Tish Marrable and Imogen Taylor Department of Social Work and Social Care

1. Invisible disability and communication barriers to social care: discrimination, access and social support for adults with autism. Tish Marrable and Imogen Taylor Department of Social Work and Social Care University of Sussex, England

2. Autism – an ‘invisible’ disability? ‘My autism is invisible – if I were in a wheelchair no one would be asking me to take the stairs! They can see the problem.’ (Man with autism, age 53) • A lack of physical signs and can be difficult to recognise (Barnard 2008, Mills & Francis 2010) • A heterogeneous condition – called a spectrum since some people are severely disabled and require specialist support, while others are able to cope well with more targeted support (SCIE 2011) • A life-long developmental difference. Approximately half of those with an ASC have a learning disability, and many have other physical or emotional disabilities. Many are highly intelligent and creative. • Rising diagnosis? But numbers differ between countries and within countries (Eyal 2010). Recent estimates that 1.16% of UK population have autism (DH 2009)

3. Areas of difference used in diagnosis: The triad of impairments (SCIE 2011) • difficulties with social interaction: find it hard to instinctively understand, or recognise, how other people are feeling and to express own emotions. • difficulties with social communication: often struggle with verbal and non-verbal language (for example, misunderstanding body language, humour and double meanings). Some have no speech while others have language but use is different, e.g. literal understandings, socially inappropriate comments. • difficulties with social imagination: can find it hard to move away from a routine, imagine alternatives or their futures, and organise themselves. They find it hard to guess what others may be thinking. Sometimes this leads to having difficulties with social boundaries and risks. • Additionally, people with autism often have sensory sensitivity – (over- or under-sensitivity to things such as light, touch, sound and heat, or certain tastes, textures or smells), problems with motor skills, a need to impose structure, and a focus on a particular interest.

4. The SCIE practice enquiry: access to social care services to support independent living for adults with ASC • Aim was toconsider a range of views about the provision of social care services to support adults with ASC, looking at: • Access • Assessment processes • Policy and practice challenges • Looking for areas of ‘good practice’ in service provision, as perceived by service users, carers and other stakeholders • To provide recommendations to inform future good practice.

5. Methods - designed to provide choice, confidentiality and flexibility in communication styles • Two online surveys (hosted by the National Autistic Society and other service user groups) gathering qualitative and quantitative data: • Adults with ASC: n=89, 47% female, 51% male. Age range 18 – 63. • Carers: n=124, 88% female, 10% male. Age range (approx) 18 – 80. • Follow up emails with 16% of Adults with ASC group, small number of carers. • Face to face interviews in South East, South West, North East: • 11 Adults with ASC • 11 Carers • 12 Service Providers • Clearly not ‘tidy’ categories – people with ASC were also service providers and carers too. • Two National Autistic Society ‘participation groups’ for those with forms of autism that make communication more difficult: • 10 individuals from ‘South Group’ and ‘North Group’.

6. Communication barriers between service users and professionals • Barriers were created where previous experience had led the person with autism to fear communication with professionals: • ‘Fear of being branded a hypochondriac, difficulty explaining what I need, difficulty coming across in a manner that elicits sympathy from health professionals, dismissed as ‘intelligent and therefore able to cope’, etc.’ (man with ASC, 32) • ‘I have been accused of telling lies and being fraudulent because of my literal interpretation of the questions.’ (man with ASC, 39)

7. Poor service provision • Service provision was marred by a failure to understand the needs of those with autism: • ‘Occupational Health was confused by my lack of understanding about why they did some of the things they did. It didn't make much sense to me and it wasn't really helpful. The Physiotherapist wrote me off because I forgot to do the exercises some of the time and I missed appointments’ (Woman with ASC, 46) • ‘I went to a "support group" in my area, but this was run by a very patronising non-autistic person and I did not return.’ (Man with ASC, 34) • ‘There has been on going institutionalised and systemic abuse of power by the social work profession; based on ignorance of his conditions, and prejudice against us as parents’. (Mother/carer of son with ASC, 40)

8. Falling between services • People with autism but no learning disability or mental health problem often had no services available to them: • ‘There are “black holes” which those with ASC just fall into. Everybody says it's someone else’s responsibility. Consequently little gets done or changes’ (Mother/carer of person with ASC, 19) • ‘After the diagnosis I received follow-up appointments with a psychiatrist who tried hard to find me support in my local area, but there wasn't really anything as I don't fit into mental health or learning disability categories’. (Woman with ASC, 36) • ‘I’ve gone to my GP constantly trying to find somebody. I don’t fit learning disability because I’ve got a high IQ. I don’t know where I fit. My GP is completely exasperated’. (Young man with ASC)

9. Lack of suitable services • The services that were available were often unsuitably set up. Doctors’ surgeries were a particular problem for participants: • ‘I do not feel comfortable going into my GP's surgery as the receptionists are so rude and they charge me for letters and then won't post them out and then the receptionists make you wait 15 minutes while they find out if you have paid when you go to collect them and you get so stressed you have a meltdown and can’t cope.’ (Woman with ASC, 35) • ‘I don't like the waiting areas as they are noisy and I worry that I won't hear when my name is called’. (Woman with ASC, 47)

10. Accessing the everyday services • Participants found the everyday bureaucratic services difficult to deal with: • ‘I don’t know how to complete tax forms. I could manage to perhaps fill a form in if I could find all the information. As soon as my stress level goes up, pretty frequently, I get to a situation like now where I’ve completely lost control of my finances. I can’t get help because they need to see the paperwork and I’ve lost the paperwork.’ (Woman with ASC, 53) • ‘I found the forms overwhelming and could not get help in filling them in’. (Woman with ASC, 49) • ‘I didn't fill in forms as they only accept applications on the telephone. I found the telephone quite difficult as I don't like using the phone and the call lasted about an hour. I would have preferred to fill out a form, but they don't do it that way anymore’ (Woman with ASC, 36)

11. What was wanted? • Accessible information. • Diagnostic services with follow-up support • Services that understood autism – health, social care, education, employment support. • A social life • Practical help – from transport to getting things fixed • Joined up services • Support with ‘everyday’ services and functions • More knowledge and understanding of autism in general to promote better communication

12. Our top 4 recommendations • Increased awareness/understanding of ASC and related training for professionals and service providers, including those who gate keep services. • Enhanced provision of diagnostic services. • Services to support people with ASC must improve working together. • The work of carers and its centrality to the lives of some or even many adults with ASC must be recognised. The report can be found at www.scie.org.uk Taylor, I. & Marrable, T. (2011) Access to social care for adults with autistic spectrum conditions. London: SCIE