‘the good, the bad and the ugly’

The Good News is:

The ducklings are getting bigger and this means life is a bit safer for them in their wanderings.

My little duckling is now 11 and is getting bigger (she is probably going to be the tallest in this family).

The not-so-little girl had a terrific birthday weekend with our house turned into the house of girls, loud noise and lots of partaying.

The school holidays are nearly upon us and I will be able to get stuck into some serious writing – this year has been a bit of a write-off in the writing and submitting arena, but I plan to make up for it in the summer lull. A manuscript I will finish by February next year – I hereby pledge – and if I do not finish it, you may chuck me in a bathtub of water filled with ice cubes! The non-fiction manuscript shall be the Autism Files and will be written under a pseudonym (suggestions for names are welcome, but will probably be ignored – hahaha). I obviously will be letting people know the pseudonym in due course (if the thing ever gets published).

I love the school holidays 🙂 Bring it on!

The Bad News is:

The not-so-little girl sprained her ankle during her birthday celebrations and has been hobbling around the house using crutches for much of the last week 😦 We’ve been to hospital and had x-rays and ultrasounds and lots of time in waiting rooms. The girl doesn’t like doctors much anymore – she refuses to acknowledge that they know anything 😉 and is loathe to follow their advice.

The ducklings are much bigger, we have too many of them and they can be quite messy (and no-one has come forth to take them off my hands even though I am begging all passing tradies and unsuspecting parents who drop in – ‘will you please take a ducky’ or ‘can I pay you in ducklings?’ 😉 One trady responded with ‘do they lay golden eggs’ Ha!

The Abbott Government is still in power and becoming increasingly embarrassing (but I won’t elaborate).

The Ugly is:

In the eye of the beholder (and if you call this alpaca ugly he will spit at you – so there) 🙂

hmm

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.

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).

An Iceberg: The Autism Files

therapy for proprioceptive issues (or just a big hug!)

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.

Sensory Issues: The Autism Files

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Sensory Issues

The sensory world is perceived differently by people who have Autism Spectrum Disorder (ASD).

People with ASD can be

• insensitive to sensory information (don’t feel enough) or are
• oversensitive to sensory information (feel too much).

One sense can be highly tuned while another is muted. Sometimes they find it hard to turn off the channels and too much information is coming through at the same time. Filtering out irrelevant information becomes difficult. Sometimes the channels are mixed.

It can become so overwhelming that they have a meltdown or temper tantrum.

Imagine living in a world where:

• the sound of a refrigerator humming (500 metres away) grates on your nerves.
• the smell of a person’s perfume is like bleach and makes you want to vomit.
• you are oblivious to physical pain, so that you are unaware of burning your hands when the tap water is too hot.
• you would rather starve than eat some foods because their texture or smell is unbearable (like being forced to eat meat that has been rotting for days).
• the frequency of light from a fluorescent tube is like a strobe light at a nightclub.
• you are not sure where your body ends and other objects begin.
• you can feel like you are dizzy and falling.
• it is painful to feel the light touch of a hand.

Every child with ASD is different and needs to be assessed as an individual. An Occupational Therapist can complete a sensory profile for children to map the problem areas. They will assess the outer senses (taste, touch, sight, sound, smell) and the inner senses (vestibular and proprioceptive). I hadn’t heard of those last two either!

The vestibular sense helps you keep your balance (it’s the thing that goes haywire when you are on a rocking boat for too long and you get seasick).

The proprioceptive sense lets you know where your body parts are in space (eg., an awareness that your arm is at your side or how close you are to furniture) and how much force is needed to do a task.

Parents can do their own sensory profile. List each of the senses and try to work out if your child is under-sensitive (actively avoids) or over-sensitive (seeks out) in that area. Try to step into the child’s body and ‘feel’ the world through their senses. Think of specific problem behaviours and consider whether a sensory issue may be the cause. Here is an example of a profile that I put together for my son Michael (3 years old)**:

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Senses	Sensitivity	Behaviour or Reaction
Taste	Under sensitive	Seeks out strong taste eg. vegemite, salty foods (now loves curry)
Touch	Over sensitive in head/neck area	Avoids being touched at back of neck and head, hates haircuts, getting hair wash, teeth cleaning. Insistent on wearing the same soft t-shirt every day.
Sound	Over sensitive	Covers ears in shopping centres and playgroup, meltdowns. Hates some sounds (eg., vacuum cleaner, hair dryer, hand dryer). Upset at birthday parties.
Smell	Over sensitive	Food refusal. Hates the smell of most fruit (phenolic smell – probably smells like nail polish to him) and has meltdowns when confronted with foods.
Sight	Over sensitive	Avoids or looks away from bright lights (especially fluorescent light), agitated, covers eyes. Difficulty finding things right in front of him.
Vestibular	Under-sensitive	Seeks out swinging, spinning, trampolining,
Proprioceptive	Under-sensitive or reduced awareness	Never sits straight, always leaning on things for support, falls over when support moved.Loves being supported from all sides (eg., heavy blanket, inside boxes, deep pressure hugs, wearing weighted vest). Always getting into small spaces.

I believe that dealing with sensory issues is very important for people with ASD and there is so much that can be done in this area to help.

Some strategies are simple (eg., earplugs, iPods, movement/exercises such as trampolining, dark sunglasses, Irlen lenses, removal of fluorescent lights, weighted vests, movement cushions, chew sticks, squidgy balls).

Some strategies are more complex (sensory integration therapy, auditory integration, behavioural optometry, desensitisation).

An Occupational Therapist can guide you in this area or you can find out more in the many books that are available.

** Leith Johnston, Michael’s speech pathologist at the Wesley Hospital in Brisbane, showed me how to do this type of sensory profile (there are also questionnaires that can be used). Thanks Leith.

The Eyes Have It: The Autism Files

Children with Autism Spectrum Disorder (ASD) have difficulty with eye contact. They 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 him and that looking sideways reduced the discomfort. It was interesting but I found that if there was a physical barrier between him and someone, such as a glass window or a mask, then he was quite happy to look directly at the person. 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 turning to the right but seeing clearly in front of him as he drove the car and never running 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 one being looked at will probably not even realise that they aren’t being looked in the eye. Everyone is happy.

References

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.

Desire for Sameness: The Autism Files

People with Autism Spectrum Disorder (ASD) like things to stay the same. And don’t I know it!

Michael’s diagnosis of Autism arrived shortly after his third birthday, but the signs were there shortly after birth. These included maniacal screaming fits at all times of the day and night, the obsessive systematic sorting of shoes and books (recorded on video if anyone needs verification), the lining up of tin cans, cars and trains, the absence of speech followed then by echolalia, the inability to wave or greet anyone, the spinning, the intense interest in fans, planes, wheels, water and light switches.

Another sign was the need for things to stay the same, including an intense dislike of any change to routines. I’ll give you an example which occurred when Michael was a toddler. I hate to admit it but I used to watch the soap opera Neighbours religiously. I have since ceased this irritating habit. Michael loved the theme song to Neighbours and when the song came on he would turn to the television, smiling broadly and sometimes clap his hands in glee.

The producers of Neighbours, in their wisdom, decided to modify the theme song. It was such a minor change that most people would not have noticed. But Michael noticed and he roared his displeasure, every night for at least a week. We were suitably amused by this display of loyalty to the original tune, completely oblivious to the underlying reason for his outrage.

Michael has always had a good ear for music and exceptional tastes that closely mirror my own. His little sister Tessa would disagree with that statement (see blog post on Bob Dylan). I am not a huge fan of rave music but I took a bit of liking to musician Fatboy Slim while undertaking research into Dance Parties for Queensland Health.  One day I made the mistake of playing the DJ’s album You’ve Come a Long Way, Baby in my car. Michael absolutely loved the song Funk Soul Brother. He insisted I play the tune in the car every trip for at least 6 months. Any refusal resulted in the volcanic eruption phenomenon.

Michael also insisted on wearing the same shirt every day to the AEIOU. It was a blue t-shirt with Nemo on the front. I would wash it every night to avoid the inevitable tantrum if it wasn’t available. It is very common for ASD children and adults to regularly wear the same type of clothes. The reasons are mainly to do with sensory/sensitivity issues (the need for soft well worn clothes that don’t feel itchy and scratchy), rigidity and the need for things to stay the same.

The need for sameness also impacts at the dinner table and many ASD children, including my son, have extreme rituals surrounding the types of food they will eat and it’s presentation. This can drive parents insane. I will discuss food in greater detail in further blogs.

Why the need for sameness?

I will end this blog with a quote from Sean Barron who has ASD:

I have no idea how many ways there are to deal with a level of fear so great that is hangs over you like a storm cloud. The three remedies I chose and that made the most sense to me in all areas of my life were repetition, repetition and repetition (Grandin and Barron 2005, p. 85)

Reference:

Grandin, T., and Barron, S. (2005) Unwritten Rules of Social Relationships: Decoding Social Mysteries Through the Unique Perspectives of Autism. Arlington, TX: Future Horizons.