13. Engagement Events – Afternoon Sessions
The afternoon sessions of our engagement events were targeted in particular at professionals who work with or encounter autistic people. The following distils the main discussion points and is presented thematically.
Training and awareness
Delegates agreed that more needs to be done to ensure the workforce is better trained in understanding autism and how to support an autistic person. Training should cover more than just health and social care. Delegates thought the education sector particularly important here, and that more could be done to ensure teachers are better equipped to work with autistic children. While delegates thought this kind of training would go some way to improving things for autistic people, some said that training alone was not enough – more needs to be done to effect social and attitudinal changes.
Delegates raised the importance of increasing public awareness of autism. Some said that because autism is a 'hidden' disability, it is much easier to miss and misunderstand. Delegates cited examples from their own experiences, such as children being written off as 'badly behaved'. Some delegates suggested that a public awareness campaign would useful to raise awareness. Delegates also raised the importance of taking an asset-based approach to autistic people, highlighting their often unique skills and talents rather than focusing disproportionately on what the person might not be able to do. By raising general awareness of autism it was thought autistic people and their families may be able to do the 'ordinary' things that might otherwise be difficult, for example going out for a family meal. This linked to the idea of autism-friendly activity e.g. autism friendly showings at cinemas. Delegates thought there should be more activity of this type, but also that it could be better coordinated so that any autism-friendly activity did not overlap.
Diagnosis, post-diagnostic support and services
Some delegates were critical of CAMHS and the transition from children to adult services. It was felt that the transitioning from one to the other was not adequately considered nor were appropriate plans put in place; indeed, it was recognised transitions happen every day and across the lifespan. At least one delegate suggested that autism should be taken out from CAMHS altogether. Others suggested that services need to get better at sharing information and working together, and at workforce planning; increasing awareness of autism has clearly placed additional pressure on service capacity.
Delegates thought more information could be made available about what services are available and how accesses them – a central repository holding such information was suggested. Delegates suggested this information could be made available online. This would include general services such as General Practice, dentistry and optometry.
Delegates raised the issue of funding and the importance of ensuring services are properly funded. Lack of funding or inadequate funding can impact services' ability to deliver, which in turn can drive up waiting times for an autism assessment. It was suggested that a 'national framework' for diagnosis might help in this area.
A number of delegates raised the issue of autistic people's overall health, mentioning in particular sleep and diet. Failure to adequately address these issues can lead to further health problems, including mental health issues. It was felt that mental health service provision was not meeting the needs of autistic people and their families. The need to look to a person's basic health, including personal hygiene was raised. It was thought that information should be made available on personal resilience and life and social skills. Some delegates raised the issue of women on the autism spectrum and that some had been misdiagnosed. This then had a knock-on effect on the support they could access, propelling them into poverty.
Several delegates raised the issue of the wider family unit, including parents and siblings. Overall there was a belief that more could be done in this area. Some delegates spoke of the long-lasting negative on families. Peer and parent support groups were thought vaulable, as was the possibility of developing respite services for parents of autistic children. On the whole, while delegates acknowledge that pockets of good practice did exist, post-diagnostic support could be better and more consistent.
Delegates raised the issue of social security and the general negative experiences autistic people have had of DWP processes and applications. Delegates said the forms for benefits such as PIP were not autism-friendly, and that an autistic person answering the questions would most likely downplay (unintentionally) the extent to which their autism affects them day-to-day and therefore impact their chances of being given an award, or of the rate awarded. Delegates also raised the issue of having to re-apply periodically for benefits like PIP: autism is lifelong - so should be the awards. The prospect of attending assessment was raised as being particularly traumatic for a person with autism.
Housing and independent living
Delegates raised the issue of housing and that housing options needs to be available. Delegates said that location and environment were crucial to an autistic person living successfully in their own home. Some delegates said that autistic people need to close to their family, friends and support network. At least one delegate noted the importance of leveraging procurement to ensure equality issues are being addressed. The issue of travel was also raised. Delegates said that even the slightest change to a timetable can cause enormous stress to an autistic individual.