Some things don’t get easier with time and experience. Telling parents that their young child has autism is one of those things. Even after nearly 25 years as a developmental pediatrician specializing in the early diagnosis of autism, sharing that news with a family remains one of the toughest tasks I face.
A variety of factors contributes to the challenge. First, even in this era, in which autism is a household word, it is not unusual for me to give the diagnosis to parents who have not considered the possibility that their child has autism. Statistically speaking, the children we see at Albert Einstein College of Medicine’s Children’s Evaluation and Rehabilitation Center for these initial evaluations are very young—on average, 24 months of age—and the most common scenario is that the toddler is not yet speaking. The child may have been referred by the pediatrician or another medical specialist, or possibly a diagnostic evaluation was recommended by an early intervention therapist or a daycare provider.
A Difference of Parental Opinion
The parents may or may not share that concern. Maybe one parent is concerned but the other is not, noting that he, too, spoke late. While the parents may agree that the child should be talking more, the possibility that the child has autism, a lifelong condition, may never even have been considered. That difference of opinion means that at a parent conference, I can find myself sharing a diagnosis that comes as a complete shock to one or both parents.
Even when the parents are prepared for the possibility of autism, the session may involve extreme displays of emotion. Tissues are handy and generally needed. (I go through a box a week.) I’ve watched couples hold hands and draw close, seeking mutual support. Some parents have lashed out, screaming at me, at one another, at vaccinations and other things or events they believe may have contributed to the diagnosis.
A Lifetime of Change
At the session’s end, heartfelt concerns often surface, many relating to the child’s future: Do you think she’ll be able to go to regular kindergarten? To college? Will he get married? Unexpected queries regarding typical 2-year-olds, but valid ones for these parents who are in new territory.
And then the questions often veer to the potential stigma of the diagnosis on the parents or family: What should we tell our relatives? Our friends? Our older children? Do we need to tell the daycare provider?
I often feel as though I see parents visibly and viscerally struggling with a change in identity before my very eyes. They arrived at the office the parents of a toddler who possibly had language delay (delay being a term that implies the child will eventually catch up) and are leaving the parents of a child with a lifelong developmental disability. It is a new parental role—one they would never have chosen but have now been thrust into. They are crying and shouting due to their concerns about not only their child’s future, but their own as well.
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“… autism, a lifelong condition …” Well, recently Asperger has been “lumped” together with all “autism spectrum” cases in the new version of the DSM. However, though I agree in principle with saying that this is a “lifelong” condition, much like certain missing enzymes that force us to avoid certain foods (but we’re ok once we avoid them), I find it difficult to say to parents that this is a lifelong condition. There are indeed people I know who had been diagnosed (unequivocally be several university institutions and by specialists) as autists (though maybe “milder forms”) and who later learned to e.g. come to terms with their paucity of mirror neurons etc. and actually “function” very, very precisely, often in jobs in engineering or informatics. The reason I am queasy about putting it across as “inevitable” or “life-long” is that parent’s inner psychic “image” of their child makes a world of difference to his/her well-being. In the book “children with Down syndrome learn to read” a special education teacher tells the story how she had two Down children in her reading group and “since no one told me they cannot learn to read, I taught them”. Ever since this “watershed, Down syndrome persons have marched on from success to success: it is not unusual anymore for them to finish high school, many now get bachelor’s and master’s degrees and I believe there are storied about the first Down Ph.D.s Just a thought as how to “broach it”.