Managing Autism - A Personal View

Jack has received an invitation to a birthday party for this coming weekend.  The birthday party is for a friend of Jack’s - a little boy he has known for a couple of years.  Whilst excitement is brewing over the idea of a party, there is a lot of nervous energy also building up.

Jack loves the idea of socialising and parties, it’s just the reality of it all that totally freaks him out.  He wants to have friends come to our house to play and he wants to be able to go to other kids houses and parties but when the time comes he struggles to manage - the anxious behaviour kicks in (literally) and he becomes totally overwhelmed.

The last party we ventured to was around 6 months ago and was for a ‘kindergarten friend’.  It was a total disaster - tears, tantrums, kicking other children, and inappropriate language.  The memory of it all is still very fresh in our minds and that makes us uncertain about whether or not we tackle this one.

So after much deliberation, the decision has been made to take the party one step at a time.  We have confirmed that the party is quite small, and that we may leave early without offending anyone.  We will make a choice on the morning of the party as to whether or not we go (depending on the mood of the day) and if we do go, we will take it slowly and without expectation.

Now it’s social stories and role playing until then!

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.

Questions… 

On a daily basis, much of Jack’s conversation is filled with questions - but they are never general questions,  they are always focussed and usually on his ‘current’ specific topic of interest.

Recently, water and how it exists and progresses it’s way through our world (in both it’s natural and man made environments) has been a favourite topic of his.

“How does water push out of the pipes Mum?”

“How does the water get to the pipes Mum?”

“What happens to the water that goes down the drain in the street Mum?”

“How do they fix the water Mum?”

“Where does the rain come from Mum?”

“Why does the rain come Mum?”

“Why does the water disappear off the ground Mum?”

“But why?”

“But how?”

“But why?”

After a few weeks of answering questions about drainage, filtration, and anything related to the clear liquid we rely on to survive, I really thought I had the water thing covered.  I thought I had explained everything there was to know.  Then today he asked:

“Why do we put water on the plants Mum?”

Of course, I’d forgotten the plants!

I think the water topic will be here for a while longer.  I’ll just have to keep doing what I do, answering his questions as best I can, and wondering just how his mind works as he ‘ponders life’.