Sadly, misinformation on autism remains rife | Letter

Judy Evans on the struggle her family faced to get her daughter a diagnosis

Mary Berridge’s article and images (‘Without what made me “me”, I’d be a shadow of myself’ – portraits of life on the autism spectrum, 13 November) capturing the non-stereotypical characteristics of children and families affected by autism highlights the lack of understanding and stigma associated with the condition. She says: “Knowledge about autism is not that widespread.”

Our daughter, who will turn 40 next month, was diagnosed with developmental difficulties and delay at six months, in 1982. But it took years of pressure to get her subsequent behavioural problems taken seriously, and a diagnosis to be given that would open the door to support. Following an article on attention deficit hyperactivity disorder in the Observer, we successfully pressed for a referral to the consultant mentioned, at the Maudsley hospital. Finally, at the age of 10, our daughter was given a diagnosis of ADHD.

She remained under the care of the Maudsley hospital and the same consultant for more than 10 years. But it was not until the age of 20 that the consultant amended her diagnosis to one of high-functioning autism. In doing so, he stated that “so little is understood generally about autism that we did not feel she would get the support she needed if we had diagnosed her with autism earlier”.

How disappointing to see that a further 20 years on, the levels of ignorance and misinformation about autism remain so uncomfortably high.
Judy Evans
Brighton, East Sussex

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