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Adolescents Perception of their Peers with Tourette Syndrome: An Exploratory study
Posted Mon 21st Nov 2016 at 13:17
by Melina Malli
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Melina Malli is a PhD researcher at the Tizard Centre in the University of Kent. She has also worked with people with TS as a special educational teacher. With her supervisor Professor Rachel Forrester-Jones they aim to develop an intervention to improve tic-free teenagers' attitudes towards their peers with TS. In order to achieve that, they needed to investigate what teenagers without TS thought about their peers with TS and how they believed they would behave and act around them. Their finding, taken from 22 participants without TS, provides insight into what an effective intervention should have in order to improve school experience for those with TS.
A high percentage of children and adolescents with Tourettes Syndrome report that they have experienced bullying, also social exclusion and isolation.
Young people without Tourettes also report that they would be less willing and more reluctant to interact with people with Tourettes Syndrome on some occasions. However, youth without Tourettes have never been asked what they know about the condition and why they would exclude an individual with Tourettes Syndrome from their social group.
Our study looked into how tic-free adolescents view youth with Tourettes Syndrome; what they knew about the condition and their attitudes towards their peers with the Syndrome.
To answer those questions 22 teenagers (17 girls and 5 boys) from a comprehensive school in South East England participated in our study. They talked about their thoughts in relation to individuals with Tourettes Syndrome.
Teenagers that didn’t have Tourettes Syndrome believed that the condition was a “swearing disease” because of the stereotypes that have been perpetuated in the media. Participant PL3 told us “I didn’t know that Tourettes also moved your body, I thought it was only swearing”.
Due to the lack of awareness of Tourettes and understanding about the condition our participants viewed individuals with Tourettes as “not normal”. They therefore felt sorry for them and believed that they would have a hard time finding friends, managing school homework and finding a job that involved interacting with people. Participant TP15 mentioned that “people will be like taking the mick out of them. They are not like normal people”. However, they also viewed them as a source of discomfort and believed that hanging around with them would be awkward. Participant TP3 c said “I may be a bit nervous around her because if she does something I wouldn’t know what to do”.Participants also feared that having direct contact with a person with Tourettes Syndrome could jeopardise their reputation and also make them liable to social scrutiny. TP12 mentioned “If I had that boyfriend (with TS) people gonna judge me. Not me, but they're gonna say she's beautiful but he, he is like, has this Syndrome. He's not like (pause). What’s wrong with her? You know?”
Although our participants said that they would not deliberately and overtly exclude individuals with Tourettes Syndrome they talked about forming restricted relationships. These relationships would be different from the ones they had with their tic-free peers; relationships lacking in intimacy and closeness. As participant PL3 and TP14 explained when talking about dating an individual with Tourettes Syndrome pity and a tendency towards over-solicitousness would hold them back from achieving closeness. “I’m being honest yeah. I'm not being rude, I'd want to have somebody normal. I'm not saying they’re not normal (individuals with TS). But you know what I mean. I would mostly feel so sorry [for] him” “It depends on how comfortable I am around him, cause If I feel like guilty and sorry for him, want to help him then I don't think I can be in a relationship with him”.
In other words although teenagers with Tourettes Syndrome may not experience overt stigmatisation and rejection, they might be patronised which might exclude them from their social network.
Our findings indicate a lack of awareness of Tourettes Syndrome among tic-free adolescents. Based on the participants’ knowledge about Tourettes Syndrome, which often came from the media, individuals with Tourettes Syndrome were viewed as “losers” and people to be pitied.
Accurate information about the condition should be given to tic- free adolescents in school-based interventions. Within this context the myth of the swearing disorder and the stereotype of the distressed and benevolent individual with Tourettes Syndrome should be overthrown. Images of Tourettes Syndrome that are more compatible to tic-free teenagers’ self-image should be presented and the intervention should focus on the similarities between adolescents with and without Tourettes Syndrome and not the differences.
It’s exactly at these moments we can look to the young people themselves for motivation and to show everyone the inspirational way that they deal with their Tourettes Syndrome – just listening to young people like Grace and Rupert can show how a positive attitude and support can make a difference - watch this inspiring video to hear their story.
Tourettes Action offer a range of support and information for people working in education
Our key facts for teachers leaflet is full of helpful advice
Tourettes Action can also provide information and PowerPoint presentations for schools. It may be possible for us to offer some whole school training. If you are interested please contact us:
0300 777 8427
help@tourettes-action.org.uk
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