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 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

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.

Echolalia: The Autism Files

Echolalia: The Autism Files


Children with autism have a lot of problems with communication.

Some children with autism can’t speak at all. When my son Michael attended the AEIOU*  many of the children could not speak. Some children will grow up and never speak a word their whole lives. They may learn how to communicate their needs with sign language, picture-exchange systems (PECs)  or assistive communication devices (e.g., computers that speak).

Some children with autism have language delays but develop speech as they grow older. Some children repeat words and phrases (TV commercials, movie scripts, parental commands) in a parrot-like fashion, with no real understanding of the meaning. This is called echolalia.

Michael used echolalia when he was younger. If we asked him a question he would immediately repeat the words. He had no understanding of what the words meant but he knew a response was required, so he would oblige us with our own words.

Like many children with autism he would watch his favourite videos (e.g., Nemo, Spot the Dog, The Wiggles) over and over again.  He would repeat large slabs of the story verbatim, to himself, when he was stressed.

Michael would repeat entire story books after I’d read them to him once or twice. He memorised every Hairy Maclary story book and he would ‘read’ the books aloud to himself while turning the pages at the correct spots. He couldn’t read at that age – he wasn’t even looking at the words. I don’t know how he did it!  This uncanny ability disappeared as he developed comprehension of speech.

As Michael got older and began to understand what the words meant he would use phrases from movies in the correct context when asked a question. Clever boy! If you hadn’t watched the movie you would never have picked up on what he was doing.  If you listened carefully you could tell he was exactly repeating a phrase from some show that he’d watched. He would use the correct accents and intonations. He is a great mimic.

When Michael was 3 he didn’t know how to call me mummy and maybe he didn’t know that was my name. I had heard him use the word as part of a repetitive script from some show but he never called out ‘mummy’ if he wanted something from me. He would just cry with frustration when his needs weren’t met. I became a mind reader.

One great day when he was 3 and a quarter he called me mummy.

Funny story:  We were at an indoor playground one day and Michael was calling out to me ‘mummy’. Then he noticed that some of the other children were using the word mummy. He was surprised, but had the solution, he called me ‘Gabrielle’. I explained that other kids also used the word mummy. It is very confusing if you think about it. Lucky he went back to calling me mummy as I was just getting used to it.

Michael is now 9 and appears most of the time to speak like other children his age (he can read at the level of a 10 year old). This would not have been possible without the help he has received from speech pathologists (thanks particularly to Leith Johnston).

He still has some communication issues. He still has difficulty processing speech and it helps if people slow down and speak clearly to him. When he is stressed or nervous he will mumble and whisper while looking down at his feet. He has difficulty with the reciprocity of speech  – the ability to take turns and share in conversation. He tends to speak about his special interests and he will interrupt conversations to ask questions about the solar system. But if Michael is calm, relaxed and in a happy environment his speech normalises and he is just like any other boy.

* AEIOU is an intensive early intervention centre in Queensland for children 3-6 years old

Obsessions and Special Interests – The Autism Files

Obsessions and Special Interests – The Autism Files

Let me tell you about obsessions!
Let me tell you about obsessions!

One of the most fascinating things about children and adults with Autism Spectrum Disorders (ASD) is their obsessions or special interests. My son has had numerous obsessions and preoccupations with objects since he was a toddler. It was these special interests that first alerted me to the possibility that he may have autism.

When he was about 2 years old he developed an intense interest in watching things that would spin. Particularly fans and the wheels on overturned bikes or toy trucks. Kids with ASD often don’t play with toys in the way other kids do. They investigate the separate components, often studying one part of a toy for hours on end. They can have restricted imaginative play.

He also loved to turn light switches on and off. Now some kids might do this a few times but he would go through the whole house with a stool, so he could reach the switch, and repeatedly turn it on and off. He wouldn’t stop until I made him and then would have a tantrum of massive proportions. Sometimes it was just easier to let him turn those switches on and off. My husband would come home from work to find the house lit up like a Christmas tree.

Once I took our son to the GP and he quickly disappeared into another room while I was distracted. He managed to find the main light switchboard and turned off the lights to the whole surgery. When you are obsessed with something, nothing gets in your way.
Why the attraction to light switches? I think it may have something to do with the predictability. You flick the switch, the light turns on. You flick it again, the light turns off. A very satisfying level of control if you are living in the chaotic world which is autism.

His next obsession was with moving water. He would constantly look for taps to turn on so he could watch the water flow. When he was nearly three we took our two children to Kingscliff, where my sister lived. We thought it was a bit too cold to go for a swim but our son thought otherwise so we let him play in the shallows. After a while we made him come out but he went ballistic with rage. We had to carry him screaming and shouting all the way back to the  house. It was during that week long holiday that I was sure that he had autism.

Why get obsessed with water? Well everyone knows how relaxing it can be to watch or listen to running water such as in a fountain or stream. Kids with ASD can be very stressed, much of the time. Obsessions generally develop from anxiety, unless of course it is an obsession to something like Bob Dylan music, which is just good taste. Obsessive Compulsive Disorder is categorised as an Anxiety Disorder in the psychiatric text books. If you deal with the anxiety the obsession will reduce or disappear. If you try to suppress an obsession, without dealing with the underlying anxiety, it will manifest in a different way. Beware the pop-up effect!

It is very difficult to reduce the anxiety that ASD kids experience and sometimes you just have to let them have their obsession, or let them obsess in the privacy of their bedroom or at home after school. Often therapists use the obsession as a reward as part of behaviour modification programs.

Another water related obsession, and one that was particularly funny, was his obsession with toilets. His father used to work as a plumber so it’s not that surprising. Wherever we went our son would go straight to the toilet to see what it looked like. He wouldn’t use it, he just wanted to have a good look at the workings of the toilet. His special education teacher would shake her head as he ran towards the bathroom to investigate. He did that every day for the entire school year, plus turning the taps on.

He would also get very upset if anything about the toilet changed. For instance, my friend started using a new clip-on toilet cleaner, and he didn’t like that at all. He also had a tantrum when his sister accidentally dropped a toilet roll into the toilet. When he went to the early intervention centre AEIOU they made him a book full of pictures of toilets. We still have that book.

His obsessions have become more sophisticated since the early years. At various stages he has had special interests in aeroplanes (Spitfires), rubbish trucks, rubbish bins, recycling and the solar system. I will write about these obsessions another time.

You’re Driving Me Up the Wall – The Autism Files

You’re Driving Me Up the Wall – The Autism Files

If you’ve  ever tried learning a foreign language you will know that idioms or figures of speech can make life a bit difficult. People with autism spectrum disorder (ASD) often feel like they have arrived in a foreign land, where the language and unwritten rules are confusing and frustrating. They are usually literal or concrete thinkers.

If you take a phrase which has a non-literal meaning, an idiom, such as ‘I’m going to hit the sack’ (meaning I’m going to bed) a person with ASD may look around for the bag you’re about to hit. They are constantly struggling with what they perceive as ridiculous and unnecessary turns of phrase.

It crosses my mind that they must be particularly pinged off with poets and creative writers such as myself, who find it very difficult to live without figurative speech – the use of metaphors, symbols, allusions and other essential tools of the craft. This is just one of many ironies I find myself confronted with as the mother of a boy with ASD.

You may think my title relates to how I feel sometimes about my son when not all goes to plan. In fact it is the reverse. I drive him up the wall with my particular way of speaking and my consistent inaccuracies. Michael has to frequently correct his poor mother, who is a fool for making so many mistakes of such an obvious nature. My most common mistake and one which happens on a daily basis relates to the clock. This is an example of concrete thinking.

I come from a family where expressions such as ‘that’s a bit slap dash but it’ll do’ and ‘near enough is good enough’ and ‘she’ll be right mate’ were commonly thrown around in a haphazard, yet humorous manner. This type of attitude is anathema to someone with ASD. When it came to saying what time it was, we were often found guilty of rounding off our minutes – shock, horror! To Michael’s consternation I still round off my minutes. A typical conversation goes like this:

Tessa says ‘What time is it mummy?’

I say ‘5.30 darling’

Michael responds with exasperation  ‘It’s not 5.30, it’s 5.28’.

Mum’s wrong again – silly woman!  I guess I’ll just have to ‘take it on the chin’ as I sure don’t want to ‘get a chip on my shoulder’.

Invisible Straitjacket – the Autism Files

Invisible Straitjacket – the Autism Files

Most people with autism spectrum disorder (ASD) don’t like changes in their routines. It is all about rules, regulations, and order. This can be because they experience the world as confusing and chaotic, and it is their way of clawing back some sense of control. They like the predictability that a routine provides. If you know the end of the story you can relax and pay more attention to what is going on in the middle. People with autism call ‘normal’ people Neurotypicals (nt’s). Nt’s generally don’t like to know the end of the story – we like a surprise. You could say that I am the opposite of a person with autism – I don’t like routine and rules and will change my schedule at the drop of a hat depending on my mood.

My son Michael was diagnosed with autism a couple of months after turning three. He  was lucky to soon get into the AEIOU – an intensive early intervention program in Brisbane for young children with autism. This was very stressful for him – a new place, new routine, and having to deal with other children with autism (they were often noisy and upset).He went there for 5 days a week and I drove him from the suburb of Auchenflower to Moorooka (a trip that took about 40 minutes). You have to think carefully about how you do things with ASD children because once you do it one way, you usually have to keep doing it that way. For Michael this applied to the route taken to and from the AEIOU. It was very important to Michael that I drive the same way every day. Any deviations would result in a tantrum or meltdown; a situation that can be very dangerous in a moving vehicle.

A couple of weeks after he started at the AEIOU I was driving Michael home from Moorooka. My daughter Tessa was two and she was also in the car. I wasn’t concentrating, it was raining heavily and my head was in the clouds, and I missed the usual turn-off on the freeway. What followed could be described as the beginning of World War 3 – Michael went ballistic. He screamed and carried on for the whole trip home. In the car he took his seatbelt off and was attacking me while I was driving. Being a responsible and thoughtful psychologist I immediately lost the plot and was screaming at him to stop. Poor Tessa didn’t know what the hell was happening and was crying. I kept driving as it was too dangerous to stop in the rain and on a freeway.

We finally got home safely, I don’t know how we did it, and Michael was still tantruming. God knows what the neighbours thought was happening. I got Tessa into the house and had to drag Michael screaming and kicking out of the car. Once inside I locked the doors because Michael was trying to get outside. He was punching and kicking the doors. I took Tessa upstairs – we often had to escape from Michael in those days – and left Michael to calm down by himself. This was a strategy that worked most of the time but not this time. He kept screaming so I carried him upstairs, put him on the sofa and wrapped him up in a doona and squeezed him hard. Like many children with ASD he likes the feeling of deep pressure on his body and it has a calming affect on him. Eventually he calmed down and stopped crying. The tantrum had lasted for about 3 hours. All because I drove the wrong way home!

PS.     Michael turns nine at the end of this month and is doing extremely well. He certainly doesn’t tantrum like that anymore. This is partly because of the wonderful work done by the AEIOU. Thank you to all the dedicated staff of the AEIOU and founder Dr James Morton. The photo is of a sunflower that Michael grew from seeds provided by his learning support teacher Kerri at Holy Family school  in Indooroopilly.