Talking to Pediatrician About Autism

Bringing your concerns about your child's development to the attention of your pediatrician can be difficult for many parents. It can be even more difficult to be persistent if your pediatrician tells you not to worry, or doesn't take your concerns seriously. Here are some tips to help you make your concerns clear to your pediatrician, and steps to take if you're not satisfied with his or her response to your concerns.

Be prepared with a list of concerns

Before your visit with your pediatrician, sit down with a checklist of developmental milestones that are appropriate for your child's age. Go through the list and check off the ones that concern you.

Be specific
It will be far easier for your doctor to grasp the situation if you say, "She doesn't turn her head to look at me when I call her name" than if you say, "I think there's something wrong with her hearing". Try to be as specific as you can about all of your concerns. Remember that your doctor only sees your child for about 15 minutes during a very busy day. Your observations and reports are a major factor in shaping his opinion.

Avoid comparisons with other children
When you say 'My neighbor's one year old is doing this, but my child isn't yet', your doctor may go into 'soothing' mode. Rather than address your concern, he may address what he sees as 'nervous mother syndrome'. Stick to descriptions of your child's behavior without referencing other children.

Insist on a routine developmental screening
Routine developmental screenings only take a few minutes - and your doctor may actually be doing one without you being aware of it. You may have filled out a questionnaire about your child's behavior that asks questions like 'Does your child smile at you?' and 'Is your child using 2-word sentences?' or your doctor or nurse may ask those questions. If you're not sure that your doctor has done one, ask. If he hasn't, ask him to do so.

Be persistent
If your doctor doesn't seem to take your concerns seriously, or refuses to perform a simple developmental screening, ask him to explain why. Don't be afraid to ask for a referral to another doctor, or to schedule a follow-up appointment to discuss your concerns specifically.

Ask questions
Part of your doctor's job is to make sure that you understand any diagnoses or the results of any tests. If you don't understand a term that was used, ask your doctor to define it or give you examples. If he gives you the results of a test, ask him what they mean if you're not sure.

If your doctor refuses to refer your child...
Know your rights. In many states, you don't need a doctor's referral to have your child evaluated for Early Intervention needs. In Massachusetts, for instance, any parent can contact their local school department or health department to ask for an Early Intervention screening. You'll find contacts and information about Early Intervention at the (http://www.nectas.unc.edu/) National Early Childhood Technical Assistance web site.

Keep in mind that you are the person who knows your child best, and who is with him or her more than anyone else in the world. If you have concerns, it's far better to bring them up and have them addressed appropriately than to wonder - or worse, put off a diagnosis and waste precious time that could make a world of difference to your child.

At the same time, the American Autism Society cautions that autism is a broad diagnosis that encompasses an almost infinite combination of symptoms, abilities and levels of abilities. Every child diagnosed with an autistic spectrum disorder is an individual with individual needs. This is echoed by many other specialists and experts in the field of autism who believe that each child with autism must have an individualized treatment plan that addresses their particular needs.

The Importance of Autism Diagnosis

Getting an accurate diagnosis is important in getting appropriate treatment for your child. Without an official diagnosis, your child is in limbo, legally and financially. With a diagnosis, doors to treatment open that are locked as long as doctors are 'being nice' to you.

I am not suggesting by any means that you push for a diagnosis that isn't certain. No parent wants their child to be diagnosed with a lifelong disorder that will affect everything that they do. There is a tendency, however, among doctors to cushion the blow. Since there are no definitive tests for autism, diagnosis is as much art as science, and doctors would rather not have to tell you that your child is autistic. They may couch it in other terms - your child 'meets the criteria for autism' or 'displays autistic tendencies'. Many will tell you bluntly that they don't want to label your child, because labels have a tendency to stick for life, and if they're wrong, your child may never be given a proper chance. While their concerns are commendable, the truth is that it is far easier to reverse a diagnosis than it is to get one in the first place.

Those doctors fail to take a number of things into account, among them the toll that uncertainty takes. Not having an official diagnosis leaves you in limbo - you know that there's something wrong, but you can't put a name to it. You can't effectively advocate for services for your child from the school department or from other sources without an official diagnosis. Insurance won't pay for certain treatments or special schools that may help your child learn despite his disability unless there's an official diagnosis.

Getting appropriate treatment for your child depends on having an accurate diagnosis. If your doctor is reluctant to give you an official diagnosis, ask him why. Don't be afraid to ask for a referral to a specialist, or to a team for diagnosis. If, in the end the verdict is that your child does NOT have an autism spectrum disorder, thank whatever Powers you believe in, and move on, enjoying your slightly quirky, eccentric child. If, on the other hand, the doctors and specialists agree on a diagnosis of autism, you now have a tool that will help ensure your child the treatment that he needs.