Chair of the Cross Party Group on Autism, and North Wales Assembly Member, Mark Isherwood, has called on the Welsh Government to respond to concerns raised by people with autism at the Going for Gold Autistic Acceptance event he hosted in the Senedd earlier this week.
Mr Isherwood put forward a number of questions to Leader of the House Julie James AM, whose Ministerial responsibilities include equality and human rights, following Monday’s autistic-led event, at which autistic adults detailed their areas of concern, and proposed how “we can all work together co-productively, to ensure that we begin to tackle the discrimination faced by autistic people 'that has become the norm rather than the exception'.”
Questioning the Leader of the House, Mr Isherwood, asked how she will address the growing concerns within the autism community, and more broadly amongst disabled people in Wales, that awareness training is being provided without them or despite them on a medical model, rather than with them on a co-productive basis to tackle the barriers that they're encountering.
He said:
“They particularly raised concern that awareness is not acceptance or equality, which is where your role comes into this, and yet there's growing concern that autism awareness training generally, and disability awareness training more broadly, across Wales is increasingly being led by non-disabled people who are professionals in medical or caring professions with a medical focus, which informs people about disabled people's impairments and ways of overcoming disability, whereas, as the sector says, autism equality training is always led by trainers who are disabled people, with a focus on disabled and non-disabled people working together to overcome the disabling barriers in society, recognising that removing physical, financial and attitudinal barriers will create a more inclusive, accessible society.”
Mr Isherwood also questioned her about assessment and diagnostic services and the need for a co-productive approach.
“The Welsh Government publication early last month of its evaluation of the Integrated Autism Service and Autism Spectrum Disorder - a word I hope the Welsh Government has stopped using; it should be 'condition' - and Strategic Action Plan Interim Report found weaknesses and inconsistencies in both assessment and diagnostic services for adults with autism and in support services for adults and children with autism, and said that although success requires a co-productive approach involving staff, service users and carers in the design, implementation and evaluation of the service,
'There are concerns that the “top down” approach…has stifled this”. Again, from Monday's event, and more broadly, the community feels that this is a breach of their equality and human rights. It's more than systems; it's more than services; it's a rights-based issue.”
Mr Isherwood’s final question focused on his “increasingly bulging case load of families where children, particularly girls, are being denied autism assessment and diagnosis because of the gender-based misconceptions about how autism presents itself”.
He said: “I've got an example here from the Inns of Court College of Advocacy, whose own guidelines say: ‘that females with autism may appear more sociable than their male counterparts. It's been suggested that women and girls with autism are better able to engage in social situations because they're likely to observe and copy others in their social skills and use of language. Such strategies may mask any difficulties that they have and make them appear to be more able than they actually are’.
“I have a growing number of cases, where health boards and schools are seeing the masking rather than the person, and more and more of these girls and their families - some of whose parents are on the spectrum as well - suffering serious anxiety problems, depression, absenteeism from school, falling behind and, nonetheless, having a belligerent and non-co-productive response from the statutory bodies to them, and to me when I represent them. I know that this covers briefs that are not yours, but, again, these parents and, when I meet them, the children are telling me this is a breach of their human rights. And, again, I hope that you will confirm that you will give consideration to addressing these very real concerns because they're causing real damage to real lives.”
The Leader of the House agreed to a meeting with Mr Isherwood to further discuss the concerns raised.