The “A” Words

Jonathan at 8 months

The other day a friend of mine at work asked me if we had a “definitive diagnosis” for what is going on with Jonathan. I laughed. It appears THAT is not something that we are likely to get for a while. At first that drove me a bit crazy… but now I am actually quite OK with it.

When your child has a “language delay” of any significance, you start to hear a lot of the “A” words. There is the Big "A" : Autism. It is on everyone’s lips nowadays… the ‘disease d’jour. Then there is Little "A": Aspberger’s Syndrome. It is like Autism’s little brother…. Some of the aspects of Autism, but not all. Then there is the Everyone-Has-It "A": ADD/ADHD. Enough said. And lastly there is the No-One-Has-Heard-Of-It "A": Apraxia.

Of course, there are other terms and possibilities:
· Receptive/Expressive Language Delay
· Developmental Language Disorder
· Pervasive Developmental Disorder (aka PDD-NOS)
· Sensory Intergration Disorder
· Overly-Worried Parent Disorder
· Just a Late Talker

The interesting thing is that when the child is young (less than 3 years of age) it can be quite difficult to truly diagnose any of these. Now, some might disagree. But the truth is that many of the behaviors that are concerning at one stage of development are perfectly normal and acceptable at an earlier stage of development. In addition, the root purpose of a behavior needs to be considered. For example, recently Jonathan started ‘hand flapping’. Now, hand flapping can be considered a stereotyped motor behavior.. one of the diagnosic criteria for autism.

(http://www.cdc.gov/ncbddd/autism/overview_diagnostic_criteria.htm)

However, you have to put the behavior in context! Jonathan has difficulty with motor planning… he does not clap his hand in midline, for example. So when he is excited he will wave his hands. The purpose of his ‘hand flapping’ is not self stimulatory. He is excited! Other kids might clap! In fact, other normally developing two-year olds will ‘hand flap’. NORMAL! I believe we all have “self-stim” behaviors. Nail biting, knee-jiggling, finger tapping. The issue isn’t the existence of these behaviors… it is the intensity and the interference of these behaviors in other activities of daily living. Playing with just the wheels on a car is fun!!! But if that is all you do, and you will not be engaged in other activities, and you have screaming tantrums when you can’t spin wheels on a car…. That might be a problem!

The issue with diagnosis in a young child is that the professional doing the assessment needs to truly understand appropriate development, what is ‘outside the norm’ but still acceptable, and what is truly problematic. Some behaviors that are definitely symptomatic of autism at 3 years of age are not at 2 years. Understanding the path of normal development and how one delay (like language) can affect others areas of development (like social skills) is complex and highly dependent on experience and knowledge.

So, what do you do when you start down this path of diagnosis? For Jonathan, is this autism? PDD-NOS? Apraxia? Just a late talker? And what do these terms mean for Jonathan’s life? What do you do?

I have decided that it doesn’t matter right now. What matters is that I am sensitive to his needs… that I play with him in the way he needs…that we get him the right supports. Terms and labels will come on their own, but they will not define him. They can’t…Jonathan is far too Amazing for that.

Pia