Getting a Diagnosis: The Process
When parents feel there is a problem or their doctor has identified developmental problems during well-baby check-ups, they can seek out a developmental pediatrician for further diagnosis.
If parents have suspicions of developmental delays at, say, 18 months of age, questions are asked regarding whether a child’s attention can be redirected. The doctor may have a bear sitting on top of a bookshelf in his office, and attempts are made to get children to look at it and take an interest. Other questions focus on imaginative play and speech development. There are a variety of structured questionnaires which give rise to suspicions, which may lead into more focused questions. “CARS” is one of these, and ideally is completed by a trained interviewer, but in reality, doctors usually ask parents to respond, without coaching them or giving directions for every step.
In large cities, pediatricians may enroll children in their practices, planning to see them regularly from birth until the children graduate from high school. In smaller towns, pediatricians may confine themselves to acting as “consultants” and expect family doctors to review and refer for treatment plans and diagnosis.
Young children may benefit from intense behaviour therapy where rewards encourage acceptable responses. To become enrolled in such a program generally requires referral to a Regional Agency, who assesses and authorizes access. For diagnosis the Child and Parent Resource Institute; for IBI therapy Thames Valley Children’s Center. Intervention by a therapist is expensive and takes a lot of time. Not all children respond satisfactorily, so the agencies attempt to choose clients who may be most responsive. However, there are not enough therapists available and frustrating delays are not uncommon.
As with any long term condition, but especially with Autism Spectrum Disorders, there are many “causes” incorrectly blamed, and numerous therapies endorsed by different people. Some ASD clinics have a particular interest in the family genetics if more than one family member is affected, other clinics focus on identifying specific difficulties, and designing intervention that might be helpful. The repetitive, frequent nature of potentially helpful strategies means that parents play a big role in therapy, both in doing the work and sensing whether or not it is helpful.
Doctors can help in referring to specialty clinics but, so far, are frustrated as well because of the lack of reliable interventions.
100 Day Kit: Why was My Child Diagnosed with Autism? What Does it Mean?
100 Day Kit: How Will I Deal with Diagnosis?
100 Day Kit: Week by Week Plan for next 100 Days