5. Remove barriers to access

Recommendations for Care Providers

Insist on prompt and effective access to advocacy for autistic people.¹
Ensure autistic people who lack capacity are fully involved in best interests’ decision-making processes including provision of information in alternative formats and accessible forms of communication.²
Recognise the risks of barriers to healthcare and the above average levels of co-occurring conditions in autistic people.³
Ensure autistic people have regular preventive health checks and screening that are provided in accessible ways with reasonable adjustments as needed (provided doing so is consistent with respecting the autistic person’s autonomy).
Train staff to support and advocate for autistic people in healthcare situations recognising the risks of ‘diagnostic overshadowing’ and of sensory and communication barriers to achieving effective healthcare.
Train staff to support decision making around healthcare, including the provision of information in alternative formats and compliance with mental capacity law in healthcare decision making.
Challenge discriminatory treatment of autistic people in health, social care and community environments.⁴
Facilitate access for autistic people to the full rights of citizenship (including voting, activism, making complaints, being involved in research and consultations).
Facilitate access for autistic people to rewarding activities, enabling people to contribute to society in ways which are meaningful to them.⁵
Provide or ensure the provision of continual access for all autistic people to a good quality internet connection with no or an absolute minimum of proportionate and necessary restrictions on an equal basis to that enjoyed by non-disabled citizens (i.e. as a basic utility on a par with water and electricity).⁶
Provide or ensure the provision of unrestricted and continual access to individually owned, up to date technological devices (e.g. laptops, tablets, smart phones) on an equal basis to that enjoyed by non-disabled citizens.
Provide or ensure the provision of augmentative and alternative communication systems (including up to date technology) for all those who could potentially benefit from them as an essential reasonable adjustment.

“It is critical to improve access to healthcare for autistic people of all ages. This population have increased health risks and reduced life expectancy, yet face multiple obstacles to accessing the same healthcare that other population groups enjoy. The knock-on effect of poor access to healthcare on physical and mental health, on employment and the economy, on quality of life and mortality, leads us to request positive action now.”⁷

“Autistic people generally have more health problems than other people, and a higher risk of premature death, including a nine-times higher risk of suicide. (We stress though that the latter figure is from a Swedish study and may not translate directly to the UK.) There are many reasons … they include aboveaverage rates of co-occurring conditions such as epilepsy and anxiety; lack of understanding and awareness about autism among health and other professionals; difficulties faced by some autistic people in recognising symptoms and expressing their needs; poor information systems; and the fact that many autistic people are economically and socially disadvantaged.”⁸

A good service for autistic people takes a proactive role in advocating for autistic people in accessing healthcare services, challenging discriminatory treatment and failures to make reasonable adjustments and consistently supporting autistic people to gain effective access to healthcare. Good social care commissioning recognises that, while healthcare itself is a health need, and reasonable adjustments must be made, additional support needed to access healthcare is a social care need which must be routinely met by social care services.⁹

“The autistic minority face many more barriers than the neurotypical majority, and that is fundamentally unfair.”¹⁰

A good service for autistic people recognises and supports them to challenge the inequality, discrimination and barriers which autistic people face in fully exercising their citizenship. A good service for autistic people supports, empowers and enables them to self-advocate. A good service for autistic people looks for, identifies and seeks to eliminate barriers, inequalities and discrimination within and beyond its own service.

“There are also many barriers to opportunity. … gainful use of time is not just about paid work, and opportunities must also not be closed off to other rewarding activities such as volunteering and studying.”¹¹

Everyone is capable of making a contribution to their society¹² in a way which is not tokenistic but, rather, meaningful and worthwhile. “In the right environment, autistic people can demonstrate particular strengths such as intense focus and attention to detail, which can result in higher productivity when compared with the neurotypical population.”¹³

A good service for autistic people seeks to identify and support individual interests, skills, and strengths and to provide or facilitate the provision of an environment in which each autistic person can thrive, develop and contribute. A good service for autistic people will provide or facilitate access to lifelong learning and acquisition of skills and knowledge. Sustaining such provision will require long-term ongoing support for at least some individuals and regular reviews of support and accessibility issues for all.

Recommendations for Care Providers

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