Barriers to autism services

A perplexing juxtaposition of ability and disability and an absence of usual development alongside the presence of the unusual ... is the cause of much misunderstanding of the nature of [autism], affecting decisions about help and support.

[10]

Fundamental barriers exist for people with autism in engaging with the world around them, where other people communicate in confusing or upsetting ways, adding to what many describe as ‘an ever-present sense of anxiety’.[11] A study in Sweden [12] demonstrated that the autistic people were more stressed and found it harder to cope than their neurotypical counterparts (‘neurotypical’ is used by many people with autism to describe those without the condition). Everyday places such as supermarkets, streets and hospitals can be forbiddingly noisy or unpredictable. It is not a world designed by or for autistic people.

Our work into the particular obstacles to accessing social care showed that for many people with autism, and their families and friends, it is a wearying battle to get the care they need.[13] Difficulties can be even greater for autistic people who display behaviour that challenges services, or who have needs that cross the boundaries of several different services. Individual professionals may be extremely helpful, but the system itself is seen as ill-informed, complex and set up in ways that exclude or alienate people with autism.[14]

Barriers to receiving services include:

• A lack of awareness about autism and understanding of how it might affect each autistic person differently, from some social care staff, other professions and society generally.
• The ‘invisibility’ of autism as a condition. People with autism do not have obvious physical signs of it, and are sometimes therefore thought to interact in ways that are simply odd, ill-mannered or alarming.
• Disability and benefits legislation and assessments, which sometimes seem shaped by a perception that a disability must have a physical manifestation. Receiving support can rely heavily on good social communication and social interaction skills when completing forms or taking part in assessments.
• The degree to which some people with autism can be talented and, particularly if they have no learning disability, very articulate. This can lead professionals to assume that they do not need social care or support.
• The blocking of people with high-functioning autism or Asperger syndrome from some social care services, because they do not qualify for learning disability- or mental health-specific services.
• Many services, such as drug and alcohol, not feeling confident in offering a service and trying to refer people with autism to specialised services that are scarce, and can be geographically or financially difficult to access.
• Many social services introducing generic teams, which have separate sections for initial assessment and for ongoing care.

Social care assessors sometimes lack sufficient awareness of autism to do the job of establishing the needs of people with autism properly.[16] The paperwork used – assessment forms, or resource allocation systems in England – can be too blunt to pick up the complex needs that people with autism sometimes have. They can also rely on good communication skills, and the insight, willingness and confidence to disclose personal details.

Sometimes needs can be met creatively and flexibly, and in ways that are not expensive, however some people with autism have really complex needs and meeting them can involve skilled staff or intensive support. This can be costly, and underfunded care packages are another barrier to a good quality of life for some.[17] This is a concern at a time when councils and clinical commissioning groups (CCGs) are having to reduce what they spend.

The national Autism Strategy for England was launched with the Autism Act 2009, and the ‘Fulfilling and rewarding lives’ strategy which followed [18] and its update, ‘Think autism’ [19] are aimed at addressing some of these barriers.