An Iceberg: The Autism Files
My son Michael has Autism Spectrum Disorder (ASD) and would be described as high functioning. Some people ask ‘what is high functioning – does that mean he’s super intelligent?’
No, this is not what it means and I think ‘higher functioning autism’ is a better descriptor. Autism is on a spectrum from less severe to severe. The ASD’s fall under the umbrella classification of Pervasive Developmental Disorders – that means the disorder affects a great many aspects of the person’s life and functioning.
It is important to remember that autism is:
When Michael began speech therapy at the age of three, I told the speech pathologist that he had mild autism. She looked at me, shaking her head and said ‘there is no such thing as mild autism’. That statement hit me like a brick. Now, 6 years later, I have a far greater appreciation of what it means.
I now think of high functioning autism or asperger’s syndrome as like an iceberg. Most of the difficulties are not obvious to others, they are hidden under the surface but still have a major impact on the person’s day to day life.
A child with ASD may be sitting quietly at their desk at school and may seem at ease, but on the inside they may be feeling confused, anxious, angry or agitated. They may be overwhelmed by sensory issues (e.g., noise, smell,), confused by an unstructured learning environment, annoyed by disruptive fellow students, have difficulty with processing instructions and self organisation, dread the social nightmare which is the school playground at lunchtime, and be afraid of bullies. The list goes on and on.
The child usually knows it is important to hold it all together at school and they make an extra effort to cope. This can result in hyper vigilance – the ASD child feels like they are under attack and is constantly on the lookout for danger. Hyper vigilance is very tiring.
They usually save up all the tantrums for the safety of the home environment. I have had a number of teachers say to me that my son is generally well behaved at school and I am quick to inform them that this does not always translate to the home front.
Michael’s speech pathologist Leith Johnston use to make school visits to observe my son in situ and to advise on problems and solutions. She was a keen observer and could list all the subtle signs that not all was well (signs that the teachers usually missed). These signs would include things like excessive chewing (on shirt collars, pencils, rubbers etc.,), obsessive picking at scabs, lining up objects, hand flapping and wringing, avoiding eye contact, body slumping and leaning on supports, peculiar verbal noises/tics, echolalia (repetitive speech), uneaten lunch.
It is these types of behaviours that may be signalling anxiety and distress in the person with autism.
If you provide a supportive environment for a person with ASD, you can minimise their distress. We chose to move to a small village so the whole family could live in a healthy environment and Michael could go to a small school. We address problems as they arise. It makes life easier for Michael but there is still a lot of ice under the water.
Today I am writing this as Michael works quietly at his desk (completing homework which should have been done yesterday – did I tell you I hate homework). He was supposed to go to his sports day but refused this morning because his shirt was too small (that’s just the excuse for ‘it’s all too much for me’).
Sports days are generally hated by most kids with autism (noisy, chaotic, competitive etc.) and it’s one of those issues that we haven’t yet been able to deal with satisfactorily .
Staying at home is as good a solution as any.