Getting a diagnose is not enough. It should be evident enough that getting the right one is important. There are studies, for example from State Michigan University and Krieger Institute, concluding that misdiagnosing happens, which could explain why some diagnoses seem to be epidemic. Marcia Rubinstein, founder of the Nonverbal Learning Disability Association, was very clear about this when Additudemag talked to her: “Virtually every child I’ve seen with NLD was first diagnosed with ADHD.” That doesn’t mean they don’t have ADHD, because it’s possible to have both, but what many see as an ADHD epidemic may not be as dramatic as they think.
A child that finds it hard to sit still, focus, or constantly bump into people doesn’t necessarily have to be hyperactive, and if the causes are allergies, problems with coordination, balance,visuospatial relationships, Ritalin or similar drugs are not going to make any difference. Some have both ADHD and NLD or Asberger, and again Ritalin may not be a miracle cure that makes other intervention unnecessary. It is already possible to look for physical evidence, and I hope researchers will agree on the criteria soon. The present situation where a diagnose is reached based on interviews and personal hypothesis could give inaccurate conclusions. Imagine asking a child what it’s doing on it’s spare time. You may not get a complete answer, and in some situations how you ask is just as important as what you ask. I try to avoid it now that I know about it, but I have noticed that I have a tendency to only answer what the doctor, or other health care professionals, asked. Sometimes I give them the information I think is relevant, so there is plenty of room for misunderstandings.
It’s the diagnostic criteria, or lack of criteria, that has created this confusion, and it’s not unlikely that some kids will have had all three diagnoses by the time the long period of testing is over (in Norway it’s done by the Child and adolescent psychiatry, which is a part of the public hospital). They may be re-evaluated several times during childhood and end up with a permanent diagnose, not necessarily the correct one. It’s not clear what is behind the NLD symptoms, but there is no doubt that the difficulties are brain-based. There are several hypothesis, but the most prevalent the last couple of decades is a white matter deficiency in the brain. I read a popularized explanation of the brain once that compared grey matter to houses and white matter to the roads or transport system. What white matter transports in the brain is information. There is more, or supposed to be more white matter in the right hemisphere, so that’s where you’d have the biggest reduction in function.
Young NLDers are usually good at compensating, and hiding their weaknesses. That is harder as they grow older, not the least because school work becomes more abstract, which is a challenge. With puberty there could also be additional difficulties like anxiety and mood swings. It could be hard to function socially because a lot of the communication is non-verbal. All of this affects our relation to other people, and our ability to get and keep a job.
Going through your childhood without a diagnose, or the wrong one, could have serious consequences. Jodene Fine at State Michigan University said more than four years ago that her team had found the first anatomical evidence that the brain of a child with NLD develops differently compared to other children. I thought that was going to be the start of something, but it got quiet. Very quiet. I hope researchers will soon take another step forward, because it sometimes feel like Pia Savage was right. She used to write about NLD for Psychology Today, and one of her posts from 2011 was entitled “The disorder that gets no respect.”