North Wales Assembly Member and Chair of the Cross Party Autism Group, Mark Isherwood, has called on the Welsh Government to listen to the views and experiences of autistic people.
Responding to yesterday’s Statement by the Cabinet Secretary for Health and Social Services, Vaughan Gething, on ‘The Autism Updated Delivery Plan and Autism Code of Practice’, Mr Isherwood referred to cases in North Wales where autistic people are being failed and expressed concern that they are not being listened to.
He said:
“How do you respond, given that Flintshire County Council is hosting the IAS (Integrated Autism Service) in North Wales, to this e-mail that I received last weekend on behalf of a peer advocate group of autistic people - a draft letter, which they said shows that autistic individuals and families are repeatedly being failed, and then, when complaints are made, no-one is held accountable for failures - or one last week from a 12-year-old child, one of many who'd initially been refused assessment because she was so effective at masking? She wrote to the same Council, and she said, last weekend, after her draft Statement had been shown to her, 'I found many points to be incorrect and some put to much extreme. I'm 12, currently unable to attend school for many reasons. I'm unhappy with the report and feel no-one has listened to the information we provided', because nobody established her communication needs first.
“I have another one here to the same organisation: 'Many of us struggle with meeting strangers, especially in alien places. We struggle to communicate our needs effectively by phone, in writing and e-mail. We have been unable to obtain effective advocacy on our and our children's behalves despite us detailing our processing difficulties. It often takes us a long time to process information verbally or in writing without support to understand and interpret correctly, despite many of us appearing very articulate’.
“When they contacted the new IAS, they were sent forms to fill in, which put many of them into meltdown. They were then told that, if they couldn't fill in the forms, they should come in to a drop-in centre at a specified location to meet unknown people, which showed that the people who sent these have no understanding of autism, autistic people or their communication needs.”
Mr Isherwood added:
“You refer to assessment and diagnosis: how do you respond to a situation I've encountered - obviously, in my case, in North Wales - where a private diagnoser, a Consultant Clinical Psychologist and a Multi-Disciplinary Team, are being commissioned by the Health Board to assess and diagnose, but their private assessments, where people have been refused assessment and diagnosis, often because girls have been so effective at masking in school, have been refused by the same Health Board on the repeated claim that they apply different standards, which have been shown to be factually untrue, where exactly the same process is applied in both circumstances?
“The External Affairs Manager for National Autistic Society Cymru said the Autism Bill 'is an opportunity to provide autistic people with a level playing field, where someone can access the support they need without being bounced between other statutory services, such as those designed for people with a mental health condition or learning disability……The challenge for anyone still to be convinced that this legislation is needed would be to listen to the views and experiences of those people and offer a solution that commands their support and makes a meaningful and tangible difference to their lives’. So, hopefully, you will hear that call and, in so doing, perhaps you could just conclude by telling us how again you will ensure that your Government, your services and the IAS actually start establishing the communication needs of the autistic community and individuals within it in Wales before it starts drawing up conclusions and making recommendations to you.”
In his response, the Cabinet Secretary stated “I think there's a challenge about the suggestion that legislation will cure the challenges that we all recognize across this Chamber that affect people with autism and their families” and that he did not “accept the rather doomsday pronouncements that the Member makes about what is being done and why”.
Mr Isherwood added: “The Cabinet Secretary’s failure to answer my specific questions - and his failure to understand that a consultation which fails to address the communication needs of autistic people cannot identify their needs - illustrates a stubborn refusal to get it right.
“Unless a real co-productive approach and real autism understanding are embedded in his Department, our Health Boards and Local Authorities, vast sums will be spent getting it wrong and pushing autistic people into crisis”.