Saturday, 13 August 2016

SPD/HFA/Aspergers/ASD/Whatever the Heck THIS Is - Me Too!

The further we continue on our journey with Lara, the more I see - and understand - myself.  Having spent years thinking it was just 'my weird ways' as my family has helpfully, and hurtfully, described my behaviours for as long as I can remember, realising that there is a reason for this stuff is such a relief.  The one BIG advantage Lara has is that I get it, I'm here, I survived and continue to do so, and I can say "yep, me too".

At the moment we choose not to pursue a formal diagnosis, but informal conversations with experts plus (characteristically) extensive research and reading, tell us all we need for now.  And do you know what, we're normal.  Normal for us.  Normal for who we are, normal that we have a hard time sometimes, normal that we would often rather stay at home than go out, because the very thought of having to go out feels so utterly crippling.  Normal for just being who we are and expecting others to accept that, as we, often painfully, have to accept them.

So what do you need to know about us? Five things: we're fiercely intelligent, we don't suffer fools gladly, we're ridiculously generous and thoughtful, we take what you say literally, and we don't like disloyalty or ignorance.  You thought I was going to list our disabilities and problems?  We don't think it is a disability, or a problem - most of the time anyway.

Saying you're intelligent is considered boastful in our culture, whereas proclaiming oneself beautiful or other vapidities is OK.  Well, we're really, really clever, ludicrously so.  Quick, perspicacious, acute, sharp, we can usually do whatever we turn our mind to.  We collect knowledge like other people collect stamps, we thirst for it, we long for it.  Any interest requires hours of extensive research, finding everything out, knowing everything.  The only problem is those interests don't always align with what a teacher tells us to think or do, or match the current thinking from the majority or some so-called experts.  Ah well.  Oh, and we often have a photographic (eidetic) memory: Lara does, I don't.

One thing Lara excels at is striking up conversations and making new friends.  Wherever we go she will engage new playmates in chat, find out about them and have a great time.  Unfortunately, some schooled in our questionable social norms will look at her blankly, saying they can't play with her because they are a different gender or age, or because she is not in their [closed] friendship circle.  Lara just moves on to someone else with her habitual, undented enthusiasm.

On the other hand, I struggle to strike up conversation.  I find small talk of little interest.  I can turn it on for social or business events, I can be an expert on something I'm interested in, but put me next to someone who wishes to discuss The X Factor or Strictly, who expects me to know who 'celebrities' are, or some other aspect of popular culture and I glaze over.  I don't get YouTube or Pokémon or reality TV, and I have absolutely no interest in making idle chitchat about any of it.  Next!

Told me 11 months ago that it's your birthday tomorrow?  You'll get a card or a message or flowers.  Told me what perfume you liked in February, you'll probably get it for Christmas.  Actually, now, no.  I've forced myself to scale this one back over the past decade or so, because it turns out others aren't so generous or thoughtful.  That huge expensive box of goodies I posted when your baby was due?  Thanks for the pound shop bath book we got the following Christmas!  (And for never even saying thank you for the box.)  The cards and expensive presents I always sent you?  Thanks for not coming to my daughter's Christening!  No, you didn't need to reply to the invitation, of course not.

For years I crossed counties, even countries, when friends or family needed me.  I turned up to all their events, whether they were celebratory or sad, always phoned and wrote, always sent cards and presents.  When it turned out it didn't work the other way, a lot of friendships and family relationships bit the dust.  Why would I?  I may be an autie, but I'm not an idiot.

Ah, taking what you say literally.  Yes, this one is still a problem.  If you say, I'll phone you on Saturday, I do genuinely believe you'll do that.  A couple of months ago my friend said she'd let us know when she was in the New Forest on holiday so we could meet up.  Great, don't see them often enough, it's nearby and somewhere we spend a lot of time, we'll be there.  Her holiday came and went, and we heard nothing.  When I mentioned it, she'd forgotten all about the conversation, it was just a passing comment.  To me it was a definite, and I was very upset.  Cue anger for a week or so, then tears for a week more.

Oh, that's the other thing, our reactions to things aren't the same as yours.  They're not wrong or bad, they're just not the same.  Lara's meltdown because we brought the 'wrong' crisps to the picnic?  Normal.  My upset because a plan turned out to be just an off-the-cuff remark?  Normal.

The problem is, when you feel like this, the world lets you down, a lot.  People don't always think, people aren't always thoughtful, people don't always accept you for who you are.  They don't get that the lights are too bright or the machine over there is emitting a low hum that is so distracting you can't hear what they're saying.  They don't understand that the wet food shouldn't have been touching the dry, or that the texture of the soup is all wrong and you want to throw the entire bowl at the wall.  They don't know that your sleeve is slightly too short or your sock seams rub, that your shoes feel like lead weights and that song is familiar if only you could remember the title and where you first heard it...  Sorry, were you talking?

Ah that's a tricky one too.  Despite all the distractions that crowd in demanding attention, you're trying so hard to listen that it looks like you're staring.  When it comes to speaking, you have so much to say that conversation can be one-sided, or you interrupt because you can't hold the sentence you've been practising in your head any longer.  Or you have the overwhelming urge to correct people.  They don't like that.  Oh, and you do know there's a right way to do things, and lots of wrong ones, don't you?  If I go quiet or walk away, what you're doing or saying is probably one of the wrong ones.  Sorry.

I've had decades practising controlling and overcoming this stuff, and I still can't a lot of the time.  I still struggle to understand why people aren't the same as me.  Lara's six.  She doesn't get why she wasn't invited to the party, why the friend disappeared after a few playdates (probably because of her mother finding me odd), why the kids in the playground don't want to play.  Most of the time she shrugs it off, it happens so often, but sometimes she howls and cries, and tears at her hair and her body, calls herself stupid and asks why.  Why wasn't she invited?  Why don't the friends stick around?  Why didn't she see so-and-so when they said we would?  Please spare a thought.

It's hard, especially seeing her go through it like I have.  We carry on, we try to get a little bit tougher, to remember people don't always care or think, or even know.  It's hard.  But you know what, the best thing our little autie has is me, because I can see it and relate to it, and say "yep, me too!"

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  1. Thank you so much for this post! Since I was a child I have had depression and anxiety, found it impossible to make friends and felt I didn't fit into society. As I've got older, people just think (and tell me!) that I'm weird, but recently I've been exploring Aspergers, only to reach a dead end because there is no where in my county for a diagnosis. I'd love to know if I do have Aspergers because I think it could actually help me, just to know that I'm not just weird, and I'm not not fitting in on purpose as some think.

    1. Sounds like you're definitely in our 'weird' gang! It would be so much nicer if the rest of the world could see and accept difference, rather than labelling us. I still get it from people, and see my daughter getting it, so I'm afraid I am very un-British and take the world on when they point/laugh/criticise. This is the way we are, and it's normal. Deal with it.

      Someone recommended a couple of books to me, might be worth a read:


      Let me know how you get on. Sending love and support through t'Interweb... Lx


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