Jonathan Channing, founder of NeuroDiversity Jersey, said he was ‘shocked and appalled’ to discover that the initiative had been signed off without any apparent consultation with Islanders who had lived experience of autism.
He said he was concerned that autism was being included alongside learning disabilities, which he added perpetuated the myth that the two were always linked.
The government said the scheme was a pilot and ‘interested organisations and individuals’ would be consulted in the future, while the charity running it – My Voice Jersey – said it aimed to treat each person as an individual.
Under the scheme, health and social care professionals can refer ‘complex individuals’ who have been formally diagnosed with a learning disability or autism and who may need support to make decisions, including everything from permission for vaccines and healthcare to helping them understand their legal and human rights.
Mr Channing, however, questioned if mental-health advocacy charity My Voice Jersey had an ‘appropriate understanding’ of autism and its complexities.
Senators Kristina Moore and Lyndon Farnham, who are political ambassadors for autism, responded to his concerns by saying they would do ‘all they could’ to understand the rationale behind the move, which did not appear to align with My Voice’s mental-health focus.
In a statement, they added: ‘As political ambassadors, we encourage employers and the States and Government of Jersey to listen to the concerns raised by autistic Islanders with lived experience on this matter.’
Patricia Winchester, from My Voice Jersey, responded to the concerns by saying that the wording of the government announcement had been ‘unfortunate’, albeit well intentioned.
And she said the service was aimed at the ‘small number of people in Jersey who require significant levels of care and support and who have difficulty in participating in the decision-making process’. She has offered to meet Mr Channing to discuss the matter.
Explaining his concerns, Mr Channing said: ‘Our understanding of autism has evolved over the years and we now understand that autism in the modern day is diagnosed with or without an accompanying disability. This distinction is important as it shows that being autistic and being disabled is not one and the same, which is something that is widely understood within society today.
‘Such ill-informed handling of the autism narrative and marrying together autism with learning disabilities presents a profound narrative issue that has long plagued autistic individuals affecting not only the progress being made in acceptance of autism as a different wiring and neurodiversity but also perpetuating a negative narrative that will further affect the employment opportunities of autistic Islanders.’
He added: ‘I am sure some autistic individuals with more complex needs will benefit from such a service but to have this service provided by a charity lacking focus in the area is thwarted with danger.’
