Background to the research

• ASD is the term used to describe pervasive developmental disorders diagnosed in the presence of atypical behaviours in social interaction, social communication and social imagination. Prevalence rates have been rising sharply and are estimated to be 1:88, and 1 in 50 amongst children. Boys seem to be affected more frequently than girls.
• In NI, the Autism Act (NI) 2011 amended the Disability Discrimination Act 1995 by including in the definition of disability people who have impairments with regard to taking part in typical social interaction or forming social relationships. The Act also mandated the development of a cross-departmental Autism Strategy to be published no less than two years within the passing of the Act. Against this backdrop, a module on autism was included in the NILT survey in 2012.

Research Approach

• This Research Update uses results from this module to provide a timely measure of public awareness of, and attitudes towards, individuals with autism prior to the implementation of the Autism Strategy.
• The survey involved a representative sample of adults aged 18 years or over, living in private households across Northern Ireland. 1204 people were interivewed in their own homes.

Main Findings

• Autism awareness was much higher than expected: 82% of NILT respondents stated that they were aware of autism, ASD or Asperger's Syndrome, while only 16% were unaware and 2% were unsure. The remaining questions in the autism module were asked of those respondents who had heard of autism.
• The strengths that participants associated with autism included being intelligent/very intelligent, having a special talent, creativity, good memory and being good at art, music or maths. Non-academic strengths such as being loving, focused and determined were also mentioned. A number of participants commented that they were unsure what the strengths of autism are or that they felt that there is variation in strengths amongst individuals with autism. Just over one third of respondents did not answer this question. Special abilities are relatively infrequent amongst individuals diagnosed with autism, estimated to occur in 1:200 individuals with autism; special talent was cited by a relatively small number of participants as a strength associated with autism. Nevertheless, when asked specifically if they thought that individuals with autism have a special talent, 84% of respondents answered either definitely or probably.
• When asked to name the difficulties associated with autism, respondents correctly identified many of the core features of autism including communication, social, behavioural and interaction difficulties. Respondents also rightly identified that individuals with autism are likely to have difficulties in areas of life such as understanding other people's feelings, being understood, dealing with changes to routines, integrating into society, being independent, and concentration. A small number of participants thought that there could be variation between individuals with autism in terms of the difficulties that they experience.
• More than three fifths of the participants (61%) said that they knew someone with autism. Of these, 19% had a close relative or other family member with autism, 40% had a friend or acquaintance and 8% had a work colleague with autism; one individual with ASD completed the survey. However, 39% of respondents said that they did not know or were unsure if they knew someone with autism.
• The NILT survey included a list of jobs, ranging from relatively low skills, to manual, and to highly skilled, to explore if the public viewed only certain types of jobs as suitable for someone with autism. Most respondents felt that the majority of the jobs listed may be suitable, although clearly this would depend on the level of relevant skills and level of functioning of the individual (as it would for anyone else) and the level of support available. The majority of the public agreed that the following jobs could be suitable: computer programmer (83%), artist/musician (90%), shelf stacker (85%), sheltered employment (84%), labourer (71%) or waiter/waitress (64%). However, for some highly skilled and socially demanding jobs, there was less agreement amongst respondents as to their suitability, such as doctor (42%), member of parliament or assembly (62%) and lawyer (50%), although many felt that these may be suitable only for high functioning individuals with autism.
• To find out if businesses would have to worry about customer relations if they employed someone with autism, a supermarket was given as an example of a business that is frequently used by everyone. 12% of respondents said that they would be more likely to shop in a supermarket that employs someone with autism, while 86% said that if a supermarket employed someone with autism, it would make no difference to them. Less than 1% of people said that they would be less likely to shop in a supermarket that employs someone with autism.
• Most respondents said that they would feel comfortable if an adult with autism moved in next door on their own (83%), married a close relative (80%), or was a work colleague (81%). Somewhat fewer, yet still nearly three quarters of participants, would be comfortable if someone with autism was appointed as their boss (71%). These figures were even higher when the same question was asked about individuals with high functioning autism.
• In terms of public perception, only half of the participants were of the opinion that drug treatments are effective, while the other half of respondents either disagreed, were neutral or unsure.
• In previous research, parents and caregivers in NI and in the Republic of Ireland have expressed the need for behaviour analysis based interventions for their children in the future. In line with this, participants supported behavioural interventions, with 77% agreeing or strongly agreeing that behavioural interventions are effective.
• Although there is no scientific evidence of effectiveness of eclectic interventions, this was not reflected in public opinion within NILT, which thought that other non-drug therapies and supports would be effective. In total, 74% thought that there are other non-drug related therapies or supports that are effective interventions.
• In line with the views of parents (carers) found in other recent research, very few NILT survey respondents agreed or strongly agreed (4%) with the statement 'people with autism do not need help'.
• In relation to the general public's awareness with regard to which department they felt was responsible for autism services prior to the development of a cross-departmental Autism strategy, the NILT survey asked the public about whether, in their view, health services, education services, both or neither should play a role in helping individuals with autism. Responses were equally distributed between those who thought autism was an educational issue (26%), a health issue (33%), or the involvement of both health and educational services were needed (28%). These responses indicate that the public is unclear about the role of health and education services in supporting individuals with autism and highlights a need for clearer guidance.

Conclusions

• Increasing prevalence of Autism Spectrum Disorders present challenges not only to individuals and families who are directly affected, but also for society as a whole. Services for individuals with autism are costly, but even more costly is the lack of effective service provision. Research reported here showed that the general public is well aware of autism and relatively knowledgeable about the issues faced by individuals and families affected directly. In fact, three fifths of the population has a family member with autism or know someone with autism. The research also found a general acceptance of individuals with autism in the community as evidenced in civil society and customer behaviour. The findings indicate that the general public supports the view that behavioural interventions offer the best prospect for individuals with autism. Having said this, the general public was unclear about who was responsible for the provision of these services.
• This research evidences that the campaign to raise autism awareness was successful - the public now is aware of autism. The time has come to clearly focus on the need for skills development for quality of life, inclusion, moving out of poverty and into employment through the implementation of evidence-based behavioural interventions and supported by shared responsibility across all NI Executive Departments.

Please see Briefing on the ARK Website.