Diagnosis

We walk among you. We look like everyone else. We attempt to act like everyone else, a convention of ours, but we are not like everyone else. We are families of children with invisible disabilities.

We do not always recognize each other, but we have a password: diagnosis. "What's your diagnosis?" we might ask another parent. "Do you have a diagnosis?"

For the first few years of our children's lives, a diagnosis is akin to the Holy Grail. "We are still trying to get a diagnosis." "No one has made a diagnosis." Parents, especially those with older children, are the first to notice that something is not right. "She just wasn't hitting the developmental milestones like her big sister," someone says. "I could tell, too," replies another mother, "but the pediatrician has not made a diagnosis." Diagnosis is magic; it vindicates the parents. There is a name for the weird stuff, this absence of normality. It has been identified and studied and written about. It is not the parents' imagination or their fault.

Thais Tepper, the founder of Parent's Network for Post-Institutionalized Children, has said that when she brought her son home in the early 90s, she joked that he had "Romanian Adopted Kid Syndrome." It was later that she found out that his behavior had a name and a Diagnostic and Statistical Manual of Mental Disorders code--Reactive Attachment Disorder, which is typical of children in long-term foster or institutionalized care. These children have not had the opportunity in infancy to bond with an adult caregiver. Thais herself, identified RAD in her son after reading about it.

Diagnosis is a fair weather friend. Around school age, it becomes fickle. In order for your child to qualify for special education, you need a diagnosis. Too severe and your kid might serve an 10-year sentence in a very restricted class with minimal expectations. Too gentle and she's destined to struggle in a regular classroom, maybe with a bit of extra help like speech/language therapy or "pull-out time" for reading. If your child has ADD or an anxiety disorder, for instance, but it does not represent a learning impairment, or if your child is just not too bright, get ready, your kid does not qualify for any services! Unlike Lake Wobegon, where all the children are above average, school district administrators know that some kids have to be on the left side of the bell curve. Which is fine, unless it happens to be your child.

The line between MMI or MR (mild mental impairment) and LD (learning disability) may be extremely fine, but having one or the other sends the child down completely different paths. "We want a new diagnosis," a father says "We agreed that he was MMI when he was in second grade, but now he could function in a regular classroom. His therapist thinks his diagnosis should be LD."

If only a diagnosis was straightforward, but few of these kids actually look like the textbook case. No one exactly matches the DSM description. Many of these children appear ADDish or have wild mood swings. It could be ADHD or bi-polar disorder or depression or just moodiness.

Professionals talk about "autism spectrum," but is the spectrum a straight line or a Venn diagram? Does a child on the spectrum appear high-functioning or low-functioning somewhere on a right-to-left line, or in a pattern of maladaptive dots?

My own non-scientific method is to ask if a diagnosis is a "hardware" or "software" problem. A hardware problem, such as retardation or autism, refers to the limitations of the machine. A software problem, LD or attachment disorder, could be fixed, right? Upgrade the disk. Find a new program.

You might notice us out in public. It is permissible to introduce yourself by asking politely what my child's diagnosis is, or if I'd care to disclose it. "What is wrong with that kid?" marks you as an outsider.