Identity Formation and Duchenne

The excerpt below is from our 2022 webinar Understanding B/DMD Behaviors for Adolescents & Adults. Thank you to psychologist Dr. Natalie Truba of Nationwide Children’s Hospital for being our guest speaker. Click here for the full webinar.

Identity Formation and Duchenne

We have to remember that adolescence is an incredibly important period from a critical learning standpoint. Not only is puberty a hell of a drug, but it has a huge role in reorganizing the neural pathways of the prefrontal cortex. That reorganization is important in adolescence for a lot of reasons.

Largely, it drives a lot of unique phenomena regarding how humans develop from a child to an adult: separation from families and a sense of self identity.

Identity Formation

But for these kids with Duchenne, there may be something even more unique… which is how they see themselves in relation to other people. That identity formation during this time is incredibly important.

When you think about how humans have evolved, we evolve in the context of a family. Adolescence is a period where you are able to do more on your own, or your parents can give you that space and you can take those risks socially to kind of feel things out. It’s super important that you actually start to disengage from your family a bit to gain a sense of:

  • Who am I in relation to my family?
  • What do I like and not like?
  • What pieces of me are my family’s values that I’ve learned?
  • Which pieces do I like, which pieces am I going to preserve, and which pieces do I want to do differently?

Well, when you have dependent needs, that process of disengagement is automatically interrupted. So how do we help these tweens with Duchenne navigate puberty and adolescence in a way that helps facilitate a concept of identity formation and a sense of self?

When they get to a place that they can separate, disengage and spread their wings, they need to want to do that, and they to feel capable of doing that. They need to think that “I do see myself as a separate person than my parents and I do want to do my own thing a little bit” or have a life outside of just family.

Skills Needed for Adulthood

This is a time when we start to really refine those skills needed to be a successful adult. If you’re not really engaging – if you’re not going out and separating from your family – then you’re also not learning really important skills like

  • How to initiate conversation
  • How to navigate peer conflict
  • How to date
  • How to manage rejection
  • How to do all sorts of things

There’s pain that comes with learning those skills. And that’s why you hopefully do it when you’re young, so that you have a soft place to land. If you mess up, you’re not gonna mess it up too bad because you have a team of people with you.

But in adulthood, the stakes are a lot higher.

If adolescents miss that period, it can be hard to revisit, because there are a lot of skills that go into learning how to separate from our families. So when that period is missed, you lose your easy opportunities to practice those things. Once you’re out of high school, the transition from adolescence to adulthood isn’t magical. It’s not like you’re all sudden 17 years old and 364 days, and then you turn 18 and it’s like, “Oh, snap, I have all these skills!” That’s just not how it goes.

We’re all adults on the call – do you remember going through puberty? I don’t think any of us would be like, “Yeah, let’s do that again!” You know, it’s a heavy thing.

Lean Into It

I think we get so focused on helping kids with Duchenne be physically healthy, that we sometimes forget that part of being healthy is also being mentally healthy and having a good skill set to help us achieve the things we want in life. But that skill set has to be learned.

So we are just now shaving off the tip of the iceberg. Answers to the question “What do we do to help adults with Duchenne?” are just ice sheets. We have a long, hard way to go to think about what actually is good care to help individuals with Duchenne develop a high quality of life in adulthood. And I think it is really important to use adolescence to encourage them to lean into that space of identity formation.