Why Professionals Don't Diagnose

(Editor's Note : this is a copy of a posting by Dr. Susan Pelton to ShadowSyndromeKids@groups.yahoo.com which the author kindly has allowed to be published to www.newdiets.com.)

Dr. Pelton may be emailed at SusanPelton@newdiets.com.

Hi, I am new to this site. I am a child clinical psychologist, and wanted to explain why sometimes professionals do not want to give a diagnosis.

One reason for this has to do why this site exists. The site ShadowSyndromeKids is about children who display an array of symptoms that often do not fall into any one diagnostic category. It is sometimes the wish that medicine is at the place where if you are given a diagnosis, then there must be a treatment that will work. For example, a diagnosis of breast cancer leads to several treatments. However, that is not true for many mental illnesses - especially those that have to do with children.

There are a few reasons for this:

1. Mental illnesses is the umbrella that deals with developmental disorders, emotional disorders, behavioral disorders as well as what is now called life experiences that people want help as they deal with them. With children, especially when the symptoms tend to cluster around what is considered a developmental disability of the brain, the professional community is both advancing but also still in its infancy of understanding. Part of that infancy is reflected by parents who are often given 2, 3, even 4 different diagnoses for their child. In medicine it does not matter if your child is an infant, young child or adolescent if they get cancer because cancer almost always has the same symptoms. But with mental illnesses not only does age and maturity level change the symptom profile, but level of intelligence, temperament, and stability of family life also affects what symptoms are labeled as problematic and therefore are brought to the doctor. And as some of these factors change, so does the symptom profile ­ so a child can exhibit one set of symptoms, and then as they age, actually change to such a degree that they are now given a new diagnosis because of the different symptoms that they now display.
2. The brain is very complex and how the neurological systems work together is still being explored. There have been many new developments since the MRI, CAT scan, and PET scan have been developed. However, sometimes it is good old fashion epidemiological research that creates a new diagnostic category that may not have even existed a few years ago (i.e., AS, Retts, and ADD). It is not until enough children come in with a specific set of symptoms that differentiate them from other diagnoses, and then this new “category” is researched and studied that doctors began to see this new set of children as a cohesive group ­ and thus a new diagnosis is born.

And then come the children who have only some of the symptoms. So rather than give a diagnosis that does not completely capture what the child and family is experiencing, the doctors will treat the symptoms and see what works.

However, schools and insurances do not often like that idea and want a definitive diagnosis so they know what to pay for or "do for the child. Another thing that doctors do is they give what is sometimes called a "garbage can" diagnosis. Non-Verbal Learning Disability is considered by some to be sort of like that. I will probably receive a lot of grief for that statement - but it is sort of like someone telling you your child has a Learning Disability. Great - there are what some 50+ LDs out there... it really does not give you a lot of information, but it is a diagnosis. Non-Verbal Learning Disability is basically a set of symptoms that means the child has not naturally picked up the ability to understand messages that are given through: tone of voice, emotions, interpersonal space, etc. Another way to look at these children is that they do not seem to know how to interpersonally relate to others - either, he is unable to read non-verbal cues (ie, faces, emotions, tone of voice, physical stances) or he is unable to match his intent with appropriate non-verbal cues (ie, he hits when he likes someone, says he is happy by screaming at you, sees his bullying actions as "playing with someone", feels if he just stands by a group of children that he will be included in a game.) However, often these same set of symptoms can be seen within other diagnoses - for example, AS, ADD, ADHD, OCD, PDD... children often have a difficult time with interpersonal skills - and sometimes, that is the only symptom.

Another reason that doctors do not want to diagnosis children is that sometimes the diagnosis is used to limit the outcome of the child by the school or even the world. What do I mean by that? The school all of a sudden has a set of expectations of what your child can and cannot achieve. For example, I will share a bit about one family. Their son had not been given a diagnosis other than Reading and Math learning disabilities. So he had gone through elementary school with resource help mostly in the classroom. Now he was entering the middle school years (7th-8th grade). He was tested again and he IQ was found to be in the mildly mentally retarded range, however, because this school had used achievement scores for their prior decisions ­ his achievement scores placed in solidly at the 6th grade level for reading and just a little below that for math. (It was the beginning of algebra that he seemed unable to understand - too abstract.) At this point because the parents had consulted me, we had labeled him as AS -his interpersonal skills were just not where his peers were - he was often the brunt of jokes and bullies. However, the middle school only had Learning Disabilities classes, Behavioral Disabilities contained classes, and Mentally Retarded contained classes.

Mother was worried about how her son would deal with going from staying in one class the whole day to the more confusing job of changing classes for every subject. She wanted the same type of resources to be provided for him so that he would still be challenged by the work. This new school was questioning whether he should be in the MR classes because of his IQ ­ so that he could leave middle school having job training skills- totally ignoring his level of achievement. Also they were considering the BD classes because of his disruptive behavioral problems (he sometimes talked when he was not suppose to, for got to raise his hand and would borrow someone’s new toy if it was shinny. He always returned the toy and had never gotten into a fight. He did not qualify for LD classes because his primary school had done such a good job with him, he was not 2 years behind in any subject.

The primary school saw a child who needed support and worked with him - The middle school saw a square peg that did not fit into any of their round hole offerings. We are still working on this...sorry about the length of this note.... But just a few more things.

I believe that parents should be told what the diagnostic conundrum is with their child, but I have also spent many sessions grieving the lost hopes of the child that they don't have - before they were able to mobilize and fight for the rights of the child they do have. Sometimes looking at what the child can achieve and treating with therapy and/or somatic treatment what the child has difficulties with is much more useful than that elusive exact perfect diagnostic category which may not even exist yet - because not enough children have been researched with that specific symptom protocol.

That is why sites like this are so useful ­ because you make connections with each other and keep doctors questioning their own limits. Yes, some doctors do not like it - and their bed-side manner is disgraceful, but others gather the information and look for connections to help others in the future.

Another site which has been having a great discussion on seizure activity as an explanation for rage attacks or tantrums is:

FEATBACK@LIST.FEAT.ORG

Good luck. I am learning too.

Susan