Gifted Issues Discussion homepage Forums Twice Exceptional Compensating for AS?

Edited

I am fairly sure that an ASD diagnosis never goes away. What might go away are visible manifestations.

The big thing for us with AS is social interactions. The thing is, from what I have read it is something that can be compensated for if the skills are taught -- the child with AS can then consciously pay attention to non verbal social clues and consciously apply the correct answer. The more intelligent the child, the easier it is to do (although it does remain hard work).

I am surprised that the person who evaluated your son didn't go and observe him in the classroom. I will also confess that reading our report I felt like our psychologist had deliberately chosen to put the worst possible spin on our son's behavior. That said the diagnosis is a fit (looking back, it might even have been a fit for me, although I am still unclear on the difference between AS and gifted -- and yes, I have read that document in the resources five times already). Or it is for now.

Oh, and take everything I say with a grain of salt. We got our diagnosis less than 6 months ago, and from the test results our son is not gifted.

I suggest reading Different Minds, it discusses AS, giftedness and NVLD.

MomtoMrQ: Did the quirks/symptoms really "melt away?" My 8 year old PG Aspie appears NT to a casual observer because of all the therapy he has had and his own self awareness that has been developing. I wouldn't say my son's symptoms have melted away, but he does compensate very well for them. They will never go away completely and in all situations.

I wrestled with this a year or so ago when he was first identified as PG. (We were backwards: diagnosis of autism before age 3, then ID'd as PG at age 7.) I read about all the PG quirks and overexcitabilities and thought they explained DS more than an ASD. But for my DS, it is his social naivety (even complete social blindness at times) that impairs him. The other kids are light years ahead of him in that field. He can fit in superficially and especially in structured situations, but the difference is there when he is closely observed. For the most part, it does not affect him during the school day because that is so regimented. And he is lucky to have a best friend to do things with outside of school.

I decided that I would keep the AS diagnosis last year even though I was not convinced that it was real because it permitted him accommodations of movement time, special seating, therapy. Now, I'm back to realizing that it really is AS and PG-ness. I know there are things I won't be able to tease out...which is this behavior: AS? PG? And in the end it doesn't really matter. He is a supremely happy kid, yay.

My dd (13yo) has been diagnosed both PG and AS. We frequently get "oh, really? I'd never guess!" about her AS diagnosis, but that has a lot to do with a couple of things: first, that she's learned to "pass" pretty well, and 2) that she's caught up with a lot of her delays. There's simply not as much difference between ten (which is how I see her, socially) and 13 as there is between, say, 6 and 4.
Too, she waffles back and forth. We'll go for weeks-- months, sometimes-- when she looks pretty typical and I wonder about her diagnosis. Then she'll have a week when she is constantly letting her little Aspie flag fly. I've heard the same from other parents of teens with AS.
I personally wouldn't revisit the diagnosis until after fourth grade. Better to have it and not need it, IME, than to need it and not have it-- and if he truly is on the spectrum, fourth grade is usually the crunch year.
I don't know if this is helpful, but it's our experience.

It is typical that a child's AS behaviors seem to deviate from the norm in a more pronounced way as they get closer to school age. Before that, the parents are compensating more for the child's quirks, and the child is at home more.


It isn't usual for the diagnosing doc to do a school observation (they do sometimes, but it's uncommon).

What testing did they do, and did they get questionnaire-style input from parents and preschool/school teachers?

When our DS was diagnosed at age 5, the battery included:
Stanford Binet 5 (cognitive)
Woodcock Johnson III (academic achievement)
WIAT-II Word Fluency (academic achievement supplement)
Children's Memory Scale (memory)
VMI-V (visual-motor integration)
NEPSY Social Perception (social awareness/understanding)
ADOS (autism diagnostic observation schedule)
Vineland (adaptive behavior - parent report)
PDDBI (ASD characteristics - parent report)
CBCL/TRF (general behavior - parent/teacher report)
PLSI (pragmatic language - teacher report)

Of these, the ADOS, the Vineland, and the CBCL were the most important in diagnosing the AS. The PLSI was also useful.


Without new quirks being added in? Do your DS's teachers agree?

Our DS definitely has changed a lot over time, and has had lots of remediation of his deficits to the point where they are often harder to see. People with AS learn and grow. He has shed some quirks and had some new ones appear.


In what ways is he still marching to his own beat? Are those ways acceptable to teachers and peers? Is he engaging in truly reciprocal conversation that shows awareness of others' thoughts and feelings (not just requests for information)?

AS symptoms usually get better over time, but not usually this quickly. The social problems turn from being egregious to more subtle (failing to make inferences about the characters in reading fiction, for example, rather than overtly offending peers). But they remain an important, lifelong deficit that needs to be compensated for if the person wants to fit into social norms and customs.

DeeDee

First, it is wonderful your son is doing better. I understand your frustration with wanting to have clear cut answers and not getting them. The line between PG+AS or PG+just a bit quirky can be a murky and difficult one. Evaluators can just go on what they have in front of them but it may not be a complete picture. You mentioned you thought NLD was a better fit. In what way?

I agree a child doesn't grow out of ASD but it may be easier to tell as they get older whether or not it is an accurate diagnosis. As they get older they may get improved coping strategies and some periods of childhood may be easier than others. Something disruptive - like a move, a change of school, a death in the family - may reveal they have matured or that they have not. The social dynamics at age 7 or 8 are entirely different than they are at 13 or 14. There can be a reemergence of problems as social expectations get higher and rules are more subtle and difficult to understand. I would also keep in mind that the experience of Asperger's is not just a social one, but also one of emotional understanding and again that gets more complex as kids get older.

If you are seeing someone who understands PG kids and they would like to reassess, I would do so. I would be very honest about how you felt about the last evaluation and share your current concerns. If your son isn't struggling now, maybe leave it six months or a year and do it then. Personally I would want to entirely take it off the table without another assessment. I say this because I've seen too many PG kids with AS really stumble as they hit middle school or as they try to transition to college. If there were still subtle issues there I'd want to know what sorts of supports the child might need.

Personally, based on extensive - but perhaps slightly dated - reading, I wouldn't go after a NVLD, unless it is a recognized and accomidated disorder according to your local school system. The bottom line on NVLD - based on my reading - is that it is a collection of challenges that flock together that are treated individually. So, from a practical point of view, unless the school system is willing to make accomidations, one treat a NVLD-diagnosed kid with speech issues, fine motor and gross motor issues the exact same way you'd treat a non-diagnosed kid with speech issues, fine motor and gross motor issues: speech therapy, OT and PT. Each of the issues is either clinically significant on it's own or not. Not every kid with NVLD has all the potential weakness. My guess is that your kid - being PG - gets jokes and, at least to some degree, gets metaphorical speech. If he can tell when a person is being sarcastic or not, then he's doing really well.

AS is a Developmental Disorder, that means that with time and effort, all people with AS make progress, some more than others. Some probably never make enough progress to 'pass.' Many others do, and having a PG brain is certianly a potentially big help if the individual is motivated to catch up to normal. There are also some Executive Functioning strengths in planning and perseverance that can be leveraged if present. I'm thinking about Temple Grandon - she's come so very far, yes?

On the other hand, the thing to remember is that as your child ages, the bar is being raised all the time, and while it's great that he's caught up for now, this doesn't nescessarily mean that he won't lag againg when the next challenge presents itself (yup, I'm thinking middle school and hormones and the behavior of other kids under the influence of hormones.) Look up 'Residual AS' for more on people who 'outgrow' their AS.

Personally, I think that when a child is PG, then 'all bets are off' regarding prognosis on any other challenge that they may encounter. I think that with PG, other diagnosis nearly always have to be 'streched' to fit a PG kid. I say, develop 2 perspectives and become really good at switching between them:
1) Wow, isn't my kid amazing for being able to do so well with even though he has this serious challenge.
2) Nah, he doesn't really have X, no limitations on his potential, he's just on his own developmental path.

Hope that helps,
Grinity

Could you elaborate, please? This does sound a bit like my son. What do you mean when you say that he's naive and they are light years ahead? He's 8, right? What does this look like?

The superficial fitting in... hmmm... I'm wondering if that's what's going on. What exactly does 'supeficial' fitting in look like? I feel as if I've always superficially fit in, too.