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Spotlight on the urgent issue of access to health: AE members and allies share studies and good practices

The Lancet Regional Health – Europe journal published a study about the reduced life expectancy of autistic people in the United Kingdom, compared to the general population, with researchers saying it highlights an urgent need to address inequalities to prevent premature death for people on the autism spectrum. On this occasion, Autism-Europe (AE) Director talked to Euronews and reiterated our call to tackle discrimination and improve accessibility for autistic people in the field of healthcare. In December, AE also organised an “Afternoon of Good Practices” dedicated to access to health where AE members and experts shared inspiring initiatives in the field.

People diagnosed with autism and a learning disability are more likely to die prematurely in the UK compared to those without those conditions, according to a Lancet Regional Health – Europe journal new study. Interviewed by Euronews, AE Director Aurélie Baranger recalled AE recommendations for a public health plan for autism that includes accommodation in healthcare for autistic people as well as systematic training for health workers in autism.

She also highlighted the recent adoption of the European Parliament’s Resolution on “Harmonising the Rights of autistic people”. This resolution is a strong call for action both at the European level and at the national level, for policymakers to take further action to address the discrimination experienced by autistic people and promote systematic reasonable accommodation, including in healthcare.

To this end, identifying the needs of autistic of autistic people and developing tools and practices to foster accessibility in the healthcare system is essential, and it was precisely the focus of the latest session of the “Afternoon of Good Practices” held by AE in December 2023.

Afternoon of Good practices dedicated to the accessibility to health services for autistic people

The Afternoon of Good Practices are informal networking and information exchange sessions organised bi-monthly online for AE members and partners to promote mutual learning.

At the latest session in December 2023, Guillermo Benito Ruiz, first, presented the results of a study conducted by Confederación Autismo España about the barriers and facilitators to healthcare for autistic people in Spain. He also introduced a set of recommendations to enhance accessibility of the healthcare system.

To this end, it is crucial to adapt the environment to be more autism-friendly and predictable, the general healthcare system should take into account cognitive accessibility, all medical procedures should be adapted to autistic people. It is also essential to ensure access to mental health and systematic training for healthcare professionals.

Aitana Garcia and Cristina Couto, then, presented the work of the Galician Autism Federation to address the barriers to health by focusing on healthcare accessibility. The Federation actively promotes cognitive accessibility and the humanisation of healthcare assistance. It involves implementing measures to foster the availability of specialized and specific care for autistic patients with autism, and promoting the training and education of healthcare professionals, in collaboration with the Galician Health Service.

Then, Mary Doherty,  from the University College Dublin School of Medicine in Ireland and founder of Autistic Doctors International, explained more specifically how healthcare environments can be challenging for all patients but autistic people may require specific accommodations to allow equitable access. She presented a simple framework which may facilitate equitable clinical services at all points of access and care, using the acronym ‘SPACE’. This encompasses five core autistic needs: Sensory needs, Predictability, Acceptance, Communication and Empathy. Three additional domains are represented by physical space, processing space and emotional space.

This simple yet memorable framework encompasses commonalities shared by autistic people and we hope that it becomes widely known in the healthcare communities, hence translation in various languages is now underway.

All publication of Autistic Doctors International are also published here

Finally, Stéphanie Baz presented the work of Coactis Santé, an association founded in 2010 to promote access to treatment and health for people with disabilities by creating concrete tools. SantéBD is a website that hosts booklets in easy-to-read explaining a range of medical procedures to facilitate interactions between patients and health professionals. Currently there are more than 60 booklets covering a wide range of health topics, available in 4 languages ​​(English, Romanian, Spanish, German). A multilingual site will soon be available.

Another initiative is the HandiConnect Platform, which offers remote training for health professionals to help them better address the needs of patients with disabilities.