Battling the myths of ADHD & Taking One Day At a Time

Today’s column by Valerie Strauss “If you can pay attention, you do not have ADHD”–and 9 other misconceptions about the disorder” was a great read.  Ms. Strauss highlights the Top 10 Myths of ADHD by Dr. Ned Hallowell, a child and adult psychiatrist. This list is a good for families of newly diagnosed children or in situations where parents are concerned about the possibility of ADHD and have yet to get confirmation.

I have been in the position of talking to parents, to grandparents, to schools about what ADHD is and what it is not. There are a lot of myths and misconceptions about the diagnosis and treatment options.

Let’s get that out of the way now. “Treatment” does not necessarily imply medication.  However, I know many parents cannot stop thoughts of: “if this is ADHD, then it must mean they will want to medicate my child…” First, as a behavioral pediatrician, I want to say that having the diagnosis of ADHD does not automatically mean your child will need to be on medication. In fact, the first line “treatment” for ADHD is parent training and education.

RELATED: Treatment & Target Outcomes for Children with ADHD (from

Yes, sometimes medications are used in the treatment but educational supports, behavioral therapy and parent training or also part of the plan. These components can be started at any time, may be combined with other treatments. Sometimes treatments are dropped and added on again at later times.

These decisions are made with the family and the team (for example: doctors, teachers, therapists)–and always with the goal of asking, “What else is needed to ensure that the child is learning and doing what he/she needs to be doing every day and doing it as well as can be?”

If you are a parent with a child with ADHD or a parent who is worried that your child may have ADHD, make sure you come prepared to ask questions at each and every appointment. It can be challenging and hard to remember who is doing what since much of the time behavioral conditions require many team players. Your child’s doctor wants you to feel comfortable with every decision that has to be made along the way. They are happy to have you ask questions, no matter how many times or different iterations.

Another thing to remember is that at the time when the diagnosis is uncertain or is new, it can feel like you are all alone and overwhelming. The first step is to take a breath and write down any and all questions. Organize all paperwork and relevant schoolwork in a binder/folder and keep them together. It helps keep things handy when you have to meet yet another new team player. It also ensures that everyone is on the same page. There is nothing more stressful than not knowing which team member to call when things go awry or after a particularly challenging day. See my post “A new handout for ADHD” that I developed and use with families that can help explain some concepts I think is important to think about when a child is newly diagnosed.

The key is to remember to reach out to your child’s doctor if you have ongoing questions. Yes, they can prescribe medications for ADHD, but they can and always will be there to coordinate care and make referrals. They are interested in talking through all treatment options and linking you to great community resources and organizations. This is what the “medical home” is all about.

RELATED: Your child’s medical home: What you need to know


Helpful Resources to Learn More:

  2. http://www.understood. org

Helping kids with ADHD talk about “My Today”

MyToday-EnglishWhen families face chronic diseases, it is especially important to encourage their active participation with the medical team. This is the hallmark of the “chronic care model,” which encourages medical providers and the patient/family to work together. Chronic diseases often require lifestyle and behavior change to maximize outcomes. This is especially true in pediatrics and behavioral conditions. Published clinical care guidelines for all pediatric behavioral/mental health conditions (such as ADHD) highlight parent training and behavioral interventions as “first line” treatments.

Part of what we do in the ADHD group visit model is to help pediatric providers empower parents and children with knowledge and skills that encourage active monitoring of symptoms and behaviors. It is important to involve children in their own self-care as soon as they are able to understand basic concepts of health and illness, can participate in some aspects of self-care and show self-awareness.

We developed an ADHD group visit curriculum for parents to begin to breakdown elements of ADHD chronic care over 5 sessions–knowledge about ADHD and developmental considerations and treatment options (behavioral considerations and positive parenting, educational supports, and medications).  We have a separate child curriculum that includes complementary topics, such as teaching children what ADHD is, along with specific skills to promote self-care and problem solving skills to use in home and school.

One of the things we noticed that happened organically after the group visits was that parents and children were eager to talk to each other about what they had learned or talked about in groups. This is because parents and children participate in group separately. Groups are run at the same time but in different rooms.

One of the tools that has come out of this work is a worksheet designed to help children monitor their feelings and how their bodies feel. This is especially important if a child is on medications for ADHD since potential side effects include headaches, stomachaches and decreased appetite. Helping children learn how to “tune in” to their bodies and thoughts and also how to talk with their parents about it is a important skill.

Together with our Patient Advisory Board and the team of health communication designers, we developed a way for children to track these feelings and thoughts. We printed these as memo pads and distributed them after session 2.

Children can be encouraged to complete these sheets for the first few days after starting or increasing medication as a way to “jump start” self-awareness and conversation. It can also be shared with the child’s doctor.

Click here to download “My Today” in English.

Click here to download “My Today” in Spanish.

*A special thanks to Dustin Lynch, Courtney Moore, Helen Senamatsu and Dr. Sarah Wiehe, as well as the families of our patient advisory board for their assistance in co-developing this tool.


Helping families understand the educational system alphabet soup

FINAL S3 educational narrative_Page_1It is important to help families become advocates for their children. For children with behavioral conditions, this is even more important because children’s behaviors often can lead to stress and strain on peer relationships and functioning in school. However, there are terms or abbreviations that need to be explained in clear language so families can be prepared.

Parents often rely upon their child’s pediatrician when faced with stress around their child’s behavior. However, I have learned that many pediatricians often do not feel comfortable with coaching families about educational advocacy because it is not something that is taught during training. Aside from opportunities to learn what this is all about with individual families, this is by and large a skill that is missing and thus leaves many pediatric providers uncomfortable with these questions.

Helping families become comfortable engaging with the school and being involved in their child’s education increases the likelihood of the child’s educational success at any age. Some of the positive outcomes, regardless of the family background, include:

  1. Higher grades and test scores
  2. High quality work habits and task attendance
  3. Regular school attendance
  4. Better social skills and behavior
  5. Graduate and go on to post-secondary education

The first step is to ensure parents are viewed and feel like an equal partner at the table when working with schools. However, if parents have not had positive experiences with the school system either as a child or with their child, it makes it less likely that the parent will know where to start.

That is where pediatric providers come in and can help coach families on the importance of educational advocacy.  As part of our ongoing work with ADHD group visits, one session is dedicated just to this topic because we have structured sessions to focus on the various treatment modalities for ADHD (Note: we work hard to make sure families understand that even though medications are often the first thing they think about when ADHD comes up, it is just one part of treatment. Positive parenting and educational support are equally as important!)

It also became clear that pediatric providers really crave tools to help explain the “alphabet soup” tied to understanding educational advocacy.  So we engaged our patient advisory board and patient engagement core to help us translate these complex topics into something that can be used by the pediatric provider when talking with parents about interfacing with school.

We learned that parents want to hear about others’ stories about school experiences, even if it does not entirely relate to their own child. Stories are powerful ways to understand concepts or scenarios and that ‘first-hand’ experience is valuable to other parents. Moreover seeing different approaches can help families adapt to their own situation. As a result of this process, our design team came up with a “choose your own adventure.”  Every aspect of this colorful brochure has been carefully thought out–right to the “pauses” rather than hard stops at each part of the story.

During our studies using this in our ADHD group visits, these tools were welcomed by parents and providers since it helped simplify the conversation and served as a nice road map for helping both parties to talk about the process.

Download a copy of the English version here.*

Download a copy of the Spanish version here.*

*Special thank you to our patient advisory board and Dr. Sarah Wiehe, Dustin Lynch, Courtney Moore  (IU Patient Engagement Core) & to Helen Sanematsu.

As always, please share your experiences using these tools, whether as a parent or provider.



Why engaging families in research is important…

images-2I have been working closely with my ADHD patient advisory board (PAB) for the past several years to improve upon ongoing work examining primary care-based interventions for ADHD. It is hard to believe we are nearing the end of a 2 year process. I have witnessed the change within parents who participated in the research as a ‘subject’, then agreed to serve as a ‘consultant’ to me and my team to help us think through important study issues and brainstorm solutions as challenges arose…and finally to ‘collaborators’ in the final stages of the current study.

However, they are not the only ones who have changed. I have changed too.

As a behavioral pediatrician, I see patients in clinic to provide recommendations to families who are struggling with child behavior problems. As a researcher, I take those clinical experiences and think of new and different ways to solve the bigger problems of earlier identification and management of behavior problems in busy clinics, how to improve communication at the point of care and finding solutions to support pediatricians and families in the process.

It was not until I worked closely with the parents & children who were members of my PAB that I truly began to appreciate just how meaningful their “voices” were to the work I do.

Don’t get me wrong. I have always been a collaborative person. I think that is partly why I love developmental-behavioral pediatrics as a field. It is, by nature, an interdisciplinary field. It is also why my research has always involved working within the clinics and the healthcare team and not simply analyzing data. Add to the mix a wonderful team of health communication designers and I was hooked.

Below is a video filmed by a co-investigator/filmmaker, Mr. C. Thomas Lewis, from IUPUI School of Informatics and Computing a few weeks ago to tell my story about working with a PAB and how it has changed my approach to conducting health services research.

Watch my story by clicking here.

If you are interested in learning more about health services research, check out the Indiana Children’s Health Services Research website at:


ADHD Group Visits: ‘Top 10’ pre-implementation checklist

UnknownThe idea of group visits is not new.  This model has been used successfully by psychologists and therapists for a variety of issues for group therapy and patient education. The first paper using the group model in pediatrics was published in 1977 by my mentor, Dr. Martin Stein, who used groups for mother-infant care. Another set of papers were published by Dr. Lucy Osborn in the 1980s examining its use for well child care and patient education.

In 2005, I was given the opportunity to see parenting groups in action. The group dynamic is powerful. I was able to watch skilled facilitators work with a group of parents who were strangers at first but became a support system to each other over time. Those bonds usually lasted beyond the groups. I was also able to see the methods used to engage participants so they felt the group a safe place for idea exchange, a place to come and learn from each other and even role play parenting techniques. I quickly became a believer. However, its use in pediatrics has remained limited for several reasons. Outpatient primary care pediatrics is high volume and busy. Visits are brief.  Scheduling changes and space considerations and yes, at the end of the day, how would we get reimbursed for these visits?  These issues must be addressed as clinics consider implementing group visits.

One of the things we have learned about designing and implementing group visits for ADHD is that there are common logistical elements to think through before starting:

  1. Identify a champion who can help create enthusiasm and buy-in from within the clinic. This is the essential step. While having a champion is important, it is how the champion can mobilize everyone in the clinic to work together. Even the champion  needs a team to support the efforts. This includes front and back office staff, the clinic manager, nurses and other providers.
  2. Identify physical space for groups. In our group model we chose to run two groups at the same time–one for parents & a separate one for children. This allowed for appropriate knowledge and skills regarding ADHD chronic care for participants. We also wanted a space large enough to allow parents to invite another caregiver or partner, as well as the faciltator.
  3. Determine the frequency of groups.  In our model we chose to offer a new session every 3 months so to coincide with the need for families to come back to the clinic for stimulant prescriptions.  However, we learned from parents that the motivation to come to the groups for the support was more important. Parents were willing to come back every month just for the group. Groups used for parenting support is usually offered weekly; whereas groups for well child visits are overlaid upon the periodicity schedule for health supervision.
  4. Determine the ideal time for groups. In one clinic we offered these appointments consistently at 4:30-5:30pm so to not interfere with school. Another clinic offered it over the lunch hour. In the end, families appreciated the appointments after school for convenience.  It was not uncommon for families to get push back from schools for lunch time group visits since families ended up keeping their children out the entire school day.
  5. Determine a tracking system for families who no-show. Sometimes families just cannot get to the clinic on the day and time the group visit appointments are. Make sure you think through how you will track families who no-show so you can make arrangements for them to follow up. Clinics with electronic medical records could flag group visit appointment days and used a particular group visit template for documentation.
  6. Map out the workflow and assign roles. Consider walking through the process from the family perspective from check-in through check out. This is especially important if the groups are held in a separate space from the clinical exam rooms (for example, a separate conference room).  When will children’s vitals be taken? Take into account if families are being asked to move from one area of the clinic to another. If it makes sense for the medical assistant or nurse to bring scripts to the group after being printed or if you can keep patients in the group space for the duration of the group visit vs. moving families back into individual exam rooms once the group portion ends.
  7. Reminder calls. In our clinics, these were done twice for each visit. In one clinic, one front desk person’s role was to call the day before and the day of; in another clinic, there were automated reminder calls but a few days before a “live” person called the families.
  8. Consider scheduling group visits on a regular basis or at least 6 to 12 months in advance. Families appreciated knowing that the groups were always going to be offered once a month on the 3rd Wednesday of the month. This makes it easier for families and clinic staff. It also makes it easier for parents to plan in advance and take the time off of work or arrange for transportation.
  9. Consider snacks. The children routinely mentioned the snacks were a perk! After school time can be challenging so we offered easy grab and go snacks like granola bars and pretzels.
  10. Have a team huddle the day of a group visit to review expectations and go over logistics.  This is key if the group visits were only 1 or 2 days per month. It was a helpful reminder to all about the logistics of the group visits and allowed for team members to plan ahead.

This was our TOP 10 list of ‘nuts and bolts’ our teams found helpful before implementation of group visits on a system-level. The details will depend on each clinic’s workflow, personnel and populations served. Our curriculum and billing information will be shared in the coming posts.


On improving ADHD care


A colleague of mine published an op-ed in the New York Times on February 1, 2016 “Diagnosis is Key to Helping Kids with ADHD.”  As Dr. Froelich states, even though there is strong scientific evidence that ADHD has a biologic basis, there is always concern whether a child truly has ADHD and if it is misdiagnosed or over diagnosed. The issue is that there are currently no medical or laboratory tests that is inexpensive, non-invasive and has good test characteristics to reliably be used as part of every day practice.  We must rely upon a careful behavioral history that includes asking about the home, family and school, collect parent- or teacher-report on behaviors and functioning and think through this while taking into account behavioral observations.

We still have a long way to go to improve upon the decision making process regarding behavioral conditions. There is not the equivalent of a “swab” or laboratory test to tell the pediatrician, parent or teacher that a child definitely has ADHD.  This is, in part, because behaviors are the equivalent of symptoms of any medical condition. Behaviors are what the parents or teachers see and observe. However, not being able to sit still, daydreaming or being forgetful can represent other things about the child (like chronic untreated allergies, anxiety, learning disabilities, poor sleep, or just plain having an “off” day) or may be a reflection of something else going on in the home environment. This is why it is important to explore the the context around the child and understand how the behaviors impact the child’s functioning in the home and school. It takes understanding the patterns and paying attention to the environment in which the child is in to truly begin to understand the “why” of a behavior.

This is why general pediatricians or family practitioners find behavioral conditions so challenging. However, having only 15-20 minutes to address these complex issues and still cover other topics, do a physical exam and give vaccinations is less than optimal. That is why it is important to examine innovative ways to automate some of the screening processes and use health information technology to remind pediatricians of key information. This is also why we have been working towards developing a new model to improve care in busy pediatric clinics. By restructuring the typical brief visit for individuals into an hour long group visit for up to 6 families, pediatric providers not only get to educate and explore these issues with families, but also observe children with others.

There is so much work to do to improve upon diagnosis and ongoing management of pediatric behavioral conditions. Over the next several posts I will be sharing materials we have developed for our group visits (curriculum, handouts and just lessons learned). The group visit is one option that at our institution has led to increased satisfaction for providers and families, despite the systems-level challenges this model requires. Yet, the group visit model may not be for everyone and is not always feasible.  Explaining this to families is important and acknowledging the imperfect methods we have to identify behavioral conditions. It requires being flexible and re-evaluating if a child’s behavior or functioning does not improve. Also, being open to going back to the drawing board and thinking about other conditions that can mimic ADHD. It means partnering with teachers and educators, and other family members to get their impressions on how a child is doing.  Primary care providers are able to develop long-standing relationships over time and build a working partnership with each and every one of their families. This is also why primary care providers are still best equipped to make the initial diagnosis.

I cannot discount the importance of reaching out to the schools and talking to teachers and daycare providers about their concerns. This step is so important, but can be overlooked at times. Input from schools (whether it be through asking educators to complete screening forms or picking up the phone to ask for their opinions) is a vital part of the process, not just to make the diagnosis but also as part of ongoing management.  We are all part of the family’s team: doctors, teachers, behavioral therapists, tutors, with the family at the center.

There is still so much work to be done. Together we can share solutions, brainstorm additional methods or ways that may help decrease the time to diagnosis or ensure the diagnosis a child receives is correct.


A new handout for ADHD


My passion & ongoing research examines innovative ways (e.g. group visit models, health information technology) to engage pediatric providers and families around common developmental-behavioral and psychosocial topics in primary care.  I am a firm believer in improving communication at the point of care.

Carefully designed handouts can be used for clear information exchange, can be shared with other family members and improve parental understanding.  This is one of my newest handouts that focuses on pediatric attention-deficit hyperactivity disorder (ADHD).  It can be used after completing the work-up for ADHD to help families understand what ADHD is, introduce the idea that treatment actually is not just medicine (which is what I find parents are most worried/concerned about), help families understand who is on their team moving forward and includes simple parenting strategies for helping their child. There is also a message that the medical home should be viewed as a resource for the parents for ongoing support and encourages parents to ask questions.

Download a copy of the English version here*: ADHD Informational Handout

Download a copy of the Spanish version here*: ADHD Informational Handout-Spanish

*Please keep the copyright in the lower right hand corner intact.