How do you?
How do you tell your child that you’re autistic? When do you tell him that the way your brain works, the way you feel and think and perceive is different to the way he thinks and feels and perceives? That he is like the 99% of other people on this planet who seem illogical and emotional and completely unfathomable to you.
How do you tell him that you spent the first 4 years of his life watching for the signs of the same in him?
Petrified that he might have to live through the same pain and unknowing and bullying and ridicule that you have. Relieved after holding your breathe for 10 seconds in a pub on a Saturday afternoon in Derby when you did the easy test for kids to detect if they might be on the spectrum and he passed. He grinned and got the joke and understood that you have played a joke on the doll Sally Anne and she won’t know where you have hidden the ball.
The next worry though is when will he start to see the differences? The realisation that his mum is ‘different’. Not in the way that someone with a physical disability might be, but in the intolerance of noise, the stupid embarrassing comments, the poor social skills and weird habits that you see around your home.
How do you tell him that the real problems for you started when he was born?
You see I didn’t know then. I had an inkling, but nothing definite. How do you explain that this little thing that you loved so much that was so innocent turned your life upside down. Not in the way of most people’s, with sleepless nights and money worries and thinking about going back to work full time or requesting part time hours.
I mean a descent into hell of mother and baby psychiatric wards, of social services referrals full of errors, and taking on a whole mental health ward full of child ‘experts’ to get some vindication and validation. That you weren’t ignoring your child or trying to misconstrue what he needed, you just had reached what you could cope with and that the cutting helped bring things back under control so that you could get back to him. Not that you wanted to end your life.
It meant moving from a life of running your own business as a free-lancer, managing a team of people, socialising, traveling, having independence and financial stability and partner who was just that nothing more, into a world of being unable to cope, of living on benefits and feeling sick when a brown envelope from DWP lands on your door step. A world populated by assessments and social workers (mine not his) of Community Psychiatric Nurses and Support Workers in your home. It meant having to call your partner, the father of your child, your ‘carer’, and at the time of writing not having worked for 4 years.
How do you explain all this to a little boy who you want to protect from the ills of the Earth, the bad adult things that go on? How do you explain away the scabs on your right arm, the reason why he is shipped off to Grandma’s again at short notice, why mummy has moved out into the ‘poorly house’ across town?
I don’t know and I don’t think anyone else does.
What I do know is that it is important to appreciate what you have. Love the child you have now, rather than the sibling that isn’t really going to be possible with the extent you struggle to look after the first. Love the fact that there are good days and that the condition is manageable, and with the right support these seem to becoming more frequent. Love your friends and family because they are what make a difference, not presenting to PLC directors in London. Love the fact you have enough education and capability to actually fight the crap that was thrown at you in the name of professional knowledge and came out the other side victorious.
Some days I love the fact I am on the spectrum and wouldn’t have it any other way. Other days I hate it, and it makes me want to die. I am still figuring out just what that means for me, but life goes on.