Write on.
Just received my copy of the Twins Trust Multiple Matters magazine featuring my Twins and Autism article which is nice!
Enjoy the full (uncut - I tend to ramble) version below.
Hi everyone!
Your illustrious editor has asked me to pen a few words for this issue regarding twins and autism – or Autistic twins if you like.
Now before you quickly flick the page thinking “Gawd this’ll be a wee bit depressing/preachy” (delete as applicable) let me just alleviate your fears by pointing out that unlike most Autistic overviews that seem to concentrate on the differences and struggles parents of autistic kids seem to have when interacting with their brood this’ll be a wee bit different.
You see out of the 5 folk living in our house, 4 of us are on ‘ver spectrum’ - as the cool kids call it.
So if anything that mysterious Autistic mindset I keep reading about is actually the norm around here.
Yup, to us it’s everyone else who is a wee bit odd.
Bizarrely though, for a condition that thrives on routine our podlings diagnosis were anything but, for example our twins Amelia and Embeth, had a formal DX at a scarily early 18 months, partly due to the fact that they were twins (it was a rare occurrence at the time) but mainly because every educational psychologist was a wee bit freaked out that the girls thought they were the same child.
They finally got them to realise that they were, in fact, two completely different individuals by using a set of huge mirrors and taking them out of the room one at a time.
I’ll never forget the day that they finally figured it out.
Being our girls they did this by crashing into each other in the hall, falling to the floor and just gazing at each other in shock and awe.
But as much as all the help was appreciated we did at points feel a wee bit like a science project.
Seriously at one point we couldn’t move for experts round our house, we’d go to the shops and there’d be 5 of them waiting outside when we got home.
We half expected Patrick Stewart to turn up in a wheelchair and whisk them away to his institute.
No such luck though as rather than kindly Professor X what we did have for their ‘final assessment’ was a terrifyingly abrupt woman wearing way too pungent perfume (seriously, the girls freaked out, stripped naked and stood on the window sill) who, after complaining that she couldn’t do her job with “all these children about” proceeded to tell us that the girls ‘condition’ was awfully serious and would affect them for life before stomping off to her car.
Oh she also said that Embeth would probably always be non-verbal.
Suffice to say we were both a wee bit taken aback.
Well actually my wife was, I just kinda shrugged and went back to whatever I was doing.
Which I now gather isn’t a ‘normal’ reaction but hold that thought as it maybe important later.
Luckily through all of this we had a brilliant pre-school home visiting teacher whom we will never forget (thank you!) and a fantastic local nursery placement (finally) who helped get the girls set for starting school.
And all this whilst expecting child no. 3.
Yup, we don’t do things by halves.
After the birth of our wee boy everything seemed to go smoothly, we were attending the frankly fantastic Scottish Centre For Autism at Yorkhill where I have to admit, my past-life experience in arts/play development was really useful (the staff said so), the girls were getting on great (in a non-verbal kinda way obviously) and boychild Cassidy was getting set to start nursery too.
Not going into too much detail (he’s not a twin – sorry Cass) the nursery raised concerns about his development so off we went to see the health visitor to ask about an assessment.
With our previous form you’d think it’d be plain sailing wouldn’t you?
Well you’d be wrong.
But that’s a story for another time.
Probably.
Back to the girls and as we prepared for ‘big school’ we were confronted with a few unusual problems.
For example how would the staff tell two ID – and non verbal – twins apart when the rules were that parents couldn’t attend the first day?
Badges didn’t help because they’d swap them.
Obviously having three children with special needs means fundamental changes at home – workwise I had to give up much of the work I was doing (bizarrely I was working for a group providing respite to families with, among other things, autistic children yet couldn’t get cover for certain times – go figure) so being utterly skill-less outside arts and play I offered to help out with school based stuff which is when one of the PSA’s got chatting to me about how similar I was to her Aspie son….
It was after meeting him (and effectively seeing myself as a teen) that I looked into maybe, just maybe the idea that I myself was on the spectrum.
My that sounds serious.
Luckily our doctor was as intrigued as we were so a few months later at the ripe old age of 43 I was diagnosed with Asperger’s and my entire life started to make some kind of sense and the entire dynamic of the house flipped to be totally Autie-centric.
And that’s the unique thing, you see whereas normally any support/research/help is geared toward having one Autistic child (two at a push) in a family – written/presented by non-Autistic experts to boot - and when language like ‘developmental disability’ or ‘deficit’ are used quite so regularly you can understand why parents can feel a tad overwhelmed or maybe struggle with their child's diagnosis.
My advice to them?
Just go with it.
Yes it can be frustrating and scary but it’s also brilliant and funny, try not to see everything in negative – clinical – terms either, for example when folk talk about communication difficulties or issues think of it this way – Cassidy is 14 and taller than me, he has about 150 words max but his favourite way of communicating is an ear-piercing shriek.
He doesn’t have a problem communicating – folk have a problem understanding him because it involves making an effort and leaving their comfort zone.
Oh and the thing about Embeth being non-verbal?
Honestly she never stops talking.
So if you have an Autistic child or see one of us in the street and you’re thinking that we’re a wee bit odd, or if you think it’s a shame for us just remember, 60% of the time we’re probably thinking the same of you.
The other 40% is probably taken up with trains or Star Wars trivia.
No, really.
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