PDD-NOS: The Catch-all and The Catch-22

My oldest son, TJ, is diagnosed with PDD-NOS.  This is basically a catch-all diagnosis that means he has many of the autistic traits, but not enough to diagnosis him with autism—although, PDD-NOS is on the autistic spectrum, so he is autistic.  Confused?  Yeah, so am I.

Children with PDD-NOS are often mainstreamed in regular classes, like my son, and they tend to blend in pretty well with the general population.  If you didn’t know my son was autistic, you probably wouldn’t pick up on it.  He doesn’t openly spin around anymore, he gives fair eye contact, doesn’t line up objects anymore, doesn’t repeat random phrases much…pretty normal kid on the outside.

What people can’t see if the Catch-22 of PDD-NOS.  TJ has a hard time with the little things in life, like using a knife or controlling the temperature in a shower.  We recently ran into a problem with him and the changing of toilet paper rolls.  He threw one away when there was still plenty of tissue left.  I can’t tell him to use a roll until every piece is gone or he will take this literally and use every scrap.  I can’t say to use it until most of it is gone, because he will figure that when it is down to 1/4 roll, that most of it is gone.  Instead, I need to wait until a roll is empty and show him what it should look like.

TJ is going to middle school next fall, so we have to look at how to prepare him for that.  We will be having him pick out a combination lock for his school locker soon.  He will practice his combination everyday and to simulate the stress of opening your locker between periods, we will have him open the lock during hurried moments at home (say right before we rush off to church). 

He still struggles with anything more that a two-step command and needs most things broken down for him.  He still “forgets” something we have trained him on a million times.  Every time we go shopping, we have to tell him not to touch all the shelves as he walks by (he likes the feel of it) or not to lean on the cart right in his brother’s face (this bugs TL and he will take a swipe at TJ).  I have yet to figure out why going shopping gives TJ temporary amnesia, but I think it might be a sensory overload.

He also does not understand the importance of being polite or discrete when we interact with each other.  He will repeatedly make a comment like, “Why do they put signs in Mexican, when we are in America?” right when we are standing in a Mexican restaurant (and of course surrounded by Hispanics, who are now glaring at us).  Ethnic differences have been a real challenge for him, which is baffling, considering my husband is one half Portuguese and a quarter Korean.  But, we work on this—one situation at a time.

All children need to be trained in some of the “little things,” but most of them can learn the lessons quick and move on.  With TJ, it is a daily battle of learning the way the rest of the world works.  When you see TJ and how normal he seems, just think about the hours of training he has gone through.  Every thing that we do without thinking, TJ has had to spend hours learning.