Local Resources for Diagnosis
If you determine that Asperger's Syndrome best describes your child's way of being and are interested in pursuing a diagnosis, your first course of action is to seek a referral to the appropriate clinician most qualified to make the diagnosis.
The best place to start is with your child's pediatrician, although he or she is not in a position to make an Asperger's diagnosis. You will need to inquire if he or she knows of a pediatric psychiatrist or psychologist who is experienced in seeing kids with autism spectrum differences, or Asperger's specifically. Hopefully the doctor can steer you in the right direction.
If you live in an urban area, there may be a multitude of doctors from which to select. You will need to narrow your range of choices. As autism has become commonplace, you may wish to begin by asking the pediatrician if he can tell you of any other patients who have been pleased with particular diagnosing physicians. The pediatrician may or may not be able to share this information based on client confidentiality or conflict of interest outside of a managed care physician's network.
Alert
Finding a doctor experienced in ascertaining an Asperger's Syndrome diagnosis may prove challenging depending upon your geographic location. Search your library or the Internet for statewide and local resources such as established autism groups in your state. They may be helpful in guiding you.
If you live in a rural area, you should still ask your child's pediatrician for a referral, but there's a greater chance that the doctor may not know of anyone who specializes in making autism or Asperger's Syndrome diagnoses. Or, if the doctor does make a referral, depending upon your location you may have to travel a great distance to access a reputable and established medical center with a pediatric psychiatry department.
Preparing for the Appointment
Once you make an appointment with a physician qualified to make an Asperger's diagnosis, it is important to be prepared. When setting up the appointment, ask the receptionist or nurse practitioner what kinds of information the doctor expects to receive from you. Is there a form or forms that may be faxed, e-mailed, or mailed to you in advance to save time and ensure a thorough and complete job?
Be certain to clarify any insurance concerns you may have as well, and ask how the appointment will be billed. Ask for any information about in-office testing or assessment that may be conducted by the doctor. Is there anything you should be prepared for regarding those tests?
Most often, the doctor will conduct an interview to ask specific questions designed to elicit information about your concerns. Depending upon your child's age, the doctor may wish to meet with your child alone to observe or interview her separately. Find out in advance if that is part of the process. Understand that, because of demand and client backlog, it may be several weeks before a qualified physician has room in his schedule to see you.
Alert
Preparing a psychiatric or psychological appointment for your child may be a very anxious time for you. Be careful of what your child over-hears you saying to others. She may be acutely attuned to picking up on your frustrations and anxieties, which may affect her as well. Keep your phone contacts about this topic as private as possible.
Of course, just as you are preparing for this appointment, you will need to help your child to prepare for it as well. Knowledge is power. Your child will do best if she feels safe and comfortable and in control. You may best accomplish this by:
Explaining that the appointment is with a doctor who only asks questions and does not give shots or ask the child to engage in any other medical-type procedure.
Sharing with your child your understanding of the structure and sequence of the appointment, including approximate wait time and duration.
Sharing with your child whatever questions you expect the doctor to ask.
Going online for a map to show the child exactly where your house is and the route you will take to the doctor's clinic. (Give the child a printout of the map, and partner with her on driving directions while en route the day of the appointment.)
Taking your child to the clinic ahead of time to familiarize her with the surroundings and to meet the doctor, if possible. (Take photographs of the building, inside and out, as well as pictures of the doctor and other staff, to give to your child well in advance of the appointment. This preparedness should enhance your child's comfort level.)
Empowering the child to mark off the days until the appointment on a prominently displayed wall calendar.
Allowing your child to bring a book or small toy related to her most passionate of interests to defer the tedium of waiting before, during, and after the appointment. (The object of passion will also be a terrific icebreaker by which the doctor can initiate conversation with your child.)
These strategies should help you and your child feel fairly comfortable about the impending appointment.
The Doctor's Visit
During the appointment, it will be important for you to try to stay as focused as possible and to listen carefully to what the doctor is asking. Oftentimes during such a significant time, parents are filled with lots of nervous anxiety, some of which is completely natural. Your anxiety will not be helpful to the doctor if you go overboard.
Don't bring stacks of your child's medical, educational, and other records to show the doctor well beyond anything that was requested. Don't digress into lengthy stories intended to highlight one incident in great detail. Be careful not to frequently interrupt in order to press your own agenda, such as pressuring the doctor to make an on-the-spot judgment call.
To be helpful to the doctor, bring exactly what was requested. If you bring additional information, offer it only if you think it's warranted or if it helps to illuminate a specific point. Accept that the doctor may not need it at that time. Be prepared to discuss why you believe your child might have Asperger's Syndrome. Talk about specific clinical symptoms — not behaviors. Tell only concise stories that illustrate your rationale.
Fact
By connecting with other parents — either locally, statewide, or nationally — by phone or e-mail, you may receive valuable information about the diagnostic process for your child. Experiences will vary from person to person, but you will surely obtain valuable “pointers” that may help you feel comfortable in knowing what's best to do and say.
When you talk about symptoms, you're talking the doctor's language. He will be far better equipped to discern a diagnosis if you are clear and brief in offering such information. Otherwise, the doctor must sort through a laundry list of descriptive “behaviors,” trying to match what you're communicating against the DSM criteria. Allow the doctor to guide the interview, and interject with questions only as needed.
It is unlikely that you will walk away from the appointment with an Asperger's Syndrome diagnosis. The doctor will need time to absorb and process all the information he has gathered from you. A written summary of the meeting and the doctor's observations and findings will be forthcoming. If several weeks go by and you don't receive such a report, contact the clinic to check on its status.
