Forgive me for this post as my ds is very young and only just beginning to start the journey towards a possible (but likely) diagnosis, but these are just some things I need to say out loud before I go crazy!
- Please don't keep telling me that my ds is very young to be diagnosed - I'm well aware he's young. I'm also well aware that a lot of his behaviour (a lot!!) is extremely textbook Aspie behaviour. I am better placed to see his behaviour and what it means than someone who has never met him. Yes your own child might also do one of the same things as mine, but do they also do the other 20 things on the list that my ds does, because it's that that points to an overall picture rather than one habit they share.
- Yes, some of his behaviour might be down to his age, but all these behaviours together point to a bigger picture.
- Please don't tell me that 'we're all a bit on the spectrum.' I know you're trying to reassure me and it's meant with love but even if that's true then my ds is on the spectrum enough for it to make his life difficult; otherwise I wouldn't be worried, would I??
- Please don't tell me that I'd still love him as much as if he was perfect, because he is bloody perfect!!! Having Aspergers doesn't make him any less the adored, adorable nutty little whirlwind, the child I was desperate for and thank God daily for being in my life.
- He is more than Aspergers.
- Please don't feel sorry for me, or him. When you feel sorry for us you make us feel abnormal. Understand that our challenges are different, maybe even harder, but that we still have joy in our lives.
- Please remember that having a son with Aspergers is more that just a word, more than just a name for some socially acceptable, quirky behaviour a la Sheldon Cooper. It means that some days we can't leave the house. It means strangers saying awful things to us in the shops because my ds heard a noise he couldn't cope with and is having a meltdown. It means horrendous, violent tantrums over things so small I can't even understand. It means stress, strain, exhaustion, fear, self doubt. It means so many normal things are out of the question.
- Please understand that people with Aspergers are actually extremely emotional and loving, despite the stereotype.
- Please don't assume the 'obsessions' are all negative. Yes, hearing the same song for the 20 billionth time that day can be trying, but you should see how happy it makes him!! He doesn't sort his animals in a row for hours at a time because he's a mindless little robot with no control over compulsions - he does it because he thinks it's the funnest thing ever!
- Please understand that I can't always take solace in how intelligent he is meaning 'he'll still do ok.' His intelligence will mean nothing if he has an anxiety attack at the thought of being in a classroom with more than 3 people in it, or if he decides not to pay attention in lesson because naming breeds of dogs seems more important to him that day.
- Please understand that today, tomorrow, next year, ten years time if you ask me how I feel I may still be sad, worried, anxious, frightened. I'm sorry if that's boring. This isn't really going to change.
- And please understand that I am truly truly grateful to all those people who try to understand, who want to say the right thing, who speak out of love rather than saying nothing at all. Even if you've ever said any of the things above I do see how you're trying to help and I will always, always be grateful for that.
