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(UK) BBC reports on multiple neurological disorders; parents demand recognition

Oct 13, 2019, BBC: Families affected by school refusal share their stories The experiences of a 14-year-old boy, whose social anxiety disorder has led to him missing school for much of the academic year, have prompted others to come forward to share their stories. Kai, from Chesterfield, has a condition known as school refusal, but his mother Debbie Bendall said he was treated like a truant and the family had faced threats of fines over his non-attendance. Since Kai's story was published, a number of people have come forward to tell similar stories of how their conditions affected their school life…. After reading Kai's story, Jon Ward, 60, from Clacton-on-Sea in Essex, realised he had 'Re-plastering holes in the wall' Harry (not his real name), who is 14, was diagnosed with attention deficit hyperactivity disorder (ADHD) at the age of six and autism at nine. He has not been to school at all since February 2018, which has led to his mother, a trained social worker, being taken to court and fined. When Harry started high school in 2016, his mother said she was led to believe he would get the support he needed but it never materialised and after the half-term break he started refusing to go to school. She said her son had pathological demand avoidance - a behaviour profile within the autistic spectrum - which meant he needed to be in "control of everything". As a result, the demands of school on her son had the "coke bottle effect", she said, with everything shaken up in the day before being released at home. "Trying to get him to conform causes anxiety which manifests itself as aggression," she said. "I have been physically attacked, had TVs, windows, doors smashed. [I have given] up re-plastering all the holes in his bedroom wall." She said her parenting had been blamed but she believed his behaviour was because he "couldn't cope in a mainstream classroom". After years of trying, she has succeeded in getting an Education, Health and Care Plan, intended for children who needed more support than was available, for Harry - but it had come at a cost. He has largely missed two years of education and as his mother had been unable to work she was at risk of losing her home because of the loss of earnings…. Sarah said Charlie (not their real names) was diagnosed with ADHD at the age of four and subsequently with a number of other problems, including high anxiety levels and sleep issues. He has been out of school completely for about a year. Sarah said Charlie found it hard to process what he was being taught in class and without one-to-one support he struggled, which led to him not wanting to go to school…. "I would drive him there and he would be kicking at the windscreen and taking his seat belt off," Sarah said…. Charlie would "explode" following a day at school, sometimes becoming "violent" and "withdrawn" and even "self-harming", Sarah said…. Mind said children experiencing social anxiety disorder or school refusal experienced emotional distress about attending school. Fran Morgan runs a parent-led organisation called Square Peg that aims to bring about national change for families experiencing these problems…. A Department for Education spokesperson said: "The advice to schools is clear, they should authorise absences due to illness, related to both physical and mental health."

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