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The Guardian - UK
The Guardian - UK
National
Esther Addley

‘Beyond worried’: the families waiting to hear how Send overhaul will change their lives

Becky with her son Kyllian in her lap
Becky with her son Kyllian, aged six, who is blind and has cerebral palsy and epilepsy. Photograph: Fabio de Paola/The Guardian

At the age of 12, May Race’s son Joseph spends almost all of his time in his bedroom, too anxious, burnt out and – she says – traumatised even to join his parents and older brother downstairs most days. Joseph no longer leaves the house at all.

He is autistic and has dyslexia and attention deficit hyperactivity disorder (ADHD). His autism is of a type known as pathological demand avoidance, or PDA, which can make the ordinary demands of everyday life feel overwhelming and impossible to cope with. Since he was eight years old, he has rarely been able to go to school. Today, he doesn’t attend at all, and is too unwell even to meet with professionals who may be able to help him.

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