Independent, Yet Dependent

Thank you to psychologist Dr. Natalie Truba (of Nationwide Children’s Hospital) for identifying these “elephants in the room” in our webinar Behaviors of Adolescents & Adults with DMD.

Independent, Yet Dependent

When an adolescent with Duchenne turns 18, he or she suddenly acquires incredible responsibilities, many akin to higher level management responsibilities within a large company.

Virtually overnight, the rookie 18-year-old with Duchenne is expected to be medically capable. This means understanding and using medical terms, having the capacity to be able to talk with medical providers and also to navigate the visits to get their physical needs met, despite the higher rate of social challenges affiliated with Duchenne.

They are also expected to have the cognitive capacity to coach others how to help them, despite a typical 2-year delay in cognitive function. Young adults with Duchenne are also expected to hire, manage and fire in-home caregivers. These responsibilities essentially put them in the role of a manager or a business owner, again despite the social and cognitive challenges mentioned above.

The challenges of physical dependency complicate social situations as well.

Since men and women with Duchenne need considerable assistance just to live daily life, they need a companion with expertise most hours of the day. This includes needing a companion to help them socialize outside the home. Socializing in the local community helps to develop their sense of self, to pursue friendships, romantic relationships and even intimate relationships – all of which are important when entering adulthood.

Understandably, parents and other caregivers may not be comfortable assisting in these situations. The adults with Duchenne may not be comfortable, either.  Who is left who is willing to help?

Some adults with Duchenne may have friends who are willing to help, but not always. If they do have peers willing to help, the adults with Duchenne may actually need social skills training. Many individuals with Duchenne lack constructive communication skills. They may need direct training in how to clearly and kindly manage the multiple dynamics of friends as caregivers, including instruction on explaining their physical needs and how to help.

Due to physical limitations and unmet needs in social support, many adolescents and adults with Duchenne simply will not have robust opportunities to explore dating, intimacy or sexuality as teens. If there are any opportunities at all, they will likely be limited. 

Prior to seeking the appropriate support person for socializing and intimacy, many adults with Duchenne may have unformulated questions about social relationships and intimacy. If they are able to formulate the questions, they may not know how to initiate the conversations and even who the appropriate people are to talk to.

Finally, even if cognitive capacity isn’t an issue, it’s highly unlikely that adults with Duchenne would even have a peer group to discuss such matters with.

Unfortunately, many of these obstacles are insurmountable for adults with Duchenne and those pivotal peer relationships may remain nebulous. Compounding the matter is that lack of experience can make socializing even more intimidating and can make isolating more alluring.

More to Consider