|"Living With Autism" |
First, to explain, we initially noticed what we believed were autistic-like behaviours in our then two-year-old son in January a year ago and we mentioned these to his various therapists. Six months later, during his two-year developmental assessment, one of his Consultant's said she believed she had enough information to diagnose autism but we and his other therapists still wanted to be sure that these behaviours weren't being triggered by his other disabilities. Another eight months of observation, research and living with our son and we were convinced that he did indeed have autism. At our meeting with his Consultant two weeks ago, she said she believed it was now time to confirm the diagnosis and we agreed.
On this basis, we are very new to 'Living With Autism' and we do not yet have as much experience or knowledge of the condition as many other parents with autistic children. But allow me to share a small snippet of what our life is like: our son has constant meltdowns - tantrums that involve injuring himself, us, our pets, throwing toys and small items of furniture around and ear-piercing screams. He cannot abide haircuts, doctors appointments or changes to his routine. If Daddy leads him out of the house, he must go to Daddy's car or he has a meltdown. If Mummy leads him out of the house, he must go to Mummy's car...or he has a meltdown. Adam cannot comprehend or adapt to small changes that would not even phase many other children. He has absolutely no sense of danger and will repeat behaviours without making any connection between these and the injuries that result. He has been covered in bruises, has had large goose-eggs on his head and cuts from these injuries. There have been times when I have genuinely feared that others looking at him will think we abuse our son, when in reality he injures himself. We have discussed this with his Consultant and expressed our fears, to have her respond with understanding and empathy.
Our son has very minimal communication skills and while he can sing blurred versions of entire songs or recite lines from TV programs, he cannot tell us if he is hungry, thirsty, tired, wet or dirty. His social skills are very minimal and he plays alongside other children, never with them. At any given point, our son will simply pull free of our hands and take off. He does not respond to his name nor demonstrate any understanding of why running in front of cars is bad. We spend our days constantly scanning for danger on his behalf and desperately trying to keep him safe. There are many other things I could say but to anyone with knowledge or experience of autism, I know these descriptions will be very familiar.
So when I heard about the Horizon documentary, I made a point of watching it, being sure it would be an interesting insight into the lives of others like ourselves and may offer me some education, tips or tricks on how to help my beloved son. Instead, what I saw during this documentary was a lovely psychologist who is clearly fascinated by the condition and has studied it for many years. She demonstrated the amazing skills of those with autism who demonstrate special gifts - human calculators for example - and those who manage to find ways to cope in the world despite their reduced social skills, showing us actors and people in relationships. There was one, and only one, man who is at the more severe end of autism who struggles to communicate and cannot live independently. He was highlighted with particular interest because she had met him when he was a child when professional understanding of autism was very different. Then, there was a fascinating segment on tracing examples of autism in history.
But there, the documentary stopped and I was left wondering where the rest of it was. What I saw on the screen were overwhelmingly the high functioning individuals who appear to be 'just a bit quirky' but find ways to get on with life and adapt to the world.
No where - no where - did I see my life or the lives of so many families who live with autism. No where did I see either demonstration of, or even mention of, autistic individuals who have meltdowns, remove their clothes in public, "wander" or "elope" - as in escape from their parents or carers and walk for miles upon miles and in some tragic cases, lose their lives as a result. Only the one case of the 57-year-old man who cannot live independently and has minimal communication skills demonstrated to me that autism can be in any way debilitating.
This program was a start - it began by humanising people who experience autism and demonstrating that many are high functioning individuals who find ways to adapt to their condition and cope in the world. It celebrated the people with autism who have the most amazing intellectual gifts and showed us that autism is not to be feared or shunned....
But this documentary would have been better titled, 'Thinking About Autism', it didn't show me what 'Living With Autism' is like. It didn't show my life or the lives of so many others at all. If anything, the outcome of this documentary could easily lead to a misconception that autism "isn't that bad" and that if those affected with it just adapt themselves, they will get on just fine. In their review of the program, The Independent said:
"We learned, for instance, that while living with autism presents difficulties, it needn't be tragic."
But this is precisely the problem. No, living with autism needn't be tragic. My son is not a tragedy, he is a whole person whom I adore. But living with autism presents far more than "difficulties". So now we need part two. Autism is a spectrum for very good reason. It isn't just about those who have 'rainman-like' gifts - it can also be an awful and debilitating condition that isolates those who suffer with it and causes excruciating stress for their families. Autism is not a tragedy, but nor is it an interesting little quirk. Autism is a lifelong condition which can be utterly debilitating and life changing for those who are diagnosed with it and for their families.
I did not see any element of this debilitation in this documentary and that is tragic.