Quirky Kids - Arriving At a Diagnosis

Excerpted from
Quirky Kids : Understanding and Helping Your Child Who Doesn't Fit In- When to Worry and When Not to Worry
By Perri Klass, M.D., Eileen Costello, M.D.

Once upon a time, most quirk)' children did not get assigned to formal diagnostic categories. They were called eccentric or odd and were humored as odd-balls or tortured as weirdos, coddled as infant geniuses or ostracized as misfits. We all remember such children from our own school days, and chances are, they attended no special therapies, took no special medications, and carried no medical or psychological terminology on their journeys through childhood.

Look around those same classrooms and schoolyards now, and you'll see a host of diagnoses. Any child who doesn't quite fit the mold is likely to receive intensive testing, leading to diagnosis and rediagnosis and, in turn, to an individualized program of therapies, home-based interventions, and possibly medications. This is, we have to believe, on the whole a good thing. We are no longer taking for granted that certain children, the ones who have a harder time, ought to be left to struggle on alone. They can benefit from careful attention to their strengths and weaknesses, from extra help at an early age, and from a more educated and understanding attitude on the part of the important adults in their lives.

As doctors, we sometimes tend to speak of "having a diagnosis" almost as if it were a special distinction. "Well, does he have a diagnosis?" "So after all that, did the kid get a diagnosis?" As medical students, we were rewarded for coming up with long lists of possible diagnoses-the "differential," as it is called in medicine-and then, even more, for coming up with the one true diagnosis.

But it's a different set of emotions and judgments when you set out, as a parent, to look for a possible diagnosis for your quirky child, to let a variety of specialists and experts quantity your child's strengths, weaknesses, and quirks and then perhaps offer you a name, a syndrome, a single formulation. There are a couple of very important matters to discuss specifically with reference to quirky children and diagnoses:

What does a diagnosis mean to the parent? Some parents see their children's quirks as wrinkles in development-personality variations rather than problems. Others, although grateful for help with whatever their children find most difficult, don't want any specific label applied to the child to explain those difficulties. Many fear-and with good reason-that a label may become a self-fulfilling prophecy, marking a child in the eyes of teachers and classmates and even family members. On the other hand, many parents feel a strong desire to give their child's quirks a diagnostic name, so that they can educate themselves, help the child as much as possible, maybe find other parents facing the same situation, and perhaps anticipate the problems that may lie ahead.

Many children will accumulate more than one diagnosis over time, as they get tested and retested and as they grow and change. Many quirky kids don't tit any single diagnosis. Depending on the child's age and developmental stage and on the orientation and training of the person doing the assessment, these children can receive many different diagnoses as they grow. Some diagnoses will fit for a while and then be outgrown, whereas others will continue to be relevant even as your child grows and changes. You may find yourself holding on to a particular diagnosis, not because it fits so well but because it helps you with the school system!

There is a great deal of what is called comorbidity with many of these conditions-meaning; that many of them overlap or occur in tandem. Depending on a child's age and what is expected of her at that age, different skills become more or less important, different problems seem major or minor. In kindergarten, for example, whether or not she plays easily with other children may determine how happy she is in school. By second grade, learning issues may have become paramount. As we get better at recognizing these complex syndromes, older children are being diagnosed as well. Often, after years of persistent, but not devastating, school problems or social issues, they find themselves given "official" diagnoses during adolescence.

In this chapter, we look at the array of specialists and diagnosticians to whom parents turn as they try to sort out their children's behavior and development and as they try to help their children over some of the hurdles encountered in the early years at home and out in the world. We will look at the ways that different specialists-with different training, different orientation, different assessment tools-can offer you different kinds of information, some more oriented toward practical everyday function, others more attuned to recognizing syndromes and making diagnoses. We want to clarify, before we start on the nitty-gritty of diagnosis, that we feel the point of all this-the point of the workup, the testing, the careful consideration of your child by multiple experts-is not to come up with the right label, the right name, the right answer on some cosmic medical-student exam. The reason to have your child tested is to help your child-and to help you help your child. Diagnoses are worth having only insofar as they point the way to reasonable and realistic expectations, useful therapies, and greater understanding.

Evaluating Your Child

You've decided your child needs testing by experts. You need answers, advice, and explanations. Where to turn?

In a perfect world, you would turn to an immensely erudite but also tremendously sensitive team of experts who would come to your child without preconceptions and take the time and trouble necessary to get to know him through and through. Their recommendations would be realistic and practical, and the evaluation, along with any necessary follow-up appointments, would be fully covered by your insurance. Our goal is to help you get all or most of what you need ... even in this imperfect world.

Early Intervention

Early intervention (EI) programs are available in every state, as federally funded services for children with developmental needs in the first three years of life. For children under age three, your insurance company may sometimes insist on an early intervention evaluation before it will pay for any other kind of testing. EI programs will bill your insurance company or, if you don't have insurance, will still carry out the evaluation. If there are delays or peculiar development in several areas, however, a more comprehensive diagnostic evaluation may well be in order.

School-Based Evaluations

You may find yourself beginning with a school evaluation, either because you think it will help provide some answers or because your insurance company requires it or because the school usually covers the expense. These school evaluations are often reasonable places to start, but we offer several cautions:

• The waiting lists can be long.
• The quality of the evaluators varies immensely.
• There is no guarantee that any one of them will have experience with the needs of the quirky child.

We have heard parents complain about school evaluations that seemed rushed-or superficial-or too highly directed at putting every child into one of a few categories. On the other hand, we have worked with plenty of gifted school-based professionals who have helped many families enormously. Certainly, the school-based perspective can direct the evaluation specifically at many learning issues that are vitally important for children. Another tricky issue is that when a child gets a diagnosis that requires extra educational support, the school is required by law to supply that support. With shrinking budgets for special education services, many schools are in no hurry to offer a classification that will maximize help in the early elementary years, even though such help may make a huge difference over time. All of this is to say that, although you may need or want to start with a school evaluation, and it may provide you with very helpful information, you may well decide to go further in your diagnostic quest.

Academic Medical Centers and Multispecialty
Development Clinics

As you move beyond EI-or alternatively, beyond the school-consider academic medical centers and multispecialty developmental clinics. From the insurance point of view, these are likely to require a referral from your pediatrician. This kind of evaluation should certainly be available in any major city and at any major academic medical facility, and your pediatrician should be able to refer you to the closest clinic. The evaluation should include speech and language; a neurological evaluation, which may or may not involve imaging studies (a computerized tomography, commonly known as a CAT scan, or a magnetic resonance imaging scan, commonly known as an MRI, of your child's brain); physical therapy and occupational therapy; and, if the child is old enough, neuropsychological or psychoeducational testing. Taken together, these assessments can provide a detailed and potentially helpful picture of your child's skills and deficits.