I’ve attended several meetings discussing the beginning stages of realization that a person’s child may need additional help and how this plays out in the office of the child’s doctor. The meetings I’ve attended include ones with pediatricians and medical school professors, research focus groups, meetings with parents and discussions with teachers and educators regarding the experience of getting the initial referral from their child’s doctor. People’s experiences run the gamut from nothing short of amazing to a complete lack of support. Although, I have heard some parents say they were initially ‘shocked’,’offended’ and even ‘blind-sided’ by a pediatrician’s suggestion that something may be wrong with their child; more often than not, I find most people’s opinions are that they wish their pediatrician had been more proactive in encouraging early intervention and initiating a referral for their child.
Our pediatrician was amazing in very many ways but when it came to getting a referral and seeking early intervention, that was entirely up to me. My concerns were repeatedly dismissed and the preferred method was a ‘wait and see’ approach. Based on my research during this time period, I learned that early intervention is a key component in helping many children. Because of this, my ‘wait and see’ lasted approximately 3 months. An excruciating 3 months. At that point, after obsessive research and continuing to miss milestones, I became more resolute about getting help or at least being pointed in an appropriate direction.
One of my concerns is that some parents may not be as willing to push for the referral or seek outside services if their pediatrician is dismissive over these issues. In a situation where time is of the essence, a ‘wait and see’ really doesn’t make much sense for the child’s well-being. What I didn’t know at the time was that I could go directly to our state’s early intervention program for assistance. Instead of getting a referral after 3 months of my gentle, yet consistent, prodding of our pediatrician, this was the information I received from her – the contact information for the CDSA (Children’s Developmental Services Agencies). She only partially relented, making clear that I did not have her support. She felt I was wasting unnecessary time and worry. It wasn’t until the evaluations began to roll into her office from the CDSA that we finally got the referral to a Pediatric Behavioral Specialist/Developmental Pediatrician. It sickens, saddens and depresses me when I think about how much precious time was wasted.
Side note: To make matters worse, once we did get in to see a developmental pediatrician, after months of anticipation and tortuous waiting, it was an unpleasant and awkward experience to say the least. Although, this isn’t everyone’s experience once you get to this step, it certainly was mine. You can find out more about the diagnostic experience here.
Below are some guidelines from Patient Centered Guides to help you understand the process and advocate for your child. There is also information on why getting a referral may be difficult, which can help you understand and work with your pediatrician better. Keeping a positive relationship with your child’s doctor is in everyone’s best interest and it is important to be respectful and understand that they genuinely want to do what’s best for your child based on what they know. For me, respecting her background, education and experience while also having what I consider to be reasonable expectations has been instrumental in maintaining a positive and open relationship with our physician.
I’ve copied below information on getting a diagnosis and how to work with your pediatrician, adding emphasis to certain phrases by places them in bold letters. Please review it in full from the original source here on the Patient Centered Guides, Autism Center website:
The following excerpt is taken from Chapter 3 of Autistic Spectrum Disorders: Understanding the Diagnosis & Getting Help Mitzi Waltz, copyright 2002 by O’Reilly & Associates, Inc. For book orders/information, call 1-800-998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.
Usually, the first person to hear the concerns of a young child’s parents is a pediatrician. In this age of managed care, the pediatrician takes on more importance than ever: Not only is she the doctor who knows the most about how a particular child’s development compares to the norm, but she is almost always the primary care provider (PCP) designated by health insurance plans. She generally serves as a gatekeeper to more advanced care, making referrals to medical and therapeutic specialists as needed.
In an ideal world, pediatricians would be quick to see the early signs of ASDs, and would guide parents toward the best medical resources available. Sometimes that’s how it works.
Elaine’s pediatrician recognized developmental problems quite early. He said that she did not speak because she couldn’t, not because she didn’t want to, and advised me to have her seen by St. Mary’s Hospital for Early Intervention. At St. Mary’s, Elaine was seen by a neurologist, a speech expert, and countless doctors. They couldn’t agree on a label–only the neurologist felt certain that it was PDD-NOS. Luckily, they did agree on recommendations for treatment. –Sarah, mother of two-year-old Elaine (diagnosed PDD-NOS, possible oral-motor apraxia)
Because parents know the most about their child, they play a key role. To assure a proper diagnosis, parents need to make their concerns crystal clear.
That isn’t always easy. Many pediatricians complain that parents seem almost apologetic about being in their offices, don’t ask enough questions, and don’t volunteer important information unless asked. By and large, that’s learned behavior, ingrained over a lifetime of rushed appointments with harried doctors.
It’s true that the typical sore-throat appointment is a ten-minute affair these days, but when you have greater concerns it’s okay to ask for more one-on-one time with the doctor. There’s no need to feel guilty, because doctors are accustomed to scheduling longer sessions for some types of appointments. Practitioners should reassure parents about this point.
You’re not asking the pediatrician to diagnose an ASD , you’re looking for a referral–but before such a referral can be approved, the doctor must be sure that specialized diagnostic help is required. Ask the pediatrician’s office for a consultation appointment of at least thirty minutes (more would be nice).
Why do you need to go beyond the pediatrician? Because while pediatricians are indeed experts in the typical problems of children–croup, the flu, pinworms, diaper rashes, and all the rest–they receive very little training in neurological or psychiatric disorders. In fact, a study by Elizabeth Costello, Ph.D., associate professor of child and adolescent psychiatry at Duke University, found that a large HMO’s pediatricians were only able to identify 17 percent of the children who presented with psychiatric disorders. In addition, that 17 percent tended to be children with the most common problems, including bedwetting and learning disabilities.1
Pediatricians also have their own opinions about disability. Some know very little about available services, and assume that only the severely disabled are eligible for assistance.
We began asking our pediatrician questions about Joseph’s language regression at fifteen months, but she ignored our concerns because she felt his skill with letters and numbers precluded any developmental disability. She actually discouraged us from seeking Early Intervention when he was twenty-four months old. She said we might be uncomfortable since “the other children are more severely impaired.” –Jennifer, mother of three-year-old Joseph (Aspergers-like and autistic-like features, diagnosis still in progress)
Use your consultation appointment as efficiently as possible. Accurate, detailed records are the most important thing parents can contribute at this appointment. These should include the usual “baby book” milestones (first step, first word, etc.) as well as notes about anything unusual parents have observed. Areas the pediatrician is likely to ask about include patient and family medical history, speech, relationships with family members and peers, play patterns, and interests. You may want to consult the diagnostic questionnaires, under Resources on this site, to see the kinds of questions a doctor might ask.
Keeping a daily diary is an excellent way to prepare for a diagnostic evaluation. Many families have learned a great deal during this process as well. If possible, record activities, diet, and behaviors each day for a period of two weeks or more, with the time and duration of activities and behaviors noted. Not only can this diary provide a very complete picture of the child to a professional, it can also help to identify patterns. Some families have identified food allergies this way, or gotten data they needed to create the most beneficial daily routine for their child.
If the child has seen other doctors, releases must be signed to have any useful records transferred to the pediatrician. Older children may have school records that would be helpful, and these can also be transferred if a signed release is on file. Transfers always seem to take longer than you would expect, so get releases taken care of early, and make sure records were sent and received. Alternatively, if you have your own copies of these records (and you should), you may photocopy and deliver them yourself.
If possible, provide your information to the pediatrician at least a week before the consultation appointment. Include a request that she read the material in advance and review the patient’s medical file before the meeting. The goal is to put your child’s case on the pediatrician’s front burner and to ensure that when the appointment takes place, the details are fresh in her mind.
You should also summarize their concerns in writing. The records already mentioned can help you gather your thoughts. You don’t have to be an eloquent writer to express what worries you. You can jot down a simple numbered list rather than writing whole paragraphs if you prefer. It may help to compare your child to his or her siblings, or to other children in the day-care center, school or neighborhood. Some parents may want to send their summary of concerns to the doctor in advance; others may prefer to use it as an agenda for discussion during the consultation session.
You may also want to discuss your concerns in advance with an advice nurse or another person, such as a physician’s assistant, who works closely with the pediatrician. In large medical practices or HMOs, nurses are an important part of the organization, and can be important allies for parents who need referrals to specialists or even just a listening ear.
As you prepare for it, keep in mind that the consultation appointment is only a preliminary step toward your real goal: a multidisciplinary evaluation.
The Consultation Appointment
A consultation appointment is different from a regular visit to the pediatrician. Unless the doctor happens to notice something of medical concern, there will be no need to do the usual eye, ear, and mouth exam, or to check height and weight. In fact, the appointment may take place in a meeting room or office rather than in an examination room.
When you come, bring any records you have gathered, copies of your earlier letter (just in case it never reached the doctor), your summary of concerns, and any questions that you want to ask. Bringing a small notebook can help you keep a record of the discussion. If your child tends to be difficult to manage, bring a bag of toys or books that are likely to help keep him calm. Parents may want to choose playthings that will help the doctor see where the child is at developmentally, such as a doll or stuffed animal.
If the consultation seems to be getting off to an awkward start, start the ball rolling by referring to your summary of concerns or your list of questions. Always keep your goal in mind: You’re there to make a case for referral, and your observations are the evidence you’ll need to convince the pediatrician. Think of yourself as a salesperson, trying to convince a customer. You want to be the one in charge of this meeting, and keeping that image in your mind can help.
Most pediatricians will use the consultation appointment to listen to your concerns, discuss the issues raised, and recommend the next course of action. Some will use a set of standard questions about behavior and development to screen the patient. For children, the Pediatric Symptom Checklist (PSC) is one of the most common screening tools used. It’s a list of thirty-five questions created by Dr. Michael S. Jellinek of Harvard Medical School, and has proven to be about 95 percent effective at catching psychiatric disorders in children.
Checklists and guidelines are great, but there’s really no substitute for knowledge and experience. As parents interviewed make painfully clear, some pediatricians are reluctant or unable to recognize ASDs, even when faced with a non-verbal three-year-old who spends the entire consultation appointment screaming or dissembling the doctor’s scale. You may hear phrases like “your child just needs to be disciplined more strictly,” “he’ll grow out of it,” or “let’s wait and see.” There are several responses you can make:
- Go back over your evidence, showing that your child is having more than one developmental problem, and explaining how it is affecting her life. If you feel comfortable doing so, you may also want to mention how it is affecting your family life.
- Set a “wait and see” timetable. Ask the pediatrician which important milestones (such as meaningful speech) should be passed within the next three months, and secure a promise that if these goals have not been met, a referral will be made. This approach may be appropriate for very young children whose possible impairments are subtle.
- If the pediatrician says he knows nothing about autistic spectrum disorders, suggest that he do some research. The organization First Signs, online at http://www.firstsigns.org, sends out an excellent kit for pediatricians that includes diagnostic information in written for and on video. You might even order one for the doctor yourself.
- Ask the reluctant pediatrician for a referral to a developmental pediatrician (see below).
- Go up the chain of command in the health-care organization, if you are using a managed care or HMO practitioner. In medical groups there is a board that takes patient complaints under consideration. You can petition the board to approve your referral even if the pediatrician refuses. Usually this is done in writing, not in person.
- Ask the doctor to put his refusal to refer in writing. This may not be something he’d like to commit to paper, so you might end up getting the referral after all.
- If the doctor does put his refusal in writing, you can choose to call your diagnostic facility of choice and set up an appointment with the appropriate evaluation team directly. Be prepared to pay for this visit out-of-pocket. However, if the team confirms your suspicions, you should be able to bill your insurance company for reimbursement due to refusal of an appropriate referral.
- If the pediatrician won’t refer, but won’t put his refusal in writing either, you can still “self-refer,” but it will be harder to get reimbursed. You should send a letter to the pediatrician explaining why you have made this choice over his objections. Send a copy to your insurance company as well. This creates a paper record, allowing you to later pursue a claim for improper refusal later on, if warranted.
Referral to a developmental pediatrician, a doctor who specializes in treating the health problems of children with developmental delays or handicaps, presents a less-expensive alternative. For you, seeing another pediatrician may seem like one more hurdle to jump on the way to the diagnostic team. Your reluctant pediatrician, on the other hand, will probably like the idea. If your concerns are valid, the developmental pediatrician can explain the reasons to your regular pediatrician, and can provide information about the best resources available locally for full diagnosis and treatment.
Developmental pediatricians are much more familiar with neurological problems, medications, and current research on disabilities. They tend to work closely with specialists, including neurologists, psychopharmacologists, psychiatrists, and therapists of various types. In fact, you may want to continue seeing the developmental pediatrician on a long-term basis, once the diagnostic process is complete.
Roadblocks to Referral
Most doctors in the U.S. share the risks and expenses of caring for special-needs patients, including specialist referrals, with business partners or an HMO group. Doctors who make too many referrals can face financial penalties, even if the extra services were absolutely necessary for the patients’ health. Physicians may also feel constrained by directives from insurance companies, which want to minimize expenses. The health-care structure in America can make convincing your pediatrician to send you to an expensive facility a little difficult.
Low-income Americans who are uninsured face the biggest roadblock of all: lack of access to health care. They may be able to obtain diagnostic help through the school district or through public Early Intervention programs for pre-school children. The school district may also provide some diagnostic and therapeutic assistance, especially in the areas of speech, occupational, and physical therapy that relates to classroom performance. There are also special medical programs available for low-income families and for children with handicapping conditions.
In Canada and Europe, where the single-payer system of nationalized health-care predominates, doctors have a different set of constraints on their ability to make referrals. Resources are focused on providing basic health-care to everyone, so specialists are rarer and harder to access than in the U.S. Parents may be forced to pay out-of-pocket to doctors who practice outside the national health-care scheme. The expenses can be considerable. Some families have been able to gain more-timely access with help from a sympathetic social worker or health visitor, or have called on disability advocacy groups for assistance.
In countries where neither the private insurance nor the single-payer model predominates, parents should seek out–and pay for–a specialist directly, without going through a preliminary consultation appointment. Reduced-fee or free help may be available through state-run hospitals and clinics, medical facilities run by religious orders or charities, or individual physicians who are willing to take a case at a lower cost than usual.
1. Elizabeth Costello et al., “The Great Smoky Mountains Study of Youth: Functional Impairment and Serious Emotional Disturbance (SED)” Archives of General Psychiatry (1988): 1107-1116.