Our Troubles with Sleep: The Autism Files

 

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.

____________________

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

Search Engine Poetry

searching for answers, hoping you’re wrong

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

autism awareness blue

__________________________________________________________

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

An interesting and quite challenging challenge 😉

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

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

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

___________________________________________________________

The Eyes Have It: The Autism Files

 

The Eyes Have It: The Autism Files

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.

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 attended the AEIOU* at Moorooka in Brisbane 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.

My son used echolalia when he was younger. If we asked him a question he would immediately repeat the words.

Dad would say: ‘Hello Michael, how are you?’

Response from Michael: ‘Hello Michael, how are you?’

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 11 and appears most of the time to speak like other children his age. 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 (like in the paediatrician’s office) he will mumble and whisper while looking down at his feet, maybe flapping his hands a little. 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 his latest obsession.

But if Michael is calm, relaxed and in a happy environment his speech normalises and he is just like any other boy. Sometimes in the morning when I am still trying to wake up, I can hear Michael and his younger sister chatting away happily together about something they love (like  the latest tablet game) and he is at ease and speaking fluently in a completely typical manner.

Now that makes me smile 🙂

________________________________________________________________

* The AEIOU Foundation is an intensive early intervention organisation in Queensland for children 3-6 years old. They now have numerous centres throughout the State.

________________________________________________________________

Autism Heroes

Autism Heroes

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

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

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

It is beautifully illustrated by Marc Thomas and Jennifer Elder.

The book outlines the lives of:

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

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

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

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

_____________________________________________________________

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

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

Aspies Rock

Aspie’s Rock

People with Asperger Syndrome often call themselves aspies.

Aspies mostly call people who are not on the autism spectrum – neurotypicals. I nearly choked on my Weet-Bix when I heard that expression for the first time ;).

There is a theory (promulgated by aspies I should think) that people with Asperger’s Syndrome are higher up the evolutionary ladder than the rest of us. I don’t know about the scientific basis for that theory  🙂 but there are certainly many wonderful things about aspies.

Including the following:

Lateral thinkers (the inventors of the world)
Loyal
Enthusiastic
Focused
Genuinely goodhearted
Inventive
Original
Reliable
Unique sense of humour
Persistent (they will solve the problems of the world)
Determined (they will keep going when others give up)
Creative (some have outstanding artistic, musical and other talents)
Great attention to detail and can spot mistakes others may not notice (make great editors)
Super senses (wine connoisseurs and perfume makers of the world )
Strong sense of social justice (make good policemen, judges)
Direct, honest and speak their mind
Strive for perfection
Can list large amounts of factual information
Strong desire to seek knowledge (great on game shows and trivia nights)
Extremely knowledgeable on topics of interest (the trainspotters, collectors of the world)
Visual thinkers (make great surveyors, architects and engineers)
Exceptional long-term memory
Logical thinkers (the computer programmers of the world)
Great desire for fairness
Great respect for rules
Dedicated to special interests (many aspies reach the top of their chosen career because of their single minded dedication to an area of interest)

Unique

Endless potential

and the list goes on …

I know and love quite a few aspies and I think they rock!

________________________________________________________________

Note: This is a celebration of International Asperger Day 2012

International Asperger Day 2012

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

Happy 106th birthday Dr Hans Asperger for Saturday.

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

So here goes.

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

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

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

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

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

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

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

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

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

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

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

I agree.

Further information can also be found at Asperger Services Australia

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

________________________________________________________________________

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

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.

__________________________________

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.

Who are you?

Who are you?

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

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

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

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

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

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

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

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

________________________

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