Managing Autism - A Personal View

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.

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)

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?)

On one of my many searches for some insight into the workings of an autistic mind I came across some writings by an ‘aspie’.

The writings drew me in, so to speak, and I spent a long time pondering the messages within them - in fact, I often go back to them.

3 of the pieces that particularly caught my attention were:

I and They

How Can I…?

Alternative Viewpoints

The articles from “The Mind Within” are definitely worth a read.

http://within.autistics.org/index.html

Elissa

Whilst all children benefit from routine in their day to day lives, children with Asperger’s Syndrome thrive on it!  As a parent of a child with Asperger’s it is very important to look at establishing daily routines in your child’s life.  Routines will provide predictability in their life and relieve much anxiety and uncertainty about what is happening around them.  A rountine will allow your child to have greater control over their environment.

Provide your child with schedules and timers so that they can see clearly what is happening and when.  An egg timer works well as a visual cue for children with Asperger’s - or alternatively, we have even been known to put markings on the wall clock to show the times for different parts of our daily routine.  Alarm clocks and oven timers can also be used as part of a routine, for example to remind a child that it is time to change tasks, get ready for bed, or leave for school.  Establish daily routines as early as possible and stick to them as best you can.

Having now said that, of course change is inevitable in life, and with change comes disruptions to routines - yes, a potential nightmare for a child with Asperger’s Syndrome.

There are many strategies that can be used to help a child with Asperger’s work through day to day change.  Picture cards are fabulous and are a strategy that we use regularly in our home.  The picture cards show images and photos of the many things that we do during the day, places we visit, and tasks that need to be completed.  At the beginning of a day, we select the cards that represent what will be happening for that day.  We stick the cards up on a velcro strip, and as we move through the day we remove each card and ‘post’ it in a ‘completed’ box as we finish with a task or scenario.  The benefit of the cards is that the child is able to see the full days ’story’ and can predict what will happen next.  We also use picture cards for getting ready for kinder, getting ready for dinner, or getting ready for bed - the cards outline the tasks that need to be completed, one after the other.

Again, the best made plans can go out the window when an unexpected visitor knocks on the door, or we run out of milk and need to make a quick trip to the shops.  We have a ‘?’ or ‘what if’ card that we use for these times.  It is a card that can be thrown into the mix at any time, and the child understands that this card can mean change.  To begin with the ‘?’ card is unpredictable, and a lot of time and patience is required with its use.  However, the ‘?’ card used consistently when a change arises will eventually give the child a sense of predicability - the child begins to associate it with change and begins to realise what sort of things to expect from this and as such is better able to cope.

Remember that children with Asperger’s Syndrome love routine.  When changes to your child’s routine need to occur, make sure you allow them plenty of time to adjust to the change, use visual cues when you can and provide plenty of support to help them through it.  The result - a more relaxed child and a less stressed parent!

So you may have realised for a long time that there is something different about your child, or perhaps your child is just struggling with a few areas of their development.  You visit the doctor or specialist, hoping for some ideas or suggestions as to how you may assist your child and you leave feeling like someone has hit you over the head with a brick.  You have just been told that your child has an autism spectrum disorder.  Sound familiar?  To an unsuspecting parent the word autism can be very scary and leave you feeling numb and in shock.

It’s very common for parents of an autistic child to sometimes feel shock or sadness about their child’s autism.  Parents may even feel a sense of loss, which comes with any form of grieving.  Grieving that their child is different, that their child may struggle with life, and that their child isn’t what they imagined in an ideal way.  Anger and guilt are also common emotions that arise at this time - why me, what did I do to deserve this, it’s not fair - are all common responses to the news that a child has autism.  After all, every parent wants his or her child to be accepted, to live a happy life, and to make all of their dreams a reality.  And doesn’t our society hold the idea that autism is tragic and incurable?

Too often in our society, people who are different are often seen as unfortunate, sad cases.  But perhaps it’s time to start looking at things in a different way. Perhaps as parents we can look at our children as not tragic or broken, but rather, as unique and remarkable.  If we really stopped to think about it, our children are pretty amazing people.  How many people would love to have the focus that an autistic person has, or the long term memory for detail?  Our children’s autism is a part of who they are, and perhaps as parents we need to embrace this and celebrate the wonderful qualities.  Our children won’t be sad about who they are, unless we as parents and society convince them otherwise.

Imagine if our society held autism up as an incredibly marvelous thing. In that case, most of us would be pretty happy about our child’s autism, right? Our child would still be autistic, but our perception of what that means would be different, and so would our resulting emotional response.

We need to make our own choices as to how we take on autism in our lives.  Yes we could sit back and forever be unhappy and angry about it, but there comes a time when we need to move on.  We all need time to grieve and adjust to the news of course, but then we need to pick ourselves up and make that choice.  Do we be unhappy, based on what society tells us and because life has thrown us a curve ball, or do we be happy in that we have a beautiful child with remarkable qualities, who needs our love and belief.  Bad days will come, of that I am certain.  And some of these bad days will knock you down hard.  But how we get through the bad days is determined by our decision to either embrace what we have in life, or forever be wanting for something else.

Think of it this way - our children’s best outcome in life could well be determined by the approach we take today.  A child who is fully accepted for how he or she is now, even with autism, will feel that acceptance and positive expectation, and will respond by believing in him or herself.

Take the time to grieve.  Feel the emotions that you need to feel.  But then think about that choice.

Autism is steadily increasing as a reality for more and more families, with growing numbers of children being diagnosed with the disorder all the time.  The current figure being around one in every 150 children.

Autism covers a spectrum of conditions (hence the term Autism Spectrum Disorder).  Classic autism is often easy to pick and therefore diagnosed very early, but other types of autism might be harder to pinpoint.  However there are some basic signs that parents can look for during the early years of life if they suspect something might be different with their child.

• The child may display difficulties with behaviors such as eye-to-eye contact, facial expression, body postures, and other gestures required for social interaction.  They may fail to develop peer relationships appropriate to developmental level and there may be a lack of seeking to share enjoyment, interests, or achievements with other people.  The child may also prefer to be alone or may not respond to others emotionally.
• The child may be delayed, or totally lacking in the development of spoken language.  Children who develop adequate speech, may struggle to initiate or sustain a conversation with others.  They may use stereotyped and repetitive language or odd language.  The child may find varied, spontaneous make-believe play difficult (or it may be non-existant) or their social play may be inappropriate to developmental level.
• The child may be totally preoccupied with one or more restricted pattern of interest - the interest would be abnormally intense or focussed.  They may lack interest in the typical things that children their age would likely be involved or interested in.
• The child may have specific routines or rituals and be very inflexible to change (change often resulting in tantrums).
• The child may display repetitive motor mannerisms such as hand or finger flapping or twisting, or complex whole-body movements.  They may also display patterned manipulation of toys, or perhaps preoccupation with parts of objects.
• The child may react unusually to stimulus. The reaction could be either overly severe or there may be no reaction at all.
• The older child will generally have a short attention span, and is often uninterested in pleasing the teacher at school.

The degree to which children display the signs outlined vary significantly.  And regardless of when parents notice that a child has some of the signs, it is important to seek help from a medical professional qualified to give a diagnosis.

There are many programs and treatments available that can help autistic children overcome some of the difficulties they face, and the earlier this is noticed and diagnosed the better.  Early diagnosis and treatment will often lead to a happier and healthier lifestyle for all.

We found the following article really interesting: 

There have been many conditions thought history that have been mistaken for something else, and before the human mind was understood, many with mental disabilities were placed in jail. They were deemed a threat and were then heavily medicated. Today, we have a greater understanding of what some people go through, and although different from everyone else, we know there is an underlying reason for it. We now do our best to help people like this instead of persecuting them. When looking back through the history of autism, it is obvious that though it was given a name in the early part of the 1900s, it was largely misunderstood by people for a long time.

Some believe that autism was first noticed as a condition around 1911, but it wasn’t really anything other than a theory at that time. A Swiss psychiatrist by the name of Eugen Bleuler is thought to be the first to use the term. The word ‘autism’ meant ‘an escape from reality’ and was based on behaviors he observed in adults and it was attributed to schizophrenia. Though that was false and misleading, it was a step closer to putting a name to a condition that was largely misunderstood.

New information was found from one of the earliest recorded studies of children with autism. From 1938 to the year 1943, a doctor by the name of Leo Kanner studied the behaviors of eleven autistic children. The children he chose to study were ones that seem to withdraw from interaction with others as early as age one. The type of autism that he recorded and named was what would be considered ‘classic autism’ and is often referred to as Kanner’s Syndrome.

These children were thought to have different characteristics than those classified as mentally retarded. However, at this time it was still largely misunderstood. Some believed parents were to blame, and these children were often removed from the home and placed with others to see if they would ‘recover.’

It wasn’t until the 1960s when the disorder was finally being studied and understood for what it really is and the impacts it has on a person. The finger pointing at parents of autistic children reduced as understanding grew, but there was and still is in some cases a lot of misinformation about autism, and many parents feel the need to defend themselves, as if they’ve ‘done something’ to their child.

Higher functioning autistic children and adults are often said to have Asperger’s. This condition was documented by Hans Asperger in 1944, but was not something that gained wider awareness until later in the 1980s. He described this condition as ‘autistic psychopaths’ and some of the blame was put on the mothers of these children, claiming that they were cold and heartless. Though we know today that this is not true, it was widely accepted at the time.

Since then, PDD (pervasive development disorder) has been studied and is now more understood. PDD is a blanket term for the spectrum of autistic disorders that are now known today.

The history of autism is a rough one, but that can be said about many of the conditions that affect the mind and the personality. Though more understanding exists today, there is much that is still misunderstood.

Perhaps the most important thing is that parents are no longer blamed for the conditions of autism, and that more treatments are available to help a child with this condition. Recently thinking suggests Autism is an auto-immune condition, and that it can be genetic. There is no cure, but there are programs that can increase communication and socialization skills in some children and adults.

Hopefully by understanding the history of autism we can take steps to progress treatment programs further.

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