It’s very rare that I get a chance to write anything on this
blog these days – with full-time work (to try and recoup some of the debt my
husband has got us into), three kids (one of them currently being assessed for
Asperger’s) and all the demands of everyday life that we all face.
But I want to thank everyone who’s commented on any of the blog
posts recently – the people with Asperger’s Syndrome who, quite rightly and
helpfully, are defending and seeking to explain Ethan’s behaviour and reminding
me of the immense pressures and difficulties that people with Asperger’s face
in our increasingly emotional, chaotic and socially overloading world. On the
other hand, there are us, the partners, who are living with the person who is
struggling to function in life. And we’re trying to bring up children with them
yet bearing most of the responsibility for this ourselves (often having to repair
the damage that our AS partners have unwittingly inflicted). And we don’t have
Asperger’s – we do need to connect with our partners, we do need to feel
supported and understood. We need to have a decent conversation once in a while
and not be side-lined every night in favour of the telly or computer. And when
we’re upset, we want to be really listened to and feel that we’re getting some
kind of reaction and feedback to what we’re saying.
Because, and I can only speak for myself now, however much I
try to understand my Asperger’s partner, the reality is I can’t. I can’t
understand how something that, for me is part of being human and which I don’t
even think about, for him, isn’t there. I can’t understand how, when we’re out
for a walk and we bump into a couple we know vaguely and, while I’m talking to
the wife and the husband is desperately trying to get a conversation out of
Ethan and says ‘I miss our dog’, that Ethan says ‘mmm’, rather than ‘oh, what
type of dog did you have?’ (the conversation, obviously didn’t go any further).
I don’t understand why, when our
eight-year-old says proudly to Ethan when measuring himself against our height
chart that tells you weird and wacky things you’re as tall as, ‘I’m as tall as
the world’s tallest two and a half year old,’ that he would respond gruffly, ‘you
act like a two and a half year old sometimes’ and make him cry.
So I’m sorry if my blog posts seem overly negative towards
Ethan. I do love him. I admire him hugely for his persistence, his loyalty, his
refusal to give up – on me or himself, his willingness to take the criticism I
fire his way and to try and learn from it. And I’m thankful to him for the sacrifices
he makes every day for us all and for how hard he works. And, believe me, I know I'm very far from perfect too and Ethan is very welcome to write a blog about how frustrating and incomprehensible I am! But I don’t understand
Ethan and I do find life with him incredibly difficult, and very lonely
sometimes. And so this blog post is for me – the neuro-typical partner – and for
all the other neuro-typical partners out there who are struggling. It’s a
springboard, a battering ram, a way to off-load my frustrations and connect
with others facing similar struggles.
I’m sorry to the people with Asperger’s but
this blog is primarily for the NT partners and so while I really, genuinely
appreciate you pointing things out about Ethan’s behaviour and why he is the
way he is – and you really have helped me to see things from his perspective
and have stopped me in my furious tracks sometimes and I’m grateful – but I’m
sorry that this blog is probably never going to say the things you want to
hear, because this blog is for the NT people who are trapped in an AS world,
rather than the other way around.