Managing Autism - A Personal View

I have been looking forward to today with anticipation.  Today I am heading off to a workshop with Donna Williams on “Understanding and working with challenging behaviours in people with autism”.

Donna Williams (who has autism herself) is an international public speaker and autism consultant and I am so looking forward to hearing her insights and ideas - which of course I will share here!

Here is a thought for today:

“When I loved myself enough

I came to see I am not special but I am unique”

(Kim McMillen)

 Elissa

Today was the day.

The decision was made - affirmative.

The alternative food options were prepared and put in place.

Social stories had been rehearsed as required.

Background checks had been done on the venue and guests attending.

Steve had been promoted to the position of Chief of Operations Control.

Objectives had been set and exit strategies were in place.

The vehicle was packed and prepared.

Mum was given a big kiss and a hug goodbye and the Operation was underway.

Steve remarked today about how much he felt like a ‘Secret Service Agent’ preparing for an important mission.  I remarked that his wild fantasy based imagination more than made up for Jack’s reality based imagination!

He did however, have a good point.  The preparation that had gone into ensuring that Jack had every opportunity for success at the Birthday Party he was going to attend was incredible - and not to mention exhausting!

It was worth all the hard work though as the day was hailed a success.

Steve will post all the details tomorrow - he is presently in recovery!!!

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.)

In a previous post, Jack’s feet and socks were the topic of discussion.  In this post his feet once again are the topic but this time from a different angle.

Jack, like many children with autism, has regular ‘meltdowns’ usually in response to something, or a variety of things, in his environment.  We can often sense a ‘meltdown’ looming, with Jack becoming more and more agitated.  His hyperactivity increases and he has a tendency to go totally within himself (you can talk to him but he won’t hear you or make eye contact) just before he boils over.  Jack’s meltdowns usually consist of him screaming, moaning, swearing, kicking, hitting, head butting and banging, rolling around on the ground and his body overheating.

As much as we try to avoid a meltdown occuring by redirecting him and removing or altering ’stimulants’ as best we can, there is often little we can do once he reaches a certain point within himself.  We can literally see his eyes roll back in his head sometimes and his whole body seems to take over the mind.  At this point we find it is best to ‘ride out the storm’, simply letting him move through the tantrum and aggravation.  His body eventually reaches the point of exhaustion and he becomes calm (but very tired).

Through talking with Jack during the period of calm after a ‘meltdown’ we have discovered the final moments of the tantrum can be quite scary for him.  He reports being unable to breathe properly, as well as the feeling of his body burning.  We used to hold him quite tightly during these tantrums, hugging his body to us, in order to protect ourselves from lashing arms and legs and to protect him from hurting himself against walls and furniture - damage control.  However this seemed to only exascerbate his feelings of not being able to breathe.

One day, purely in an effort to protect myself from being kicked, I (Elissa) grabbed his feet and held them tight.  He complained and continued to try and kick for a few moments but then I started to sing to him and his body almost melted into total peacefulness.  He lay motionless (though still twirling his hands every now and again) for about 10 minutes, with me holding his feet and repeatedly singing ‘Jack’s song’ (more about the song another time).

From then on ‘feet holding’ has become a regular request of Jack’s.  It doesn’t always work at the time of a meltdown, but it is very comforting to him sometimes when things become too overwhelming, or when he is having trouble sleeping.  Someone once told us that by holding his feet we are helping him to feel more grounded.  We don’t know if that is what it is, or if it’s simply the constant firm pressure on an area of his body where he usually has problematic sensory issues.  But regardless of why, feet holding is something that can give Jack a feeling of calm, and that’s good news for us.

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. 

In the past, whenever Jack’s energy and aggression had been building up I would send him outside to run laps of the back yard.  Well, I have just discovered an even more effective way of releasing that energy and anger before it becomes a total meltdown.

The discovery happened quite by accident the other day whilst I was busy changing sheets on the beds.  Jack’s tension had been building all morning - I had been sensing something big coming but just hadn’t quite been able to knock it over.

I had just gathered up the sheets in our bedroom to take to the laundry room when Anna came racing in to the bedroom squealing from being chased by Jack, and as Jack dived in to the bedroom after her I took the only action I could to protect both Anna and I from being bowled over, and I threw the doona over him.  Caught by surprise he dropped to the floor and I wrapped the doona under him to slow him down a little, so as to give Anna and I some time to recover before he leapt out from underneath.

But he didn’t leap out from underneath.  Instead, he proceeded to wrestle with the doona - pulling, twisting and punching it until he lay exhausted on the floor on top of it.  I was amazed at how totally peaceful he looked.

Since then, I have pulled the doona out a couple more times, with the same result.  Today he actually asked me for the doona so that he could wrestle for a while.

Unconventional, yes, quite bizarre in fact, is this new found method of releasing energy and tension.  But it works, so I’m sticking with it for now.

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

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!

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!