Chair of the Cross Party Group on Autism, Mark Isherwood AM, has hosted an event in the Senedd yesterday evening which joined together the Autistic Women's Empowerment Project and Autistic UK with other user-led organisations to strengthen the Autistic Voice.
At the autistic-led event, ‘Going Gold for Autistic Acceptance’, those in attendance heard from Autistic adults speaking about their experiences, challenges and their own unique strengths and talents.
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, spoke about acceptance, recognition of needs and rights, involvement of autistic voices, representation and co-production.
He also referred to the fact that during the month of April Autistic UK will be promoting their ‘Going Gold for Autistic Acceptance’ campaign.
He said:
“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”.
He added: “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 '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, it must be recognised “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”.
Mr Isherwood emphasised the need for improved Autism Awareness and Autism Equality Training, led by trainers from within the autism community, focused on autistic and non-autistic people working together to overcome the disabling barriers in society. .
He added: “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 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, which may then be rejected by public sector bodies.
“People in the autism community in Wales tell me that in order to improve their lives, 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.”