Diagnosis v. Non-diagnosis

Last week I attended a pediatric team meeting with the pediatricians, nursing staff and allied health workers. Also present was a team from the community disability services. During the meeting all children on the caseload were discussed in terms of their progress, services required and any referrals or assessments that needed to be done or were booked for in Perth. What I found interesting was the difference for financial and other service support provided for those children with a diagnosis compared to those without.

Two children were brought up at the meeting whom both had developmental delay and inappropriate behavioral/social skills. Both children attended a local kindergarten and were disruptive in their class – basically making life difficult for their teachers! Each child had been referred by their pediatrician to PMH for an autism assessment however only one came back with the diagnosis.

The child with the diagnosis had been provided with a therapy assistant to visit them once a week in class to work on their gross and fine motor skills, in addition at school they had a full time aid with them. For the other child, whom didn’t have a diagnosis none of these services have been provided despite the similarities between their presentations. In the last month this child’s behavior has become increasingly disruptive and has eventuated to the situation whereby the mother of this child has been told by the teacher that unless the child’s behavior improves by the end of the week they will be expelled from school (keep in mind this is kindergarten). In addition the child has also been ‘expelled’ from the daycare centre they attend.

For the mother of the child without a diagnosis life is extremely difficult at the moment as she is no longer able to work, yet cannot receive any financial support from centerlink or the disability services. Furthermore she doesn’t have access to the services the child with a diagnosis has to provide her with methods to improve her child’s behavior etc. When these children were being discussed I thought it seemed extremely unfair as one child was being provided with more and more assistance, whilst the other received nothing. When the disability service team was asked by the allied health workers what they could do for this child they replied nothing, until they get a diagnosis.

After the meeting I reflected on the caseload of children I was currently seeing. A number of them had a specific diagnosis and were given aid support at school etc, however a number of the children didn’t quite fit into any box – yet clearly ‘something wasn’t quite right’, and they would benefit from similar services. To me it seems there is a gap in the health system and large numbers of children are at a disadvantage as they don’t have access to the services they require to develop appropriate motor and social skills. It made me think of the percentage of adults now in the community that ‘don’t quite fit in’ and have inappropriate social skills etc. They may have been children such as these that were lost in the system and didn’t receive possibly some very basic treatment which may have taught them the necessary life skills.

At this stage all we can do is identify children at the various schools, kindergartens etc and ask their teacher’s/parents to refer them to a pediatrician, hoping they will get a diagnosis so they will eligible for the various services. I'm not sure as a therapist what we can do once the child has been for an assessment and it has come back negative. For me that has been the most frustrating part of working in paeds, as so many children present with signs and symptoms for multiple pathologies - but don't present with enough to obtain the diagnosis. Instead these children become labelled with developmental delay or delayed social skills, with only limmited access to services.