By Susan Fawcett, PhD, RSLP
Reprinted from 3.21: Canada's Down Syndrome Magazine (Issue #7: The Teen Issue). Click here to download the full magazine.
“Selena Gomez is my girlfriend.” “Shawn Mendes is my brother.” “I did a triple backflip on my skateboard yesterday.”
The teachers and therapists at the Down Syndrome Resource Foundation are regaled with tall tales on the regular. Since we all have dreams, aspirations, and goals – many of which never come to fruition – parents may struggle with striking a healthy balance between encouragement of dreams and what is realistically attainable for their teenagers with Down syndrome. Along a similar vein, parents often have concerns about teenagers who become too absorbed in the fantasy world associated with their favourite movies and TV shows.
What is “fantasyland” and why does this happen in people with Down syndrome?
Teenagers and young adults (and even sometimes older adults) with Down syndrome have a strong tendency to become enmeshed in fantasy worlds. For example, they may repeatedly watch certain scenes from favourite movies and then act them out, report that they know or are friends with certain celebrities, or participate in role play and/or self-talk alone in their rooms.
Experts in the field of mental health in people with Down syndrome have proposed that this development of a rich fantasy life may stem from their relative strength in visual memory (McGuire & Chicoine, 2006). In addition, the crossover between reality and fantasy may be developmentally appropriate for teens and adults with Down syndrome (for example, something akin to younger children’s belief in a tooth fairy). The authors point out this blurring of lines between reality and fantasy is not likely to indicate psychosis, which is a serious mental health diagnosis involving a person’s compromised relationship with reality. Psychosis, symptoms of which include hallucinations and delusions, is rare in individuals with Down syndrome.
Getting lost in fantasyland may be more likely when a teen is bored, or not given the right level of challenge at school. During the current pandemic, there may be an even higher risk due to teens’ lighter schedules, or a feeling of anxiety or sadness. How often do we all turn to the comfort and escape provided by TV when we feel this way?
Another possibility is that fantasy life may simply be the more enjoyable alternative for teens with Down syndrome much of the time. By the time they are teenagers, there is a large gap in the abilities of people with Down syndrome and their typically-developing peers. By this time, they may no longer have common interests with these peers, and may not be able to keep up in conversations. Meaningful social relationships may dwindle as a result. At this point, imagination, fuelled by movie characters, pop stars, and social media celebrities can take over.
This foray into fantasyland is likely also at play when we hear teenagers with Down syndrome express goals and dreams that are unrealistic. Having high expectations for people with Down syndrome is a good thing, and we all have dreams and goals that help us stay engaged and motivated. However, teens with Down syndrome often cling to aspirations that are not realistic or attainable. For example, they may express that they would like to marry Harry Styles or Mickey Mouse, or that they’d like to have jobs that may not be realistic for a person with an intellectual disability, such as being a teacher or a flight attendant.
Because we are caring people who are genuinely interested in what teens with Down syndrome have to say, parents, teachers, and therapists tend to smile, laugh, or express surprise when these fanciful ideas are communicated. At first, we may think these are cute or creative, and we inadvertently reinforce these wishful expressions. We often ask questions about these unrealistic dreams, because they are interesting, and because the teen seems passionate about them. All of this teaches the teen that expressing these wishes gets plenty of attention from adults. Too late, we start telling them, “That’s not going to happen!” By this time, the teens often have their hearts set, and we know how difficult it can be for people with Down syndrome to break free from ingrained interests and patterns of behaviour.
What behavioural changes should I watch out for?
There may be several symptoms or warning signs that your teen may be pulled too far into fantasyland. These include:
Spending increasing amounts of time alone (e.g., in room at home), especially if engaged in self talk, repetitive role play, or spending time on screens
Getting “stuck” on particular movies, or specific movie scenes
The fantasy world interferes with the teen’s participation in the regular routines of life; i.e., it’s hard to redirect your teen back to usual activities
Appearing to have full back and forth conversations with imaginary others; especially if these take the place of real interactions
Expressing that they know or interact with celebrities; e.g., that a particular celebrity is their boyfriend or girlfriend
This is now an even more pronounced issue given the popularity of social media. Teens may have the perception that they really do know celebrities, given how often some of them post updates and videos, and the minute details of their daily lives that are shared. TikTok and YouTube videos are typically done in a conversational manner, including greetings (we have heard students at DSRF respond verbally to these greetings – “Hey! I’m good!”). In addition, teens may comment on posts, further encouraging the feeling of having genuine interactions. Most of us recognize that this is not a meaningful relationship, but this may be a very difficult distinction for teens with Down syndrome to make. The take-home message: closely monitor your teen’s social media use!
The Days of our Lives
In my years at DSRF, I have seen many detrimental effects in teens and adults with Down syndrome who spend too much time watching soap operas. Soap operas, or other similarly dramatic shows (possibly including many reality TV shows; e.g., consider “The Real Housewives of…” series), may be particularly appealing to people with Down syndrome due to the overly dramatic, almost cartoon-like, facial expressions, body language, and gestures performed by the characters. Many people with Down syndrome are highly empathetic and socially motivated with an ingrained flair for the dramatic. The problem is that “Days of Our Lives” is not a cartoon – the characters are clearly real people, enacting scenes in familiar places, with storylines that continue over months or years. All of this makes it harder for the teen to distinguish reality from fantasy.
The results of watching too much? At DSRF, we’ve seen re-enactments of scenes they’ve watched (slamming doors, yelling at coworkers or peers), and ordinarily calm teens and adults who have episodes of violence (kicking walls or punching peers). I would highly recommend limiting your teen’s viewing of soap operas, reality shows or any other show that depicts violence. At the very least, try to watch these with your teen, and debrief afterwards about the unreality of what they have just viewed.
What strategies can I use to help my teenager with Down syndrome stay clear of fantasyland?
Try to encourage your teen to engage in a variety of activities on a day-to-day basis. While routine is preferred and adaptive to a degree in people with Down syndrome, we also want to build in experiential diversity and flexibility. Help your teen choose a few items to do each day from a list of fun, educational, or physical activities, especially ones that involve interacting with others. You can compile this list of activity choices together!
Limit time spent alone in their room, especially if screens are involved. Screen time is particularly problematic if the teenager is watching shows that include violence. And watch out for soap operas – they can be particularly troublesome (see sidebar).
Keep in mind that while untrue statements like, “I went on a date with Justin Bieber” might sound like lies, the person with Down syndrome may fully believe these are true or real scenarios. Telling the person not to lie may carry little meaning, and disciplinary consequences for “lying” will likely be ineffective. If you contradict your teen, the most probable resulting scenario is that the two of you will be pulled into a disagreement or argument, which rarely has the outcome you were looking for. Don’t draw undue attention to these statements: in most cases, the best course of action is to ignore the comment and change the topic.
Teach your teen about real vs pretend, fiction/story vs non-fiction. This may not occur to parents as something that needs to be explicitly taught, as they may not have had to do this with typically-developing siblings. Try these activities to demonstrate the concept:
Outline all the differences between a real house and a dollhouse, as many teens will have played with a dollhouse when they were younger and this is a highly familiar concept overall
Show photos of an actor beside the character she or he plays in a movie, and discuss their differences. This may enhance their understanding that the person is playing a role, and that the character/show is not the same as real life
Ask a therapist or teacher for a “real vs pretend checklist”
Ensure your teen with Down syndrome has regular, meaningful interactions with at least one friend who is at or near their developmental level. This will usually mean a teen who also has a developmental disability. Think about how you would feel about only hanging out with people who you could not keep pace with intellectually. Your self-esteem would suffer, and you might also be tempted to look for escape from the situation, and/or alternative ways to spend your time.
What strategies can I use to help my teenager with Down syndrome have more realistic dreams and life goals?
Remind yourself that almost everyone has dreams that do not become full reality (otherwise, I would have enjoyed a stint as a professional ballerina!). It is a healthy developmental process.
If you hear your teen persistently express an unrealistic goal, it is important not to inadvertently encourage this by laughing or asking the teen questions that lead them further down the path of fantasy, entertaining though answers to these may be (e.g., “Who will be your bridesmaids when you marry Mickey Mouse?”). Instead, try the following sequence:
First, model back any part of the teen’s dream that may be attainable. “It sounds like you really want to get married / live on your own / make some good money!”
Then, gently point out what aspect is not realistic: “You can have a boyfriend or get married, but not to Mickey Mouse.”
Share an unrealistic dream you once had, including feeling great about your current life even though you did not attain the dream: “I used to want to marry Joey Tribbiani from Friends! I had a huge crush on him! Isn’t that funny? But I couldn’t. We didn’t live in the same city. We didn’t know each other. I only saw him on TV, never in person. I never talked to him or gave him a hug. But then I met your Dad, and I got married to him instead! That’s been pretty great!” Gather more real-life examples of this from peers and other adults in your teen’s life. You could even have your teen do a survey.
Clearly outline the reasons why this particular dream cannot happen: “You can’t marry Mickey Mouse because he is not a real person, cartoons can’t marry people, he lives in Disneyland and you live in Canada, etc.”
Finish with a positive action by making a plan together for how your teen can achieve her or his goal of getting married one day. Try to find a role model with Down syndrome who has accomplished this. Outline the steps your teen will need to take and then help them get started. In the marriage example, you will want to address building life skills so they can live independently as part of a couple, as well as the rules for dating and learning relationship skills. (Andrea Lee, our Comprehensive Sexual Health Educator at DSRF, is a great resource for this information; see her article or contact her at email@example.com.)
I have always encouraged parents to have high expectations of their children with Down syndrome. But we all need to take care to ensure we bolster only those goals and dreams that are at an appropriate level. Actually achieving goals, or the small steps on the way to bigger goals, do wonders for self-esteem. And couldn’t all teens with Down syndrome use a self-esteem boost?
McGuire, D. & Chicoine, B. (2006). Mental wellness in adults with Down syndrome: A guide to emotional and behavioral strengths and challenges. Woodbine: Bethesda, MD.
*A new edition of this book has been published, and will soon be available for loan from DSRF’s resource library.
Please email Susan Fawcett if you have questions or concerns about your teen: firstname.lastname@example.org