On World Autism Awareness Day, Chair of the Cross Party Autism Group and North Wales Assembly Member, Mark Isherwood, has hosted and spoken at an event to promote autistic acceptance and strengthen the autistic voice.
The ‘Going Gold World Autism Day 2019’ event joined together the Autistic Women's Empowerment Project and Autistic UK with other user-led organisations, to help build links and relationships between Autistic adults and the bodies that provide services in Wales. It also promoted the inclusion of all Autistic voices during the development of policy and the design of services.
Speaking at the event, Mr Isherwood, who has been campaigning for autistic people’s rights for many years and is a strong supporter and ally of the Autistic community in Wales, said:
“Today is about moving beyond awareness to Autistic acceptance and empowerment.
“Autistic UK uses the colour gold because of its chemical symbol Au' and because they want a society that allows the strengths and talents of Autistic people to shine.
“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’.
“Every day, my Office is contacted by Autistic people suffering anxiety, pain or trauma following their engagement with public services.
“They express their concern to us about a lack of autism understanding and acceptance, especially with regard to overload, stress, anxiety, and difficulties around change.”
He added: “As we heard from an Autistic Autism advocate at the last meeting of the Cross Party Autism Group in 2018, “there is too much focus on interventions based on behaviour, not what is driving this behaviour. We need early recognition before Autistic people reach crisis point. The first thing to ask is ‘are they in pain’. Then ‘Why are they anxious? Why are they in fight or flight mode?’ ”.
“As the mother of an Autistic man who committed suicide in 2018 told me “he appeared just a quiet bright young man – they don’t see the struggle these kids go through every day to survive in a neuro-typical world”.
“Typical of many, a mother told me that her thirteen year old daughter had been out of education for four years due to lack of knowledge and understanding of Autism.
“Another told me that her Autistic daughter is 240 miles away in a Mental Health hospital as a result of years of anxiety due to a lack of understanding. Another that “early recognition of Autism is vital. My eleven year son never received early intervention and will have a much harder life in consequence”.
“Speaking personally, I deeply regret that the Autism (Wales) Bill did not proceed past the Stage 1 proceedings in the Assembly in January.”
He added:
“As Autistic people tell me, if we are to improve their lives, the Welsh Government and Public Bodies must do things with them rather than to them and recognise that too many of those involved in the delivery of services for Autistic people will continue to get it wrong until they start acting upon the knowledge and expertise in the Autistic community itself.
“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 or support”.
