I am the director of an Early Intervention agency and until recently was its primary Autism Spectrum Disorder (ASD) evaluator. I am a bilingual child psychologist and have been diagnosing and ruling out ASD in children below age three for several decades. We’ve seen ever-earlier diagnosis (down to age 12 months or less). We no longer label children as mentally retarded, but see increases in the ASD label and its many subcategories. Treatment options and the relative popularity of each continue to be debated. The possibility of curing individual children, the definitions of “cure,” and the reasons to use just one treatment vs. a sampling from several are endlessly argued.
I try to be open-minded, but I feel strongly about certain criteria for appropriate evaluation of very young children. First of all, a toddler should be evaluated in a familiar setting (or two settings if the child spends lots of time at daycare or grandma’s house as well as at home). Secondly, the appointment time should be chosen to suit the child’s needs, not those of the evaluator. The child should be well rested and well fed and should not have spent the previous 90 minutes in a car in stop-and-go traffic. In addition, the professional should spend enough time observing and interacting with the child to convince everyone that a good sample of the child’s everyday behavior has been obtained. When working with a young child, the evaluator should use a variety of toys and other items, offering lots of opportunities for the child to initiate and respond to social interaction, make demands, and communicate via eye contact, gestures, and vocalization.
If the parent announces at the beginning of the session that the child has been up all night (uncharacteristically), is getting over an illness, or seems to be developing one, the evaluation should be postponed to a later date. Many times, parents are reluctant to reschedule an evaluation, either because they fear they’re inconveniencing the evaluator or because they’re so anxious about the procedure that they want it to be over with at all costs. The experienced evaluator should insist on the postponement if the child is not healthy and comfortable. Similarly, if afterward the parent says the child has not behaved as usual, it may be necessary to schedule a second visit.
It does no good for parents to feel that their child’s ASD diagnosis is suspect because it resulted from a 10-minute observation in an unfamiliar professional office during the child’s usual naptime and after a 45-minute waiting room stay. These circumstances offer too many reasons for a parent to discard the diagnosis and reject appropriate treatment.
Though some people view ASD evaluations of children as young as 12 months as ridiculous, these evaluations do occur, and sometimes they result in legitimate diagnoses. The only one-year-olds I’ve ever been asked to evaluate all have very knowledgeable parents, some with graduate degrees in psychology, special education or speech pathology, and others with young family members with ASD. Many of the usual evaluation instruments cannot be used with children who are very young or low-functioning. However, the DSM (Diagnostic and Statistical Manual of the American Psychiatric Association) lists the agreed-upon criteria for a diagnosis of ASD, and ultimately, these criteria can be used with even the youngest children. It is not easy, technically or emotionally, to decide that a 12-month-old has ASD, but sometimes the characteristics are so apparent that a diagnosis is inevitable. Of course, if the evaluator is not sure, the conclusion should be, “Not sure,” and a re-evaluation later or a second opinion from another competent professional should be suggested.
The best reason for putting a family through the anguish of having their baby diagnosed with ASD is that the result is treatment, and nowadays we have treatment with proven effectiveness. Parents make all sorts of choices – this treatment vs. that, several treatments vs. just one, evidence-based vs. not. I feel strongly about the following criteria for appropriate treatment. First of all, the professionals and the family should work together. This does not mean that the parents should necessarily take on the role of special education teachers, working with their child just as the providers do. Here’s an example. A two-year-old girl had learned to point at desired objects, after many weeks of work on the part of her teachers. On Friday afternoon, the parents agreed to insist on her pointing to make requests, though the little girl had done so only for her teachers until then. That weekend was emotionally wrenching for the whole family; the child resisted in every way she could, but her parents held their ground, and finally, by Sunday night, that child was pointing consistently to ask for things. The parents did not teach pointing the way the teachers did, but they did insist on their daughter’s using what she had learned.
The other treatment criteria I endorse are that the underlying philosophy and methods should make logical sense and that they should be supported by research evidence. There is so much evidence favoring applied behavior analysis (ABA) that it is clearly the first option to be considered. Goals are broken down into small steps and the child gets positive feedback for correct responses. Slower learners need more repetition, and faster learners need less, but each child moves to the next step after showing mastery of earlier steps. Objective data, available for inspection, indicate where there has been progress and where more work is needed. Generalization is built into the program; the child works with a variety of materials, in a variety of settings, and even with a variety of teachers. I do not know if ABA is always the best approach to use with every child, but I have seen wonderful progress with this approach.
I urge parents who are worried about their young children’s development to seek evaluation, rather than waiting and seeing. If your child is doing fine, you will be told so, and you can then relax. If your child has significant delays, treatment will be offered to help the child reach his or her potential. In either case, you and your child will be better off than if you simply listen to the reassurances of well-meaning friends and family and do nothing while your anxiety increases.
Marion K. Salomon & Associates, Inc. serves parents and their children birth to 35 months through Early Intervention (EI), preschoolers through each school district’s Committee on Preschool Special Education (CPSE), and school-age children through each district’s Committee on Special Education (CSE). For more information, please visit www.mksalomon.com.