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.

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

Quick Tip (Novelty Bag): The Autism Files

Photo by Michael Bryden

Quick Tip (Novelty Bag): The Autism Files

What do you do when the queue is too long and your child is getting agitated?

What do you do when there is a traffic jam and your child is in the back seat, squirming?

These are situations that can make all parents uneasy, but if you are the parent of a child with an Autism Spectrum Disorder (ASD) it can make your blood pressure rise as you wonder if the situation will get out of hand.

When agitation and stress increases in a child with ASD, you need to put a break in the circuit, otherwise a tantrum of epic proportions may occur.

One circuit breaker that parents have found useful is to produce a bag of sensory toys and items when their child is showing signs of greater than usual stress. It is best if this bag is only brought out on special occasions (a novelty bag for emergencies) for maximum effect. You can keep a bag hidden in the car, have a small collection in your handbag, and take a bag with you to waiting rooms.

ASD children often seek out sensory stimulation (eg. the feel of squishy balls or soft material, things that flash, things that spin, things that light up, things to chew or suck).

When you have identified your own child’s sensory needs via a sensory profile, you can tailor the sensory toys to suit them. When you observe the warning signs of too much stress, you can bring out the novelty bag and provide them with a sensory distraction.

My son with ASD loves to chew on things, especially when stressed. We have evidence of his excessive chewing all over the place (t-shirts with large holes, erasers with little pieces missing, a bunk bed with hundreds of small marks that look like a rat has been chewing the wood).

My sensory bag included such things as rubber chew sticks, squeeze balls,, and even chewing gum, and lollipops. I found that sucking on a lollipop was often the only way he could get through some aversive experiences, such as the hairdressers.

He also loved all things that spin, so the kit included toys with spinning lights and parts.

An Occupational Therapist can help you with developing a sensory profile and recommending sensory toys. There are also many internet sites that sell sensory toys.

Good luck.

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Note: There are other ways to distract/divert children’s attention with things such as Ipads and computer games, but I will talk about that in another post.

Visual schedules are important: The Autism Files

visual schedule (on the far right)

When a child is diagnosed with Autism Spectrum Disorder (ASD), therapists often suggest that parents develop a visual schedule. I thought this seemed a little strange when I was told to do it by my son’s speech pathologist, but went along for the ride ;). It turns out to be one of the most effective strategies you can use with ASD children.

What is a visual schedule?

A visual schedule is a series of pictures arranged on a board (or in a notebook, on a computer, or other device) that show the child what will be happening during a specific time period (usually a day).

Why are they used?

ASD children often experience the world as chaotic and confusing and subsequently have a greater need for structure and predictability in their life. The visual schedule can assist the child in understanding what is planned for the day or week and therefore provide this structure.

ASD children (and adults) often prefer the visual over auditory and the use of pictures helps them realise what will be happening next (in the absence of the ability to read or comprehend speech).

How do you make one?

There are many ways to make a visual schedule.

When my son needed a visual schedule around the age of three, I glued felt onto a wooden board and divided the board into the 7 days of the week (using coloured strips to divide the week and the name of the days at the top of each section). I am not a crafty person so this was no mean feat 🙂

7-day visual schedule with one day showing main activities via pictures

Some people prefer to have one day, instead of the whole week. Some will even have a shedules for part of the day (eg., at kindergarten).

I used clipart from the internet and photos (laminated and with a Velcro dot on the back of each picture) and anything else I could get my hands on, for use on the felt board. The picture is easily placed on the schedule using the velcro backing. Note: a laminator was a good investment, back then, and most of the parents from the early intervention centre invested in one ;).

I would place the pictures on the schedule in the morning (or night before when my son was asleep) so that he could see what was happening on that one day (I would leave the other 6 days blank except for a picture of kindergarten or home).

When the activity (eg., swimming lesson, lunch) is finished, the laminated picture can be removed (or crossed out with a laminated X). Most ASD children find this process of indicating the completion of an activity, very satisfying.

There are endless ways of making visual schedules (use your imagination). Some use laminated strips with velcro dots attached to a desk (at school), or on the board. Today the Ipad is being used for similar tasks with great success for ASD children.

How long do you use a visual schedule?

This depends on the child and the severity of the ASD.

My son now uses calendars, diaries and lists of activities (as he can now read and write) to assist in managing his day. We still use some visual schedules combined with text for important routines including 1. What to do before school in the morning; and 2. What to do before going to bed.

The internet is also a great source of information for finding clipart, images, and ways to make visual schedules.

Good luck!

ps. I am a great believer that schools should include visual schedules for all children, as everyone can benefit from schedules, especially young children.

Guest post on Spirit of Autism

One of my articles on Autism Spectrum Disorder ‘An Iceberg: The Autism Files’ has appeared over at Debi Taylor’s blog Spirit of Autism. Click here to have a look see.

Debi blogs from Atlanta, USA and she describes Spirit Of Autism as offering ‘practical tips, resources, tools and strategies to teach you how to find clarity and balance to help your child step into their best self!’

‘Debi Taylor is an Autism Specialist with over 3,500 hours of research and implementation of real-life tools and solutions for children and families affected by Autism. Through her experience and dedication to her own child, she created a transformational system for children on the Autism Spectrum that covers fitness & nutrition, tips and tools for identifying sensory vs. behavior, coping strategies, calming techniques, Autism safety, emotional support for parents and more’

Thanks Debi 🙂

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!

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

Surviving the Rage: The Autism Files

Surviving the Rage: The Autism Files

Speaking of rage, my son (diagnosed with autism at age 3) has had his fair share of tantrums and meltdowns (though he is pretty good now at age 10 and when angry will go to his room, mumbling and abusing everyone under his breath, to calm down on his own).

The boy was a screamer, fighter and a biter!

I remember one time when my son had lost the plot and started attacking me in the kitchen. He lifted up my shirt and bit me hard on the bare skin of my stomach. I asked one of his therapists why he did that, and she said ‘probably to get a better grip’ – haha!

I can laugh about it now, but there is something particularly upsetting about being bitten (worse than being hit). I am not sure why this is so – maybe it relates back to primal fears of being attacked and bitten by wild animals.

It is very easy, when your child is having a meltdown, to join in the fracas.  Emotions are high and it is difficult to think straight when chaos is having a field day.  Losing the plot was my forte, as I have a bit of a short fuse myself, and I would manage to make a bad situation much worse by yelling and carrying on. I needed a bit of time-out 😉

Over the years it slowly dawned on me that I must disengage from the battle. I was the grown-up and I must not take it personally. My child was biting/hitting/screaming at me, but this didn’t mean he hated me. He had lost control of his emotions and was using all weapons at his disposal. Fair enough!

Surviving the Rage

Remember, it is a bit too late once the rage is raging – better to intervene during the rumbling stage. But that is easier said than done, and if you have a child with Autism Spectrum Disorder (ASD), you will inevitably get an uncontrollable rage.

Safety first

The child in a rage has lost control and must be kept safe (and those around him/her must be kept safe). If possible, remove dangerous items (and things that might get broken). Remove all other people from the area, particularly at school (except the one or two people supervising the child) – this is not a spectator sport!

Keep calm

This is the bit I had trouble with 😉

Do not make threats, yell and try to dominate or tower over the person in a rage. This will inflame the situation, and make everyone feel worse. Reduce verbal communication (or stop talking altogether).

Disengage emotionally

Yeah sure 😉

The rage is about an incident or situation – not you personally. Also it is a good idea not to listen to any horrible things that they might say about you (you know the type of thing – ‘I hate you mummy so much, you are the most horrible mummy in the world, no, the whole universe and beyond …’). Try to disengage emotionally and think about something else, if possible.

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Note: If your child has a rapid increase in rage episodes or puts him or herself in dangerous situations, seek out professional assistance from someone who has expertise in ASD.

Stop the Rage: The Autism Files

It is common to hear parents describe a child’s meltdown or tantrum as ‘coming out of nowhere’. Indeed, outbursts of anger (even in adults) can seem to materialise from the ether. But of course, this is far from the reality. There are always signs or cues that the volcano is about to erupt.

Children and adults with Autism Spectrum Disorder (ASD) often have difficulty with anger – difficulty in recognising that they feel angry and inability to manage or deal with these feelings. Myles and Southwick* have described the Rage Cycle for people with ASD. They describe what happens when the person with ASD and those around him, fail to recognise the build-up of anger.

The three stages of the Rage Cycle include rumbling, rage and recovery.

Rumbling

It is important that parents and caregivers of children with ASD pick up on the cues that anger is building (the volcanologist monitors the mountain).

What are these cues?

There may be an increase in stereotypical behaviour and stimming, for example, fidgeting, hand flapping, rocking, grimacing, excessive chewing, tapping and other repetitive behaviours.

There may be an increase in verbal behaviours such as strange vocalisations or nonsense noises, changes in volume of vocalisations (mumbling, speaking under the breath or to themselves), swearing, making threats.

An increase in movement, such as walking in circles (circuits), pacing, or leaving the room/house to get away.

Rage

When the volcano erupts there is little that can be done to reduce the fallout. The child or adult has lost control, emotionally and physically.

The noise and destruction may include screaming, explosive impulsiveness, biting, hitting, kicking, destruction of property, and self-injury (e.g., head banging).

Recovery

The eruption may be followed by crying, sleeping, denial of rage, withdrawal into fantasy, and apologising.

What can be done to avoid the Rage?

The key point to the Rage Cycle is to intervene during the Rumbling stage. It is too late during the Rage stage (and during that stage you need to focus on safety – of everyone involved). These are some of the things you can do to prevent the Rage stage:

Walk (don’t talk)

Children with ASD (especially when stressed or getting angry) have difficulty with listening and processing words – LESS TALKING PLEASE! Let them walk to calm down. Make sure someone is accompanying them. Let them talk all they want to 🙂

Chill out zone

It is a good idea to have a space or room with low sensory stimulation where school children with ASD can take their work, when they need to calm down, cool down or chill-out.

Non-judgemental removal

Remove the child from the situation (in a positive manner) by involving them in a task such as delivering a note to a teacher in another classroom or giving something to Dad in the garage. They will feel important and the Rage Cycle is being interrupted or short circuited, as their attention is diverted to something more enjoyable.

Divert attention

It is often possible to divert the child’s attention from what is bothering them by producing interesting toys (eg., sensory toys like squeeze balls, toys that light up) – it is useful to keep a bag of special toys, that the child does not normally play with, in the car or in your bag, for emergency situations, such as shopping centres or doctors waiting rooms. A discussion of special interests could also be a useful diversionary tactic for the older child with Aspergers.

Schedules and routine

Never underestimate the importance of schedules and routines for the child with ASD. The use of such things as  visual schedules, diaries, calendars, lists and charts in their daily life provides certainty, predictability and a sense of security that goes a long way to reducing the anxiety that can feed into the Rage Cycle. Give plenty of warning to the child of any changes to the routine.

What else!

These are just some ideas on how to interrupt the Rage Cycle. As the child gets older it is important that they learn to monitor their own level of anger and have their own strategies available to manage this anger.

A simple technique is to have a visual 10-point scale of anger (where 10 is the angriest) which the child can use to identify their level of anger. This is accompanied by a list of effective anger-reducing strategies that the child has identified (eg., punch boxing bag, take a bath, play music, go for a hike, swim, get a massage, meditate, drink herbal tea, read a book).

When the child identifies that their anger is climbing up the scale (say 6­ to 7) they look at their list and pick an activity to reduce the anger. The list can be kept on a small card in their pocket or school bag or wallet for ease of access. This sounds simplistic, but that is the key – when a person is angry they stop thinking clearly and need simple, visual cues to assist them in managing their feelings.

There are a huge variety of workbooks on the subject of anger management – many written for children to read on their own or with an adult (I can assist with book lists if wanted).

Helping a child get in control of anger is one of the most important things a parent can do.

Best to get in early!

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* Brenda Smith Myles  & Jack Southwick (1999). Asperger Syndrome and Difficult Moments: Practical Solutions for Tantrums, Rage and Meltdowns. (Autism Asperger Publishing Company).

Early Warning Signs: The Autism Files

Early Warning Signs: The Autism Files

If your child has Autism Spectrum Disorder (ASD) early diagnosis is very important.

Why is it important?

Because intensive early intervention is effective for young children with ASD (the window of opportunity is approximately the ages of 2 to 6) and the earlier the diagnosis and treatment, the better the prognosis*.

My son was diagnosed with autism soon after his third birthday but when I look back, the signs were there shortly after birth. He was a difficult baby and a difficult child – beautiful and wonderful, but difficult. The nurses in the maternity ward could not believe the noise a 3 day old baby could make (crying for hours while most of the other newborns were peacefully sleeping).  Most babies settle after a feed – Michael had difficulty feeding and often cried more after a feed.

Doctors blamed it all on GORD (gastro-oesophageal reflux disease) or heartburn and to some extent they were right – Michael did have reflux and there was some improvement when medication was introduced for GORD. But we still had to deal with regular screaming fits, often a couple of hours after he had fallen asleep. Michael would wake up crying most nights in his first 9 years (he is now 10) – he would wake up scared and inconsolable, often sweating and heart racing.

Michael did not respond to his name until he was nearly 4- it was as if he was deaf (and we did get his hearing tested, just in case). People would wave at my son, but he would never wave back (not until about the age of 5). He would not point or make meaningful gestures or ask for things (the way he got my attention was by crying or screaming).

Michael had an excellent memory and an extensive vocabulary from a young age, but there was almost no communication. He would repeat huge chunks of speech from books, videos, and people, but had no idea what it meant.

He had a very strange way of playing. He would line up toys, categorise toys, spin wheels and parts of toys for long periods of time as if studying the mechanism of the toy. He would spin around on chairs or on his feet and laugh hysterically. He was obsessed with spinning fans, switching lights on and off over and over again, running taps, flushing toilets and other forms of moving water.

His behaviour would become increasingly odd when he was stressed (a new place, an overcrowded shopping centre, birthday parties etc.). We visited a friend one day (somewhere he had never been before) and after half an hour Michael proceeded to walk backwards through the whole house. He would do running circuits around our house when stressed. Repetition was Michael’s best friend.

Michael was an extremely limited and fussy eater with rigid rules (sandwich must be cut exactly in half, no foods must touch each other, all foods eaten separately – sandwiches would be carefully dismantled and eaten bit by bit, very limited number and types of foods, eating  the same foods over and over for years). Deviations from the food rules would result in tantrums from hell and numerous circuits of the house.

Michael would avoid looking people in the eye and often used his peripheral vision (would ride a bike or run while holding his head on a right angle to his body – he never ran into anything)!

Michael hated places that create sensory overload, especially shopping centres where there is too much noise, too many smells, too many people, too many things! Next time you are shopping and standing at the checkout, take stock of all the sensory stuff happening at the counter (ringing bells, smell of food mixed with cleaning products, pushy people with body odour or too much perfume, flicking fluorescent lights etc. ) and multiply what you experience by a factor of 10 to 20, and that will go a small way to your understanding of what a person with ASD has to put up with when going out.

Michael had other sensory issues. He was sensitive to sounds (vacuum cleaners, hand driers, unexpected noises), smells, light touch (he loved heavy touch and big hugs). We had huge problems with things like washing hair, cutting hair, cleaning teeth.

Michael also had a range of physical issues that are signs of ASD. He had a rather large head circumference (and research has shown that accelerated head growth is an indicator of autism) and he had issues with balance and coordination that became increasingly obvious after assessment by occupational therapists.

I didn’t think Michael had autism. My mother asked me to watch a show about autism on the television when Michael was two. I wondered why she wanted me to watch it. Mum knew a lot about children, having four of her own and having also worked with children and orphans as a mother-craft nurse. She knew that something wasn’t quite right.

As a psychologist I had briefly studied autism at University (about 10 minutes in a Developmental Psychology lecture) and the presentation was all about severely autistic boys who couldn’t even hug their parents (in fact most autistic children are not averse to a hug). I did not relate that lecture to my child one little bit.

Parents who are concerned about their child’s development should consult with their GP or paediatrician. Many of the early warning signs for ASD are not specific to ASD and a comprehensive assessment is required to identify any problems.

Parents (and other family members) know their children better than anyone else. If you feel something is not quite right, than you should follow your instincts and seek out assistance.  It should be noted that doctors and paediatricians do not get it right all the time.

My boy’s paediatrician thought three years old was too young for a diagnosis (but best practice says diagnoses can and should be made much earlier). I had to really convince Michael’s doctors that there was an issue to be addressed.

Michal received intensive early intervention at the AEIOU and is now doing very well, attending a mainstream school and doing above average academically. He has difficulty with social issues but continues to improve.

Follow this link for more information on the early signs of autism.

* Early intervention is optimal, but improvements can also be made in the later years (it is never too late to intervene).

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.

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Written for this Friday’s International Asperger’s Day 2011

Dr James Morton – my hero

Dr James Morton – my hero

I don’t have many heroes or heroines. People are just people and everyone is flawed – why elevate someone to that level?  But I do make an exception for some rare types who just blow me away with their ability to achieve great things in the face of incredible barriers. Dr James Morton is that type of person.

One individual, Dr James Morton, has done more for young children with autism in Queensland, Australia than entire Government Departments have ever done.

When my son Michael was diagnosed with autism at the age of three, there were practically no early intervention services in a social setting for young children with autism throughout Queensland.

If you lived in Brisbane (the capital city of the Queensland and located in the Southeast corner of this large State) you might have been able to access some services but these were scarce, did not have enough hours and had long waiting lists.

If you were well off financially and had a lot of nous than you could set up your own in-house program (without a social component). If you lived in regional and rural Queensland – tough luck!

Early intensive intervention (20 to 40 hours a week for 2 years) based on best practice guidelines, is the number one research-based strategy to improve the future for young children with autism.

The age between two and five years is a critical window of opportunity for children with autism and profound changes can be made if an intensive early intervention program is undertaken.

James Morton established the AEIOU (autism early intervention outcomes unit) fortuitously for us, shortly after Michael’s diagnosis and my son was one of the first groups of children to access the program. And what a program it was!  Michael had access to one-on-one intervention from a great team including speech pathologists, occupational therapist, and early childhood teachers and aides. There was also a wonderful sensory room and a well equipped outside playground.

Michael improved dramatically while attending the AEIOU, learning to socialise, communicate, and developing the myriad of other skills needed to enter the formal school system. He gained confidence and was able to be mainstreamed at school. He continues to improve every year and doesn’t stand out a great deal from the other kids. He is sociable, humorous, kind hearted, speaks well and does above-average in his school work. He is very interested in rubbish collection!

Dr James Morton, a respected child cancer specialist, used $650,000 of his own money to set up the AEIOU. He did this because he and his wife Louise also had a child with autism and found it almost impossible to access intensive, early intervention in a social setting.

That was in 2004.

Today in 2010 James Morton has established 6 centres, including centres in Toowoomba and Townsville and a rural program (piloted in Emerald).

This is why James Morton was State Finalist in the Qld Australian of the Year 2010.

This is why he was this years Ernst & Young Entrepreneur of The Year.  Here is a quote from their website:

‘Determined to make AEIOU available to all autistic children, including those from low income families, James developed the 10-40-600 fundraising strategy. Currently, there is a $10,000 funding gap for the $40,000 it takes to place a child at an AEIOU centre for 12 months. James sought individual and corporate donations to close the gap. He argued that, by assisting these children to communicate, engage with others and become integrated into their community, the contribution provides an average lifetime cost saving of $600,000 per year for each year the child participates in an AEIOU program. Convinced by his argument, 40 sponsors signed in the first year.

James’ funding strategy has enabled rapid expansion, with AEIOU opening six regional centres across Queensland in the past five years, including a rural program. By 2012, the program will be providing full-time specialist care to 50% of children with autism in Queensland.

In the next five years, James plans to support children with autism from diagnosis through childcare, school and ultimately into the work force and to replicate his model in NSW.’

That is why he is my hero.

Thanks James for all your wonderful work and advocacy for children without a voice.