Disclosing DMDD: What to Say and How to Say it

Written by Jennifer Perillo, who is the mom of a wonderful daughter who was diagnosed with DMDD. She lives in New Jersey with her family, dog, gerbils, fish, and parakeet.

The decision to tell anyone about your child’s DMDD is deeply personal and can be very frightening. While our society as a whole has become much more open about mental health in recent years you still can’t predict how people will react. Will they understand and be sympathetic, or will your child be stigmatized? Will they stick by you, or avoid you? Can you count on them to truly listen and help you, or are they going to offer lots of useless advice and make things worse? If you are thinking about sharing your child’s diagnosis with anyone, consider the potential positives and negatives. On the positive side: you may receive more support and understanding (which can boost your own mental health). You may feel the relief of not having to lie about your child’s behaviors or your family life, and your child may reap tangible benefits (for example, accommodations at school or in activities). On the negative side: you may be disbelieved (“It’s not a mental illness, that kid just needs more discipline,” for example). A surprising number of people still don’t accept many mental health diagnoses. You may hear lots of unhelpful advice and judgments about your parenting. Most painful of all, other kids and parents may shy away from your child and your family. It hurts me to think of all the friends my daughter has lost through the years. But the ones that remain are tolerant and supportive and cheer on her progress. They truly realize what a big deal it is for her to hold it together for an entire birthday party or a long play date. On the other hand, they take it in stride if she is irritable or having a bad day. Those are the kind of friends she (and I) desperately need.

When deciding whether to tell someone, think: What purpose will this serve? You may have to tell teachers and school staff because your child needs special accommodations. If you have close neighbors that are likely to see or hear your child’s outbursts, it may be helpful if they understand what’s going on. Your employer may (hopefully) be more tolerant about you taking time off to get your kid from school if they know the cause. You may also selectively choose close friends and family members who you think will offer support. (On the other hand, feel free to ignore those who won’t.) Part of this depends on how your child’s DMDD manifests itself. Some kids only have outbursts at home, not at school; in that case, teachers and staff may not necessarily need to know. (Or, you may decide to share with school staff in case the situation changes.) In my case, my daughter raged at school, at home, in the store, on the playground, and just about everywhere else, so my husband and I had to explain her behaviors to many people.

When I did trust someone enough to talk about our daughter’s diagnosis, I was surprised by how often they responded with a disclosure of their own: that their child/grandchild/neighbor/nephew had anxiety, depression, ADHD, or some other issue that they were trying to manage. While DMDD may be uncommon, mental health conditions, in general, are not - and I found a lot of sympathy and understanding from people who were familiar with them.

Here are a few suggestions for how to talk about DMDD:

Start slow. You don’t need to share your child’s full medical history. It may be enough to say, “My son struggles with...” We used to say that our daughter “was working on managing her emotions,” and that was enough to explain an outburst at the supermarket. This might be all you need to say to indicate that your child has an issue, that you are aware of it, and you are addressing it.

Refer to the diagnosis in a general way. As a next step, you might say that your child has a “mood disorder” or “neurobehavioral disorder” that you are working on helping her/him manage.

Refer to a related diagnosis (if your child has one). In my experience, people are much more familiar with (and tend to have more sympathy for) conditions like ADHD, ASD, depression, and anxiety. So if your child has any of those diagnoses, you might start by disclosing that first. You can gauge their reaction and then determine if you want to talk about DMDD as well.

Accentuate the positives. Your child is not just a diagnosis and a set of negative behaviors. Be sure to remind people of your kid’s positive qualities and interests as well. Present your child as a whole person. For example, some parents to give out flyers to teachers and staff at the beginning of the school year. It frames DMDD behaviors in non-stigmatizing ways like “what my child is working on” and “what helps” as well as highlighting the child’s strengths and hobbies.

Share the plan. When we go out, my husband and I always have an exit strategy planned in case my daughter starts to lose it. If it seems appropriate, we will share those plans with others in advance. For example: “I’m sure she’s going to have a great time at this party, but if she gets overstimulated, we’re going to take her home early.” Or: “She’s been having a rough morning, so we may not stay for the entire soccer practice if it seems to be too much for her.” Note that you don’t necessarily have to bring up DMDD in these examples; you’re just giving folks a heads up and a reason for your child’s behavior. And it will be easier to make a quick exit later on, should you need to remove your child.

Explain what works. Whether or not you disclose DMDD, you can try to prepare people for your child’s behavior. What should someone do if your child starts to meltdown and you aren’t there to step in? Some kids hate to be talked to or touched, for example, while others don’t want to be left alone. Offering simple advice about what to do and what not to do is helpful. This isn’t possible for every parent, but for me, I didn’t leave my daughter alone in situations where I thought there was a chance she’d act up. For a long time, I accompanied her to every birthday party, Girl Scout meeting, and karate practice because I didn’t want anyone else to have to handle a meltdown.

Recommended Resources:

If you are lucky, someone that you tell - a family member, close friend, or your child’s teacher - will want to learn more about DMDD and how it impacts your child and your family. Here are some terrific resources to offer anyone who wants to understand more about DMDD:

Provan, Holly Rae & Provan, Eric (2019). Poppy and the Overactive Amygdala. This empathetic and simply written book scientifically explains DMDD and what happens during and after a rage. It also mentions related conditions in nonjudgmental terms. It is suitable for anyone who wants to learn about DMDD - even young children. The authors list tips for various situations that are extremely helpful, especially to teachers and caregivers. It’s brief, which makes it a great resource for teachers or others who may not have a lot of time for extra reading.

Fisher, Larry (2015). Disruptive Mood Dysregulation Disorder (DMDD): Developing Treatment Strategies. This is a series of five videos that total an hour. The late Dr. Fisher, an expert in childhood aggression, explains DMDD, how it manifests in children, and what treatments may help. Many people who are stymied by a DMDD diagnosis find these videos invaluable for understanding this disorder.

Wilkinson, Berney and Marshall, Richard (2018). Disruptive Behaviors in Children with Disruptive Mood Dysregulation Disorder. This is a 15-minute video dedicated to DMDD. It explains the history of the diagnosis (and how DMDD differs from ADHD, ODD, bipolar disorder, and other conditions, which can be useful for those of us who are confused by all these diagnoses). A second, 25-minute video, Disruptive Behaviors: Treatment, talks about the best ways to manage these behaviors. (These hosts also have videos dedicated to ADHD, ODD, and other mental health conditions.)

Greene, Ross W. (2014). The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children. This book lays out an approach to identifying a child’s lagging skills and collaboratively finding solutions to those issues. This would be best for parents, guardians, or others who are raising a child with DMDD.

Greene, Ross W. (2014) Lost At School: Why Our Kids With Behavioral Challenges Are Falling Through The Cracks And How We Can Help Them. This book applies Dr. Greene’s approach to school settings. A fantastic resource for teachers or school administrators who are highly motivated to learn more about working with kids with neurobehavioral issues.

Sample School Flyer

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