Managing Autism - A Personal View

“I need a bit of a kick start.”

“Give me a break.”

“I nearly jumped out of my skin!”

Heard these types of phrases before?  Most of us have, and many of us use these or other similar phrases at times.

People often use words (or language) to imply a meaning that is vastly different to the words literal meaning.  Most of us understand these different meanings and can put the words into context, but to a person with an autism spectrum disorder, this ‘understanding’ can be very difficult.

This is because it is common for people with autism to understand and use language purely in its ‘literal’ sense.

With reference to the 3 phrases above, then, a person with autism may be surprised that you need ‘kicking’ in order to begin something.  And they may be confused that you want to be given something broken.  And they definitely wouldn’t understand how your body could jump out of your skin (and jump back in again - how is this possible?!?).

And for a person with autism, imagine how strange and scary the world would seem if you were brought up to love and care for people, and taught that hurting and killing people is bad, to one day have your mother (who was having a bad day) say, “If you touch that I’ll shoot you!” (When you went to pick up her precious antique china vase that had been in the family for generations.)

Language can be complex, and to many people with autism it can be a struggle.  So when communicating with a person who has autism, choose your words carefully - and if you are receiving blank stares in response to your language, try rephrasing your words or explaining what you mean.

Being understanding and thoughtful with the language you use can go a long way to helping a person with autism feel comfortable in their surroundings and in the social environment.

We came across this poem that seemed to fit our lives so well:

We came across this poem written by Wendy Lawson (http://mugsy.org/wendy), and it describes so well the struggle autistic people go through in regard to change.

Change, change and more change,
Of context, place and time.
Why is it that life’s transient stage,
Plays havoc with my mind?

You said, “We’ll go to McDonald’s”
But this was just a thought.
I was set for hours,
But the plan then came to naught.

My tears and confused frustration,
At plans that do not appear,
Are painful beyond recognition,
And push me deeper into fear.

How can life be so determined?
How can change be so complete?
With continuity there is no end,
Security and trust are sweet.

So, who said that change would not hurt me?
Who said my ‘being’ could not be safe?
Change said, “You need continuity”
In order to find your place.

For change makes all things different,
They no longer are the same.
What was it that you really meant?
All I feel is the pain.

It really puts things into perspective!

A huge hurdle that we have been working with Jack to overcome is that of using aggression and violence to cope with whatever he faces in day to day life.  With Jack, anything from having a toy taken from him, to having a change take place in his routine that he wasn’t prepared for, to meeting a stranger (or even a familiar person that he wasn’t expecting) can evoke some sort of aggressive behaviour.

When Jack was a small child aggressive outbursts were easier to deal with and brush off as simple tantrums that all kids have.  As he has grown older, the aggressive outbursts are much harder to deal with and a lot less simple to ignore.  A child of nearly 6 years of age can cause an incredible amount of damage and hurt when upset and when violence is the only way he can manage to express himself.

As mentioned in an earlier post, roleplaying has been a strategy that we have used for a long time to practice alternative responses to aggression and violence.  Picture cards are also something that we use regularly.

Recently we have been trying to teach Jack to “tell a grown up” when he feels angry, scared and frustrated (words that we have used with him to describe the feelings he has that make his body feel yucky).  We are hoping that when he begins school next year, whatever about anything else he does, he will at least be able to ‘use words’ to seek help when he feels like his body is about to explode with anger and aggression.  (And hopefully avoid some major fist fights and injured children and property in the process.)

Elissa usually posts on our blog, but today it’s ‘Dad’s’ view! 

“Dad, is it a stay at home day today?”

And so the day begins…

Yes, this is what I wake up to most mornings.  The same question, come rain, hail or shine - and the reason why Jack asks?  Well, regardless of my answer to this question it is always followed by the next:

“Dad, can you play Playstation with me?”

I live with a Playstation junkie.

For a long time Elissa refused to have any sort of computer / video games in the house.  She was a bit of a ‘purest’ so to speak, and believed that kids should be outside building cubby houses and digging in the sandpit.  Well, she still believes in her ideal, but when her parents presented Jack with the Playstation she finally caved in and agreed to allow it in to the house.

Since then, Jack hasn’t looked back (and Elissa even admits that at times it is her saviour in that it gives her half an hour of total peace and quiet when she needs it due to the fact that when Jack sits in front of it he is totally consumed by it).  He only has 3 games, but he knows them like the back of his hand, and in typical Aspie style, plays them over and over and over and over…….. well, you get the picture.

Unfortunately though, in the beginning, when Playstation was new to the house, I kind of ‘made a rod for my back’ so to speak.  Jack would become frustrated with the games because he couldn’t play them perfectly (yes, those Aspie traits again) and so I would sit with him in an effort to calm him down and help him work through the steps.  The problem now is that Jack associates the Playstation with ‘Dad sitting next to me’.  And that doesn’t neccesarily mean playing, but more commentating and ‘fixing’ his mistakes.

I should mention that when Jack asks the infamous ’Playstation’ question he asks it in multiples of about a dozen at a time.  No matter the reason I give him for not being able to sit with him at that moment I always then get the response “Oh, okay, but can you play Playstation with me?”  In fact, I can even be in the middle of a heated discussion with him about the reasons why he shouldn’t pull his sisters dolls body parts off and he will still manage to find a way to squeeze in the question.  One day I had the banter non stop for about 2 hours straight.  I finally threatened to throw the Playstation in the charity bin, and so he stopped asking, for about an hour - before starting up again!

Jack recently had a weekend away staying with his grandparents (yes, the ones that gave him the Playstation), taking the Playstation with him and spending the entire time in front of it.  Whilst at his grandparents he also had his Uncle Mike with him who is a fellow Playstation addict, and so the 2 of them battled over top scores, and together plotted their way through the more difficult parts of the games.  I’m planning on inviting Uncle Mike to come and stay for a few days to take over my role in the Playstation arena, and hopefully reprogram Jack’s morning wake up call to exclude the “Dad, can you play Playstation with me?”

Until then, I’ll keep rolling over and putting my head under the pillow…..

But that’s life with a Playstation Junkie!

Steve

Children with Aspergers Syndrome often struggle with social situations, unable to process information or their environment appropriately or in a manner that is timely.  However, roleplaying with your Aspergers child can be a great way of helping them to learn and practice responses to situations they will inevitably be faced with, and at the same time help them to understand that different actions have different consequences.

When using the process of roleplaying, the idea is to create a scenario related to your child’s life.  A scenario would involve creating a setting - time, place and people involved.  It would also involve an explanation or discussion of what might be happening in the setting, as well as a discussion of different responses or actions.  And of course, there must be appropriate or ‘natural’ consequences for various actions.

With the help of your child (and perhaps other family members or friends) work through the scenario slowly.  Give your child the opportunity to try out and explore different responses to the scenario and help them through dealing with any consequenses that they will face as a result of their choice of response.  Don’t worry if your child makes an inappropriate choice or struggles to make their way through the role play - the idea of roleplaying is all about practicing, and the more a child practices the easier it will become for them to deal with these scenarios in real life.

Introduce roleplaying in to your Aspergers child’s life gradually - like any other change, there may be some resistance at first.  Work at it slowly to start with, supporting and encouraging your child to build their self confidence.  The benefits of roleplaying with your Aspergers child can be enormous.  Your child has the opportunity to explore real life situations, and as such explore the consequences of their actions and responses in a safe and ‘forgiving’ environment.

One thing to note is, children with Aspergers Syndrome often take things very literally, so if your child is unable to imagine pretending to be another person, it may be an idea to try this with puppets, or use photos of people on ice cream sticks. 

All too often we look at and talk about the challenging aspects of people with Aspergers Syndrome.  But the positive qualities of a person with Aspergers Syndrome (AS) are endless.  The following are just a few of the wonderful traits that you are likely to find in a person with AS.

A person with AS will see a task through to completion - particularly if it is within an area of interest to them.  They will be dedicated and committed, working on regardless of whatever else is happening around them.

A person with AS will be extemely loyal.  If you have a friend with AS, you will likely have them for life, and they will stand by you and look out for you always.

A person with AS will be highly observant.  They ask questions constantly (again, particularly if they are interested in a topic) and as such will always be learning and discovering new things.

A person with AS will usually display an incredible attention to detail.  They will remember the things that most people forget, and whatever field of work they may be involved in, will usually produce amazing results.

A person with AS will usually be rational rather than emotional.  They will always be the one who is calm in a crisis.  They think logically and with reason.

It is often easy to get caught up in the negative aspects of life, but there are many wonderful and positive aspects of having Aspergers Syndrome - we just need to appreciate them more often!

What a morning we have had -and what a success to celebrate!

Jack loves lions, but will extend to other animals and dinosaurs when he’s playing with his Lego.  Our usual Lego play consists of Steve or I constructing animal figures out of Lego, Jack lining them up, and then no-one can touch them for a couple of days until Jack decides to pull them apart, and the process starts all over again.  Sometimes Jack builds the cave for the animals to live in - a very methodical and consistent procedure, that requires a lot of support and back up from us.

But this morning was a different story altogether.  I had left Jack with his tub of Lego in front of his favourite movie whilst I went about doing some cleaning and washing.  The phone had rung a couple of times and I had also been helping Anna with her dolls, so I hadn’t had a chance to check on Jack, other than a quick exchange of words every now and again, and to notice he was sitting very quietly and contently.  Little did I realise he had been busy constructing - and what amazing construction he had done!

Working all on his own, Jack had constructed a ‘T-Rex’, bottles of ‘milk’, a person and a dog, a policeman that (according to Jack) looks for lost animals’, a bunny and a cat.  He had worked diligently all morning, using the Lego picture guide as a reference, and his memory of what Steve and I had done with him in the past.  I was totally amazed, and delighted at the same time.

Jack is known for sitting back and watching - we experience this daily with him, and his Kindergarten teachers have often reported that Jack prefers to watch group activities from afar rather than participate, unless he understands the process and then he might participate on his terms.  Clearly our weeks and months of Lego play (where Steve and I have often been totally frustrated with Jack’s lack of want to physically participate and his preference for simply instructing us on what to do) have paid off.  Jack has reached that point where he can now process what to do with the Lego himself.

What a breakthrough!  And what a Lego milestone to reach!

Disorder - a state of untidiness and disorganisation, an illness.

Difference - the state or quality of being unlike, not identical or the same.

When we talk about autism we use the word disorder - ‘Autism Spectrum Disorder’, or in other words, autism spectrum illness.

Disorder is a commonly used medical term that is used to describe many conditions, so to the medical profession, Autism Spectrum Disorder is quite an appropriate term to use when describing an autistic way of being.

But is this really the right word or description to use?  If a person has autism, are they necessarily ’ill’?

Instead we might find that people who have autism have a ‘quality of being unlike’ people who are commonly thought of as typical.  In other words, they are different.  In fact, when we really think about it carefully, the ‘quality of being unlike’ is something we all have.  Yes, strangely enough, we are all different!

Words are powerful.  The words we use to describe people can be uplifting and empowering, or they can be devastating and disempowering.

So which word is it?

One of the challenges that parents might face in the initial stages of having their child diagnosed with autism is finding a doctor who really understands it.  There are a range of degrees of autism (hence the term Autism Spectrum Disorder) and no one case is likely to be the same.  Unless a doctor has had experience with autism, it will be unlikely that they will be able to help effectively diagnose and treat the condition.

Regardless if you, your family doctor, or your child’s pediatrician suspects autism, it is vital that your child be assessed by someone who specializes in diagnosing and treating autism spectrum disorders.  By seeking out specialist care you will ultimately be putting your child in the best position possible for a healthy future.  It also may mean that your child will require care from more than one medical professional who specializes in autism.

Some of the medical professionals making up the multidisciplinary specialist team for a child with autism would be; a psychologist, a speech or language therapist, an occupational therapist, a physical therapist, and a social worker.  Of course there are other specialists as well, and this list is often complemented by a range of natural therapists.

To find the right professionals to help with the care of your child it is important to ask for recommendations and do your research.  Make sure you check the experience and approach of the professional - the person needs to be right for you!  There are many resources and reputable organisations online that can assist with your search for specialists, as well as local community health groups, government departments and other health centres that can also point you in the right direction.  If your child is at school or preschool, ask the welfare officer or support team for some guidance - these people are often a wealth of knowledge and information!

Once you find the professionals your child needs, it is important that you work closely with them.  Regardless of the experience the professionals have with autism, you are the most experienced when it comes to the specific information regarding your child’s needs and abilities.

Some pointers to remember when working with your child’s doctors and specialists:

* Educate yourself – find out and learn as much as you can about autism.

* Prepare yourself - go to appointments ready with any questions or concerns you have regarding your child.

* Be open with communication – work in partnership with your doctor, and remember to pass on all relevant information.

* You can always get a second opinion!

Some great websites where you can find advice and support:

* Autism Spectrum Australia (www.aspect.org.au)

* Autism Info Australia (www.autisminfo.org.au)

* Autism Society of America (www.autism-society.org)

* Autism Treatment Services of Canada (www.autisim.ca)

* National Autistic Society (www.nas.org.uk)