Overview of Attention Deficit Hyperactivity Disorder (ADHD)^[1]

Diego likely has attention deficit/hyperactivity disorder (ADHD). Spielman et al. (2020) note in their chapter on ADHD that the symptoms of this disorder were first described by Hans Hoffman in the 1920s. Hoffman was taking care of his son while his wife was giving birth to a second child, when he noticed that the boy had trouble concentrating on his homework, had a short attention span, and had to repeatedly go over easy homework to learn the material (Jellinek & Herzog, 1999 as noted in Spielman et al., 2020). Later, it was discovered that many hyperactive children—those who are fidgety, restless, socially disruptive, and impulsive—also display short attention spans, problems with concentration, and distractibility. Spielman et al., (2020) describe more about the history of ADHD, reporting that by the 1970s, it had become clear that many children who display attention problems often also exhibit signs of hyperactivity. In recognition of such findings, the third edition of the Diagnostic and Statistical Manual of the American Psychiatric Association (DSM-III, 1980) included a new disorder named “attention deficit disorder with and without hyperactivity,” which in later DSM editions would be renamed as “attention- deficit/hyperactivity disorder” (ADHD).

Prevalence of ADHD

ADHD occurs in about 5% of children worldwide (APA, 2013), and on average, boys are three times more likely to be diagnosed with ADHD than girls. When girls are diagnosed, they still have the same level of severity as boys (Barkley, 2006). The diagnostic rate differences between boys and girls might be due to biology, but it could also be due in part to underdiagnosis of girls, who typically are more inattentive and less hyperactive and thus stand out less than boys (Barkley, 2006). Children with ADHD face significant academic and social challenges. Compared to their non-ADHD counterparts, children with ADHD tend to have lower grades and standardized test scores, as well as higher rates of expulsion, grade retention, and dropping out (Loe & Feldman, 2007). They also are less well-liked and more often rejected by their peers (Hoza et al., 2005).

ADHD can persist into adolescence and adulthood, with a longitudinal study finding that 29.3% of adults who had been diagnosed with ADHD decades earlier still showed symptoms (Barbaresi et al., 2013). Nearly 81% of those whose ADHD persists into adulthood had experienced at least one other comorbid disorder (Barbaresi et al., 2013). Longitudinal studies have also shown that children diagnosed with ADHD are at higher risk for substance abuse (Molina & Pelham, 2003), and this risk increases for those with ADHD who also exhibit antisocial tendencies (Marshal & Molina, 2006).

How ADHD Develops in Youth

Genetics play a significant role in the development of ADHD (Burt, 2009), which is highly heritable (Nikolas & Burt, 2010). Studies show that regulation of dopamine could play a role in ADHD, hence why first-line stimulant treatments enhance dopamine transmission between neurons (Gizer et al., 2009, Volkow et al., 2009). From a neuropsychological point of view, ADHD can be described as a condition that affects executive functions, which are responsible for complex cognitive tasks such as reasoning, planning, and impulse control, as well as other cognitive systems (Gizer et al., 2009, Volkow et al., 2009).

Research, clinical practice, and lived experience have supported the conceptualization of ADHD as a neurodevelopmental disorder; claims that it is caused by bad parenting, ‘unhealthy’ nutrition, excessive video gaming or other factors are unsubstantiated. Supportive parenting can indeed help children with ADHD thrive, maintain good behaviors, and develop skills, mitigating the impact of the disorder, but the absence of these parental behaviors does not by itself cause ADHD; the environment is more a modulating rather than an etiological factor, while genetics and neurodevelopment are etiological factors, on the other hand (Burt, 2009).

Developmental Systems Considerations with ADHD

With Diego, it is interesting to note that his mother recalls that he “came out the womb kicking and screaming,” which seems to indicate the early neurobiological underpinnings of the disorder. In this example, we are seeing it across domains. As mentioned in an earlier question, is ADHD about poor parenting? We can see that the disruption caused in the educational domain points to something apart from parenting. If the child was only having problems at home, we could more clearly see the link between family interactions and the behavior. The developmental systems perspective would look at these ecological variants: what contributes to his presentation in different settings? If it was defiance to adults, we are thinking about a totally different disorder cluster. Time matters here, too. We sometimes see development as a way for problematic behavior to resolve but not in this case. Despite interaction with many adults who most likely gave him feedback about his behavior, the ADHD seemed to stick.

As you will read at the end of the treatment section, the ripple effects of ADHD can infiltrate academics, socialization and developing a peer circle, the development of self-concept. So while the etiology of ADHD may appear to be heavily neurobiological, the perpetuating factors are clearly systemic, often predicted by access to treatment. So what happens when children don’t get access to ADHD treatment, or are misdiagnosed all together?

Experiences Across Race and Ethnicity. Scientific literature points to racial and ethnic disparities in ADHD (Morgan et al., 2013), and a recent report from the National Center for Health Statistics presents a similar picture (Zablotsky & Alford, 2020). Analysis of national data indicates that non-Hispanic Black children ages 3-10 years old were more likely to be diagnosed with ADHD or a learning disability than non-Hispanic white or Hispanic children (Zablotsky & Alford, 2020). Family income across all racial and ethnic groups was a predictor of these rates, with the percentage of children diagnosed with ADHD or a learning disability decreasing for families with higher incomes (Zablotsky & Alford, 2020). Consider the cultural factors with diagnostics. How much of the diagnoses are a result of clinician bias? How much is it a result of parental stress due to structural factors?

Experiences of LGBTQ+ Youth. There is scarce data regarding prevalence rates specific to LGBTQ+ children. There is data to suggest that, compared to cisgender individuals, transgender and gender-diverse individuals have elevated rates of ADHD (Warrier et al., 2020). Considering victimization rates with LGTBQ+ youth, a clinician should bear in mind how the presence of ADHD can affect coping and socialization; ADHD can create an added vulnerability for these youth.

Assessment of ADHD

A child with ADHD shows a constant pattern of inattention and/or hyperactive and impulsive behavior that interferes with normal functioning (APA, 2013). Some of the signs of inattention include great difficulty with and avoidance of tasks that require sustained attention (such as conversations or reading), failure to follow instructions (often resulting in failure to complete school work and other duties), disorganization (difficulty keeping things in order, poor time management, sloppy and messy work), lack of attention to detail, becoming easily distracted, and forgetfulness (Spielman et al., 2020). Hyperactivity is characterized by excessive movement, and includes fidgeting or squirming, leaving one’s seat in situations when remaining seated is expected, having trouble sitting still (e.g., in a restaurant), running about and climbing on things, blurting out responses before another person’s question or statement has been completed, difficulty waiting one’s turn for something, and interrupting and intruding on others (Spielman et al., 2020).

Timing is an important consideration for the onset of these symptoms. In the DSM-5, time is a critical component. It states that “Several inattentive or hyperactive-impulsive symptoms were present prior to age 12 years” (DSM-5, 2013), which leads us to believe that if there were no symptoms prior to 12 years, there must have been some activating event like traumatic exposure, a medical condition, or onset of a mood disorder that would lead to the symptomatology. While there can be youth that “fall through the cracks” with assessment, typically those who have severe symptoms will catch the eye of school staff, pediatricians, and the caregivers who are with the child daily (Spielman et al., 2020).

Assessment Tools for ADHD

The diagnosis of ADHD is clinical; that is, it is a judgment from a competent clinician, and currently no tool (questionnaire, test, medical workup, or imaging) has diagnostic ability per se, nor is strictly needed to support a diagnosis. Such clinical judgement is based on the information gathered through interviewing and observing the client and obtaining collateral information from people close to them. In children, diagnosis relays mainly on reports from main caregivers, usually parents, while information provided from other caregivers, and, especially, from schoolteachers, is often valuable. This information should provide evidence of symptoms of inattention and/or hyperactivity and impulsivity in a frequency and intensity beyond what is expected for age and developmental stage, having started during childhood, being present in more than one area of the client’s life, and being impairing and/or distressing, according to DSM-5-TR criteria (American Psychiatric Association, 2022).

When a clinician is assessing a client for ADHD, the interview with the client and their caregivers should include questions about current problems, timing, and their context, as well as other educational, social, mental health, and medical problems in the present or past, a history of the client’s development, with particular interest in possible problems during pregnancy and labor and the fulfillment of developmental milestones. The strategies for interviewing and observation of clients would depend on the child’s developmental stage. In younger kids, more valuable information could be obtained through observation, play, and projection through artwork, while formal conversations would be more valuable in adolescents. Especially with young children, behavior at the clinician’s office during assessment might not be representative of their usual; they might be very excited about missing class or meeting new people and receiving attention, or they might be very shy and scared in a novel situation, or upset due to the disruption of their routines, or hungry or sleepy at the moment. Another concern is that information obtained from their interviews might be biased by lack of insight, agreeableness, or concealing. That is why collateral information is essential, especially if coming from different informants and reporting on observations over a long period of time.

A number of assessment tools have been developed over the years to aid clinicians in obtaining, characterizing, and quantifying information to support their clinical judgment (Weiss & Stein, 2022). Structured clinical interview guidelines exist, which might be of value for research but mostly impractical in regular clinical settings, where time is limited, and the context and purpose of the visits go beyond diagnosing or ruling out a specific disorder such as ADHD. Several rating scales have been developed to identify and quantify symptoms and impact, as well as other features of ADHD beyond diagnostic criteria. Some of these hold promise of becoming useful for screening; they could be used outside of clinical settings and reliably rule out ADHD in children who do not have it while identifying children at high risk who require clinical assessment. Some of these questionnaires are to be completed by the client, others by the caregivers, and others by teachers. These tools have been categorized into those in the Achenbach System of Empirically Based Assessments (ASEBA), which includes the Child Behavior Checklist (CBCL), which inquires for problems and symptoms related to ADHD and other mental health conditions; those within the Conners family, which focus on ADHD, oppositional defiant disorder, and related problems; those following the DSM diagnostic criteria, such as the ADHD Rating Scale and the Swanson, Nolan, and Pelham (SNAP), and Vanderbilt questionnaires, which focus on the symptomatic areas of inattention, hyperactivity, and impulsivity listed in the DSM; the Strengths and Difficulties Questionnaire (SDQ); and others. While the use of any of those questionnaires, separately or in combination with others, cannot replace the clinical diagnosis, incorporating information from some of them, especially when including different informants (client, caregivers, and teachers) and dimensions (DSM criteria for ADHD plus features related to other possible problems and conditions) can provide a comprehensive overview of the child’s struggles, and the rating scores in some of those tools can be used to monitor changes with time and treatment (Mulraney et al., 2022).

A large set of paper-and-pencil and computerized neuropsychological tests have been designed, tested, and incorporated into clinical practice; some of the most used include Weschler and Kaufman Intelligence Quotients (IQ), the Trail Making Test, and the Continuous Performance Test. Such tests, which usually require experts to assist in data collection and interpretation of results, are not validated nor required for diagnosis but can provide insight into the client’s strengths and deficiencies in specific cognitive areas such as general, verbal, and spatial intelligence, executive functions, attention, memory, and more. This might inform individualized educational support strategies (Lange et al., 2014). Finally, to date, no medical workup or imaging tool (such as electroencephalography or magnetic resonance imaging) have demonstrated diagnostic value, although some of those might be warranted if there is reasonable clinical suspicion to rule out conditions that could be coexisting with ADHD or be an alternative cause of the observed ADHD symptoms (conditions such as brain trauma or tumor, nutritional or hormonal deficiencies, etc.).

Intervention

Where would we start with Diego? Scientific literature indicates that the first-line treatment for ADHD is medication (Caye et al., 2019), despite common public perceptions that children are overmedicated. The landmark study – the Multimodal Treatment of ADHD (MTA), indicated that medication treatment was superior to other modalities (The MTA Cooperative Group, 1999), and alternative outcome analyses indicate that the sharpest rate of improvement for youth with ADHD was highest with combined high-intensity behavioral and medication management approaches, then medication management only, then high-intensity behavioral treatment only, and finally standard community care (Conners et al., 2001).

For Diego, stimulant medication does seem indicated. Imagine what that would be like for him, to have that type of support; what would he look like in the classroom? What would it be like to get him out the door to school? I’m sure that there would be fewer arguments related to corralling him to the bus or fewer incidents at school with his teachers or peers. Consider what that would mean for his self-concept. We often see comorbidity with ODD and conduct disorder. Let’s say he doesn’t get the medication intervention and problems persist. Would he internalize these problems and label himself a bad kid?

With stimulants, the important thing to remember is that the most common side effects (decrease in appetite and wakefulness) are usually mild and only present while the medication is in the bloodstream. This makes it important to understand the different pharmacokinetic (the way medications are absorbed, metabolized, distributed, and eliminated in the body) profiles of each of the available brands. For instance, methylphenidate and dextroamphetamines are the most used stimulant molecules, but depending on their brand, they will have different profiles of onset and waning of their effect. Physicians prescribing those medications would usually discuss with parents the best medication formulation (brand) for their kids to make sure they get high blood levels of the molecules during the time of the day they need it most and that the medication gets cleared from the body before bedtime. It is important for parents to note that their children will have less appetite while the medication is in high levels in their bloodstream, so it may be advisable to supplement breakfast and dinner if it is expected that the child would tend to eat less at lunch. Other less frequent side effects are changes in mood and irritability. Prescribing clinicians would sometimes recommend suspending medication during the weekends, on holidays, or after a year since the start of treatment to assess how the child does without them and evaluate the need for continuation.

Medication often lays the basis over which parents, teachers, and, if needed, non-physician mental health professionals can support the children’s skill development. Psychosocial and behavior interventions are also pillars of children’s treatment. Some interventions may be ecological; think about necessary school supports if there really is a learning disorder. Maybe a 504 plan is warranted to provide scaffolding to support adaptive behavior.

So, imagine that Diego is in your office, there has been medication, and there has been educational support. What do we do with the behavior? Common behavioral approaches for ADHD include behavioral parent training, behavioral classroom management, behavioral peer interventions, cognitive training, and organization training (Evans et al., 2014). The common elements within these interventions tend to focus on reinforcement techniques such as time-out, token economies, and response cost techniques that remove rewards or privileges (Floet et al., 2010).

All in all, children with ADHD do best when all actors implicated in their care and support are on the same page. Parents that have been thoroughly and compassionately listened to and educated about the disorder and the available treatments and interventions, and made active participants of the decision-making will be more likely to understand and engage in treatment. Physicians, other mental health professionals such as social workers and teachers should feel an important part of the supportive team for children, listening to one another, being coordinated, and acknowledging and respecting the specific responsibilities and limitations of their own role.

Interventions should aim at increasing executive functioning capacity, namely those skills and processes that help with organization, impulse control, and affect management. A practical exercise to do with these youth is the book bag organization activity. You can instruct parents on how to guide a child through organizing their backpack so they know where their folders and books are and where they can easily find assignments. If the child has siblings, you can organize a game to see who can get a particular item first from their backpack, like a math worksheet. This can preview some organizational skills that can be taught related to school. If children can be organized, it can make doing schoolwork easier.

To take a broader approach, let’s consider what Hinshaw and colleagues (2015) observed in their study about ADHD intervention. They recognize that there are many factors at play in ADHD, such as biological vulnerability, discordant family interactions, peer rejection, and classroom struggles (Hinshaw et al., 2015) which leads to the recognition that ADHD requires a multi-faceted approach, something that would ultimately be grounded in the developmental systems perspective. Consider the ripple effects ADHD could cause; for instance, what about parent support and managing their stress? What about the academic effects of being held back or suspended? Or the loss of friendships and difficulty in making new friends? ADHD treatment should consider these factors as they pertain to developmental continuity and adaptations required to recover.

Clinical Dialogues: ADHD in Children and Adolescents with Dr. Stephon Proctor, PhD

Sean E. Snyder, LCSW: Thank you for joining us Dr. Proctor. Our conversation is going to cover a few sets of questions: engagement, assessment, and intervention. By engagement, we mean the multidimensional commitment to treatment from initial outreach to the ongoing involvement of the family in the treatment episode. With that in mind, what is the typical process for engagement with families?

Stephon Proctor, PhD: Families are usually self-referred, so they call our intake, and at that time, we send out information for the caregivers and the teachers to fill out so that we can have a comprehensive view of the child’s functioning across the home and school domains. Once the information is collected, we will set up an initial evaluation with the family to understand a little bit more what concerns they have about ADHD and/or other behavior problems, because those are sometimes comorbid concerns that come along with it. During the course of evaluation, if we determine that a child does meet criteria for ADHD, we give them options about treatment whether that is internally at CHOP or, if it is outside, with another community care provider.

Options can come in a couple of forms. We do offer parenting groups for parents with children with ADHD, and these are really focused on teaching parents behavior management skills in a group-based format led by one of our clinicians in the ADHD center. We also offer options of individual family-based therapy focused on working with children and their parents on behavior management; this also helps them to navigate things like accommodations in the school. For some children, we have discussions about medication management and facilitating medication management, either inside or outside of CHOP.

Snyder: That sounds like you are really meeting them where they’re at and seeing what’s the best fit for them, given the many contexts of the family.

When I reviewed information on the Center for Management of ADHD, some materials mentioned two groups of youth seen at the center: youth with ADHD and youth at risk for ADHD. What would constitute a child being at risk for ADHD? I wonder if that affects engagement at all.

Proctor: With youth at risk for ADHD, usually early signs come from teachers and/or parents that a child is struggling with academics or behavior. A typical complaint may be that this child is very forgetful and disorganized or zones out a lot. So, there’s concerns about whether there is something like ADHD or something else. If they are younger (and we’re seeing that), then there’s a little bit more concern, and usually what someone is observing are a lot of failures and unexpected behaviors through home or school routines.

Snyder: It’s starting to get flags of what could be a more formal diagnosis. So, it seems there, it would follow normal outreach and engagement. I’m thinking now about the parents and caregivers that may be feeling really overwhelmed before they engage with your center. With that in mind, do you do a lot of psychoeducation on the front end, or do you wait until after the assessment? How do you balance intervention and assessment in that way, considering that families may be feeling a little overwhelmed?

Proctor: We try to do some psychoeducation during the evaluation and then after the evaluation. So, at the outset, it’s really clarifying what’s involved with an ADHD assessment. There’s a lot of misconceptions that families have about how the condition is diagnosed. A lot of times they may ask “Will we have to do a brain scan or an MRI?” Or they may have thoughts about hours of neuropsychological testing. So we try to pause and help them realize that in terms of best practices, it’s really based on clinical interviews and ratings from teachers and parents about a child’s behavior across home and school.

Once a child is diagnosed with ADHD, or even when they’re not, there is psychoeducation about the development of it; that is, how your child comes to have these symptoms. And there is consideration of what is the parent’s role in that. So, we may discuss the different domains of interventions, including things that parents can do at home and school or in terms of medication.

The provider is giving a context for understanding the source of the potential disorder as well as thinking of the potential solutions because a lot of parents are looking for solutions to these challenges. Once they have a label and they know what they’re dealing with, you’ll usually see that a lot of the stress about what the problems are tends to go down. They now know that there’s a clear path for them to be on, as opposed to the potential confusion or lack of information they had prior to coming to our center. Before that, they may have an inkling, and some are just completely confused. It makes it hard for them to know which direction to take because they don’t know what kind of problem it is.

Snyder: It’s almost the “name it to tame it” approach; once they have an understanding of the issue, there is a clearer pathway to approach the issue. It sounds like there’s a lot of prep work that goes into them even getting into the assessments, and by prep work, its overviewing what’s going to happen with the care episode, the general contexts, the rating scales or pre-assessment forms and observations.

Let’s fast forward to the initial meeting with the family. Let’s say the child is in your office, and it’s clear that they’re hyperactive. You see that they may be touching things and are kind of moving around the room a lot. It can be tough for those kids to sit through an evaluation, so how do you engage them in the moment when you are seeing them displaying that hyperactivity?

Proctor: I’ve really tried to help get the child to be involved in the evaluation. I know it may be easier for me to just talk with the parent because I know that they’re going to be a lot more attentive and motivated, but early on, during the beginning of the interview, I actually will start part of my evaluation asking the child about who they are, what school do they go to, who is in their family, what are their hobbies, just so that would they know that I think that their experience is helpful and valid for me. At some point, though, I will have to transition to obtaining more information from the caregivers. I usually will not give any instruction about how I want the child to behave, because I want to get a naturalistic observation of just the child without any structure. There’s data in observation of how the parent responds to the child who is flipping on the couch; that gives me some data for what the child’s behavior is in a public setting, but also gives me some data on how a parent may handle that in a public setting.

At some point, depending on how distracting the behaviors are, I will provide some modeling for the parents, where I may give the child some instructions about how I’d like them to behave, how I’d like them to sit if they’re able to do it. I may offer an incentive in terms of getting to play with some toys in the office. For some kids, we may even use things like stickers and say “if you do a really good job of staying in your seat for the next 10 minutes, I’ll give you a sticker from the sticker book.” The reason I do that goes back to engagement. I want to show parents that this is the exact same type of strategy that I would be coaching you to do, and giving your child clear instructions, observing how they perform, then having some sort of positive reinforcement for that.

I am very big on modeling that from the outset, because it helps me get my evaluation done without too many distractions. It also primes the parent for when we start talking about behavioral treatment. They can remember when I asked their son to sit for five minutes, and I was going to observe how long they could do that. I may say “You could do that when you’re at the Olive Garden,” and I coach the strategies before and during evaluation.

Snyder: This is the classic case where the assessment is an intervention itself but also how intervention can be built into the assessment.

Proctor: I think sometimes, too, I’m thinking with parents where a lot of times they think it’s going to take a complex strategy to get their kids to do whatever they are requesting the child to do. Sometimes, it’s just a simple thing and being structured and intentional with it.

Snyder: So, you get a lot of observational data based on small interactions. How do you balance all the data you get from an interview with all of the collateral reports? I’m thinking of a scenario where the child isn’t hyperactive in the office and maintains focus. The caregivers are clearly distressed by the symptoms at home. What happens if what you see in the office doesn’t match the rating scales and the classroom data. How do you deal with all this information, especially when there could be variance?

Proctor: Oftentimes, I’ll let parents know that my observation is only a data point in this larger view of your child, and I tell them that it actually is pretty common that children will not behave in the same way in our office than they do at home or at school. That is usually because they do not know who we are, and there’s a completely different structure. They can’t really be their full selves, and so I don’t want parents to think that because I didn’t see the behavior that I’m going to negate that parents experience. I do think there is sometimes that fear.

Thankfully, because we know that what the child does in our office is actually not a criterion for the diagnosis, I’m going to rely more on what parents report and the ratings that we get from home and school. And if I have any other data from previous evaluations or previous therapists, all of that is going to weigh a lot more heavily than what I see.

And if I do see the behaviors, I will note it and ask, “Hey mom or dad, is this kind of an example of what you see at home?” And they may reply “Completely, he interrupts us all the time!” Again, I reinforce that my observation is not a make or break for the diagnosis.

Snyder: I’m sure that will give parents some relief as well, right, because they have some expectations coming in, and it wasn’t invalidated by the clinician focusing on one tiny detail among this constellation of data points.

So, let’s get into the nuance of assessment itself. The Vanderbilt can be the go-to measure, maybe because it is freely accessible. What are your thoughts about this measure or using measures like the Vanderbilt?

Proctor: I really enjoy the Vanderbilt. One reason is because it aligns very closely almost item by item with the DSM-5, and so you don’t really have that huge gap between what the diagnostic criteria are and the items in the actual measure that you have. You may see with other conditions, there is kind of a description of the behaviors in the ratings for instance, like with anxiety, where the items on the measure match up exactly with the criteria for generalized anxiety disorder. So 1) the Vanderbilt matches up well, and 2) it’s freely available. You don’t have to worry about licensing and fees and things like that. It’s quick and easy to score, if you were to compare with other measures like the Connors where you have to have scoring software or you have to hand-score, and that takes time. In clinical practice, you want to think about these questions: What’s the most efficient way to get this data? What’s the most efficient way for me to get good data? And I think the Vanderbilt strikes a good balance with that.

It also does a really good job of screening for things like oppositional defiant disorder, anxiety, and depressed mood, which often are comorbid with conditions. Then, it does a good sense of getting us impairment in terms of academics, social and family functioning. It’s also great because when you are collaborating with physicians, pediatricians are more likely familiar with the Vanderbilt if they’ve got some psychiatry training. It’s the most widely used, widely available measure for pediatricians. If you were to switch to something like the Conners, they may not know how to interpret those scores, but most physicians who have some exposure to ADHD are more familiar with something like the Vanderbilt.

Snyder: And with your thoughts about the comorbidity that comes with ADHD, you touch on something so important. Understanding if a child has inattention because of ADHD or because of racing thoughts related to anxiety completely changes the treatment for a child. I’m thinking beyond the Vanderbilt now; there can be misdiagnosis of ADHD as it pertains to trauma or anxiety related disorders. How do you account for the possibility of a trauma related disorder or an anxiety disorder as influencing the client presentation?

Proctor: We do that during the course of the clinical interview. We do a safety screen where we’re asking about trauma, and we’re asking about suicide symptoms like ideation and about suicide attempts. That’s really the best way that we get that information. Some of it may come up when a parent writes it on an intake form. But there again, we’re trying to balance the parsimony of the information that we asked on paper versus what we can gather in person with a lot more nuance.

Snyder: I think maybe even coming at it from that idea of client safety is more relevant to the clinical interview because there are a lot more follow up questions to that. So, you briefly touched on comorbidities in that last response. In that same mindset of thinking of multiple aspects of a child presentation, we also know that domains matter; for a formal diagnosis, there needs to be impairment in a couple domains. What do you do with data that shows impairment in only one domain? What does that tell you?

Proctor: What you must account for is this question: is there a reason that you’re not seeing it? So, for instance, does the teacher have great classroom management, and as a result, the child actually looks relatively impaired because the teacher really knows how to prepare the environment for this child? They may use a lot of positive reinforcement and so on.

The flip side is true with the home. Parents may be able to handle the behavior really well, but the teachers are saying they’re really seeing a lot of challenges. With that, I often ask the parent or the teacher, “If you were not to provide all the structure that you do, which is successful, how do you think the child would perform?” They’ll say, “Oh yeah, well, he will forget his jacket and his lunch every day if I didn’t stay on top of them.” So, I do treat that as an indicator of what would happen without all the extra support there, if that makes sense. What would happen if this child didn’t have a 504 plan and extra reminders?

Often the biggest comorbid condition with ADHD tends to be oppositional defiant disorder. A parent may say, “Well, my child doesn’t listen to anything I say,” and in the clinical interview, you may find that the child hears the parent perfectly fine but refuses to follow through with the command. They may even have very overt ways of letting the parent know that they didn’t want to do that, through things like hitting, screaming, kicking, or laying on the floor. And so, another consideration is this: is there actually a different disorder that explains or describes what is happening in this interaction, so to speak with one parent and the child versus a child and the teacher?

Snyder: That makes sense because it’s like the idea of what’s really driving the symptoms that you’re seeing. Is it in relation to inattentiveness or is it something with relating authority figures? Diagnostic clarity is huge.

Last questions with assessment before moving more specifically to interventions. What do you make of what seems to be the increased prevalence of ADHD? There’s some sociological theories out there that say high stakes testing has contributed to this rise in ADHD diagnoses, or clinical theories may say we’re measuring it better. I see a lot of ADHD in my practice and I wonder often, what’s happening with this increased prevalence or at least what seems to be an increased prevalence?

Proctor: That’s an important question: is it what it seems like versus is it what’s actually happening in nature? And I think the answer is complex. There’s just more awareness and acceptance of it, but you can find this with any condition, that society becomes a lot more comfortable with mental health over the long term, and so people are more willing to report having histories of it or concerns of it. So, I think that’s one part; it’s going to just be more accepted as a diagnosis, not seen as stigmatizing as some other conditions.

I do think there may be the chance for it to be overly diagnosed because not everyone who received the diagnosis receives the comprehensive evaluation. A lot of providers in the mental health field will tell you that they’ve received a report from another therapist or a doctor that has given a diagnosis of ADHD, but there doesn’t really seem to be a strong basis for that diagnosis. Maybe they only got information from the parent and nothing ever about the teacher, but it seems like ADHD, so they gave a diagnosis and that can inflate the official statistics about the rates of ADHD.

Usually what I’ve seen in the past is that most concerns about mental illness don’t come straight to a mental health provider. It usually comes to medical providers like a pediatrician, and some pediatricians do feel comfortable with identifying and even managing some of these child areas. However, they’re not always as skilled or trained in the assessment of these conditions. Someone who is not so skilled with ADHD diagnosis and identification maybe does not do much of a comprehensive assessment, so their diagnosis of that child is kind of a “plus one” in that category of the prevalence of ADHD.

Snyder: Yes, I think I see that a lot in evaluations. ADHD, by history, somebody gave the diagnosis, and it gets continued, or, like you said, sometimes it’s based more on heuristics like case examples versus doing a thorough assessment.

We know that any good assessment needs a formulation to tell the context of the interview, and a good assessment links treatment outcomes with recommendations. So, let’s get to intervention. “ADHD and medication” is a recurring story. There are studies that indicate that medication is the frontline treatment, which sometimes gets a negative reaction from mental health clinicians, and sometimes medication can carry stigma for families. So, what are treatment planning conversations like with families, knowing that this is the frontline intervention? Are families receptive or resistant for the most part?

Proctor: So this is definitely a conversation most families are already prepped for, with different avenues about how to respond. Some families are receptive, some resistant, some are curious, and everything in between. I first start with the research, like the MTA studies that show children who have a combination method of ADHD behavioral treatment and medication tend to have better outcomes than children who have a singular treatment. I start off by saying in general what’s helpful for a kid.

I do of course spend a lot of time talking about behavioral treatments, because I think they should always be present, regardless of whether you choose to medicate your child. When I talk about medication treatment, I discuss the benefits and the side effects because, I think, of course, most families are concerned about the side effects. In terms of the benefits, I often talk about it addressing a lot of core symptoms of ADHD, like inattention, hyperactivity, and things like that. But I also talk about how medication has come a long way since a lot of parents first learned about it. Most parents have kind of a view of Ritalin and Adderall, because those were the two medications that were really the dominant ones for the past 20 to 30 years. And now we have maybe 10 to 12, or maybe even more, with different formulations in terms of whether they’re short or long acting, and different routes, whether it’s a pill, sprinkles, liquid, or transdermal patch.

And so, I bring that up, and I also give them an example of kinds of stimulants that they may be using that they’re not even aware of. I say, “Mom or Dad, do you guys drink coffee? They’re like, oh yeah, we drink coffee.” And I said, “well, I don’t know if you know that that’s actually a stimulant, and it stimulates your brain. You take that in the morning, and it helps kind of shake the fog off, and it helps you concentrate.” And then I would go on to explain that throughout the day, your body metabolizes it, and you may get another cup of coffee, or you may be done for the day. I want you to think about that with ADHD medication. The same way that a child takes this medication in the morning. It’s a lot more targeted than your coffees, so please don’t give them Starbucks every morning. But I do want you to think about that. This stimulant is formulated differently. It does help your child focus through the school hours. Some children may need only something that lasts six hours, and some children may need something that lasts throughout the day depending on the severity or their symptoms. And the good thing is that just like your coffee the ADHD medication gets metabolized throughout the day, and so, by the time the child goes to bed, it’s pretty much out of their system. And then the next day they take it again.

So, the benefit of ADHD medication is short acting. The benefits, as well as the side effects, only affect the child during the duration that they’re actively on the medication. So, if their child has a side effect, let’s say appetite suppression, you can stop taking the medication, inform the prescribing provider, and you won’t have to worry about that symptom until the medication is adjusted. I think that relieves a lot of the initial stress on families because there is this perception that the child may have to be on it for a while and that you really have to accept the side effects. With the benefits, I have to say, we actually have a lot more fine tuning than we did with previous medications, where for some kids their first medication is a home run, and with other kids, there is a little bit of a trial and error approach. It’s hard for me to know at the outset which one is going to be right for your child. But because it’s so short acting, you can still feel cautious about the side effects and also dip your toe in, so to speak, and see what happens. I say most families are more receptive if your conversation takes that approach.

Finally, if a parent asks, “How would I decide whether to use a certain medication? Do I do it sooner or later?” I say it’s based on the severity of the presentation and what interventions are present. If we can divide up ADHD severity, in terms of one, two, and three, a level three is a more severe child and is maybe even to the point where they’re being disciplined in school, made to repeat a grade, or being expelled. It’s causing a lot of issues in the classroom, and the child is getting daily reports home from the teacher about this disruption. That’s more like a level three. Level one is the kind of child that really doesn’t get noticed much, and there’s symptoms here and there, but for the most part they’re getting by. And then you have a level two who are those in the middle. I’d say if a child was a level three, where the ship is sinking, so to speak, I would have the discussion about medication sooner rather than later, because school is cumulative and whatever your first grader doesn’t learn this year, they will miss for the second year as well because the teachers don’t have the opportunity to go back and teach your son everything that he missed because of his ADHD. Now if your child is a level one, you might see how well a child can do with just behavioral accommodations in school and at home, and some children actually do pretty well with just behavioral interventions. If you find that your child is a level one or two, and you’ve done behavioral treatments either individually or in group, but they are hitting a plateau, and we’re not really getting much more extra benefit, then I might say, let’s try medication.

That approach tends to give parents a little bit more control, where they think “We don’t have to decide today for medication for our child.” They can actually take a more conservative approach, which is either start medication and behavioral treatment at the same time, or start behavioral treatment and wait to see later on if medication is warranted. I find that approach helps with the receptivity versus a statement like “Your child has to be on medication,” because that’s a one size fits all approach, and as we know, every child with ADHD and their family situation is unique. I think we need to tailor our interventions and recommendations based on those factors.

Snyder: That point touches on neurodiversity and also ecological diversity with these youth. We need to think about where our treatments are happening, with whom, and in what contexts. With behavioral treatments and psychosocial interventions, are there any go-to treatments that you recommend, for instance, or specific protocols?

Proctor: Anything based on behavioral treatment is definitely my go to. Many people may be familiar with Barkley approaches in terms of therapist manuals, but also the parenting books which are highly accessible. Other treatments include things like Rex Forehand. At our center, we tend to default more towards the Barkley based treatment manuals, but I think that’s just based on history. You’ll find that there’s other treatments that are not necessarily focused on ADHD, per se, but still have behavior management. Things like the Incredible Years are good for much younger children, and even PCIT for much younger children. They’re not specifically focusing on ADHD symptoms, but behavioral treatments still do tend to generalize.

I would say Barkley’s tends to focus more squarely on ADHD from the education piece but also kind of making your behavioral interventions focused on those core deficits that children with ADHD struggle with. We may find that children with ADHD also struggle with poor emotion regulation, and many ADHD treatments don’t focus on the emotional aspects of inflexibility, per se. I’m finding that things like the Explosive Child book is really helpful for children who just really have this explosive reaction to the environment and use that as an adjunct on top of the behavioral treatments that you’re doing for ADHD.

Snyder: What about alternative treatments? There have been some studies about neurofeedback for instance. What are your thoughts on those alternatives?

Proctor: Yeah, those are popular alternatives right now. I think it’s because sometimes parents who are cautious about medication treatments want to see what else there is, and it’s valid to kind of wonder if they’re missing something. Things like neurofeedback sound very scientifically legitimate, where you’ve got your child in an EEG cap, so it feels very official. But when we reviewed the literature on neurofeedback, it’s not very strong. What you may find is that studies show positive results, but the positive results are only in the domain or the task as a child’s being tested on, whether it is an interactive video game that the child is being tested on or a certain type of behavioral inhibition task. They may improve on that; however, it doesn’t generalize to actual everyday behaviors. If you were to ask a parent, “Give me the top three behaviors that your child struggles with,” it’s going to be things that are happening in the real world, like he forgets to bring home his homework assignments. Well, neurofeedback isn’t going to help with that.

What I often say to them is that the science currently says that the behavioral treatments and medication are the frontline interventions; these are currently the gold standards. You would want to start with a gold standard. And if you’re finding that you’re having trouble with accessing those treatments or having limited success with that, then you may want to consider complementary, alternative treatment. I would be cautious about starting with a complimentary or an alternative treatment because if your child doesn’t succeed or get benefits with those, you’ve lost valuable time with the child’s development because the child has been quite likely undertreated for more of the typical school year. If you spent half of the year doing neurofeedback well that’s also half of the year that you weren’t doing other things that could actually have benefited the child based on what the research says is most effective.

Snyder: Right, there’s the difference here of lab conditions that show efficacy versus the effectiveness in real settings. So, to summarize what you just said, go with the gold standards, and if those aren’t helping, then go to alternatives, as ADHD problems have a cumulative effect on child development.

We are reaching the end of our time with this interview, so I’d like to get some final words from you. What are some core pieces of advice you would provide trainees or folks with who want to improve their practice with working with children with ADHD?

Proctor: So, if I’m thinking of a trainee in mind, I think some tips that I would suggest to them are that sometimes there is this focus that a therapist needs to treat the child. And I want to underscore that whatever direct work you’re doing with the child is going to be a drop in the bucket, because really the most sustained benefit is going to be from what you teach the parents to teach the child when they go home. So, the real work happens in between sessions and not in your session. I wanted to alleviate some of that kind of pressure that sometimes we either put on ourselves or that we feel like our supervisors put on us to “fix the child,” and I would even sometimes say the parent puts that on us like, “Oh, well, I’m going to drop my child off, and you’re going to rid them of like ADHD.” And I say, “No, you’re coming in, you’re going to be part of the session to help me with that as well.” So you’d find that if you were to watch me do therapy, I actually spend most of my sessions with the parent and the child in the room so that we’re working collaboratively on the behaviors. But I’m not spending much time individually with the child unless they’re kind of older, like a teenager, like a high schooler; then I can start to work more individually with them.

I’d say for early treatment, I find it is most effective to bring the family, because it delivers the message that we’re all part of this and not that the therapist is magically fixing your child while you’re in the waiting room. You may find that a lot of children with ADHD are not very engaged in the treatment, per se. They don’t often see the same deficit that their parents or teachers do. Most kids, if you ask them “are you having problems in school?”, they’re like, “I’m fine.” So, their insight into their ADHD tends to be kind of low, whereas everyone else may be kind of feeling like, “No, this child’s really impaired.” And that’s okay. I think some of it is because everyone else picks up the pieces after this child, so the child doesn’t really have to pick them up as well. Don’t take it as a sign that the child doesn’t have ADHD because they’re not reporting symptoms of ADHD. It’s very common for them to not endorse the same symptomatology as parents and teachers.

Snyder: You have contextualized ADHD into the developmental systems approach so well today, discussing that there are other contextual factors (e.g., risk/ protective factors) and proximal processes that can promote healing recovery and overall better quality of life for the child and family. It will greatly benefit our readers. Thank you, Dr. Proctor!

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