Wednesday, 20 November 2013

Homeschooling My Gifted Kid, Part 3: The Twice Exceptional Wrinkle

In this third part on our convoluted journey to homeschooling, I'd like to talk about what twice exceptional means - and a bit about what it feels like to parent such kids!

This is not meant to be a definitive guide for people trying to discover more about twice exceptional kids. This is just our personal journey, and a few of the curious signposts along the way.


What is Twice Exceptional?

Twice exceptional refers to kids who are gifted and disabled. It can be a physical disability, but more commonly refers to an 'invisible' disability, e.g. autism spectrum disorder (ASD), aspergersdyslexiadysgraphia, dyscalulia, dyspraxia, SPD, ADHD, bipolar disorder and many many others. In many ways, it's like they're going out to bat and can only score 0's or 6's. There's no nice, safe middle ground. It's a wild ride honey.



All Over The Place

IQ tests for these kids are often all over the place as well. They will often have both ridiculously high scores in some sub-tests - and incredibly low ones in others. Sometimes though, the 'lows' maybe high compared to the norm, but still wildly different from the rest of the scores. In fact, if there's a difference of about 20 points between sub-tests in the WISC (for example) the testers can't even give a Full-scale IQ (FSIQ)!


Another problem can often arise when the 'highs' hit the ceiling of the test, so the overall score is deflated (if a score can be calculated). This can often cause problems for kids trying to get accommodations for giftedness and disabilities (i.e. Individual Learning Plans) because these kids don't appear to be gifted or disabled enough.

Twice exceptional kids are often able to compensate for their disability in lower primary grades using their giftedness to find novel ways of learning. But they aren't necessarily learning what the lessons are designed to teach. Eg. The kid with dyslexia and an eidetic memory might learn to memorize all phrases in 'read aloud' books. They can't read, but they know what to say on each page because they memorized what the other kids and the teacher had previously read. It's entirely possible for the problem to be unidentified until upper primary, when the child will need to read for comprehension.

This kind of self-accommodation can be incredibly stressful for children and can lead to behaviour problems, burn-out and melt-downs.

Aspie and PG - A Hard Mixture To Separate

I talked a little bit about mis- and dual-diagnosis of PG kids in my last post. But today, I'd like to talk about how incredibly hard it can be to diagnose some of these conditions, particularly if your child is PG.


One of the truly challenging ones to diagnose correctly is Aspergers in PG kids. This is because in most circumstances - they can look identical. Check out this link which has a nifty table comparing PG to Aspies - not a lot of differences. Aspergers in PG kids also has subtly different characteristics to 'standard' Aspergers - this is a great non-technical article explaining Gifted + Aspergers differences from Hoagies Gifted. This one from Eric is also great.

Though difficult, there are studies on how to tell the two apart. The sample-size is not large (understatement!) - but this study, by Susan G. Assouline from the University of Iowa, put two girls, one PG, one PG + Aspergers, through a complete battery of IQ + ASD tests. They were able to identify their conditions correctly - but the deciding factor between the two girls was that one had difficulty in social interactions, the other a disability - only identified with the ASD tests. Otherwise their results were virtually indistinguishable.

So the next time a non-specialist in ASD suggests your PG child is Aspie, take it with a grain of salt - they maybe right, but the differences are so hairs-breadth close it needs a darn specialist to identify correctly. Though as a very rough rule of thumb, if your PG child can play with other HG+ kids their own age, they're probably fine. Probably.

This whole issue is actually doubly difficult for us, as C is already diagnosed with SPD and idiopathic toe-walking (two of the diagnostic criteria for ASD but also for many other conditions!). As well as all the therapies and surgery necessary to treat those conditions, we're currently also working the poor kid through all the medical tests necessary to confirm/deny a diagnosis of cerebral palsy. It's a fun-house, believe me. And we have one incredibly brave and patient boy.

With all of this, the PG + diagnosis soup inevitably leads to a lot of  'So, have you thought he might have Aspergers...?' 

Take a deep breath. Take another. Smile. Try not to rip off anyone's head - particularly not my own. Smile again, without teeth. Try not to spill out entire medical history to random stranger.  Say, 'Yes, we have. No, he doesn't.' Move on. 

Edited (August 2015): My son has since accumulated a lot of new labels. Yes, including ASD, Cerebral Palsy AND ADHD among others. NB. ASD can only be diagnosed by a qualified paediatric clinical psychologist because yes, PG does look a lot like ASD, not by teachers, GPs or specialists without expert knowledge in twice exceptional children. 

OK, so where were we?

Causation, Correlation or Coincidence?

So, is there a reason why PG looks like Aspies, and Aspies looks like PG? Who knows. Though there is some strong anecdotal data to support it - particularly the explosion of ASD diagnosis in Silicon Valley - 20 times the US national average. There is also a study done by Dr Joanne Ruthsatz and Dr Jourdan B. Urbach (from Ohio State Uni / Yale Uni) that was able to find a link between prodigies and ASD. A follow-up study is currently underway by Dr. Joanne Ruthsatz to see if there are any common genetic markers to link or differentiate between prodigies and their near relations on the spectrum. Undecided is an understatement here, I believe.

Edited (August 2015): See my later articles on the links between special needs and giftedness here and here.

Homeschooling, My 2e Child's Best Friend

With all of this, often the best option to help 2e kids is to tailor their environment to shore up the weaknesses, and let their strengths soar. For us, that means homeschooling. It lets us seamlessly link in his therapy with his school work - they complement rather than fight each other for space and time. C's got a maths lesson? He does stretches and heavy lifting first to calm the over-stimulated senses. Can't concentrate? Time to play 'Jumping Castles' on the bed. Boy, they both love that one. Reading time for J is 'cuddle' therapy time. Handwriting practice for C is making a card game. It's an active on-going process. And it is fun.

Help!

If you are looking for advice, information, or just commiseration, I have really found these to be very, very helpful:

2 comments:

  1. Or it can go the other way. PG kids can have a hard time getting the diagnosis of Asperger's because, at first (or second or even third) look, the traits for ASD overlap somewhat with PG traits (and I'd really not say that much). I think they actually overlap more with the perception of what it is to be PG and, likely, what it means to have an ASD.

    My son's diagnosis of ASD came three years after he tested as PG. By nine, when he was finally diagnosed, all we felt was relief. So many people looked at him from age 4 to 9 -- a psychologist, a play therapist, his pediatrician, a developmental pediatrician, OT, PT, a vision therapist, and an optometrist. The optometrist mentioned a developmental delay, the psychologist saw a PG kid, the therapists were all wowed by his intellect. He was so verbal, how could he be on the spectrum? Those who saw him regularly had no doubt. And at nine, the testing psychologist from three years earlier finally got it. From there on, there's been no doubt. There has been access to better care specific to his needs.

    FWIW, I'm not saddened or disturbed by the ASD diagnosis, and neither is my son. It was a huge relief for him to gain that insight into his struggles -- he felt like he belonged somewhere. I felt relief at finally having confirmed, and it's helped both his father and I, his brother, and others understand him and adjust expectations. It's provided a door to therapists who "get" ASD. Yes, we screen to see that people who help him out also appreciate the PG part. But the ASD and the PG are part of who he is. Both present challenges. Both offer him a unique way of seeing the world. I'd not swap out either if I could.

    I'd love what you're asking for: understanding that a person can be gifted AND have more going on. Thanks.

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  2. Thankyou so much for commenting!

    It is a hard road sometimes - but our wonderful kids ARE our kids. I wouldn't change them at all. At this stage, I honestly don't know if C is on the spectrum - if he is, it too would be a relief, because then we would have a therapy plan. Ditto with a cerebral palsy diagnosis. But there's an awful lots of tests for my boy to go through, and the treatment plans are so different...as well as future expectations. Figuring out where one diagnosis stops and another starts...does my head in some days :) . And having medical professionals who have never heard of condition A while treating condition B - when they overlap, even a little, is very frustrating!

    And sometimes trying to explain it all to people I meet its easier to just, well, gloss over the problems and struggles. As I have found, the acquaintance you chat to while waiting to pick up your kids isn't really interested in hearing complicated medical histories - lol poor dears.

    It's sounds like your family has been through quite the journey. I am so glad you found therapists who understand. It's nice to know there's a light at the end of the tunnel - even if feels like a distant light at the moment!

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