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Who We Are | Concerns About a Child | Screening | Diagnosis & Treatment
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Sharing Concerns           
Physician to Parent                   

Physicians may also find it challenging to identify children at risk for developmental delays and disorders and difficult to express their concerns about a child's development with parents or caregivers. No doubt about it, these are critical life-changing discussions that require time, sensitivity, honesty, planning, and follow-through on your part. Here are some suggestions as to how you can handle this process successfully with your patients.


Listen to parents

In recent years, parents of young children have become increasingly aware of the need to monitor traditional developmental milestones at each well visit prior to age three, due in large part to the popularity of the What to Expectseries, the Touchpointsbooks, and other baby books currently available. Parents expect to have a dialogue with their child’s physician about development, though even these highly regarded books do not cover social, emotional, and communication milestones well enough.  Nor do they address behavioral problems.

A recent national survey of parents with young children indicated that they want more information and support on childrearing and developmental concerns, yet pediatric clinicians often fail to discuss non-medical concerns with them (Taaffe Young, Davis, Schoen & Parker, 1998). Moreover, detection rates in primary care show that 70% of developmental disorders (Palfrey, Singer, Walker & Butler, 1994) and 80% of mental health problems are not caught (Lavigne et al, 1994). These discussions could yield developmental concerns early, since parent report has been shown to be highly accurate and indicative of a true concern (Glascoe, 999). 

Because parents are with their children around the clock, they are well positioned to be valid reporters about their child’s development. This, combined with routine observations and comparisons of other children is very powerful. This cuts across all populations:  income, education, social level, culture, etc. A physician can make great use of these observations at a well child visit where the average time for a professional to observe a child is only 15 minutes on average. Thus, a collaborative parent/physician relationship is critical to the continued healthy development of a young child.

When you have concerns about a child, remember, this is a family you anticipate having a professional relationship with for the next 18 years. It's important to develop the ability to say, 'Okay, this is a problem you're experiencing, I'm going to take it seriously. I may not agree with you that it's developmental; I may think this is more of an emotional or family problem, but you're telling me it's a problem, and I'm going to do something about it."(the late Robert H. Wharton, M.D., Developmental and Behavioral Pediatrician)

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Understand that early identification and intervention are essential

Early intervention’s positive outcome has been well-documented in the literature and goes far beyond IQ. In the short term, it improves the quality of life and functioning for the child and for the family. In the long term, early intervention’s impact extends into such key developmental areas as prevention of secondary emotional/behavioral issues, reduction in teen pregnancy, increase in high school graduates, increase in employment, and reduction in the crime rate. (Glascoe, 2002).

Pediatric clinicians are in a unique and central position to identify developmental concerns early and refer children at risk on for further evaluation and treatment. Parents depend on pediatric clinicians for advice, guidance, and support. They need healthcare professionals who can speak the language of development with them and work with them to keep their child on a healthy developmental path.   

"I would advocate a preliminary developmental screening for all children. And if a parent comes in and has concern about a child, there should be an immediate discussion about it. If the pediatrician doesn't have time, it would be well for him to either have a person to whom he refers the family or for one of his staff to be able to sit down with the family for 15 minutes and make them feel heard. The risks of not doing that are enormous in that the first few years of life are the period of the greatest neuroplasticity and the greatest rate of change in brain development. This is a critical period. If we miss this critical period, we could miss the boat on helping a child to develop to his or her fullest potential(Rebecca Landa, Ph.D., Professor of Psychiatry)

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Consider the prevalence of developmental delays and disabilities

Prevalence studies indicate that autism spectrum disorders are dramatically on the rise with the CDC citing 1 in every 150 children on the autism spectrum and developmental disorders representing 17% of young children (CDC: Yeargin-Allsopp, Rice, 2007).

Thus, every pediatric professional can expect to see at least one patient in his/her practice (if not more) that lives with these concerns. This makes it essential for medical practitioners and clinicians to understand the key social, emotional, and communication milestones and to have a firm grasp of red flags.  

"The findings now from very large prevalence studies show that 16 to 18% of children have developmental problems. That's one in every five patients or so, especially if you include the more serious mental health problems. One out of every five patients that you run into will be experiencing a developmental's a huge concern. It's probably the biggest single issue that you encounter in pediatrics and, yet, it is just a fraction of pediatric training."(Frances Page Glascoe, Ph.D., Professor of Pediatrics)

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Heighten your “index of suspicion”

Simply by making developmental surveillance a regular part of every office visit, you can sharpen your observations, elicit better information from parents, and heighten your index of suspicion. (American Academy of Pediatrics, 2001).

Suspicions are eliminated or confirmed through the screening process first by using a broad-based developmental tool and then, if concerns persist, by narrowing the focus through a level-two tool (e.g., autism or Asperger screen). Pediatric physicians’ observations enhance and strengthen the accuracy of screening tool measures. Physicians can use the developmental surveillance and screening processes to increase the chance of detection during very early development and provide a clear compass for referral and treatment if a concern is flagged. By listening closely to parent report during the surveillance process, physicians may be prompted to start the developmental screening process at any time a concern arises as a result. 

"Physicians need to have an index of suspicion. And they need to listen to parents. Even when I was a resident back in the dark ages...there was this whole idea about being an overanxious mother. I don't think I've ever seen a mother that I thought was overanxious. You're usually anxious for a reason and if there is a reason, you need to know what that reason is. So if they've got a busy schedule, it would be appropriate when Mrs. Jones comes in to say, 'Mrs. Jones, I really don't have time today, but let's make an appointment, I'll stay late on Thursday, why don't you drop by and let me hear more about that problem.' The parent needs to be validated, and you, the physician, need to hear the story in more detail. Without that, I don't think you have a clue, frankly."(Margaret L. Bauman, M.D., Pediatric Neurologist)

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Make each well-visit an opportunity for screening and surveillance

In response to the increasing number of young children affected by these disorders, leading medical organizations (American Academy of Neurology, 2000; American Academy of Pediatrics, 2001) have issued policy statements that provide specific guidelines toward the routine screening and surveillance of developmental delays and disorders, including autism. By making routine screening a regular part of pediatric practice, physicians can channel parent concerns efficiently, reduce over or under referrals, and accurately validate reported concerns and observations.

"Ask the parent how little Johnny or Susie lets them know what they want and listen carefully for the explanation. If at 12 or 14 months little Johnny or Susie simply cries or wants the parent to guess what he or she wants, but can't use purposeful signaling, such as taking them by the hand or pointing to indicate wants or desires, that's a warning sign. Also, observe yourself. Try to observe a few minutes of free play. You don't have to make a diagnosis, you just want to be alert."(Stanley I. Greenspan, M.D., Child Psychiatrist)

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Create a screening training and implementation plan

To make screening and referral a routine part of pediatric practice, it will require planning, training, and implementation. First, if you have someone on staff who is already a champion for children with special needs, get that professional involved in creating an atmosphere of enthusiasm and excitement as an advocate of positive change. Train all staff members, including front office staff. Not getting all suitable staff on board can make or break a program. Host a meeting with local service providers and office staff to build relationships and establish collaborations. Plan and implement a smooth office process for storing, disseminating, tabulating, and replenishing screening questionnaires and referral notes. Arrange to have trained staff available who can interview or interpret questionnaires for those parents who cannot fill out the forms without support. Stock exam rooms and the front office with patient education materials related to these disorders for easy access.  Keep contact information on hand for quick referrals to local service providers and diagnostic services.  

Lastly, look at how other model pediatric programs are meeting this challenge.  One excellent example is the Health Steps program, an approach that designates a trained staff member to be a developmental “Healthy Steps” specialist who regularly addresses issues around child development and behavior. To be sure, innovation can lead to a successful implementation of a screening and referral program.  But plain old-fashioned planning and execution can be all that is necessary to get started.

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Deliver difficult news to parents with sensitivity and understanding

We have provided links to many excellent journal articles that discuss how to deliver difficult news to parents in our Reference section below. In addition to these sources, we have provided our own advice for how to approach the difficult conversation of delivering bad news. It is important to remember that positive outcomes of these discussions between a physician and parent will set the tone for how the parent views their child in the future, how satisfied they are with the physician/patient relationship and how positively they view their roles as parents in the years to come.

1. Set the stage for a successful conversation.

Often, these difficult conversations take place in the physician’s office immediately following a screening. However, if your schedule does not allow adequate time to hold this conversation, schedule a follow-up visit as quickly as you can. Choosing the right time and place for a conversation to share your concerns is very important. And allowing sufficient time with no interruptions is critical. Understand that emotions may be unpredictable. Be ready to listen and offer help through the referral process.

2. Start with parent observations, questions, or concerns.

It’s important to assess where a parent stands in relation to understanding his/her child’s development before sharing your own professional concerns. The parent may already sense a problem and just not have the words to articulate it. Gently probe and ask questions that will allow a parent to share their own observations, questions, or concerns first. Then share your own observations and screening results in a very neutral manner.  By doing so, you will open an exchange and may even validate a parent’s hidden concerns and fears.

3. Put yourself in the parent's shoes. Be supportive.

Some of the most memorable conversations that parents of children with special needs report are those that take place at the critical moment a first concern is expressed. An empathetic approach goes much further in establishing trust and understanding than a clinical or professionally-detached one. Your tone and manner should be open and available. Whatever the outcome, in the long run, the parent will remember and appreciate your discussion if it is framed in a caring way.

4. Focus on the need to "rule out" anything serious. 

By referring for further evaluation, it opens up the opportunity to “rule out” as well as “rule in” the concern. If concerns are ruled out, parents can rest easy. If concerns are confirmed, then seeking help through evaluation and referral will help to get the child back on a healthy developmental path. No harm can be done by checking out concerns. Things can only get better. 

5. Refer parents and caregivers to other resources.  Some parents need to come to this understanding on their own.

It is also a good idea to give the parent something descriptive to read about the disorder in the quiet of their homes. Seeing disabilities described in writing, whether through literature or on the Web, allows a parent to make the match with his/her own child’s behaviors and needs.  It provides an objective description of common features and allows the parent to come into recognizing developmental concerns at their own pace. Often, when a parent is in denial, reading something that describes their own child’s behaviors closely can be the catalyst for progress.

6. Emphasize the importance of early identification and intervention. 

One way to look at developmental concerns is that if a child had signs of a serious and persistent physical illness, like asthma, you would want to get it checked out as soon as possible to rule it out. If there really were a problem, it would only make it worse by not doing so. Developmental delays are no different. By not receiving timely interventions for concerns around language, behavior, and social connectedness, the problems will not go away, but will worsen over time. And what’s most hopeful is that early intervention works, improving life in the long and short term for both the child and the family. So life will get better once interventions are underway. 

7. Be confident that sharing your concerns is always the right thing to do. The hardest part is finding the right words to get started.

Try role playing what you will say first. Express what you have observed that gives you concern in a caring and supportive way. By doing so, it may lower your own anxiety and give you the confidence to have a heart-to-heart with a positive outcome. Do not be afraid about hurting the relationship with the family. If you present your concerns in a positive and caring way, you will build trust. The bottom line is that the earlier a developmental concern is identified and treated, the better the outcome.

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Narrow the gap between knowledge and behavior

There is much currently being published in medical literature about the gap between knowledge and behavior in practice. Physicians are more knowledgeable than ever about autism due to increase in awareness campaigns, media attention, and funding for research studies. So why is there still a gap between knowledge and practice? And why don’t many physicians screen?

Physicians cite many challenges that may influence their decisions on whether or not to screen routinely in practice. Among these are:

  • Lack of training
  • Lack of time
  • Lack of reimbursement by insurance companies
  • Physician perceptions about fears and benefits of screening
  • Breaking bad news to families
  • Concerns about over referrals
  • Lack of confidence in results of early intervention

However, in spite of the perceived challenges of screening, two conditions have been shown to influence a physician’s willingness to act when a developmental concern is indicated: a sense of urgency and a level of certainty (Kennedy, Regehr, Rosenfield, Roberts & Lingard, 2004).

If one considers the latest information about early brain plasticity and the very powerful influence of early intervention on the developing brain, a sense of urgency is an absolute must whenever a parent expresses a developmental concern. The use of validated screening tools in practice strengthens a clinician’s level of certainty by providing a measure of confidence to make the referral for further evaluation.

The First Signs program is hoping to alleviate these perceived challenges by offering training programs in participating states and information on this Web site, such as recommendations for organizing a pediatric office to implement successful screening, advice on delivering bad news to families, information about current screening tools available and evidence of the efficacy of Early Intervention.

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Follow up with referrals; Progress can be made

It is important to have on file contact information for local agencies, services, and specialists where families can go to for help during the referral process. Oftentimes, physicians may not know of local resources that are available or may not be satisfied with the caliber of these services. Take the time to find out for the future of your patients.  Once you have made the appropriate referrals, be sure to follow up with families to see how they are doing. Progress will be made with the proper supports and services in place. The process starts with you.

"One of the greatest joys out of all this is the day that the child shows up— you've delivered the bad news six months ago and the family's done what you've told them to do—they come back in and you've got a child who's looking at you. Now he's developing words and play skills are beginning to expand. The parent looks terrific and the kid looks terrific and you're saying, 'wow, this is terrific, this is really great stuff'."> (Margaret L. Bauman, M.D., Pediatric Neurologist)


American Academy of Neurology and Child Neurology Society. (2000). Practice parameter: Screening and diagnosis of autism, Neurology, 55, 468-479.| link (PDF)

American Academy of Pediatrics. (2001). Committee on Children with Disabilities. Policy Statement: Developmental Surveillance and Screening of Infants and Young Children, Pediatrics, 108, 192-196. | link

American Academy of Pediatrics. (2002). Committee on Children with Disabilities. Policy Statement: The Pediatrician’s Role in the Diagnosis and Management of Autistic Spectrum Disorders in Children, Pediatrics, 107, 1221-1226. | link (PDF)

Bailey, D.B., Hebbeler, K., Scarborough, A., Spiker, D. and Mallik, S., (2004). First experiences with Early Intervention: A national perspective. Pediatrics, 113, 887-896.| link (PDF)

Bailey, D.B., and Scarborough, A., (2003). Families’ first experiences with Early Intervention: Executive summary. National Early Intervention Longitudinal Study. | link (PDF)

Boyle CA, Decoufle P, and Yeargin-Allsopp M., (1994). Prevalence and health impact of developmental disabilities in US children. Pediatrics. 9, 399-403. | link
For: Developmental Disabilities Branch, Centers for Disease Control and Prevention, Atlanta, GA

Dobos, A.J., Dworkin, P., Berstein, B., (1994). Pediatrician’s approaches to developmental problems: has the gap been narrowed?  Journal of Developmental and Behavioral Pediatrics, 114, 210-216.|

Gabovitch, E., Wiseman, N. (2005). Early Identification in Autism Spectrum Disorders: Identification, Education and Treatment, (3rd ed.), D. Zager, ed., 145-172. (in press, 2005).

Garwick, A.W., Patterson, J., Bennett, F.C., Blum, R.W., (1995). How families first learn about their child’s chronic condition. Archives of Pediatric and Adolescent Medicine, 149, 991-997.

Glascoe, F.P., (2002). Delivering difficult news. AAP Developmental and Behavioral News, 11, 3-5. |link 

Glascoe F.P. (2001). Are over-referrals on developmental screening tests really a problem? Archives of Pediatrics and Adolescent Medicine, 155, 54-59. 

Glascoe, F. P. (1999).  Using parent’s concerns to detect and address developmental and behavioral problems.  Journal of the Society of Pediatric Nurses, 4,24-35.

Glascoe, F. P. (1998). Collaborating with parents: Using parents' evaluation of developmental status to detect and address developmental and behavioral problems.  Nashville, TN:  Ellsworth & Vandermeer.

Glascoe F.P. (2001). Are over-referrals on developmental screening tests really a problem? Archives of Pediatrics and Adolescent Medicine, 155, 54-59.

Greenberg, L.W., Ochsenschlager, D., O'Donnell R., Mastruserio, J., and Cohen, G.J., (1999). Communicating bad news: A pediatric department's evaluation of a simulated intervention.Pediatrics, 103, 1210-1217. | link

Kennedy, T., Regehr, G., Rosenfield, J., Roberts, S.W., and Lingard, L., (2004). Exploring the gap between knowledge and behavior: A qualitative study of clinician action following an educational intervention. Academic Medicine, 79, 386-393. | link

Krahn, G.L., Hallum, A., and Kime, C., (1993). Are there good ways to give ‘bad news’? Pediatrics, 91,578-582.

Lavigne, J.V., Binns, J.H., Christoffel, K.K., Rosenbaum, D., Arend, R., Smith, K., Hayford , JR., McGuire, P.A. and the Pediatric Practice Research Group. (1993). Behavioral and Emotional Problems Among Preschool Children in Pediatric Primary Care: Prevalence and Pediatricians' Recognition. Pediatrics, 91, 649-655.

Moore V, Goodson S, (2003). How well does early diagnosis of autism stand the test of time? Follow-up study of children assessed for autism at age 2 and development of an early diagnostic service. Autism, 1: 47-63. | link  (PDF)

Mueller, P.S., (2002). Breaking bad news to patients: The SPIKES approach can make this difficult task easier. Postgraduate Medicine, 112, (retrieved from Internet 10/1/04).

Palfrey J.S., Singer J.D., Walker D.K., Butler, J.A. (1994). Early identification of children’s special needs: A study in five metropolitan communities. Journal of Pediatrics, 111, 651-655.

Sturner, R.A. (1991). Parent questionnaires: basic office equipment?  Journal of Developmental and Behavioral Pediatrics, 12,51-54.

Taaffe Young, K., Davis, K., Schoen, C., Parker, S., (1998). Listening to parents: A national survey of parents with young children. Archives of Pediatric and Adolescent Medicine,152, 255-262. | link

Vandekieft, G.K., (2001). Breaking bad news. American Family Physician, 64,
1975-8. | link

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