Synaesthesia is more common in autism

Synaesthesia, a mixing of the senses where by people see colours associated to sounds they hear or link musical notes to tats, could be more prevalent in people with autism according to new research by the journal of Molecular Autism.

Scientists from Cambridge University found that whereas synaesthesia only occurred in 7.2% of typical individuals, it occurred in 18.9% of people with autism. The scientists tested and confirmed the prediction that if both autism and synaesthesia involve neural over-connectivity, then synaesthesia might be disproportionately common in autism. Read more of this post

Irish coverage for World Scleroderma Day

Two of my articles recently appeared in the Irish press to coincide with World Scleroderma Day on June 29th  in a bid to highlight this terrible disease.

I wrote both these articles based on my 8-month masters thesis project, which saw me produce and narrate a 45 minute radio documentary examining the life of sufferers of scleroderma in Ireland and the progress that has been made in understanding and treating the symptoms of this incurable auto-immune disease.

Woman’s Way magazine:

This article appeared in Woman’s Way magazine, dated June 24:

Womans Way June 24 Monica Heck scleroderma

TheJournal.ie:

This article ran on TheJournal.ie, dated June 29th and got nearly 20,000 views.

 

The Marble Lady – the story of scleroderma in Ireland

Radio documentary about scleroderma

Radio documentary about scleroderma

This is a radio documentary on the topic of scleroderma (systemic sclerosis). It tells the story of patients in Ireland who suffer from this rare, debilitating and sometimes life-threatening auto-immune connective tissue disease.

The programme will allow the listener to look behind the word “scleroderma” – from the Greek words “skleros” meaning “hard” and “derma” meaning “skin” – and discover a world where the body suddenly hardens, producing an excess of collagen which damages the skin, vascular system and internal organs.

Told by the patients themselves, the story of scleroderma is punctuated with medical explanations and contextual information to ground the documentary in Ireland. The project, which was completed over 5 months, involved the collection of over 9 hours of audio recording during interviews with 20 people.

Its objective is to inform and educate the wider public in Ireland about this condition and the challenges faced by those living with it every day.

The project is my journalism masters thesis and awaits reviewing but will be released in September – watch this space!

Deafness at Third Level

Caroline Carswell is a Dublin-based entrepreneur. She worked for 15 years in publishing, journalism and IT marketing, having graduated from Trinity College Dublin (TCD) and completed a postgrad in publishing at Oxford Brookes University.

Her remarkable CV is made only more compelling by the fact that Ms Carswell has been profoundly deaf since she was born.
She founded non-profit social enterprise Irish Deaf Kids (IDK) in 2007 because she felt there was a lack of centralised education focused information in Ireland for the parents of deaf children and for deaf people themselves.

Currently only 15% to 20% of deaf students access third-level education according to Ms Carswell, partly due to low expectations from parents and teachers.

“Too many parents focus on what jobs are suitable for deaf people rather than thinking of the possibilities and finding out what supports can be arranged,” she says. Declan Reilly, disability officer at TCD, agrees that students who are deaf or hard of hearing are still under-represented in third level education. “There is a shortage of qualified Irish Sign Language interpreters in Ireland and teaching methods and environments are not as inclusive as they could be.”

Aisling Fitzgerald, a final year student of Economics, Politics and Law at DCU who suffers from bilateral hearing impairment, feels that this statistic may apply to deaf student ratios but not to those who are hard of hearing, who she feels may have a higher rate of progression to third level.

“Many deaf students are not educated through mainstream schools, they are therefore not familiar with environments containing mainstream teaching formats such as lectures without the support of sign language, or speed text,” she says. “I believe confidence could play a big part, as moving from a school catered towards deaf students to a mainstream educating environment can be quite daunting.”

Niamh Hayes, project coordinator at the Association for Higher Education Access and Disability (AHEAD), highlights the mid-term review of the National Plan for Equity of Access (NPEA), which was put in place in 2008 by the Higher Education Authority (HEA).
The plan has specific targets to increase the participation rate of people with disabilities in third level education in Ireland. The mid-term review at the end of 2010 showed a rise in numbers of students with sensory disabilities at third level, despite the difficult economic circumstances in Ireland.

Preparing for college

Ms Carswell urges late secondary school students to go to career fairs and to make contact with bodies such as AHEAD, the Deaf Support in Third level project (DS3) and the Disability Access Route to Education (DARE).

DARE was launched in 2009 for school leavers to help eligible students to compete for entry into the seven Irish universities, the Dublin Institute of Technology and a number of other colleges on reduced leaving cert points and to benefit from additional financial and academic help while in college.

Figures from the NPEA mid-term review show that in October 2010, 385 students accepted a place via DARE, a 44% increase from 2009. Ms Fitzgerald says that her mainstream school encouraged her to apply to a course of her choice and helped her when it came to applying for the DARE access programme on the CAO.

Going to college for the first time can be a daunting experience for anyone, but for deaf students, meeting these challenges can be that little bit harder.

“Going from a small classroom of around thirty students to lecture halls where classes can easily reach 75 students was the biggest challenge”, says Ms Fitzgerald. “Trying to make out what a student asks ten rows behind me was impossible, let alone try to keep up with the general conversation that followed.”

Both Ms Carswell and Ms Fitzgerald make the point that most deaf and hard of hearing students depend on lip reading, which can makes taking notes challenging. “When you look down to write your notes and look up to begin lip reading the lecturer again, they have moved on to a new topic and I am confused all over again”, says Ms Fitzgerald. “But thankfully the Disability and Learning Support Services really helped me to tackle these issues.”

The overriding message from all sides to third level students who are deaf or hard of hearing seems to be to reach out and request support. Mr Reilly explains that there is a range of support options available to deaf and hearing impaired students at third level, which can include a mix of note taking, real time captioning, ISL interpreting, subject tuition, exam accommodations and assistive technology such as audio aids, digital recorders and podcasting.

Ms Fitzgerald explains that she has used all the available supports provided by the Disability and Learning Support Service in DCU. “Anne O’Connor, Ted Harvey, Marion Scullion and of course Henry Langton in IT have been a never ending source of help and advice to me during my four years in DCU,” she says. “Each student has a different preference for supports, some prefer sign language interpreters, some speed text and I myself prefer stenographing (transcriptions) – they really are the best notes you could ever get!””

Ms Hayes is keen to stress that the experience of each deaf or hard of hearing student is unique. “There is no single blanket answer, lots of factors can impact the experience of a student, whether linked to their disability or not.”

The main challenge is to figure out what support works for each person in a two-way process between the student and the college, according to Ms Hayes. She advises students who struggle with their hearing to find out about all support available and to keep re-assessing their support until they find a solution that works for them.

Ms Carswell and Ms Fitzgerald both encourage all students to join clubs and societies as it helps everyone develop their network and make new friends.

While at TCD, Ms Carswell was involved with the student newspaper and the mountain club, and worked as an administrator in the Students’ Union. In the summer, she travelled and worked in North America. She has also taught English to Spanish-speaking street children at a refuge in Argentina and joined a Red Cross humanitarian trip to Georgia.

Ms Fitzgerald was involved in the Students’ Union her first two years at DCU. “I have a travelled a lot, a summer in the states, throughout Europe, studied in London and a year abroad in Sweden and I believe that the skills I have learned from all these experiences are invaluable,” she says.

Ms Carswell recommends travelling. “Plan your trip to be as safe as you possibly can, listen to your gut feeling. And keep your hearing-devices safe and dry!”

“There is nothing a deaf or hard of hearing student can’t do,” says Ms Fitzgerald. She does however recommend travel with friends who are supportive of the needs of a person with hearing difficulties.

After college, what?

The current economic climate affects all students, deaf or not, according to Mr Reilly. “Uncertainty about grants, funding and the cost of living affects potential and current students, while those soon to graduate face entry into a very competitive job market.”

Ms Carswell has described how she turned her first entry-level mailroom post sorting job into a relevant graduate job in publishing by making herself visible to the editors and challenging their perception of her to avoid being pigeon-holed. Four months later, she had a permanent job in publishing, a notoriously difficult industry to break into.

She urges young adults who are deaf or hard of hearing to aim high. “Trinity College Dublin has a deaf-dentist-in-training, a trainee pharmacologist and a medical-doctor-in-training, while UCD has a first-year veterinary student as of this October. Absolutely no reason why not”.

A shorter version of this article appeared in the DCU College View on November 30

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Useful links

Irish Deaf Kids

AHEAD

Deaf Support in Third Level (DS3)

HEA National Plan for Equity Access

DCU support for deaf students

Student mental health in Ireland

Only one third of students would admit to experiencing mental health problems, according to a recent survey.

The survey was conducted by See Change, the national mental health stigma reduction partnership. It showed that while the student population is overwhelmingly sympathetic to the mental struggles of others, the majority of students would opt to hide the fact that they were suffering from mental health issues.

Campaign manager for See Change, Kahlil Thompson-Coyle, explains that these results are not surprising.

“There is so much fear,” she says. “If there’s silence, there’s stigma and if there’s stigma there’s silence. We are trying to break the silence by generating a national conversation about mental health.”

“Statistics show that one in four people will experience mental health struggles at some point in their life,” she continues. “Our research indicates that young males between the ages of 18 to 24 are particularly at risk, which is why it’s important to reach out to this population through the likes of this survey or through bodies like the Union of Students Ireland.”

The government launched “A Vision for Change” five years ago as a plan to modernise health services in Ireland, and Ms Thompson-Coyle praises the most recent programme for government, which was the first to prioritise stigma reduction around mental health issues.

The on-going freeze on recruitment in the health service seems to be having great impact on the provision of mental health services in Ireland. Director of the Mental Health Reform group, Orla Barry, pointed to a number of factors that specifically affect the sector, including the issue of staff retirement.

“20 per cent of jobs lost in the HSE in 2010 were from the mental health services, despite the fact that the group only makes up 9 per cent of the workforce,” she explains. “By next March, our sector could have lost up to 1,200 jobs and that would make us seriously understaffed.”

Ms Barry feels that any further loss of staff could have a detrimental effect on the implementation of Ireland’s “A Vision for Change” policy. She also calls for protection of the funding going to community based mental health services.

Mary Gleeson of the HSE pointed out that while the executive had to work within the bounds of the moratorium that was set by the government, there were a number of on-going initiatives such as the “Your Mental Health” campaign as well as support agreements with external agencies such as See Change, that continue to support the government’s “A Vision for Change” initiative.

Helena Ahern, head of the counselling and personal development service at DCU, explains that the social stigma of mental health problems adds to the pain as it marginalises the sufferer.

“People worry about the consequences of disclosing this information,” she explains. “Acknowledging an issue and asking for help should not be seen as a failure, but rather as an expansion of your resources and as a learning experience.”

Ms Thompson-Coyle of See Change says, “It goes beyond politics… no family in Ireland is untouched by this issue.”

This article appeared in the DCU College View Newspaper on Wednesday, October 26th 2011

Teaching children about deafness

A little boy called Ben was teaching children about deafness today during the first edition of the Festival of Stories. The festival is running this week at the Imaginosity children’s museum in Dublin.

Ben is the hero of a book called “A Birthday for Ben”, which was read to an attentive audience of parents and tots this afternoon. The story highlights some of the challenges faced by children like Ben who are deaf or hard of hearing.

The book stems from a collaboration between three people: Caroline Carswell, the founder of the Irish Deaf Kids (IDK) organisation, writer Kate Gaynor and artist Karen Quirke.

Ms Carswell, who was born with profound sensorineural deafness, explained that the story is partially based on her own experiences as a child.

“Deafness is still seen as a minority issue, but this book is not aimed solely at the parents of deaf children”, she said. “It’s a tool for anyone who wants to make their child aware of the concepts of hearing and deafness.”

During the reading, the children heard Ben talk about his hearing aids and the differences in speech they may notice in someone who is hard of hearing. They felt sorry for Ben at his friend’s birthday party, when he found himself excluded from a game of “pass the parcel” as he could not hear the music.

One clever tot asked why the guests were not playing a game that could include Ben. The story went on to show how games could be made inclusive by the use of flashing lights or coloured cards as visual cues to accompany sounds.

An animated version of the book in British sign language, text and sound was also shown, as the book was animated by ITV last year.