Autism community welcomes consultation to update framework

Originally this had 11 recommendations and was approved by Health & Social Care as part of its disability and inclusion strategy.

Although some of these were met, several were not, and that has led to a fresh consultation.

‘It’s a positive sign that the wider autistic community, and their carers, are being asked for their views as part of the potential updates to the framework,’ said Autism & Me co-found Lorna Higgins-Bare.

With autism being a spectrum condition, she said that reaching out to a wider demographic would add benefit to the recommendations in terms of lived experience.

‘Needless to say that autistic people are the “experts” on autism, so their views should be paramount,’ she said.

But she added that more information would be helpful.

‘I think as a community, to give us real confidence in this strategy, we need to know what has seriously changed since 2016, specifically with regards to “pushing the recommendations over the line” this time, and then potentially seeing the results and benefits of them in our community.

‘I think imposing a solid timeline, accountability and full transparency will make this second attempt more successful.’

Marc Winn is the parent of a child with autism and he also welcomed the latest consultation.

‘But it’s hard to ignore that we’ve taken eight to nine years to reach the point of gathering feedback on needs that remain unmet.’

He said real progress went beyond surveys, steering groups and strategy documents.

‘It’s about action that genuinely moves the needle in people’s daily lives. There are still significant gaps in services that affect our ability to work, participate in the community, and live with dignity.

‘I hope the steering group approaches this work with the urgency, intensity, and discomfort that reflects the reality for families living with these challenges every day.’

• The survey is open until Wednesday 5 March and can be completed anonymously at gov.gg/autismsteeringsurvey.