Prynhawn Da a croeso/ Good Afternoon and welcome.
And thank you to Willow Holloway for inviting me to host this event, which joins together the Autistic Women's Empowerment Project and Autistic UK with other user-led organisations to strengthen the Autistic Voice.
During the month of April Autistic UK will be promoting their "Going Gold for Autistic Acceptance" campaign.
Autistic UK uses the colour gold because of its chemical symbol Au' and because they want a society that allows our strengths and talents to shine.
At today’s autistic-led event we will hear from Autistic adults speaking about their experiences, challenges and their own unique strengths and talents.
They will be covering areas of concern, but more importantly putting forward ideas of how we can all work together co-productively to ensure that we begin to tackle the discrimination against autistic people that has become the norm rather than the exception.
I have been asked to speak about acceptance, recognition of Needs and Rights, involvement of autistic voices representation and co-production.
Although Autism is neither mental health nor learning difficulty, too often people with Autism fall between stools as there is nowhere else to go.
As I stated when proposing a Wales Autism Bill in the Chamber in October 2016, “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.
If we are to have true integration in services for the autism community then we must become more flexible in the delivery of services and see the world through their eyes”.
After a constituent and friend with Autism experienced problems on a Virgin Trains trip, I visited Virgin Trains Talent Academy in Crewe with this brilliant young man from Wrexham for him to provide them with autism awareness training.
This went brilliantly and Virgin Trains Public Affairs Manager emailed me afterwards stating "I found it a highly engaging session with a very well delivered presentation. It was quite clear that everyone else in the room felt the same, too".
The response from their front lone staff at the training session reinforced the message if service providers are to remove barriers to access for disabled people, it is essential that they see the world through their eyes.
When I use the words “disabled” here I’m using the “social model” definition, recognising that people are not disabled by their condition, but by the barriers to access and inclusion which society places in their way.
Last month I raised some issues highlighted in the 1st March 2018 Welsh Government publication, 'Evaluation of the Integrated Autism Service and Autistic Spectrum Disorder Strategic Action Plan: Interim Report'.
The findings in this include weaknesses and inconsistencies in both assessment and diagnostic services for adults with autism, and in support services for adults and children with autism.
It says ‘the focus upon co-production and prevention is expected to help improve effectiveness and reduce demand, and integration is expected to help maximise synergies and create more seamless services. However, evidence of the impact and efficiencies generated by integration remain weak’.
And a final quote: 'Success requires a co-productive approach involving staff, service users and carers in the design, implementation and evaluation of the Integrated Autism Service’, but there are 'concerns that the "top down" approach...has stifled this'.
As I stated “recognising that people living in the autism community, whether they are on the spectrum, or their families or carers, are the real experts in their own lives, and that although each is unique as an individual, as everybody else is, only they can truly deliver effective autism awareness to help public sector providers, and others, see the world through their eyes”.
As Disability Arts Cymru website states, “The difference between Disability Equality Training and Disability Awareness Training is that … “Disability Awareness Training is often led by nondisabled people who are professionals in the medical or caring professions. This training has a medical focus; it informs participants about disabled people’s impairments, and ways of ‘overcoming’ disability.
“Disability Equality Training is always led by trainers who are disabled people. The focus is on disabled and non-disabled people working together to overcome the disabling barriers in society. This training has a holistic focus, recognising that removing physical, financial and attitudinal barriers will create a more inclusive, accessible society.”
This applies equally to Autism Awareness and Equality Training.
Only last Friday, I was copied on an e-mail to the Welsh Government’s Additional Learning Needs Branch which asked several questions on behalf of a North Wales support group for autistic and other disabled children and their parents, such as “How are parents and children to get their rights if the relevant staff at the Local Education Authority don’t know the basics?”.
For example, as Willow representing 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”.
And 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.
To improve the lives of people in the autism community in Wales, they tell me that the Welsh Government must start doing things with them rather than to them, recognising that too many of the so-called experts involved in delivery of their Autism Service will continue to get it wrong until they start acting upon the knowledge and expertise in the autism community itself - and until we have an Autism Act imposing statutory duties in Wales.”
In order to be person-centred, services now need to change to be more flexible, working with people and their families to find the best way to provide their care.
In 2013, my Member Proposed Bill on Community Care (Direct Payments) (Wales) was designed to offer carers and service users choice, control and independence - allowing people to choose whether they want to be in control - and giving them the support to do this.
The Deputy Minister stated that she would like the principles in my Bill to be taken forward in the Social Services and Wellbeing Bill – and I therefore agreed to withdraw my motion and work with the Welsh Government on this.
The subsequent Social Services and Wellbeing Act Part 2 Code of Practice stated “This puts in place a system where people are full partners in the design and operation of care and support. It gives people clear and unambiguous rights and responsibilities.”
It said that “Local authorities must seek to empower people to produce innovative solutions through local networks and communities” and that this “means putting robust arrangements in place to secure involvement of people in the design and operation of services”.
It also stated that well-being includes key aspects of independent living, as expressed in the UN Convention on the Rights of Disabled People, and that:
“the approach to promoting people’s well-being, is one that recognises that care and support can contribute to the removal of barriers in line with the social model of disability - recognising the Welsh Government’s framework for Action on Independent Living, which “expresses the rights of disabled people to participate fully in all aspects of life”.
The well-being objectives in the Well-being of Future Generations (Wales) Act also include people contributing to their community, being informed, included and listened to.
There are 5 Ways of Working that the public bodies listed in the Act must demonstrate in order to show that they have applied this principle:
1. Thinking for the long-term – thinking about long-term needs and demands as well as current ones.
2. Prevention – acting to prevent problems getting worse or from starting in the first place.
3. Integration – considering how actions in one area may impact on other areas.
4. Collaboration – Working with others – including third sector bodies and communities - to help achieve goals that have been decided together
5. Involvement – involving the people that services or activities are going to benefit or affect from as early a stage as possible.
However, too many in the Autism Community are expressing concerns about the roll out of the Welsh Government’s Integrated Autism Service stating that there is still a view that it is acceptable to take a medical model stance using medical model language, and that engagement with people with Autism and their families/carers feels like tokenism.
This re-enforces the importance of Autistic-led events such as this, with the authentic voice of Autistic Adults not only identifying areas of concern, but also how we can work together to begin tackling the discrimination faced by Autistic people.