Managing Autism - A Personal View

Have you ever taken your child with autism to the supermarket and faced the stares and rude comments from other shoppers and sales assistants who see you as a parent who simply can’t control your child?  And if this isn’t difficult enough to cope with you arrive at a family gathering or a get together with friends only to recieve similar comments, or worse still, advice on ‘good parenting’ or behaviour management techniques.

We have found moments like these are a real struggle.

We’re sure even the strongest of parents eventually start to feel the tap tap tapping away at their self confidence on occasions like these - especially when they happen regularly.

Developing strategies to help cope with well meaning family and friends (and even rude strangers) who have the ability to knock you over with one off-handed comment is really important.  Below are some strategies that we have both tried ourselves and have had suggested to us by others.  Whilst these strategies may not always work in every situation it’s worth giving them a go - after all, your self confidence and personal morale is at stake!

1. Develop a ‘line’.  Have a response such as, “Thanks for your advice, but we are dealing with our child’s behaviour following advice from specialists / professionals.  We appreciate you being understanding of our position.”  Often this will deter any further comments on your parenting skills.

2. A strategy that has been suggested to us is to present interfering strangers and associates with a card that simply states “my child has autism / aspergers syndrome”.  Other parents have found that people who are aware of the disorder generally move on without further comment, or become very apologetic.  Even those who aren’t familiar with autism will usually look fairly embarassed and move away - either because they don’t know what it means or because they have been taken to task on their inappropriate comments.

3. Prepare in advance for get togethers with family or friends.  It is good to talk to people before the event about issues that you may be facing, and just how it is that you will be managing your childs behaviour.  Even if you can speak to a couple of understanding people, you will at least feel supported and less anxious prior to the event.

4. Be confident in your approach with your child.  If you are in a department store when your child decides to throw a tantrum, stand tall and deal with it just as you would normally (as if you were in your own home).  If you need to take your child outside or away from anything that may be causing aggravation, then do so calmly and confidently.  A parent who appears sure of themselves and confident in what they are doing is less likely to draw comment from onlookers.  Yes, you will probably still attract some stares, and you may feel completely out of control yourself, but a parent who gives the impression of being in control will usually avoid unneccessary attention.

5. Above all, stay calm, relaxed, and smile - it’s amazing the effect this will have on any situation!

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.