This weeks guests on Women’s Radio Station’s ‘All things Autism’ were Andy and Amanda McCulloch.
Dr Anna Kennedy, OBE invited them both to share their daughter Collette’s story after they were interviewed on the Victoria Derbyshire show a few weeks ago.
The BBC 2 show highlighted that Andy and Amanda McCulloch’s daughter Colette’s death was predictable and preventable. She had been displaying highly risky behaviour for months before her death but she was left to her own devices with no support, structure or activities at Pathway House.
Her parents repeatedly raised their concerns and fell on deaf ears. The ‘person-centred treatment’ advertised was certainly not what Colette received. They felt let down by everyone who was supposed to care for their daughter and keep her safe.
During the Women’s Radio Interview in Covent Garden with Anna Kennedy OBE the McCullochs shared: ‘Autism – Where does one begin?’
‘Where does one begin’ is the phrase Colette used in a short story she wrote entitled ‘The Incomplete’. It is about a young woman, on a train, completely misreading an encounter with a young man, a stranger to her, on the train. It is an acutely observed and moving story. It is interesting that she wrote it ten years before she was diagnosed as being on the autistic spectrum but in retrospect it highlights her, masked, autism.
The first was how autism in girls and women is frequently not diagnosed until very late. This is partly because women mask their condition much more than men do. It is also because female autism is much less well understood than male autism.
Until 15 year ago autism was seen as a male condition. Colette was anorexic. Anorexia is predominantly a female condition. Only in the last few years has it become clear that many of anorexics are on the spectrum. They will nearly all be female, so clearly there are many more women on the spectrum than had been thought. Late diagnosis damages autistic women’s chances in life.
The second issue they covered with Anna was the coronial system. Their initial contact with Coroner’s court was frankly horrendous. They were told the coroner would be helpful and family friendly. He was absolutely the opposite. They both shared he was rude, dismissive and obstructive to the process of justice.
Both parents had to fight him and force him to recuse himself. They had to raise money through crowdfunding in order to take him to Judicial Review. It is totally inhumane and unjust that recently bereaved parents should have to go through that.
Eventually they ended up with an excellent second coroner who was humane and meticulously thorough in his investigation. However they would never have got him without legal representation from Leigh Day, human rights lawyers.
Both Andy and Amanda want to campaign to make sure that all bereaved families have a right to legal aid to pay for representation in cases of avoidable death while in state care. They will work with the charity Inquest to pressure the government into action.
Anna shares: ‘It is crucial that the failures in Colette’s care is not swept under the carpet. It is essential that more autism training is put in place which is sorely needed for staff so they are not allowed to repeat the same mistakes again.’
If you missed their live interview, it is repeated everyday this week at 1pm on Women’s Radio Station.
Dennis Relojo-Howell is the world’s first blog psychologist and founder of Psychreg. He writes for the American Psychological Association and for other of online publications.