin says ‘this book will help inspire kids who are different and show them that they too can succeed’ .

I would recommend this book for all children, but particularly those with autism, as well as a terrific resource for teachers, parents/carers, siblings.


Note: This is a repost for tomorrow’s International Asperger Day 🙂

My son who has high functioning autism or asperger syndrome has spent the last 3 days on a school camp – a huge achievement for him, so that makes him my autism hero – can’t wait to pick him up this afternoon and give him the biggest hug ever (not in front of his friends of course, that would be too embarrassing for any boy – haha).

International Asperger Day 2012

International Asperger Day 2012

This Saturday the 18th of February, 2012 is International Asperger Day.

Happy 106th birthday Dr Hans Asperger for Saturday.

International Asperger Day is a day to celebrate the good doctor’s birthday and to increase awareness of Asperger Syndrome.

So here goes.

Dr Hans Asperger was an Austrian paediatrician who in 1944 described the key features of Asperger Syndrome. The syndrome has more recently been classified as belonging on the Autism Spectrum and can be found sitting near or sometimes on top of High Functioning Autism.

My 11 year old son has High Functioning Autism but his behaviours are indistinguishable from someone with Asperger Syndrome. The key difference lies in the fact that he did not develop speech typically (could not communicate effectively) by the age of three. A historical differentiation which is essentially not important in the grand scheme of things.

Features of Asperger Syndrome include intelligence within the normal range and a profile that includes some or all of the following characteristics:

‘A qualitative impairment in social interaction:
* Failure to develop friendships that are appropriate to the child’s developmental level.
* Impaired use of non-verbal behaviour such as eye gaze, facial expression and body language to regulate a social interaction.
* Lack of social and emotional reciprocity and empathy.
* Impaired ability to identify social cues and conventions.

A qualitative impairment in subtle communication skills:
* Fluent speech but difficulties with conversation skills and a tendency to be pedantic, have an unusual prosody and to make a literal interpretation.

Restrictive Interests:
* The development of special interests that is unusual in their intensity and focus.
* Preference for routine and consistency.

The disorder can also include motor clumsiness and problems with handwriting and being hypersensitive to specific auditory and tactile experiences. There can also be problems with organisational and time management skills and explaining thoughts and ideas using speech.’

The above extract is from Dr Tony Attwood’s website which can be found here.

Dr Attwood is the author of ‘The Complete Guide to Asperger’s Syndrome’ which is widely considered the ‘bible’ of texts on the subject. If you can only afford one book on Asperger’s Syndrome, this is the one to buy.

If you’d rather surf the net, his website is the one to go to for all the information and links you could ask for on the subject. I and many others think Tony Attwood is the bees knees in this business. He lives and works in Brisbane, Queensland too! 🙂

Tony considers that people with Asperger Syndrome have a ‘different, not defective, way of thinking’.

I agree.

Further information can also be found at Asperger Services Australia

They are holding the Asperger Services Australia 2nd National Conference on the same weekend.


Note: this is a repost from last year with the dates changed of course 😉

Who are you?

Who are you?

Who are you?

The howling can be heard from the aisle, right behind,
perforation of prima donna eardrums has begun.

Child sprawling on the floor, red faced, chubby
arms drumming on the floor, Keith Moon style.

What’s wrong with that mother, assumes stiletto lady,
positioning her fish eggs and brie in the trolley,

next to her organic bananas, closely escaped
from Cyclone Yasi, fully embraced

by short term market forces,
but who’s counting lady.

Can you please control your child, she hisses
her exasperation at such an infringement

on her perfect, botoxed life, so smooth
and predictable, furrow free.

The mother growls, showing off his t-shirt
I’m autistic, what’s your excuse!


ps. Best to read while listening to the song (click on the Keith Moon link)