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Here is my sister Bronwyn's story about my nephew Ben:

Ben is our son and he is 5 years old.  Ben has high functioning autism.   In autism old-speak he has Aspergers.    Aspergers is a lifelong neurobiological disorder that affects social and communication skills.  Children with Aspergers often display repetitive patterns of behaviour, have difficulty with transitionor change and experience sensory sensitivities.

This is an abridged version of how Ben came to be diagnosed:

Ben was a beautiful baby.   He was content and placid.   His twin brother was the complete opposite and screamed and cried for six months solid.  I often thought we were lucky Ben wasn’t demanding and was able to settle himself.   It’s only with the benefit of hindsight there were a few little clues to his future diagnosis.   When we cuddled Ben as a baby he would throw himself back rather than nestle in.  Ben didn’t walk until he was 16 months oldand his hair was a nest of matted dreadlocks as he wouldn’t tolerate his hair being brushed or cut. 

Ben was becoming a difficult child and more prone to tantrums and meltdowns if things didn’t go his way.   If I turned left instead of right while driving, he would scream and was inconsolable.   He refused to wear clothes and shoes and we went to school pick up one day in Brisbane winter in his underwear.   If we took him to a familiar place but something unfamiliar was happening he would ‘lose it’.   When a headlice epidemic hit the household I had to wait until he fell asleep in a beanbag to cut his hair.   Every morning Ben insisted on a long shower even though he didn’t need it - It was all very inconvenient and annoying... He ripped his clothes off if they were wet.   It seemed like tantrum after tantrum after tantrum.  I noticed the looks I was getting from other parents and I agreed with those silent looks.  I was a bad parent.   I couldn’t get through to Ben like my other two children.  Was he spoilt?  Was he naughty and justneeded a good smack?    I guess Ben would happily play by himself.  One of his favourite things was suspending an object from apiece of string and spinning it around.

We took Ben’s twin brother to an occupational therapist for his global issues and she suggested Ben have a session too as he was throwing an almighty tantrum.  She said it was ‘learned behaviour’.  Mmmmm really? Okay I’ll go with that.   After a few sessions she suggested Sensory Processing Disorder.   Okay, I’ll go with that.  Robin was horrified Ben be labelled with anything.   He said “Bron, I was like Ben when I was little.  There’s nothing wrong with him”.    When Ben’s kindy teacher approached me about his lack of eye contact and engagement with the teachers and other kids I confidently said ‘it’s okay, he has sensory processing disorder and he’s being treated for that’.  

One day we went to a kindy fete and while other kids were running around and laughing Ben was waiting in line with his hands covering his ears, just screaming.  I remember confiding in a couple of friends I was worried he was autistic.    The occupational therapy had been going well and we had seen results with skin brushing and putting up a hammock for him to swing in to calm himself down.   I gave into the demands for endless showers.  The more we accommodated these sensory needs the more his behaviour improved.   But I still wanted to rule out autism.   Broaching this subject with Robin wasn’t something I was keen on.   As expected he was upset.  Robin related to Ben’s sensory needs much better than I did.    I know some of my family, including Kerryn, thought I was being an over the top crazy mother.  

It just so happened a Mother of another boy in my eldest son’s class was a child psychologist and worked for the top autism clinic in Brisbane.    I was a bit confused of where to go next.   She said let’s have a coffee and proceeded to take Ben’shistory.  At the end of that coffee I tentatively asked her ‘do you thinkhe’s on the spectrum?’  She replied “Bronwyn, I knew as soon as I saw him”.  

Anyway, there’s lots of talk about everyone being on the spectrum and everyone having a label.   In Ben’s case I felt a ‘label’ was beneficial.  He receives funding for treatment and the kindy could provide extra staffing.    We’ve found when dealing with Ben, kindness and understanding goes a long way.     His teachers, therapists and swimming teacher all know he has Autism Spectrum Disorder and are all very excited when he achieves a milestone and are keen to share when he does well or has a ‘first’ at something. 

At the end of last year, Ben’s psychologist said he was further behind than what they initially thought and recommended Relationship Development Intervention.  It focuses on restoring the parent-child guiding relationship.   Autism is confusing as there’s no quick fix and no one fix at that.   There’s a quote from somewhere that says ‘if you’ve met one person with autism, you’ve met one person with autism'. 

Ben started school in late January this year.   He seems to have regressed in some ways.  The therapist says this is to be expected as school is a big jump for him.  I notice he doesn’t interact with the other kids and when they say hello to him he doesn’t say hello back.   His twin brother, Sam, is very social, happy and enthusiastic about school.   I feel we are lucky as he has his own little peer group at home he plays with and I hope with time he will feel confident enough and the ability to do this at school too.   

Robin and I both have moments where we wish we could take autism away.   It sometimes makes life just that bit more difficult.   We can't go and do things we see other families doing.  It's upsetting to see Ben not joining in and playing with other children.  On the other hand, we appreciate the wins and we know families who haveautistic children who are non-verbal.   It was a big day when Ben told me he loved me and he now comes for cuddles and kisses.  Robin and I feel it has made us better parents.  We know life isn't always perfect and we areall doing our best.   Thank you Deutsche bank for supporting such a worthyand important charity as Autistica. 

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