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To be or not to be…

A few recently published articles and TV interviews over the Christmas season had me thinking about an increase in conversations I have had with (young) people over the last few years about social media and sensory challenges. I drafted the article in the New Year, but held off publishing it so that I could share the contents with a few young people before finally publishing it. So here it is, slightly edited by those young experts…

The growing media focus on celebrities with a lived experience means often this is what young people want their therapy goal to be. Finding that special skill that will make them rich and famous, a star on TV or someone who people will value (more). And they quote famous people who have done this. The names we all know.

OT practice is holistic, and, intrinsic to our practice is the importance of  valuing neurological diversity. Critical to what we do is helping (young) people recognise, develop and build on their strengths – enabling them to embrace and manage their challenges – but it does not always need to be so public. Not everyone needs to splash each decision in their life out across social media or seek celebrity because of their personal lived experience of autism, dyspraxia or other medical condition. 

The fact that initially many of these ‘now famous’ people might not even have had a diagnosis, or didn’t publicise it until already famous, is something young people are surprised about when they are encouraged to stop and think about it.

We use Chris Packham as a good example in therapy. His story is fairly well known and he is on our screens in the UK, a lot!

Sensory and motor challenges, equipment that may not be helpful, and terrible experiences at the hands of others, are often the subject of these online Youtubes, blogs, tweets, instagrams etc. 

These recent discussions with (young) people, got me thinking and mindfully considering what I read about this when I am on fb. I have spent some considerable time watching on youtube and exploring tweets, fb posts and the various outputs on other social media platforms. This is alongside reading a growing list of published articles and research about this (see the 3 listed in this article).

This prompted me to reflect on and ask more questions about social media use to achieve celebrity. I have been discovering that colleagues, parents and even teens agree. Social Media is not a way to become famous or find happiness. There is definitely a need for  conversations about this with (young) people when they are considering Youtube fame as a life goal. Most teens reluctantly agree this is a growing trend; that there is so much pressure to do this, especially if you are different.

“You are likely to get more hits Kath”  (And some of these are not virtual ! )

This is such an important message, especially when we work with (young) people who regularly use social media and see the rapid numbers of ‘likes’, ‘hearts’ and encouraging ‘comments’ about self disclosure seem the right thing to do. Even research confirms this growing trend.

Research Study: “Kids now dream of being professional YouTubers rather than astronauts”

Read more here:

I say (young) people, as it’s a regular conversation in therapy with under 25’s, but it’s not restricted to that age group. Sadly, though, teens and young adults are very vulnerable to this social trend; where many value new online peers more than those they have grown up with; who are likely to know them, and who see beyond the sensory or other challenges. 

The problems with disclosure and talking about a lived experience is not always obvious to young people – and they often jump in feet first and have regrets later. It’s even worse if you have poor praxis and/or difficulties with feedforward and feedback. The difficulty anticipating consequences to actions are often a clinical feature.

As a student OT I was taught “What you see in the body, you see in the mind”. The disrupted praxis; think, plan, do or for some difficulties with anticipating consequences to actions, seen in physical movements, is typically reflected in other skilled actions of everyday life, including interpersonal communication. 

This tendency of teens with or without out neurological diversity to be impulsive is far older than social media, however the immediacy of social media may make it important for teens to be more prudent. Case studies have proved how dangerous and ‘hard to undo’ social media errors can be.

Disclosure publicly online, about anything, leaves a person in a tricky place depending on who reads and comments in it.

We have collected a few considerations and reflections about the challenges of using social media to seeking celebrity includes :

  • Not everyone has good intentions or is nice
  • Comments can get personal and nasty quickly
  • Disclosure of things that are a challenge and make me vulnerable requires thoughtful planning, consideration and importantly, after posting, support
  • Perhaps it better not to do this till I’m older 
  • Telling people about my challenges on social media won’t always mean they are nice to me, or that I become famous.

And we talk about this often. Psycho-education and social skills training has always been a part of OT practice. In our therapy sessions where  we consider how to build healthy communication and relationships skills (including during DBT skills training; interpersonal effectiveness) and as part of developing improved self regulation, we now include significant time considering and practicing skills for ‘managing your online self’.

Writing a book about one’s own lived experience or making a major visible public contribution to mankind seems to be the thing many (young) people think they need to, and have to do, to have affirmation from others. Social media supports and encourages joining online groups and chats, sharing stuff with virtual strangers and creating perfect persona’s. Being different becomes a currency, often exploited by others and sometimes at huge personal cost.

For many this pressure and focus on finding that ‘golden nugget’ to fame and celebrity becomes hazardous to their health. The cost is typically to overall long term wellbeing and development. Sadly, not everyone can be rich and famous. Seeking that ‘golden nugget’ can become an insatiable obsession that interferes with everyday life. Real life opportunities can be missed in pursuit these single, often unachievable goals of social media celebrity. And the shame and sadness following a ‘failed’ attempt at global “youtube” sponsorship and public adoration can be devastating.

The cost of disclosure to peers beyond the often close and supportive friendship group (most young people of today are truly much more inclusive than before) is often unanticipated and can be catastrophic. Not much is needed to wobble shaky teen self esteem, leading to self imposed isolation and withdrawal from supportive others .

It is important that we show (young) people that there are quieter ways to belong, to feel contentment and to be happy. This does not always need to be about sharing their lived experience. Contributing to research,  volunteering with similar others, just finding enjoyable ways to meaningfully pass time happy, alone or in the presence of family and friends. These are all just as valuable.  

A young person with photography skills might build a portfolio and sell these photo’s via an online platform for use by designers and bloggers. A Mindcraft expert might become a Modder on games, and young person who likes animals may walk an elderly neighbours dog. Achieving a sense of meaning and belonging, can happen offline too. It always used to! And it can be just as satisfying, building self esteem and sense of efficacy and agency in the world.

In can happen in so many other ‘less visible’ ways, away from the spotlight. And this doesn’t mean people with or without neurological diversity might not do great things! Sometimes, though, they might just be quieter, without show and fuss, and delivered like the very best occupational therapy –  almost invisibly!

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