Pity we look so normal by Claire

[advert:mpu] I’m actually in quite good spirits today because I have managed to farm out my two eldest children to friends’ houses to play and am slowly regaining sanity. However yesterday was a different story and I was just about at my wits end with their fighting, arguing, tantrums and just the sheer effort it can take to mobilise them to go anywhere or do anything!

I have three boys aged 8, 7 and 3 and a half and the eldest and youngest have an Autistic Spectrum Disorder (ASD). To be exact, my eldest, Jack, has a diagnosis of Asperger’s syndrome, a high functioning ASD, and little Samuel is under investigation for ASD. He is certainly developmentally delayed in all the milestones. My middle child Thomas is, in the general sense of the word, ’normal’, albeit a little overanxious at times. I am a single parent and have been separated from my husband for a couple of months. It seems that it was all too much for him and we have been living separately since his own latest ‘meltdown’.

Bringing up three boisterous, demanding boys single-handed is of course difficult for anyone but even more so when one or more has a disability. One of the biggest struggles I have with this particular disability is its invisibility. To all appearances, Jack and Samuel look no different to any other children. In fact, when Samuel is occupied in his solitary pursuits, one may be fooled into thinking he is a perfectly normal, happy child. It is only when another child encroaches in his space, or takes one of his toys that the wailing starts, unrelentless and inconsolable. At first, a nearby adult will try to talk to him, but to no avail. It quickly becomes clear that he lacks the ability sort out his own problems or communicate his needs.

Not only is this disability invisible but there is also the problem of trying to explain the intricacies of this disorder to anyone unfamiliar to its complexities. It is by its very nature a complex disorder; no two children’s autism is alike and the differences, especially in Asperger’s syndrome, are so subtly deviant to the norm that it is almost impossible to explain to the ignorant.

How many times have I tried to explain a particular facet of the condition such as Jack’s selective deafness and been rewarded with ‘oh but my son does that! It’s quite normal for an 8 year old to switch off’. Or ‘But my brother used to do that to me when we were growing up’ when I’m expressing concern at Jack’s violent attacks on his brother. The feelings of frustration, hopelessness and isolation this brings are unbelievable and I am always left with the feeling that our difficulties as parents and carers of children with this condition are minimised and we are thought of as whining, complaining parents.

Trying to explain the subtleties of this disorder to the outsider is just another obstacle to overcome when bringing up an autistic child. Looking at it in a more positive light, it can be viewed as an opportunity to try to educate the ignorant in the subtle, sometimes baffling and unpredictable world of the autistic family. The crusade begins here!



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