Feeling very honoured to have permission to share this email from a young lady with Aspergers.
A mum of an autistic kid I know shared your post on her wall. I read it. I loved it. I loved it in that broken way where you shouldn’t be loving something because it’s so bad, but at the same time you can’t help loving it, because you know you’re not alone.
In the nicest possible way, I’m not talking about you. I am not a parent to an autistic child. I am 25 and was diagnosed with Asperger’s nearly 3 years ago, and though it’s not been formally diagnosed yet, I clearly have Sensory Processing Disorder (lucky me hit the jackpot – I’m sensitive in all 5 modalities. So that’s fun).
I wish I could say it gets better. I think for some it does, and I hope and pray that your kid is one of the lucky ones. It hasn’t got better for me – at least not yet. And whilst I hate the fact that every day is full of suffering, and that no one ever quite understands it, I can say this: Your daughter is not alone, and there are people who will talk to her when she’s old enough to find the communities online and say “me too”. There are people who will befriend her and say it’s ok if she cancels plans, because I’ve had to cancel them loads as well. People who will accept that it’s impossible for her to leave the house sometimes, because god knows I’ve stayed in more than anyone should.
I don’t know what my parents experience, because I can’t understand it. I know sometimes their reactions change, and I know it’s a big deal, but I don’t know why. In the end, I don’t think it matters if I understand it. I hurt them, and I don’t want to, but no one could ever love them as much as I do. I say it as often as I remember, but I mean it all the time. I mean it especially in the middle of a meltdown when the only person who would ever weather through that without losing it with me is my mum.
Autism parents mean the world to me. I know my mum and dad suffer for me. I know they do everything within their power to support me. I don’t know if that’s enough, but it’s the only thing that’s got me this far.
Thank you, on behalf of myself, and your daughter, and all the autistic kids (verbal or not). Thank you for being there for her / me / us.
And as if that wasn’t powerful enough, in a second email, replying to mine – ‘Chase’ made an observation of the utmost clarity:
I have heard so many people talking about wanting the world to *understand* autism, and what we go through. The problem is… I don’t think they can. Our brains are different. Our whole world experience is inherently different.
I can talk and talk about what life is like for me, but it will never be something a neurotypical brain will experience. It will never be something they can try for a bit so they understand. I believe what we need is acceptance. You don’t have to understand something to accept it. Acceptance is where someone tells you how it is for them, and whether you understand it or not, you say ok. That’s how it is for you. Let’s try and work with it.
Sadly, I think I’m being naive. For acceptance to ever work properly, there would need to be an awful lot of trust. If we could trust that the people we spoke to would be honest about their situations – if EVERYONE was honest, then we could accept what they said without feeling the need to prove or disprove. We wouldn’t need to understand. We could work, over time, at gaining insight into each other, but our rights shouldn’t be based on whether someone else has experienced it yet. Our rights should be based on what is, not what someone who can never feel it thinks it is.
I am torn in two.
I truly hope that my daughter makes loads of progress and ends up leading a relatively ‘normal’ adulthood, unlike this amazing young lady. At the same time, she would make a fabulous role model: her achievement at becoming the first person to have an Autism Assistance Dog is pretty damned formidable and I would be incredibly proud to have a daughter so deeply thoughtful and articulate, read more from her at http://jointhechase.blog.co.uk