Autism Act 2009: Response to Government Committee

Back in May we submitted a 17-page response to the Autism Act Committee’s call for evidence.  This report was shared with the Committee and has now been published on the Parliament website.  We hope this will help raise awareness of issues affecting Autistic parents specifically, and all Autistic people generally and lead to meaningful change.

Thank you to everyone who shared their ideas and experiences with us.  With your input, we were able to cover a lot of different issues in our submission.

Our one-page summary is below, and you can read the full report on the Parliament website: https://committees.parliament.uk/writtenevidence/145231/pdf/

Although the Autism Act 2009 was a landmark piece of legislation, it has not led to the meaningful change Autistic people were promised. Services remain fragmented, underfunded, and often inaccessible. Long waiting times for diagnosis, poor post-diagnostic support, and a lack of meaningful Autistic involvement in policymaking have left many feeling failed and unheard.

Although autism awareness has increased, both public and professionals have little understanding of what it is like to be Autistic and the kinds of support and accommodations Autistic people need. Much of people’s knowledge is still based on outdated stereotypes and misconceptions. In addition, issues like that are considered highly important within the Autistic community such as Autistic burnout, masking, Neurodivergent-affirming language and the Double Empathy Problem are poorly understood by wider society.

Change is needed across all systems, including healthcare, education, social care and the justice system. Autistic people face many barriers such as inflexible appointment systems and lack of communication options. Where support is offered, it is often inaccessible, inconsistent and insufficient. Training should be expanded across all sectors to increase autism understanding, and frameworks developed to enable Autistic people to access services.

Autistic people and their families are also disproportionately impacted by poverty. Many Autistic parents have to fund private assessments and support, or give up work to care for their children. Proposed changes to disability benefits threaten to increase financial hardship further, potentially cutting people off from other essential services tied to eligibility.

As a user-led charity supporting Autistic parents, we have found that Autistic parents remain largely invisible in current services and guidance, and urgently need recognition and support. Autistic parenting approaches differ from mainstream norms and should be recognised as valid instead of being stigmatised or pathologised simply for being different. Autistic parents are often misjudged by professionals, leading to difficulties accessing support for themselves and their children, and are at higher risk of parent blame and harmful interventions, with a lack of accountability in the system. In addition, services do not acknowledge autism’s strong heritability rate and the interconnected nature of family needs. Professionals must recognise that parents of Autistic children may also be Autistic and require accommodations. Coordinated, whole-family support models are needed, especially when both parent and child are Autistic.

Our experience as a charity shows that peer-led support is high impact and in demand. It offers accessible, relatable help based on lived experience and is highly effective. Funding for peer support should be increased to fill critical gaps in support services.