Autism is a developmental condition affecting more than 1 in 100 children and adults in Wales, an estimated 34,000 autistic people, each in a different way.
Together with families and carers, there are around 136,000 people in the autism community in Wales.
Our motion recognises a “need for specific legislation for autism, and calls on the Welsh Government to bring forward an autism (Wales) bill during the fifth Assembly term”.
On January 21st 2015 I led an Individual Members Debate here which called on the Welsh Government to introduce an Autism Act for Wales.
This was passed with 29 members voting in favour and none against, although there were 21 abstentions.
The autism community in Wales is looking to us today to go further and provide a clear and resounding message that it expects an Autism Wales Bill during this Assembly term.
Placing specific duties on local authorities and health boards would lead to greater clarity on the care and support that people with autism can expect.
Although the Autism Spectrum Disorder Strategic Action Plan for Wales was a ‘world first’, autism doesn’t have a statutory identity, which means people are often not able to access effective support unless they have associated mental health problems or learning difficulties.
AND there are serious concerns that the Welsh Government’s refreshed strategy will not be robust enough to make the changes we all want to see without being backed by legislation.
For Wales to reassert itself at the vanguard of autism it needs an Autism Act, giving people with autism the confidence that they will receive the support they need.
The packed November 2014 meeting of the Assembly Cross Party Autism Group voted unanimously in favour of calling for an Autism Act.
We heard:
- from Ystradgynlais, 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, that Autism shouldn’t be a postcode lottery.
- From Blaenau Gwent, that adult services are basically non-existent, and that it’s 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 was also raised with me over support in Flintshire and Wrexham.
Correspondence from Denbighshire Social Services had stated “a child with autism would only be eligible for a service from the department if he experienced an additional physical or learning disability”, but ASD is a condition in its own right and the Autism Strategy states “formal diagnosis…should be neither a prerequisite for a full assessment of each person’s wider needs not should it be a reason for not intervening in a timely manner”.
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 stating that Child, Adolescent and Mental Health Services are failing, with private Autism assessments by experts otherwise employed by CAMHS being dismissed.
An email 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.
This 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”.
NAS Cymru’s 2015 online survey to find out what matters to people in Wales with Autism received 668 responses from autistic people living in Wales, or where they were unable to participate, their parents and carers.
Nearly 90% said that specific autism legislation is needed on similar lines in Wales, to that already existing in England and Northern Ireland.
The survey report states “despite the progress made, the needs of autistic people are still being overlooked at a local level. Families and adults on the spectrum report having to wait years for a diagnosis. Local authorities don’t know how many autistic people are in their area and so aren’t planning appropriately for the support they need. Professionals aren’t able to support people on the spectrum properly, as they lack training and understanding. It has become increasingly clear that decisive action from the Welsh Government is needed.”
It recommends that an Autism Act for Wales:
- puts a duty on health boards to ensure that there is a clear pathway to diagnosis of autism in every area
- puts a duty on local authorities to record the numbers of autistic children and adults in their area to inform planning processes
- every local area uses this data, alongside consultation with local people on the spectrum and their families to develop a plan on how they will meet the needs of the local autistic population
- makes sure that this data is regularly reviewed and shared between children’s and adult services to ensure smooth transitions for autistic young people
- ensures statutory guidance is developed to set out which professionals need what levels of training to ensure that autistic children and adults are supported by professionals who understand them
- makes clear that autistic children and adults shouldn’t be turned away from accessing public services because they’re seen as ‘too able’ and their IQ ‘too high’
- is regularly reviewed and monitored to make sure clear progress is being made.
Although the Welsh Government have said that not one response to its consultation on the refreshed plan asked for an Act, an Autism Act wasn’t part of the consultation document or the consultation questions.
The Welsh Government have not published the responses to date, but I suspect that there are lots of references to what an Act could do – i.e ensure a clear pathway to diagnosis; training for professionals; local plans developed for services and support based on individual needs.
Without legislation, a strategy is a voluntary wish list – with no obligation on Local Authorities or Local Health Boards to implement it, and therefore no redress.
According to the consultation on the refreshed autism strategy, the new integrated autism service was due to be begin ‘From 2016’ - but the WLGA are only just collecting data on what a service should look like.
The Social Services and Wellbeing Act establishes seven Regional Partnership Boards which must respond to a population assessment – and one of the Welsh Government’s core themes of the area plans following population assessments includes mental health and ‘learning disability/autism.’
However, autism is a condition in its own right and coupling it with learning disabilities will not give a clear picture of the needs of people with autism.
Local authorities have a mental health and a learning disability team but not necessarily a specific autism team. The risk therefore remains that autistic people will continue to fall down the gap between them.
There is no mandatory autism training for professionals.
The population assessment is a general assessment and may not go into enough detail to be able to make an assessment of autism, which requires input from several agencies.
The Act makes no reference to diagnosis.
And the new eligibility criteria may mean that autistic people are deemed not eligible for support.
There are many genetic syndromes such as Fragile X Syndrome, which may underlie an autism diagnosis. These diagnoses should also be seen as meaningful by services and be used to help guide support.
In response to the January 2015 debate, Mark Drakeford said that his officials would monitor spend after ring-fencing of the autism money for local authorities was dropped.
We need to know how much each local authority has received and how the money is being spent.
England’s Autism Act covers only adults. The Northern Ireland Act covers all ages and all Government departments .
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.
Four of the Five parties represented here made a commitment to Autism legislation in their manifesto and thousands have signed an online petition in favour of an Autism Act for Wales.
It’s time to make it happen.