Friday, February 11, 2011

ASD and Giftedness: Twice Exceptionality on the Autistic Spectrum

Corin Barsily Goodwin

Mika Gustavson MFT

Editors' note: "Gifted" -- meaning a person of substantially above-average intellectual or cognitive abilities -- has various meanings and implications across the English-speaking world. In the US, education is publicly funded and provided from kindergarten (approximately age 5) through 12th grade (approximately age 18). There have been various federal and state programs and mandates addressing the educational needs of "gifted and talented" children in public school, which have generated various definitions and dividing lines.

One of the central concepts in the English-speaking world about "giftedness" in children is "asynchronous development" -- the child is in some domains developing in a range of normal for his or her age; and in other domains, is far ahead of same-age peers.

A key concept in "giftedness" is exceptionality -- the child who is gifted is rare -- "one in a hundred thousand" or "one in a million". A second key concept is "twice exceptional" -- a gifted child may also have significant barriers to expressing her abilities in the standard academic settings, such as a specific learning disability in the area of reading, writing, or math, or have other challenges such as ADHD or autism spectrum disorders (ASD).

In the world of the autism spectrum, much attention is paid to the behavioral and communications challenges inherent to the disorders. Because spectrum behaviors can be quite noticeable, they tend to come to the forefront of parenting and educational concerns. Certainly the spectrum behaviors may be in greater need of immediate intervention - they are more likely to create distress for the child and for others around her - but awareness of other differences must also be given due consideration.

Many children with Asperger’s Syndrome are of higher than average intelligence. In fact, quite a few fall into the gifted range. If your child is one of these, it’s important to understand what “gifted” means. (Hint: It has nothing to do with academic achievement.) Giftedness is a neurological difference just as is autism in its many flavors. The bigger picture includes not only academic potential but also the challenges of developmental asynchrony that can lead to an overlap with spectrum characteristics. The higher the overall IQ, the more likely there is to be a dual diagnosis. Distinguishing which characteristics belong to which diagnosis can be challenging, and occasionally useful as part of the process of understanding who your child really is.

One of the key questions you’ll need to answer is how one calibrates a “normal” range of behaviors. If you have a child who is twice exceptional - gifted, with another diagnosis such as ASD - it helps to learn what is “normal” for gifted as well as “normal” for ASD. When you have met one autistic child, you have met one autistic child. It’s the same for the twice-exceptional (2e) child: they are all different. Once you reach a point of diagnosis, you need to follow up with understanding of what it all means in practical terms. Are your child’s behaviors truly problematic, or do you find them disturbing because they don’t fit your mental image of how a child - or your child - should behave? Does the child need to change, or might they be perfectly fine with a different educational environment or an alternative set of expectations? As adults, we are more able to adjust our parenting or teaching style to meet them where they are than a growing child is able to become someone they are not.

It’s important to value our children as individuals, even if they are not the children we expected them to be. The tragedy of our society is the rush to services that are geared specifically at inculcating conformity as opposed to helping the child develop into the unique adult they will eventually become. We easily forget that the goal isn’t a well-behaved child but a happy, successful and independent adult. An intervention is deemed “successful” when the child appears to behave just like all of the other kids, but little attention is paid to the long term goal or the ramifications of forcing square pegs into round holes.

For example, one issue that drives adults to place their 2e ASD children in a social skills remediation group is the concern that their child must “learn to get along with his age peers.” But let’s deconstruct that: Let’s say the child in question is in 6th grade. He interacts successfully with the college-aged students who live in his university town, with whom he can connect intellectually and who behave appropriately with him. The child has difficulty, however, in relating to other 6th graders. Is the problem the child’s inability to interact with 6th graders - is this a useful life skill for anyone besides perhaps a 6th grade teacher? - or is the problem that the child has progressed directly to an adult level in that particular arena and really needs to wait for his age peers to catch up with him? Perhaps his age peers don’t understand his complex ideas, and can’t follow the level of communication that interests our boy. It may be that the rowdy jostling of the playground holds less interest for him than an in depth discussion of quantum theory and time travel.

Typically, this is a child who would be referred to a social skills group to learn to “get along” - which is a code phrase for learning to “act like all the other kids”. But who are we to say that every child must have a goal of being athletic, extroverted, and socially graceful? Not even every neurotypical child shares these traits; there is no need to hold them as standards for all. In the end, the child is developing at the pace that is right for them. If they need help, it should be provided; some children do benefit from social skills groups and no child should be left unable to function out in the real world. It’s important to distinguish between crucial social development and learning to be just like everyone else for the convenience of the adults in their lives. Children shouldn’t be put in a place where their asynchronies are frowned upon and they are made to feel ‘bad or ‘wrong’ for who they are - by adults or other children.

According to general development theory, children learn one step at a time, a little bit as they go. However, this is not a universal truth. For the child who learns in chunks, out of presumed order, or in a whole-to-part manner, imposing a sequential expectation on them is simply wrong. The damage done to a child who is held to unreasonable standards will teach them only that they are somehow less than all of the others, in need of extra help, and even defective. Meanwhile, by the time they reach 20 or 25 years old, no one will care if they learned the same skills in the same order and in the same place as everyone else -- only that they did, eventually, learn those skills.

In order to find what is driving your child and identify the issues underlying their challenging behaviors, or to understand what it is they are struggling to communicate, you must put together all of the pieces of who they are -- not just the ones that jump out and bite you. Don’t stop with the first diagnosis if it doesn’t cover all the bases. Consider suggested remediation in the context of the whole child rather than slapping a bandaid on a single behavior or set of behaviors. Trust your instincts as a parent. Ask why the child is behaving in a particular way instead of assuming it’s all any single label. Maybe it is... but maybe it’s not.