Desire for Sameness (The Autism Files)

October 25, 2016October 25, 2016 by Gabrielle Bryden ♥ 1 Comment

People with Autism Spectrum Disorder (ASD) often prefer things to stay the same.

And don’t I know it!

Our son’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 he 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. Our son 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 our son noticed and 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.

Our son has always had a good ear for music and exceptional tastes that closely mirror my own 😉. His little sister 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. Our son 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.

Our son 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.

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Hidden Curriculum: The Autism Files

June 26, 2015June 26, 2015 by Gabrielle Bryden ♥ 5 Comments

Hidden Curriculum: The Autism Files

We live in a world full of unwritten social rules that most people just seem to intuitively understand, without direct instruction. We generally know what behaviour is expected of us in different situations, and we have a good idea of the consequences of violating these social rules and behavioural expectations.

The number of rules is huge and varies across cultures, but here are some examples:

take turns speaking in a conversation;

don’t swear or tell off-coloured jokes to your teacher;

don’t tell someone their new outfit makes them look fat;

don’t stand too close to strangers,

don’t stare at strangers on public transport;

don’t hug someone you have just met;

follow your bosses instructions, even if you think he is an idiot and you have a better way of doing things.

These rules and expectations make up the hidden curriculum.

People with Autism Spectrum Disorder (ASD) often have great difficulty with social interactions and in deciphering the hidden curriculum. Having ASD can be like being a traveller in a country with a different language and customs – it is easy to put your foot in it and offend the locals.

Individuals on the spectrum, including those with Aspergers, often unwittingly break social and behavioural rules and they can suffer the consequences. They can appear rude, arrogant, and deliberately disrespectful.

Not understanding the hidden curriculum can result in difficulty making and maintaining friendships. They may become social outcasts and the target for bullies. Their safety, self esteem and ability to concentrate and learn at school may be compromised. They can become anxious and fatigued as a result of hyper-vigilance in a hostile environment.

They not only break social rules but are often unable to interpret the subtle signs and non-verbal cues (body language) emanating from the person they are offending.

For example, a person with Aspergers may monologue at length on a topic of special interest, such as trains or the benefits of rubbish collection, and be totally unaware that the recipient’s body language is indicating boredom (yawning, looking away) with the one-sided conversation. They will be surprised when the listener suddenly has quite enough and snaps at them to shut up. They will wonder what has gone wrong.

The person with ASD needs to explicitly discover the hidden curriculum through the help of therapists, teachers or books.

People who are involved with individuals on the spectrum need to be aware of these issues and to assist them in learning the rules for different situations. Direct instruction and the use of social stories and role playing activities can all be useful strategies. A book on understanding body language is also a great resource.

With help the individual with ASD can discover the hidden curriculum and develop skills to successfully navigate this social world we live in.

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Quick Tip (Novelty Bag): The Autism Files

May 19, 2015May 20, 2015 by Gabrielle Bryden ♥ 5 Comments

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 meltdown of epic proportions may occur. Read more ›

Desire for Sameness (The Autism Files)

March 14, 2015March 16, 2015 by Gabrielle Bryden ♥ 4 Comments

People with Autism Spectrum Disorder (ASD) like things to stay the same.

And don’t I know it!

Our son has always had a good ear for music and exceptional tastes that closely mirror my own. His little sister 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. Our son 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.

Why the need for sameness?

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

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.

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Our Troubles with Sleep: The Autism Files

June 27, 2014July 22, 2014 by Gabrielle Bryden ♥ 8 Comments

Our Troubles with Sleep: The Autism Files

Many children and adults with Autism Spectrum Disorders (ASD) have trouble with sleep (60-80%). They can have trouble getting to sleep, staying asleep and sleeping for a decent amount of time. They can have trouble with sleep-walking, sleep-talking, teeth-grinding, thrashing about, nightmares and night terrors. The list goes on.

My son, who was diagnosed with autism at the age of 3, has had trouble with sleeping all his life (he is now nearly 14). He did sleep well for the first two nights after he was born when we were both in hospital. But on the 3rd night (when my milk ‘came in’ as they say) the crying began and my baby would not sleep like the other newborns. The nurse kept coming into my hospital room to see what the problem was. All the other newborns were sleeping soundly; they seemed to only cry when they were hungry. After hours of disrupting the ward the nurse took my baby to the neonatal ward so that I could get some much needed sleep.

Those early days were a sign of what was to come. It’s not uncommon for parents to have problems establishing a good sleep pattern for their babies and toddlers, but eventually most children sleep through the night without waking their parents. This was not the case for our son. He had trouble sleeping for more than an hour during the day, without waking up crying, and he would wake several times during the night. Sometimes during the day when he was having a nap he would wake, not just crying, but screaming as if he was being murdered.

We took our son to a sleep clinic for babies and toddlers, as well as the paediatrician to rule out physical problems. The nurses in the sleep clinic helped us develop a good sleep routine; the paediatrician diagnosed reflux and prescribed some medication which helped settle the baby. But still the sleep disturbances continued.

I went to bed every night expecting to be jarred awake with the sound of crying or a scream. Without fail I would be woken and I would get out of bed, zombie-like, to see what was wrong. He would settle back to sleep after some strokes of his head and a few cuddles. It was like he wasn’t really awake at all during the whole episode.

My son’s sleep disturbances took a toll on our family – my husband and I and our young daughter. Being woken most nights is very disruptive to the sleep patterns of all members of the household (unless there is a very heavy sleeper who never gets woken by noise).

I was beyond tired in the daytime and eventually I also was diagnosed with a sleep disorder. I spent a night in a sleep laboratory hooked up to wires and electrodes which showed, (surprise, surprise) that I wasn’t getting enough deep sleep. The doctor looked carefully at the graph that tracked my sleep stages and raised his eyebrows, saying ‘this is very interesting’. But anyway, that is another story, possibly involving chickens and eggs, and other philosophical musings.

My son’s sleep did improve significantly when he was about 9 and our family savoured peaceful nights. We began to get enough sleep ourselves and the anxiety and feeling of dread associated with night-time began to fade away.

But then we had our son’s first school camp when he was twelve. He was away from home for 3 days and nights of outdoor ‘fun’ – you know the drill – ropes courses, raft building, swimming in a dam type thing for school children. He loved it and he hated it and his anxiety went through the roof for several months after the camp. Along with the anxiety came our enemy, sleep troubles. Yes, waking during the night returned and decided to stay for the duration.

Arrgghhhhhhh!

This time I’d had enough so we went to the paediatrician and got a prescription for Melatonin. Melatonin is a hormone found naturally in humans and other animals (made by the pineal gland in the brain) which regulates the internal body clock of sleep and wakefulness. Studies have shown that melatonin is effective in improving the quality of sleep in children with ASD and those with intellectual disabilities.

We give our son melatonin every night, about an hour before his bedtime. His sleep improved straight away with the use of melatonin and his mood improved during the day (we assume as a consequence of getting enough sleep). He still occasionally shouts out or talks loudly in his sleep – about an hour after he falls asleep – and I go into his room to see if he is alright while settling him back to sleep. Sometimes he yells out and comes hurtling out of his room in great distress (sleep walking). He rarely remembers these episodes of what could be called sleep terrors. But, these days he nearly always settles by the time I go to bed at around 10.30pm and he sleeps soundly for the rest of the night. On those occasions when we have run out of melatonin his sleep problems have returned.

This is my families experience with a child who has ASD and problems with sleep. Other families have it much worse (eg. children who only sleep a couple of hours a night) and others have ASD children who have only minor sleep problems.

The reasons for the sleep disturbances vary. They can include sensory issues, melatonin regulation by the body, anxiety, stress, hyper-vigilance, hyper-activity, cognitive overload, and other factors.

The strategies used to treat the sleep disturbances also vary and parents may need to trial different techniques and have huge amounts of patience before they get any success. Some beneficial strategies have included the use of weighted blankets for children with proprioceptive issues, relaxation exercises and music for those with high levels of anxiety, a good predictable sleep routine, melatonin and other medications. I will discuss these issues further in a separate article.

One thing we know for sure is that good quality sleep is essential for well-being in all humans and increases the ability to concentrate, to feel relaxed and to be mentally alert.

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Note: In Australia you need a prescription for Melatonin but not in the USA. Beware of products that mention melatonin in the name but which do not contain the active ingredient (eg., homeopathic melatonin).

Note: Photo by Lisa Crook

The Autism Files: Not all programs are equal

February 12, 2014 by Gabrielle Bryden ♥ 8 Comments

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.

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The Autism Files: Where are all the Services?

February 10, 2014 by Gabrielle Bryden ♥ 9 Comments

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

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Food Wars: The Autism Files

December 4, 2013January 24, 2014 by Gabrielle Bryden ♥ 10 Comments

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.

Resource:

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.

International Asperger’s Day 2013

February 18, 2013February 18, 2013 by Gabrielle Bryden ♥ 25 Comments

Today is International Asperger’s Day 2013.

Happy 107th birthday Dr Hans Asperger.

International Asperger’s Day is a day to celebrate the good doctor’s birthday on the 18th of February and to increase awareness of Asperger’s Syndrome.

Dr Hans Asperger was an Austrian paediatrician who in 1944 described the key features of Asperger’s 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 12 year old son has high functioning autism but his behaviours are indistinguishable from someone with Asperger’s 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’s 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’s Syndrome have a ‘different, not defective, way of thinking’.

I agree.

Further support and information can be found through the volunteer, not-for-profit, organisation Asperger Services Australia.

I will sign off with the self-affirmation pledge for those with Asperger Syndrome by Liane Holliday Willey:

I am not defective. I am different.
I will not sacrifice my self-worth for peer acceptance.
I am a good and interesting person.
I will take pride in myself.
I am capable of getting along with society.
I will ask for help when I need it.
I am a person who is worthy of others’ respect and acceptance.
I will find a career interest that is well suited to my abilities and interests.
I will be patient with those who need time to understand me.
I am never going to give up on myself.
I will accept myself for who I am.

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Reference:

Willey, L.H. (2001) Asperger Syndrome in the Family: Redefining Normal. London: Jessica Kingsley Publishers.

Note: If this sounds familiar it means you have been reading my blog for some time and would be right up to date with all things aspergers ;)! I was too busy today (collating all of the boy’s ASD assessments and reports for his new school) to be more original than an edited repost. Thanks for sticking with me folks.

The Eyes Have It: The Autism Files

June 22, 2012March 20, 2016 by Gabrielle Bryden ♥ 27 Comments

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.

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.