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).

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.

________________________________

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.

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).

Today is International Asperger’s Day!

Happy International Asperger’s Day everyone 🙂

I’ve been blogging about Asperger’s Syndrome for the past few days and today, the 18th February is the day.

My son is very excited that he has a day dedictated to him. He said to me ‘at last I am getting the respect I deserve’ – haha.

He is adorable and will be getting some treats today – we are going out for dinner and he will get a whole hour on the computer (up from his usual 1/2 hour). His sister is a little jealous 😉

Today I am posting a video of the wonderful Temple Grandin, an inspirational women with Asperger’s Syndrome who lectures all over the world (and had a movie made about her life). She is an expert on the design of cattle management systems as well as autism. This video is a must see. She explains things in a way that is so much better than reading about this stuff.

____________________________________

Written for International Asperger’s Day 2011 (18th February)

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.

_________________________________________

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

Aspie’s Rock

Photograph by Tessa Bryden

Aspie’s Rock

People with Asperger’s 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 – haha.

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.

These may include some of 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!

__________________________________________

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

International Asperger’s Day 2011

This Friday the 18th of February, 2011 is International Asperger’s Day.

Happy 105th birthday Dr Hans Asperger for Friday. I’m getting in early as I’d like to do a couple more posts on Asperger’s in the next few days.

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

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 10 year old son has high functioning autism but his behaviours are indistinguishable from someone with Aspergers 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’s Services Australia.

Quick Tip (transitioning): The Autism Files

Mum, stop mumbling!

Quick Tip (Transitioning): Autism Files

Children and adults with Autism Spectrum Disorder (ASD) often have difficulty transitioning from one activity to another.

When my son Michael was a toddler (before his diagnosis with autism at age 3) he would tantrum when I tried to finish one activity and move him to another.

Example:

One day he was playing in a kiddies playground and when I wanted to leave, he refused. I called his name several times with no response. I came inside the play area and told him we had to leave – no response. I tried to hold his hand and walk him out – he scuttled off, crying, and scurried high up into the slippery slide tube. After about fifteen minutes of getting nowhere fast, I had to climb up into the play equipment and physically carry him, kicking, screaming and crying, out of the playground, on my shoulders. It was not a good look.

What was the problem?

1.  At first he was so engrossed in playing that he was not even listening to me speak (he couldn’t hear me).
2.  When he did hear me, he didn’t understand the words I was using (my sentences were too complex);
3.  I hadn’t given him any warning that we would be leaving soon.
4.  I had not provided a motivation for shifting to the new activity.

What to do?

• Keep your speech simple with young ASD children.

• Five minutes before the activity needs to end, give a simple warning. Make sure the child is listening by going right up to them and getting down to their level and speak slowly, clearly and in very few words eg. ‘Michael, going soon’. Use sign language if you need to.

• Give another warning 2 minutes before the finish.

• When it is time to leave, approach the child again, look at them and say ‘finished’ (preferably signing with hand and thumb).

• Provide a fun activity or extra special toy (that is only used on special occasions, such as in the car) as a reward for transitioning without tantrums.

• You can use the first/then strategy (say to the child: first car, then special activity/toy). This is a clear, simple verbal instruction.

This approach is a guideline only and can be adapted to your circumstances. Wishing you happier transitions.

 

 

Hidden Curriculum: The Autism Files

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 is 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 Asperger’s, often unwittingly break social and behavioural rules and they 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 Asperger’s 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 total 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.