Lost in the crowd: Growing up with pervasive developmental disorder

(Sharon Dominick Photography 2011 (iStock))

If you had met Timmy, like I did, when he was a chubby-cheeked 12-year-old, you would first notice his infectious smile.  You would never know he had a form of autism.

In fact, no one knew – including Timmy’s father, who was a single parent – and it would remain that way for the next few years.

Even when Timmy was diagnosed with pervasive developmental disorder-not otherwise specified (PDD-NOS), it was technically only a ‘subthreshold’ of autism –a diagnosis given to people who don’t quite meet all the criteria to be classified on the spectrum.

PDD-NOS, or more often referred to as PDD, was rarely heard of;  in fact, it’s existence in the medical world dates back about 15 years.

So at the time of Timmy’s diagnosis, no one quite knew how to treat it. And, since children with autism spectrum disorders usually benefit from early intervention when they are toddlers, Timmy’s diagnosis came about 12 years too late.

In May, PDD will cease to exist; it will instead fall under the broad umbrella of the autism spectrum disorder diagnosis in the new Diagnostic and Statistical Manual of Mental Disorders (DSM-5).

Since April is Autism Awareness Month, it’s time to give PDD some recognition for the many children and adults who are grappling with this disorder, as well as the parents who may be struggling to find out what’s causing their child to lag behind.

Signs of PDD

Like Timmy, parents of children with PDD may notice delays around 3 years old. He lacked the same social skills as other toddlers in his preschool class, and it was in kindergarten that teachers really took notice. Timmy couldn’t remember where the bathroom was, no matter how many times he was shown the location – something other kids in his class had no trouble with. For the longest time, he struggled to tie his shoes – a skill his peers had mastered – and he ended up repeating kindergarten, because he was deemed ‘too immature’ to advance.

According to the National Institute of Neurological Disorders and Stroke, children with PDD vary in abilities, intelligence and behavior. Some children do not speak at all, while others speak in limited conversation – and some appear to have normal language development.

Other symptoms of PDD include difficulty relating to people, difficulty with changes in routine and repetitive body movements or behavior patterns, according to the National Institutes of Health.

Like many children with autism, Timmy had difficulty with social cues as he grew up. He struggled to understand whether or not someone was telling a joke or being literal, and he often ended up feeling like he was being attacked or teased. It didn’t help matters that he was moderately deaf and had to wear bilateral hearing aids.

Actually, for many years, teachers would blame Timmy’s poor hearing for his problems.  However, if you spoke loudly enough and looked directly at him, Timmy had no problem understanding what was being said to him.  Yet he continued to lag behind his peers in schoolwork, had difficulty concentrating on the task at hand and often could not complete his schoolwork. He was constantly antsy, having difficulty sitting still for long periods of time, and as his friends matured emotionally, he didn’t.

When he was younger, it was easier to mask his limited social skills, but as he grew, it became increasingly apparent that something was different.

Most troubling for Timmy’s father – and even more so for Timmy himself – was his lack of short-term memory.

At home, if you asked Timmy to do more than one chore at a time – such as taking out the trash and making his bed – one of the two would not get done, because he simply could not remember both. Yet, he could remember specifics of a trip to Disney World that he took many years ago.

Unlike those with Asperger syndrome, Timmy had a low IQ.

A short reprieve

Timmy had his strengths: He was – and still is – an extremely gifted artist. Show him any picture, and he can draw it almost exactly like the original – as if he traced it. He can use a variety of artistic mediums – paints, charcoals, markers – you name it, the end result is amazing. He can work wonders with PhotoShop. Give him a complex video game, and he can master it faster than most.

At 21 years old, he is a great brother to his little sister, maybe because of his PDD. He can sit for hours watching Disney movies with her, and he genuinely cares about her.  You can see how protective he is of her, but you can also see the differences between the two – one, a little girl growing up and retaining information; the other, a little boy stuck in a grown man’s body.

Timmy has some obsessive-compulsive tendencies like many others with PDD.  He often latches on to one thing for many months. At one time, he was obsessed with “Seinfeld” – watching every episode over and over until he could literally memorize the scripts. Today, he watches “Everyone Loves Raymond” repetitively. Doctors say this is common for people with PDD.

Before his diagnosis, doctors performed multiple tests and scans – but every time, they found nothing unusual. No one could figure out what was wrong. A visit to a neuropsychologist (whose fees run upward of several thousand dollars – however, your child’s school district should be willing to pay for it), finally obtained a diagnosis.

His suggestions: Timmy should try anti-anxiety pills, avoid stimulating beverages and work with an individualized education program (IEP), the latter of which he had already been doing.

Unfortunately, when he remembered to take his anti-anxiety meds, they did not help.

A one-on-one aide was assigned to Timmy for high school.  She would follow him from class to class, as he often had difficulty remembering his schedule or where a specific classroom was; or she would help him with homework, assignments and tests.

This helped Timmy to thrive, and seemingly, life was better for him. He had his circle of friends, he even attended the prom and senior ball.

Life after high school

Then came the issue of what would happen after graduation. Could he survive at a local community college without the help of his aide?

Sadly, the answer was no. It wasn’t for a lack of trying, as he signed up for classes he knew he’d like.  The neuropsychologist suggested Timmy had selective memory, meaning if he formed a connection with something, then he could remember it.  This explained why he could remember how to play a difficult video game or what he did at Disney World all those years ago, but couldn’t remember where his math class was located.

In the end, his professors didn’t have the time to focus on one student out of hundreds.  Even in his favorite class, Graphic Arts, Timmy couldn’t remember what his assignments were or where he had written them down. When he tried to have conversations with his peers, he sounded stilted and awkward.

He preferred the solitary confinement of his room, sketching, watching his favorite movies and listening to music.

Holding down a ‘regular’ job didn’t work out, even after several attempts to work with disability agencies; it all came down to the memory problems.

Sadly, Timmy will likely never achieve ‘normal’ adult milestones – like getting his driver’s license, graduating college, holding down a full-time job or getting married. But that doesn’t mean other children with PDD can’t have different outcomes.

Timmy was diagnosed in his teens – long after his habits and traits had formed.  Although experts attempted to teach him coping mechanisms, his daily routine had been established – and PDD kids are wary of change. You can tell an average teen they need to do something for the betterment of their health, and they get it – but a teen with PDD won’t necessarily understand the ramifications.

PDD needs to be on the radar of teachers, pediatricians and doctors. It needs more attention, and if anyone suspects their child, student or patient has it – they should test for it. Early intervention is the best way to live with this disorder, especially with today’s technology.

Timmy isn’t just another face in the crowd – although he has become lost in the system. Those who care about him will continue to advocate for him and push him to be his best. Hopefully, if just one parent reads this, and can identify his or her child, writing this will have been worth it.