Managing Autism - A Personal View

This is a message I received via email a few days ago - one of my regular inspiring messages from ‘My Daily Insights’, and one I wanted to share. When I read it I thought how true it was, we all need strength, but we all need courage too, and I think as parents we show tremendous courage even if we think we don’t have it.

 It Takes Courage
Author Unknown

It takes strength to be firm,
It takes courage to be gentle.

It takes strength to conquer,
It takes courage to surrender.

It takes strength to be certain,
It takes courage to have doubt.

It takes strength to fit in,
It takes courage to stand out.

It takes strength to feel a friend’s pain,
It takes courage to feel your own pain.

It takes strength to endure abuse,
It takes courage to stop it.

It takes strength to stand alone,
It takes courage to lean on another.

It takes strength to love,
It takes courage to be loved.

It takes strength to survive,
It takes courage to live.

Sent to you as a courtesy of…

Your friends at AsAManThinketh.net
http://www.AsAManThinketh.net

As a parent, you have known for a long time that something is very different about your child, but you can’t put your finger on exactly what it is.  So you start seeking answers.  You look to medical professionals, and you do your own research, and you are constantly confronted with labels.  But which label to attach?  And then, should you really attach a label to your child?

There are two quite separate views in society when it comes to labelling conditions and both have their merits.

Firstly is ‘not to label’:

Labelling a child can conjour up negative ideas and emotions, and may create undue stress and anxiety.  Parents want the best for their children, and sometimes unsuspecting parents can find it devastating to have a label placed on their child.  Labelling a child can place them in a box, and may limit their potential.  It denotes them as being different, and if used carelessly, separates them from society.  A label may stigmatise a child - mark them as a social misfit or disgrace, and leave them feeling shameful.

The alternative is ‘to label’:

Labelling a child with a condition can give a signpost - or in other words, a place to start.  Parents who have spent time desperately searching for answers to their child’s challenges and differences in life often find it relieving to be able to give their child’s way of being a label.  The blur of life’s uncertainty starts to clear a little and a path appears ahead.  Labels can help to establish a sense of order.  They help to point out appropriate support groups, counsellors and treatment options.  Labels can also increase awareness in society - hopefully increasing the effectiveness of diagnostic work, and professional studies.  A label used in the right way may very likely lead to a more positive environment for a person, and could greatly improve a persons outlook on life.

So it comes down to one question - ‘to label or not to label’?

Choosing whether or not to use a label with your child really depends on how the label will be used.  Whilst labels can be destructive they aren’t always bad news if used with great care.  Labels used in the right way can ultimately help to improve a child’s quality of life, give them a sense of certainty, and even provide answers to questions they themselves have.  But just remember the power of a label.  If you choose to use one, avoid anything that is detrimental to your child’s well being.  Use a label carefully and selectively and be sure to give it the positive focus your child deserves.

My suggestion - use labels where you need to, but don’t make them your life.

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?

This post is a simplified version of our daily discussion on socks - according to Jack (and interpreted and written by Mum).

The problem with socks is that they itch, and scratch my heels and tickle my toes.

The problem with socks is that they stick, like glue to my feet, they just don’t let go!

The problem with socks is that they twist and turn and pull all over my feet,

The problem with socks is that they burn, my skin how it hurts, it’s so hot with the heat!

So why wear socks?

Well… I don’t, and the problem is fixed.

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)

For a long time autism has been a dirty and misunderstood word.  Even today, for many people, the mention of the word autism triggers alarm bells and starts them thinking “lost cause”.  It doesn’t help that media and society often portrays negative images, and that most people only know autism as ‘Rainman’, disconnected and uncommunicative children, or out of control youths that destroy property and family relationships with their violence and aggravation.  With around 1 in every 160 children being diagnosed with the disorder, it’s time to remove the stigma attached to autism.

People with autism are not some special breed of people that need to be branded and shoved off in a corner somewhere.  Like anyone else, people with autism are beautiful and amazing beings that we could all learn a lot from. They only become people with autism when we start comparing certain aspects of their processing and functioning with that of a perceived “typical person”.  In fact, maybe we should change the word we use to describe autism from ’disorder’ to ‘difference’.  This puts everyone on a level playing field, as we are all ultimately different and unique in our own way.  We all have talents and we all have strengths and weaknesses.

Perhaps it’s time that the gifts people with autism bring to our lives be more widely recognised.  Starting today, try removing the comparisons from all things in life - try seeing things (and autism) for simply as they are.  Think of the flow on effect!

I use the term ‘political’ because I much prefer to stay away from media hype, and heated opinionated discussion of topics, but I wanted to post what I have been ‘reflecting’ on today in relation to the world of autism.

My previous post related to Jack’s diet, and little did I think when I wrote it how closely related the topic was to that of the most recent heated discussion on autism.  As I wandered through blogs today, I began to reflect on all the discussion happening at the moment and my personal thoughts could pretty much be summed up as this:

People make choices according to what is right for them, and what may be right for some may not be for others.  However, personal choice is simply that. 

Steve and I love Jack unconditionally, and totally for who he is - and autism is part of that.  We would never want to change him, or take away his autistic qualities.  Autism is specifically a ‘developmental’ difference (the medical profession call it disorder of course), and so Jack will change as he grows up, but he will always have a developmental difference (again, part of who he is).

It’s interesting that I have been reading many opinions for and against diet being a cure for autism.  For me, the word cure doesn’t sit with developmental difference or disorder.  Development simply can’t be cured - it just changes over time and at different rates.  I personally see diet change as a path to easing symptoms of allergies.  It’s not a cure - it simply allows different experiences in some people who have shown to be allergic to certain types of foods.

Jack’s diet deserves much credit for some of his current life experiences.  However, it is no more an attempt at a cure than it is an attempt to make him someone who he is not.  But in terms of his aggression - yes that has settled, and his hyperactivity - yes that has settled, along with his severe outbreaks of excema.  Not cured, mind you!  But settled somewhat - yes.

I’m simply a mum who does what I can for my child.  Everyone makes their own choices, and I certainly make no judgement of that.  As I often say - I guess you take from things what you like.

Elissa

(the not normally political or opinionated mum - but then, what is normal?)

In a previous post we discussed the idea of a special autism diet - that is, a diet that is gluten-free and casein-free.  We implemented this type of diet with Jack, however we also took it a step further and completely cut out all artificial colours, most additives and preservatives, as well as most sugars and as many saturated fats as possible.

We made this decision after a consultation with a behavioural specialist.  As we mentioned in the previous post, many conventional doctors do not recognise a link between behavioural conditions and diet, but this specialist had seen huge improvements in children’s conditions where these ’toxins’, so to speak, were removed from the diet.  The process that we went through with the specialist was quite complex, more so than I am giving it credit for with my explanation here, but basically Jack underwent tests to ascertain what nutrients his body was lacking in, and what foods and toxins were causing sensitivity and behavioural problems.

The changes to Jack’s diet that we discuss next are by no means a ‘one size fits all’ approach.  The changes were specific to his needs and in no way do we recommend or take responsibility for such changes without specialist advice and monitoring.  In fact we suggest that specialist advice be sought before any diet change.

Along with the gluten, dairy, additives, preservatives, sugars and saturated fats, we also removed soy and nut products - foods which tests showed that Jack was having reactions to.  Jack was also prescribed very specific nutritional supplements that were to replace what his body was lacking, and also improve brain function.  We were also instructed to increase certain foods in his diet, such as fresh fruit and vegetables, fish and other omega 3 enriched products.

The first few weeks of the diet change were a nightmare in that we fought with Jack over everything he ate.  At first he wouldn’t touch the ‘new’ food that we prepared, in fact he totally refused many things and we had plenty of violent outbursts.  Yes, we could have taken it slowly but we really needed just to make the change and deal with it.  It was one of those things - we could have aggressive behaviour as a result of him eating food that was having a negative effect on him, or we could have aggressive behaviour as a lashing out at change.  We went for the change option - we figured that sooner or later the storm would calm a little.  And it did.

Within a couple of weeks things settled down and we started to see a really different side of Jack.  He became easier to deal with, he became less aggressive and the hyperactivity certainly settled somewhat.  We all adjusted to the diet, and these days, Jack doesn’t even blink an eye over the food he eats.

The diet certainly was a good start to improving his behaviour.

With such severe restrictions on what he couldn’t eat, we have to admit it was extremely difficult finding pre-prepared foods or even recipes that catered to his dietary requirements.  We spent a great deal of time experimenting and hunting down products and ingredients, and eventually managed to replace bread, biscuits, cakes and other foods with Jack friendly versions.  Over time you will find some of these recipes here on our blog, and even if you don’t go down the road of having your child’s diet completely overhauled, we’re sure you will still find some of the recipe ideas enjoyable for your family.  And by the way, these recipes are also perfect for children with ADHD!

Jack starts school at the end of January next year and the time has come to start his kindergarten to school transition process.  Jack’s transition process is longer and more involved than what other children would have.  The school has arranged for him to have regular visits over a number of months to help with his adjustment to the change.

It took us a long time to find the right school for Jack, a school that would meet his needs and that would also meet our ideals in terms of what we wanted for his education.  We have great confidence that the school we have chosen will be the right one for Jack, but it doesn’t take away the anxiety that I feel about Jack starting school.

Steve is more relaxed about the whole ’starting school’ thing.  He knows that the time is right and that Jack will manage in the right environment, with good structures and routines, and with good support around him.  Deep down I know this too, but I’m still struggling with the idea.

I’m just very protective of my ‘baby’.  The biggest thing I am battling is letting go and trusting that he will survive on his own.  For so long now I have been by his side protecting him, particularly in social situations.  I have given everything I can to him, and I guess I am somewhat frightened as to what will happen if he doesn’t have me with him.  He will survive, of course he will, but I still feel anxious.

So for now Steve is in charge of taking Jack for regular visits to school.  I will eventually have to face it, probably sooner than I want to, but maybe this is a good learning experience for us all.  I just have to learn how to let go, and preferably before I no longer have any choice.

Elissa