I was warned by friends that the teenage years with Son 2 would be hard. But he's 17 now and up until Christmas I thought we'd largely got away with. So the change from a calm boy into an often manic whirlwind, who seems to need no more than four to five hours sleep a night, has come as rather a shock.
All this comes at a time when the old support systems start to crumble. Support groups, whether online or real life local ones, tend to concentrate on families at the start of the journey and there are few parents attending who are embarking upon the challenges of decision making for their child's adulthood. Every young person presents with a unique set of circumstances, every local authority offers different services and the spending cuts add an unwelcome additional uncertainty. We should all be supporting each other, yet as parents further down the line we start to feel excluded.
Parents with younger children often seem to find hearing about the challenges of adolescence and adulthood upsetting, they don't want to look into the future. But I have a different take on this. When Son 2 was about three and very difficult, a parent introduced me to his son, who was then about 20 or 21. The young man was calm and well behaved in the presence of a stranger. Although he was largely nonverbal he was clearly bilingual, he could point out items when asked in either language and he appeared comfortable in his family home.
I couldn't imagine Son 2 ever being like that. But the father assured me that his son had been as difficult as Son 2 at the age of three. He'd gone to the same school that Son 2 now attends and his father was helping other parents to fight for a specialist education for their own children. That meeting gave me a glimmer of hope which I held on to and now, despite Son 2's current mania, I can see that he too is nearly there. I have high hopes that when the hormone rush subsides he will be like that young man.
I'm lucky that I have several friends who have adult children with moderate to severe ASD. I know who I can turn to for advice outside my previous support groups, from which I am gradually withdrawing as they seem less relevant. Everything moves on, services change, and some of the input we were lucky to receive when Son 2 was small would not be available today. I guess every new generation of parents has to fight its own battles and parents of teenagers with disabilities will continue to float away from these support groups to find advice wherever they can, unless their needs are recognised too.