On January 21st 2015 I led an Individual Members Debate here which called on the Welsh Government to introduce an Autism Act for Wales.
Members voted in favour.
Eight months ago I led a non-partisan debate recognising a “need for specific legislation for autism, and calling on the Welsh Government to bring forward an autism (Wales) bill during the fifth Assembly term”.
Its defeat on party lines caused huge distress and I pray that we can move beyond this today, and deliver at last for the Autism community in Wales.
I therefore thank my colleague Paul Davies for bringing forward proposals today to ensure that autism has a proper statutory identity in Wales and that services for people with Autism meet their real needs.
Although Autism is neither mental health nor learning difficulty, people with Autism fall between stools as there is nowhere else to go.
There are serious concerns that the Welsh Government’s refreshed strategy is not robust enough to make the changes we all want to see unless backed by legislation.
Placing specific duties on local authorities and health boards would provide greater clarity on the care and support that people with autism can expect.
On-line resources and training films for front line professionals, and National Autism service flow charts, are all well and good – but the Autism Community will not receive the support they know they need until there is statutory underpinning and accountability – and we move beyond consultation to a direct role for professional and Third Sector bodies, and the Autism community, in design, delivery and monitoring.
Attended by members of the Autism community from across Wales, the packed November 2014 meeting of the Assembly Cross Party Autism Group voted unanimously in favour of calling for an Autism Act.
We heard that the “strategy promised to deliver so much but people are being pushed into further crisis”, 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.
Although the Welsh Government have said that not one response to its Refreshed Autistic Spectrum Disorder Strategic Action Plan Consultation Document asked for an Autism Act, this wasn’t part of the consultation document or questions.
In fact, the response by the National Autistic Society Cymru, written with input from their branch members across Wales, stated:
“that statutory backing to the strategy, combined with much closer measurement of progress to meet the key aims of the strategy, is vital in securing the change that we all want to see for autistic children and adults and their family members”.
I represent a large number of constituents in the Autism community fighting the system to get the services needed by them or their loved ones.
This was summarised in an email I received this week which said “My 11 year old has been diagnosed with Autism, and at this moment he doesn't get the backing and support he needs. Your vote for the bill could make all the difference to his future and others like him”.
As The Autistic Women’s Empowerment Project told the Cross Party Autism Group, which I Chair, “the different presentations of autism in women and girls suggests that the accepted ratio of five boys to one girl should actually be a lot closer – where many females are left undiagnosed, misdiagnosed or without support”.
As the parents of several daughters have told me, “statutory bodies don’t understand that thinking has changed, that autism presents differently in girls, and that many females are unable to access a diagnosis due to stereotyped views, leaving autistic girls and women vulnerable to low self-worth, anxiety, depression and self-harm”.”
Too often parents are then forced to pay for private Autism assessment.
A 2017 letter from the Health Board said that Flintshire CAMHS “had raised concerns about the rigour and conclusions in a number of private assessments and in some cases didn’t accept the diagnosis”.
And that “there was a requirement for these to be in line with NICE guidance”.
When I referred this to the Doctor who had carried out these assessments, she responded that she was in fact a contributor to NICE guidelines.
This single example illustrates a wider institutional problem – and why Wales needs an Autism Act to meet the needs of children and adults with Autism Spectrum conditions in Wales - and to protect and promote the rights of both adults and children with autism in Wales.