Managing Autism - A Personal View

We came across this article, found it really interesting and had to share it on our blog.  Elissa & Steve

For many parents of children with Asperger’s Syndrome; coping with violent and aggressive behaviour can be a very difficult challenge indeed. In this article I will outline the 2 essential factors that you need to know to cope with such behaviors.

Aggressive behavior in the child with Asperger’s Syndrome occurs for a reason, just as it would with any other child. No child ever really just “acts out” for no apparent reason whatsoever. The key is in the words “apparent reason” – there is ALWAYS a reason but the major challenge for the parent is often working out what that reason is.

Inappropriate behavior, whether mild or severe, generally occurs in order to:

1. Avoid something – for example a child may become aggressive and shout before getting the school bus; as they want to avoid going to school.

2. Get something – for example a child may lash out at another child because they want to get the toy that the other child is playing with.

3. Because of pain – for example a child may show a range of challenging behaviors to their parents because they feel in physical pain, such as having earache.

4. Fulfill a sensory need – for example a child may lash out or shout in the classroom if it is too noisy, too busy, too bright, too hot, or strong in a particular smell.

So the first step in reducing or eliminating this behavior is to determine the need that it fulfills by looking at the four categories above. The second step is to teach them a replacement behavior, which they can use to communicate what they want or don’t want. It may even involve using some of their obsessive or self-stimulating behaviors (like hand-flapping, rocking, pacing) as a replacement behaviour. This is because it would be far less intrusive to others than aggressive behaviors, but still serve the same purpose. It could also be about encouraging the child to express their feelings or negotiate verbally. For other children they may communicate through another method like emotion cards, drawing, using symbols or “talking” through a puppet. You know your child best so you need to determine this.

This process takes time and initially, depending on the behavior, you may not have time. If the behavior is severe, then you need to remove the child from whatever situation they are in at the time immediately. Simply insisting that they stop the behavior and participate in whatever is occurring will not benefit the child or you; unless you remove them from the situation first. Maintaining your child’s routine will go a long way towards reducing the need for inappropriate or aggressive behavior in the first place. Because for children with Asperger’s routine is a great source of stability and comfort for them.

So just to recap the 2 critical factors for coping with your child’s aggressive and violent behaviors are:

1. Identify the real cause of the behaviour from the 4 main categories above.

2. Teach the child to communicate the real cause of the behaviour to you in a less harmful manner.

Article Source: http://EzineArticles.com/?expert=Dave_A_Angel

You will need:

2 medium sized apples

1/2 teaspoon of ground cinnamon

1/3 cup of unsweetened apple juice

Method:

1.  Preheat oven to 160C (or 315F).

2.  Peel and core the apples and cut into thin slices.

3.  Combine the cinnamon and apple juice and lightly brush over both sides of the apple slices.

4.  Arrange the apples on a wire rack on a baking tray and bake for 20 minutes or until dry.

*  Store in an airtight container - if they last that long!

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

A support network is vital to parents and carers of autistic children.  There will often be local groups or networks that you can tap into in your area, but don’t overlook the benefits on online autism support groups.  These can be of great help to you in coping with your day to day life with an autistic child - and help can be there from all over the world at the touch of a button. There are autism specific websites, blogs and chat rooms all over the net that are designed to allow people to virtually meet online and share information and offer one another support.

The benefits of developing your own online autism support network are endless, and in times of difficulty can become a ‘life saver’ in the sense that you can offload your problem to someone who understands, seek advice, or simply just be in the company of friends.

Online support groups give you the chance to meet others who are experiencing life as you do.  There are millions of people all over the world who suffer from some form of autism.  You will soon realize when you become part of an online autism support group that you are not alone.  Sharing and talking with others who understand your challenges can help you mentally and emotionally cope with your situation, and may even better your relationship with your autistic child.

Online groups can help you to expand your knowledge about autism.  You will learn about and from the experiences of others and be exposed to endless information on the disorder.  Many online autism groups discuss the latest news regarding studies of the autism, as well as the latest medical and alternative treatments available. The more you know about autism, and the different approaches to treatment etc., the better you will be able to cope with what life presents you, and the better choices you can make.

Developing an online support network can help others to cope better with autism.  By sharing your stories and listening to others, you are giving so much and helping others to learn.  Providing another person with friendship, knowledge and hope is a great feeling.  You may not have all the answers, knowledge and information that they are looking for, but at least you can listen, empathize, and lend emotional support.

Autism can be challenging to deal with and at times we can feel emotionally alone and unsupported.  It is important not to try and tackle autism in isolation or in silence. Even if you don’t have the time or the desire to join a local autism support group in your area, it is worth considering developing your own online autism support network to help give you some peace of mind, and a friendly and supportive message when you need it.  It can be a life saver!

Who would have thought that a mother could make herself indispensible simply through the way an apple is prepared for a snack.  Well I didn’t plan for it anyway!  I arrived home from being out shopping the other day, to be confronted with a total meltdown over the way an apple had been cut.

Jack is very particular about the way he eats his food - apples included.  He won’t eat an apple in it’s ‘as is’ state, it must be cut for him, and I have just discovered that even the cut must be precise.

This day I was out shopping Jack had decided it was apple time and that ‘Dad would have to cut it’.  Steve (trying his hardest to keep things calm and ordered), picked up the apple and sliced and chopped until it resembled small bite size pieces - perfect in his eyes for a finger food snack.  Perfect in Jack’s eyes?…..  Well, maybe not.

When we were able to return the household to a sense of calm, and we were finally able to make sense of the issue it came down to one thing.  “Mum makes boats”, Jack said.  Yes, my precisely cut slithers of apple that I prepare day in and day out without thinking, apparently take on the form of boats.  And in Jack’s eyes, are the only acceptable form of an apple!

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!

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!

A while ago I came across a book by Kathy Hoopman, titled “All Cats Have Asperger Syndrome”.  Whilst the book is not new it has just been shortlisted for the Children’s Book Council of Australia awards.

The book is uplifting and truly ’beautiful’.  There are no detailed strategies or advice contained within its pages, this picture book is simply a lighthearted look at both the joyous and the challenging characteristics of a child with Asperger Syndrome.  Through humour it celebrates the uniqueness of the Aspergers child - Kathy Hoopman’s insightful approach honours the differences and promotes a sense of self respect in the Aspergers child.

The book brought tears to my eyes the first time I read it, it was just after Jack’s diagnosis and the emotions were still running pretty high!  But truly, it touches the heart, and provides hope.  It’s a book that I now keep permanently within reach - it’s great for a pick-me-up when I need it.  It’s a treasure, and a must read for anyone who has contact with an Asperger child.

Elissa

How many times have I asked myself this question?  Why me?

When we’re out shopping and my son starts to tantrum, and head butt me and yell inappropriate language at everyone around us, I ask myself this question.

When we’re out with friends and my son’s behaviour is aggressive and antisocial, and I’m on the receiving end of ‘advice’, disapproving comments, and feeling other people’s uncomfortable tension in the air, I ask myself this question.

When I have to refuse an invitation to a social gathering because I’m unsure of how he will cope or react, or when I avoid leaving the house because his behaviour is so unpredictable and it leaves me feeling completely exhausted, I ask myself this question.

When his little sister shields her face and body as he runs past her, in fear of being hurt by a bump or a push because he is oblivious to those around him, I ask myself this question.

When I feel totally alone and unable to take any more physical or abusive attacks from him, I ask myself this question.

I know the answer - even at my lowest point, but I have to remind myself often.

Why me?  Because I love him.

Why me?  Because I will never give up on him.

Why me?  Because deep down I know that I am capable of taking on this very special task, and that is to support him and encourage him, and love him through life.  Not every parent could do this job, of that I am sure.  I know my job is to believe in him and to help him reach his full potential.

The future often scares me.  I wonder at what it holds for us as a family, and for him as a person.

But when I ask the question, Why me?  I just know that it couldn’t be anyone else.

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.