Attention Magazine June 2018

SLOWLY BUT SURELY, the old stigma attached to ADHD and other neurodevelopmental differences is fading into history. Although full disclosure can still be thorny, the diagnosis of ADHD should not be treated as some shameful family secret. You need not feel defensive or conflicted about your child’s need for medication. This does not mean that you need to hold up a sign, tell everyone you meet, or become a neurodiversity rights advocate. (Not that I wouldn’t welcome the company!) People have a right to privacy when taking any kind of medication. Just don’t feel that you have to withhold information from others who are regularly involved in your child’s life. Failure to disclose can lead to regrettable misunderstandings.

Using some judgement and discretion, I recommend sharing information about your child’s ADHD and medication with carefully selected others who need to know. This usually means telling trusted family, close friends, school personnel, doctors, and others who might be involved in your child’s care. If they are informed about the source of your child’s difficulties and educated about ADHD, these “significant others” can provide valuable support. Most importantly, from the very beginning, open communication sends your child a powerfully positive and inclusive message: It’s okay to have ADHD and take medicine. We’ve all got something.

Don’t avoid

Most parents have anxiety about putting their child on medication for ADHD. They might be concerned about side effects. They might worry that their child will feel stigmatized. These and other common worries may make parents reluctant to give their child medication at all. Or they might go ahead with a trial but opt to avoid their fears and keep their child in the dark. Some parents hide their child’s medicine in food or drink. They may say the medicine is a “vitamin” or offer other euphemisms to avoid talking directly with their child about ADHD.

Although these worries and avoidance strategies are understandable, parents should not lie to their children or avoid conversation about medication. This usually backfires. What if, some mornings, your child doesn’t feel like drinking his or her secretly laced “juice”? And what about when your child eventually grows up and you have to “come clean” about your years of deception?

Think of the medication trial as a teaching opportunity

Instead of avoiding the subject, think of the medication trial as an opportunity to teach your child self-awareness, self-care, and self-acceptance. In a developmentally appropriate and individualized manner, all children can participate in their own treatment trial. Don’t underestimate your child’s readiness to be part of this important process.

The trial is a good chance to demystify neurodevelopmental difference, destigmatize challenges, and teach your child how to describe his or her own profile. The trial can help your child learn to reflect upon his or her own level of self-control. Participation in the trial educates your child about the nature of his or her ADHD.

Customize your communication

Communicate with your child in a way that is age-appropriate and individualized. It’s important to think about the best way for your child to learn about ADHD and medication. The right approach will allow you to communicate with each other, clearly and effectively. Right from the start, your child needs some kind of language for self-understanding, self-acceptance, and self-advocacy. And what works well for children oft en works well for parents, too.

• Simple description. For many children, straightforward description works best. For example: You know how sometimes it’s hard to “stop and think?” Or instead of “stop and think,” you might substitute another term, such as “stay calm,” “focus,” or “pay attention.” Use whatever words—or describe whatever situation—you think will be mostly meaningful to your child: Lots of people—kids and adults—have the same “stop and think” problem. It’s called ADHD. Doctors have medicines for all kinds of things. Even “stop and think” medicine.
• Similes. For some children, similes work best. For example, ADHD can be described as brakes that don’t always work right: It’s kind of like you’ve got a great bike. The brakes just need some fixing. Or ADHD can be thought of as a sleepy orchestra conductor or a sleepy airplane pilot: Great orchestra. Great airplane. We just need a way to wake up the conductor or the pilot. Or, ADHD is like if your pause button doesn’t work all the time.
• Using your child’s own words. Whenever possible, use terms and images suggested by your child. For example, many children will say that they don’t have a problem with “attention” or “hyperactivity,” but they say that they do have a big problem with “concentrating,” “getting distracted,” or feeling like, “I’ve got ants in my pants.” As long as it’s accurate and helpful, go with language that’s most meaningful to your child.
• Avoiding negative language. If a child uses inaccurate or self-denigrating language, substitute more appropriate and accurate alternatives. Do not allow your child to describe him or herself as “crazy” or “stupid” or “messed up.” Teach your child to move away from these pessimistic generalizations. Normalize relative strengths and weaknesses. Especially for older children and teenagers, encourage a more nuanced and positive self-understanding:
  •  Everybody’s got some things that are easy and some things that are hard. What are some of the things that are easier for you? I guess focusing and pausing are just a few things that are sometimes hard for you.
  •  There’s a lot more to you than just your ADHD.
  •  ADHD is not a problem with knowing what to do. It’s really a problem with doing what you know.
  •  It really shouldn’t be called attention deficit disorder. You can pay attention sometimes. It’s just hard to pay attention all the time. It’s probably better to call it attention inconsistency disorder.
  •  ADHD does not have to control you. You can control it!
• Fictional characters and real-life role models. Perhaps your child is familiar with a lovable cartoon character with features of ADHD. For example, Winnie the Pooh’s bouncy friend Tigger. Or Finding Nemo‘s distractible Dory. Share biographies of family, friends, and famous individuals who have overcome ADHD to live full and successful lives. Just search the internet for famous athletes, actors, business people, musicians, scientists—you name it—with ADHD. Examples include Michael Phelps (swimmer), Will Smith (actor), James Carville (political consultant), and David Neeleman (Jet Blue founder). Find an ADHD success story in your child’s area of talent or interest.
• Neurophysiology. Higher-level description of neurophysiology can be surprisingly helpful and effective, even for some scientifically minded younger children. After all, you and your child will be reassured to hear that the brain-basis of ADHD is very well understood. We really do know what ADHD is and how these medicines work. Some kids really love this technical language and high-level explanation. Most parents find it interesting, too.
  •  Referring to anatomic pictures, children and parents can learn about the prefrontal cortex (PFC). The PFC is the brain’s regulatory center or “mission control.” It has nerves that go to other parts of the brain to control different types of thinking, feeling, and moving.
  •  Together, you and your child can learn about the difference between excitatory nerves in the brain—Simon says, “Raise your hand”—and inhibitory nerves—“Raise your hand. Nope. Simon didn’t say.” Then you can see how ADHD is a disorder of inconsistent inhibition.
  •  You and your child can study a picture of a synapse—the microscopic space between nerve endings—and learn about neurochemicals (dopamine and norepinephrine) that send inhibitory “stop and think” signals from one nerve to another. And you can learn about the different mechanisms by which ADHD medicines improve the balance and effectiveness of these neurochemical messengers. Your doctor can draw pictures and explain re-uptake inhibition, increased production at the presynaptic terminal, and enhanced binding at the post-synaptic receptor.
• Treatment trial forms. Children can learn about ADHD while participating in their own treatment trial by using a treatment trial form—or a customized version—to record their own baseline and follow-up symptom ratings. (A free treatment trial form is available on the ParentChild Journey website.) Your child can rate target symptoms and possible side effects just like you do, using numbers: 0 = no problem, 1= little problem, 2 = medium problem, and 3 = big problem. Or your child can use pictures of a smiley face, neutral face, and frowny face. Or green light, yellow light, and red light. Or gestures such as thumbs up, thumbs sideways, thumbs down. Whatever rating system works best for him or her.
  For example, six-year-old Timmy is about to start a treatment trial. His doctor explains: “So, Timmy. We’re going to see if this medicine helps you with your focusing. It’s ‘stop and think medicine.’ Sometimes it helps a lot. Sometimes a little. Sometimes it doesn’t work at all. But it’s safe to try. If the medicine works, great. If it doesn’t, we might try something else. It’s kind of like shopping for shoes. Before you get a new pair of shoes, you need to try them on and see if they’re a good fit. So, we might try some different medicines to see what’s right for you. Every now and then, I’ll ask you what you think and how it makes you feel. You can let me know. Let’s see what you think about things right now. How about your focusing at school? Thumbs up means no problem, thumb sideways means little problem, thumbs down means big problem. What do you think?”

Use some judgement and caution

Although I am a strong proponent of open communication with children, there is such a thing as over-explaining. After you and your doctor present the reasons for trying some medicine, follow your child’s lead about how much he or she wants to talk. Some kids have lots of questions. Some just say, Okay, but then quickly lose interest. Some don’t talk much at first but then have more questions later, especially if medication helps them stay better focused for these types of conversations.

If your child asks questions, keep your answers short and to the point. Be concise. Don’t elaborate beyond answering the question he or she is asking. If you are talking at home and you’re not sure how to answer a question, just say, That’s a very good question. Let’s write it down and ask your doctor at our next visit. If it’s urgent, you can write your doctor an email or make a phone call together.

Be careful not to let your own anxiety propel you to provide too much reassurance or express too much concern. There’s no need to make your child feel unduly anxious about their ADHD or their medicine. Young children do not need to know about all possible side effects. During a medication trial, do not ask your child about the medicine every day. Keep life and communication as normal as possible.

If your child has something to report, of course, listen and respond. Weekly check-ins should be good enough. Asking too much about possible benefits or possible side effects can bias your child’s perceptions. Keep it short and sweet. When you ask, keep it low-key: Hey, since you’ve been taking the medicine, do you notice anything different? Do you think it’s helping? Anything you don’t like about it?

Avoid overpromising. If a medication trial fails, you don’t want your child to feel like their case is especially severe or that they are beyond help. Some parents worry that their children will start to use their diagnosis as a crutch. They fear the child will start thinking or saying, for example, I can’t do it. I’ve got ADHD. Or, I can’t. My medicine isn’t working. Children and adults with ADHD need to understand that ADHD is an explanation for difficulty, not an exemption from responsibility or effort.

In fact, people with ADHD have to work harder at some things than other people. Just because some things are harder does not mean that they are impossible. Your child should know, There’s no such thing as miracle medicine. Your ADHD medicine should make it easier for you to stop, think, and focus. But you will still need to learn strategies, practice regularly, and work hard. No guarantees. If you work hard, your medicine should increase your chances of success. Let’s hope. But you don’t have to be perfect. Just do the best that you can.

Dan Shapiro, MD, is a developmental-behavioral pediatrician in Rockville, Maryland, and a member of Attention‘s editorial advisory board. He is the author of Parent Child Journey: An Individualized Approach to Raising Your Challenging Child (CreateSpace, 2016) and creator of the parent behavior management training program upon which the book is based. For more information, go to ParentChildJourney.com. This article is an excerpt from his forthcoming book, Parent Child Excursions: Special Topics in Raising Your Challenging Child.