Tensions build between autism researchers and the autistic community - BBC Newsnight

By bobb |
image of boy looking down behind abstract intersecting cogs

Video link: https://www.youtube.com/watch?v=FbR3K4L2XnA 

What scientists should, or shouldn’t, research is usually poured over in funding boards and ethics committees. But the future of autism research is now commonly argued over on social media - as the autistic community speaks up about the type of research carried out, and the language used.

Newsnight’s Science and Technology Correspondent Kate Lamble reports.

Health staff in England to be trained on learning disability and autism

By convenor |
Oliver McGowan facing the camera and smiling

Steven Morris

Mandatory programme named after Oliver McGowan, whose mother led a campaign after his death in 2016

Mandatory training for health and care staff in England to support people with a learning disability and autistic people has been launched following a grieving mother’s four-year campaign.

‘A lot fell into place’: the adults who discovered they were autistic – after their child was diagnosed

By bobb |

Joanna Moorhead

The recorded incidence of autism has increased 787% in 20 years. For many parents, getting help for an autistic child alerted them to their own traits

When John Purnell’s 10-year-old son was diagnosed as autistic, he knew exactly how to respond. “I’ve always been fascinated by research, by detail, by finding out everything there is to find out about something,” he says. “So I did a really deep dive.”

NHS told to improve after ‘potentially avoidable’ death of autistic teenager

By bobb |

Damning report reveals how NHS staff tried to change an earlier investigation

Shaun Lintern

The death of an autistic teenager who was given anti-psychotic medication by NHS staff against his and his parents’ wishes was “potentially avoidable”, a new independent review has concluded.

The decision overturns an earlier investigation labelled as being “mismanaged, poorly monitored” and carried out without “due rigour” by the latest analysis.

‘Life was a battle until my child was diagnosed with a lesser-known form of autism’

By bobb |

By Claudia Tanner

Pathological demand avoidance (PDA) – characterised by avoiding everyday demands and expectations to an extreme extent – is increasingly, but not universally, accepted as a profile that is seen in some autistic people.

When Francesca Manca’s son Simon was diagnosed with autism, she felt some relief that this would mean she would get the right support for him.

Research on facial expressions challenges the way we think about autism

By bobb |

Autism researchers are starting to think that autistic and non-autistic faces may “speak a different language” when conveying emotion. This could mean the “social difficulties” often associated with autism may, at least partly, result from differences in the facial expressions produced by autistic and non-autistic people. It means we may need to re-think the idea that autistic people have difficulties with expressing their emotions and instead consider that non-autistic people may have trouble reading them.

U.K. government faces lawsuit over mistreatment of autistic people

By bobb |

Following a series of scandals in the United Kingdom over people with autism being held against their will and mistreated in hospitals, a watchdog group has issued a legal challenge to the government.

The incidents highlight that the entire system of care for people on the spectrum is in need of an overhaul, the challengers say.

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