Every once in a while, I tell a family their child does not have an autism spectrum disorder, and they are disappointed. Usually it is an older child with social difficulties, but their early history does not support the diagnosis and their social cognition – their comprehension of other people – is too good. They may have some criteria, but they are not on the autism spectrum. Usually the reason for the disappointment is because the alternatives are worse – bipolar disorder, oppositional defiant disorder, conduct disorder. Usually it is something better suited to a psychiatrist than a developmental pediatrician. SOmetimes they think their child will get more services if they have this diagnosis. It is always an uncomfortable session, and I feel like I have to defend my diagnosis. Still, the parents are struggling with trying to understand their child, and I do the best I can to help them.
I always tell people it does not matter what label a child has. We could call it all “strawberry syndrome”. What is important is doing what the child needs. It doesn’t matter why a child has language problems, what matters is getting good quality speech and language therapy often enough to make meaningful progress. It doesn’t matter why a child has sensory processing and motor problems, what matters is getting good quality occupational therapy often enough to make meaningful progress. If a child is in their own world, they need people reaching in and gently pulling them into ours – as in Floortime (see other posts).
I just saw a family with a 3 year old girl I recently diagnosed as High Functioning Autism. She is as cute as can be. She made eye contact when I entered the room. She played with some imagination. The reason for the urgent visit was she was having 30 minute tantrums and sometimes meltdowns. These were usually with transitions. Her parents worried she was getting worse – regressing. However, a lot was going on at the time, and she was getting a lot of interventions. She was already making good progress. I explained to the parents she was probably going through the “terrible twos” a bit late, plus her brain is changing with all this intervention, and it has to feel weird. Any milestone is a good milestone, including the terrible twos. I gave them some techniques to help and sent them on their way.
I remember getting my son’s diagnosis. The child in the car seat on the way home was the same one going to the appointment. He was no different. I was different. How I viewed him and how I interacted with him were forever changed. Knowing why he was different informed us about how to help him. It’s a lot of hard work, but it is almost always fruitful and well worth it.