Part of the debate – in the Senedd at 3:35 pm on 25 September 2018.
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 clinical consultant psychologist and a multidisciplinary 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?
How do you refer to the statement by the National Autistic Society that a code of practice alone will not go far enough to address the needs of the autistic community, where the London School of Economics warned in its 2017 'The Autism Dividend: Reaping the Rewards of Better Investment' report that, without legislation, there would be little ability to require public bodies to implement Government initiatives in full and it doesn't provide statutory permanence in a way that an autism Act would?
How do you respond to the concern, which has also I know been expressed to you, because I've been copied on some of this correspondence, about the lack of numbers being picked up by the integrated service and the lack of services from the service to pick up slack from third sector bodies that are progressively losing support? I know—. And I quote from a letter to you on 11 August regarding the one-stop shop offered by the Autism Spectrum Connections Cymru in Cardiff, which is now cutting down on their services from September due to lack of funding. As this person told you, it acts as a safe space in the community for autistic people like them and it has supported over 740 autistic people between 2015 and 2018. The IAS signpost people to services and yet the services that the autistic community themselves state that they rely on are progressively disappearing.
The Cardiff and Vale integrated autism service, in fact, according to Cardiff Council, does not offer a drop-in service for autistic adults and only offers telephone consultation and support for autistic adults, their carers or parents—again, a failure to assess the communication needs of autistic people and therefore gauge what real experience they're actually having.
How do you respond, given that Flintshire County Council is hosting the IAS 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 had 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, some were too 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've been unable to obtain effective advocacy on our and our children's behalf 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.
I'll jump on and just conclude by asking how you respond to the article on the Institute of Welsh Affairs website recently by the external affairs manager for the National Autistic Society Cymru. She said that their recent survey
'found that nearly half...of autistic adults cited a lack of professional understanding as a barrier to accessing support. It’s clear that existing legislation isn’t enough to reduce the very significant barriers autistic people face.'
She said the Bill, 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.'
So, let's ask what the consequences of inaction would be on the 34,000 autistic people across Wales and their families. But 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.