"Pervasive Developmental Disorder": Not a Cop-Out Diagnosis

The diagnosis of "Pervasive Developmental Disorder - Not Otherwise Specified" is not very descriptive and sounds like a catch-all diagnosis. However, it is not.

To give you an idea of what it is, it is also sometimes called "atypical autism." It is a condition where most of the symptoms of autism are present, but not all of them.

There were a lot of clues along the way that there was most likely something amiss with my son (who is now 5 years old), but I kept hoping that I was imagining things. I told myself he was just really unique and was developing at his own pace. Which is true on its face, but it was also an indication that something was wrong.

All of his milestones came later than normal. And with each milestone, the delay was slightly increased (almost as if the delay is by percentage, according to how old he is). He couldn't sit up by himself until he was about 9 months old, he didn't take his first steps until 13 or 14 months old. He never really "babbled" as babies do, and his first words came some time between 1 and 2. His first instinct has always been to see conversation as ritual, rather than communication. And he has always exhibited something called "echolalia" (echoing what you say instead of seeing it as communication and responding to it).

As late as age 4-and-a-half, if I asked him what we did at the park today, his answer was "the park." If I asked him what's wrong if he got hurt, his answer was "what's wrong." You get the idea.

In addition to the milestone delays and language delays, he has exhibited many of the other symptoms which go along with autism: lining things/toys up obsessively, having sensory processing disorder (he under-processes information and stimuli), bites himself, spins obsessively (without getting dizzy), hand flapping, couldn't pedal a tricycle until he was nearly 5 (a classic symptom), is catastrophically upset by change in routine, doesn't play with toys as they are intended to be played with (nearly 100% of the time), tantrums, not responsive to normal teaching methods, obsessive attachment to objects, extreme over-activity, poor development of gross and fine motor skills, at times seems deaf (unresponsive) even though his hearing is fine.

The only symptoms he does not have for a full diagnosis of autism are the symptoms of being socially aloof, not making eye contact and not wanting to be held or cuddled. As horrible as I feel about his problems, I thank God that he is emotionally there and that his personality is there and that he is able to receive demonstrations of love and caring.

The problems that come from PDD-NOS are many. Learning and developmental delays affect EVERYTHING - not just learning to walk or learning to read in school. He is only about 10% potty-trained at age 5, even though we've been working on it for over a year. He cannot dress himself, though he can help. He cannot bathe himself, though he can help. He is still really struggling with forks and spoons, and prefers to use his hands to eat. He still really struggles with discipline.

PDD-NOS is somewhat invisible to people who are not around him a lot. A delay in learning also means a delay in learning to BEHAVE. And people in grocery stores and other places in public do not understand this and can be very judgmental. Yes, a five-year-old should know better than to behave "that way" in public. Yes, a five-year-old should be able to be corrected by a few stern, parental words of correction. But that is speaking of a NORMAL five-year-old, not a developmentally delayed one, like my son.

People see him misbehaving, and see him not responding to my admonitions and assume I have not instilled in him discipline and the need to obey. But the problem is that learning to behave in public is like anything else - it's a process. And with him it is a VERY LONG process.

His first instinct is to see my verbalizations as ritual as opposed to communication and repeat them. So he will tell me I'm going to get a time-out. But he is not really telling me that - he is saying what he thinks I will say. It has not occurred to him (until a few months ago, actually, we are finally making progress) that he will get a time-out when I tell him he is getting a time-out. For him, words did not lead to actions in his mind, even though the actions had followed the words every single time.

He is slow when it comes to language and development. But you cannot explain this to strangers at the grocery store. You simply have to endure the judgment. Even a few relatives we aren't around very often don't really understand. That is part of the double-edged sword of this condition. Yes, I am extremely happy he does not have the social disengagement that a child with full blown autism has. But his charming personality and chattiness and friendliness just make him appear perfectly normal. So when behavior and discipline problems crop up, he simply seems willful and "bad," - and again, the misunderstanding and judgment kick in.

So what is the prognosis for my son at this point? Well, it's hard to say, as each child is different and almost no one wants to speculate when I ask. My personal hope (and opinion, really) is that if it is pushed hard enough, the language will eventually completely creep in and be seen fully as COMMUNICATION. And he is so (incredibly) smart in other ways that once the language has kicked in, everything else will just fall into place. When I speculate this out loud to his teachers, therapists, specialists, etc., I am usually met with no words and a bit of a pitying look. That bothered me at first. My internal reaction now is, "We'll show you."

That hope is the all-important key to forging ahead and doing the work that it takes to deal with this problem. And it is an incredible amount of work and takes a toll on both of us. Dealing with a five-year-old who is not potty-trained (he is going to grow out of Pull-Ups pretty soon here, plus they are expensive), dealing with the messes, the tantrums, the judgments, seeing him struggle, seeing him have increasing difficulties making friends as the stigma of being the "Special Ed" kid kicks in as he gets older, all the ritual, all the exhaustive ritualistic conversations, trying to teach him something for months that is normally learned in a day, and so on, dealing with all of that would completely sap my will and his without hope.

Fortunately, for him, hope comes naturally. For me, I just have to look at him for all the inspiration I need to press on.