‘Diagnosis Day brought with it a whole range of emotions. Relief, that an expert confirmed what I had known for some time. Shock, that she had said it was ‘obvious’, when for years teachers had said there was nothing to point to this conclusion at school. Exhaustion, physical and mental. Dilemma, of how to explain it to Son One in a positive way, when it was all so new and confusing, however much it was not a surprise.
But, life goes on. After diagnosis came the euphoria that now, of course, we will receive support and things will be better. Disappointment quickly followed when it became clear that any support would have to be fought for, and would largely come from the kindness and empathy of individuals at school, rather than from any clear structure of support following a diagnosis.
Joining local support groups was a lifesaver. I have met so many wonderful women on these courses and meetings, who have become true friends. I would like to think they would have become friends if we had met any other way, but having a shared experience gives a shortcut to getting to know each other faster. As an autism parent, you learn to cut to the chase. You learn to trust your instincts. There isn’t time for pussyfooting about!
Then you settle into some sort of normality, having an autistic child in mainstream school. Everything depends on the personality of the teacher and support staff. When these people are positive, all is well for a school year. When they are disinterested or downright mean, the year is a write-off and causes so much damage to an already anxious child struggling to fit in.
Usually, you don’t have to look too far in the family to recognise who the autistic traits were handed down from. Sometimes the link is a bit further removed (uncles or aunts), but usually they are to be found much, much closer. The more you learn about autism in general and autism as it presents in your own child or young person in particular, the more you start to see it everywhere. It is as though diagnosis comes with a bonus present of a special superpower which enables you to recognise autism in those around. The teacher who is abrupt and has no social skills, the colleague who finds eye-contact painful, the overly-brusque mum at school who just doesn’t know when or how to bow down gracefully, the relative who takes himself off to another room or the toilet or outside when family gatherings become too much, the friend who is loyal to a fault but hates that hello hug.
And once you see it all around, you marvel with almost evangelical zeal at how many autistic people there are around. Usually undiagnosed, of course. About a year after my child’s diagnosis, I realised that I know more families which include one or more autistic child, than I know families with neurotypical children. When things weigh me down, I sit and wonder what on earth parents of neurotypical children worry about for their kids. What do they think about all day? They surely are not occupied with photocopying reports and documents, setting up meetings with school, trying to use the school hours to re-energise enough to face the inevitable meltdown at home time?
We have been through a rollercoaster of experiences as we got to know our son better. At the age of 11, I know that the worst is yet to come as he is forced to take the next step towards the wider world, a step he is not ready for. I now know that the unofficial support offered by friends in the know is incredibly valuable, and I also know that I will be leaning heavily on those whose children are a few steps ahead of my child in the perilous experience of growing up autistic.
What about all the adult undiagnosed autistic people I seem to have met? Mostly, I notice that they have chosen a partner who complements them somehow, are usually a much more worldly or sociable personality, someone who is generous enough to understand, tolerate and appreciate them.
This is what I wish for my son, someday.’
Livia Vass is a typesetter and mum to two lively boys (one on the spectrum) and two sweet cats. Her son was diagnosed age 9, so they are further along on the autism journey.