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All-Party Parliamentary Group for Dyslexia and other SpLDs releases first-of-its-kind report looking at the human cost of dyslexia

Tuesday 7 May 2019

Today, the All-Party Parliamentary Group (APPG) for Dyslexia and other Specific Learning Difficulties (SpLDs), which the British Dyslexia Association is Secretariat to, has published the Human Cost of Dyslexia. The report, which is the first to look exclusively at the psychological and emotional impact of dyslexia on individuals and families.

Whilst dyslexia is not directly linked to emotional or mental health issues, failing to diagnose dyslexia early, and inadequate support – both academic and emotional – during education and beyond leads often to a short and long term human cost of dyslexia.

The report brings together experts, primary research and first-hand experiences of those growing up with dyslexia, and makes recommendations on how to improve the provision to directly and indirectly reduce the emotional and mental health issues resulting indirectly for dyslexia.

The report follows a powerful and insightful APPG meeting in April lead by speakers Mollie King, British Dyslexia Association Ambassador, former Saturdays singer and BBC Radio 1 presenter, Pennie Aston, Director, GroOops Dyslexia Aware Counselling, Jo Crawford, MA student at University of Exeter and British Dyslexia Association Ambassador, Dr Helen Ross, Founder & Owner, Helen’s Place.

Commenting on the report, Helen Boden, CEO of the British Dyslexia Association, said: “For over four decades the British Dyslexia Association has supported and empowered people with dyslexia and those around them. Our job has been as much about helping people to overcome the commonly understood challenges around reading and writing that dyslexia presents, as it has been about not letting their negative experiences of being dyslexic hold them back in life.

“Our work as Secretariat of the APPG for Dyslexia and other SpLDs has been an amazing opportunity to bring together the dyslexic community to help legislators better understand the direct and indirect challenges and abilities of dyslexia to build a legislative environment that ensures the amazing contribution the dyslexic community to our country continues to grow.

“This report is difficult reading. Anecdotally, we have heard it all before, but to see in cold hard statistics and experts and individual evidence that hundreds of thousands of kids are unnecessarily anxious and undervalued and millions of parents are struggling to give their children the support they need is hard reading. This issue strikes to the very core of humanity.

“We understand this is only one part of the picture and over the coming months and years we will look in more detail at the education system, workplaces and society more widely. But this report shows at the most fundamental level, the human cost of dyslexia is too high, and we need to change that.”

Primary research of 1,300 parents of children with dyslexia for the report found:

  • 95 percent of parents feel they lacked the skills and knowledge to support their dyslexic child.
  • Nearly half of parents reported that they spent over £1,000 extra per year because of their child’s dyslexia.
  • 58 percent of parents report their children try to avoid discussing their dyslexia, a staggering 82 percent of parents report their children try to hide their difficulties relating to dyslexia and 85 percent of parents report their children feel embarrassed by their dyslexia.

Providing evidence on the long-term psychological effects of growing up with dyslexia, Pennie Aston, Director of GroOops, a charity specialising in providing counselling support to adults with dyslexia, said: “It is not that dyslexia means people are less able to cope with complex emotions than their neurotypical cousins, but that they are having to cope with far more unresolved problems from the past where the focus had been on deficit. Also, few understood the presentations of dyslexia other than a difficulty with reading and writing. The result is that dealing with the emotional repercussions of dyslexia is dealing with trauma.”

Between 10 to 15 percent of people have dyslexia. This means that dyslexia is the most common specific learning difference, effecting between 6.6 and 9.9 million people in the UK and between 800,000 and 1.3 million young people in education.

Mollie King, singer and BBC Radio presenter, who spoke at the recent meeting of the APPG for Dyslexia and other SpLDs, added: “The key is being diagnosed as early as possible. It breaks my heart that there could be people out there struggling through life unnecessarily because they’ve not been diagnosed, and are still feeling stupid the way I did. I went from being bottom of the class in primary school to getting 3 As at A-level. The better we all understand dyslexia, the more we can help people who have it to reach their full potential.”

The report makes the following recommends to reduce the psychological impact of growing up with dyslexia and the family supporting young people with dyslexia:

  • The clearest solution lies in the training of specialist dyslexia teachers. Such teachers would be able to support learners, oversee and direct teaching and support provision, and carry out diagnostic assessments that identify individual needs.
  • Training for classroom teachers has been light touch and focussed on awareness raising and not training at the specialist level that is required in order to support learners and enable them to access the curriculum in a way that leads to engagement and longer-term academic success.
  • There is currently no roadmap for how young people’s mental health should be supported, despite commitments to developing parity between its treatment and that of physical health.
  • Parents want accessible information of a good standard. If formal guidelines are put in place, local authorities will have to comply, and parents will be better informed to support their children.
  • Fragmentation of the SEND support systems under the Children and Families Act 2014 has created confusion for parents and has made the system problematic for non-experts to navigate – schools with multiple LAs in their vicinity are confronted with incoherent paperwork and practices, which makes implementing appropriate support problematic.

You can download the full Human Cost of Dyslexia report here.