Today is the day! The ‘Human Cost of Dyslexia’ collaboration between myself, Dr Helen Ross and The British Dyslexia Association realises it’s aim to inform politicians about how dyslexia affects the mental well-being of children.

The original survey saw 1300 parents answer specific questions and give over 2500 comments about how dyslexia affects the mental well-being of their children.

The topics that they responded too where:

• Exploring Parental Anxiety & Dyslexia

• Interactions With Education.

• Family Dynamics

• Exploring the 'Human' cost of having dyslexia for your child.

Chair of Wiltshire’s Dyslexia Association and educational researcher, Dr Helen Ross will share the details of the survey and the comments made as well as some of her research findings to politicians attending the All Party Parliamentary Group For Dyslexia which is chaired by MP Sharon Hodgson.

Not only will Helen Ross present, but young ambassador for the BDA Jo Crawford, Pennie Aston from dyslexia aware counselling service, Grooops and Radio 1 presenter Mollie King will share their insights.

I am writing this article whilst travelling to London and whilst I am unable to share the full results of the survey (at this time) I will endeavour to write this as a live blog article and share the insights as they are presented.

Live Updates…

Political attendees - Lord Addington, Sharon Hodgson, Paul Masterson

OK so I have arrived and everyone is getting settled in …..

Sharon Hodgson welcomed everyone to the meeting and introduced Mollie King.

Mollie King.

Diagnosed at the age of 10.

Felt stupid leading up to the diagnosis. Reading out in class filled her with panic.

Mollie is grateful that she was diagnosed during Primary Education as this enabled her to have an understanding about herself and how long reading will take.

Mollie experiences visual stress, with words jumping around or fading. When tired the reading challenges become more intense.

Mollie has learnt to get used to having dyslexia and has found it to be a part of her professional life as singer for the Saturdays, or when presenting on TV and for BBC Radio One.

As a singer, Mollie had to learn song words upfront whilst her band mates could simply sing from song sheets during practices. This took extra planning and effort.

For Mollie, being asked to read out loud causes anxiety and it is in having people around her who are understanding about her challenges with dyslexia she has found that she has been able to reach her potential. At A-level stage she was able to get three A grades.

During the session Mollie was being asked lots of questions about confidence. Mollie said that because she knew what she wanted to do in life this helped her to get through education. Using her dyslexic strengths of creativity with singing has worked really well for her.

A question asked about Mollie’s motivation to inspire younger kids. Mollie wants young people to believe in themselves and not let dyslexia hold them back, but it needs the awareness surrounding these young people to increase.

“How has dyslexia fed into your creativity as a performer?”

Mollie said that she has found that she absolutely loves performing and singing and that it makes her feel good. It was in having creative strengths that she has been able to focus on what she is great at and manage what she struggles with in terms of reading.

Check out the newspaper articles about Mollie presenting at the APPG from the Daily Mail and the Independent.

Pennie Aston - Grooops

Pennie is the founding director of the dyslexia aware counselling service, Grooops.

Pennie set up Grooops because at the time there was little support for the emotional repercussions of having dyslexia.

Grooops has been operating for 12 years.

The emotional challenges of having dyslexia seem to be rooted in the early years when there has been a lack of addressing these emotional challenges.

Pennie said that someone who is in a heightened state of vigilance (that often comes with having dyslexia) can trigger the fight or flight emotional mechanism which affects one’s ability to learn. Individuals with dyslexia can spend many years experiencing this.

Key challenges result in experiencing

low self-esteem, heightened anxiety and other emotional trauma which is often hidden through fear and shame.

Pennie used the example of physical medical injuries not being treated and how it is easy to understand how important it is to address an injury. With mental health and especially when experiencing dyslexia as a trigger for mental health challenges, often the needs do not get addressed and yet the consequences can be just as great.

Pennie used the example of a 50 year old client seeing their dyslexia as a ‘badge of shame’ and despite ultimately getting good qualifications and a great career, the emotional turmoil was still present and caused depression because the client never felt they were ‘good enough’.

Pennie, used the examples of organisations such as GCHQ, Ernst and Young and other technology organisations who now actively recruit dyslexic thinkers because they have strengths in problem solving and trend spotting that suites those working environment with quantifiable benefits.

Early addressing of the emotional repercussions of dyslexia is essential in realising the potential of dyslexic individuals.

Pennie stated that often when emotional support is eventually provided for young people in schools, it is often on the cusp of a child or young person being excluded. Intervention should occur much earlier in a young person’s life.

Young people should also be encouraged to be able to advocate for themselves so that they can articulate what their challenges are and what support they need in terms of studying.

“If I can have this support then this is what I can do for you…”

Jo Crawford - BDA Ambassador

Finished her undergraduate studies last year and is doing an MA now.

At 11years of age, Jo didn’t think that she would get to university.

Diagnosed in year 2. Dyslexia was very prevalent within her family. Jo loved art, acting, singing and drawing but for maths and other subjects she would be put into special study groups and after school she was sent to tutor sessions out of school hours. She attended sessions with an optometrist and found ‘eye exercises’ stressful.

In secondary education, Jo felt like a ‘waste of space’ at 11 years of age. Eventually, she moved into a grammar school.

Jo found maths to be very difficult and in some lessons she would leave the class crying.

Jo loved reading but writing was difficult. Writing things down ‘just didn’t work’. She would often go home crying after school and didn’t believe that she would achieve what she wanted to achieve.

Jo would get in trouble in school for not concentrating, but the challenge was that the curriculum was being taught in a way that was not engaging her.

Jo found that when teachers changed the way that she was taught in a way that suited her, she found that she could learn and that maybe she wasn’t as ‘stupid’ as she first thought.

Jo came to the realisation that dyslexia was the problem and not her. The way that she was being taught was the problem. She decided to work in a way that worked for her. She chose to explore how her skills in thinking out of the box and problem solving could help her education.

Eventually, Jo got an A* in Maths!

Jo feels that the education system is full of misconceptions surrounding dyslexia.

Jo did an extended project and chose to not write an essay but used film to show her learning and this got a really positive response.

Jo hated learning, but she realised that dyslexia made her driven and keen to reach her potential.

Jo would experience teachers telling her what she couldn’t achieve.

Jo felt grateful to be diagnosed early on but still faced problems associated with lack of understanding about dyslexia in the education.

Jo believed that since she started to believe in herself and focus on what she wanted to achieve and this has helped her to self advocate.

School is such a fundamental part of one’s life and shapes everyone. Jo was fortunate in that her parents could afford support, but not everyone can.

Jo was asked a number of questions about her experience. She is talking about how when she is tired the challenges get worse. She has talked about her skills in self-awareness and knowing what to do to help her to be the best that she can be.

Dr Helen Ross

Dr Helen Ross is a former SENCO and qualified special needs teacher. Her PhD was focused on the effect of SEN on young people. She provides expert advice to schools, teachers and parents.

Helen is sharing some data about how dyslexia is affecting families with the ‘Human Cost’. She is referring to the recent ‘Human Cost of Dyslexia’ survey that parents completed in February and March of 2019.

Helen opened by saying that dyslexia is a ‘thing’, it’s written in law that it should be supported but Local Authorities are not addressing the challenges in school. There is a lack of understanding amongst teachers as to why reading is so hard for children with dyslexia.

Helen has found that there is a massive problem with the identification of dyslexia especially on official statistics. Parents should be listened to as to how dyslexia affects their children.

If dyslexia is missed…

When a child is not supported the mental health challenges can be considerable.

The current proportion of young people is around 12%, who are struggling with mental health challenges associated with dyslexia.

Commonly people with these emotional challenges are hiding their suffering. The ‘So What’ factor for supporting a child with dyslexia is ‘huge’, support reaps benefits.

Helen goes on to talk about the survey….

• Exploring Parental Anxiety & Dyslexia

  • The data suggests that parents are experiencing challenges with anxiety as they feel lost about what they can do to help their child. There is a lack of support information leaving parents feeling helpless.

• Interactions With Education.

  • Parents who have dyslexia are having to support their children having had a poor experience themselves through education. 30% of respondents felt that schools were not addressing the needs and that schools were being ‘elusive’ in their support. Schools appear to be avoiding children getting a ‘label’ as then they would need to allocate resource to support.

• Family Dynamics

  • Parents indicated that they were spending more time with their dyslexic children versus that of their non-dyslexic children.

  • Siblings were being reported as presenting resentful behaviour to their dyslexic siblings.

  • Many families were paying more than £20 a week extra on supporting their dyslexic child versus their non dyslexic children.

• Exploring the 'Human' cost of having dyslexia for your child.

  • Parents indicated their embarrassment in having a dyslexic child.

  • The survey data indicated a huge emotional cost to the lives of children with dyslexia.

Helen stressed that if schools could provide support for not only the educational challenges but also the emotional repercussions of having dyslexia then children will positively respond.

Schools are encouraged to deliver their education in a dyslexia friendly way and Helen recommended the BDA Quality standards that schools should work to.

Helen stressed that there needs to be joined up thinking between parents, Local Authorities and schools.

The data from the survey will be made available in the BDA report which is due to be released on Monday 29th April 2019.

What’s Next?

I will share the BDA report to you when it becomes available via email.

Please click here to request your copy of the APPG Report.