Part of the debate – in the Senedd at 5:08 pm on 12 October 2016.
Please speak to the autism community in Wales—there are cross-cutting issues—as you would learn from them. But this motion is specific to the concerns of a community who’ve been campaigning many years for this and are being left behind the rest of the United Kingdom on this.
Now, from Ystradgynlais, we heard at that meeting that people are let down and angry that they have to fight so hard to get the support they need, and that it’s important that people with autism are no longer invisible to services. From Tydfil, we heard that autism shouldn’t be a postcode lottery. From Blaenau Gwent, we heard that adult services were basically non-existent, and that it was very frustrating, as a parent, to have to fight tooth and nail for your child to receive the services they so desperately need; from Carmarthenshire and Pembrokeshire that the strategy promised to deliver so much, but people are being pushed into further crisis; from Gwynedd and Anglesey that an autism Act was needed to safeguard and strengthen services and ensure consistency of support; and from Bridgend that there was concern about exactly where autism fitted in. Concern had also been raised with me over support in Flintshire and Wrexham. Correspondence from Denbighshire social services had stated that a child with autism would only be eligible for a service from the department if he experienced an additional physical or learning disability. But an autistic spectrum condition, or ASD—although I don’t like the ‘disorder’ word—is a condition in its own right, and the autism strategy states that
‘formal diagnosis...should be neither a pre-requisite for a full assessment of each person’s wider needs nor should it be a reason for not intervening in a timely manner.’
Unfortunately, that is not fully appreciated by those who provide the services but don’t have a statutory duty to do so. Autism is neither mental health nor learning difficulty, but falls between stools, as there is nowhere else to go.
I chaired last Friday’s first north Wales annual autism conference, where I was given a copy of a letter to the health board from various parents stating that child and adolescent mental health services, or CAMHS, are failing, with private autism assessments by experts otherwise employed by CAMHS being dismissed. An e-mail received yesterday from a mum in Monmouthshire states:
‘My child deserves to be educated and receive healthcare and the chance to gain meaningful employment as an adult. I as a mother should not have to be placed under the enormous strain and stress to gain these things that come as standard to other children.’
The response by the National Autistic Society Cymru to the refreshed autistic spectrum disorder strategic action plan consultation document was written with input and feedback from their branch members across Wales. And let us remember that this is a member-led organisation representing people on the spectrum themselves, their families and carers.