Adult and elder life

The vast majority of ASD research regarding identification and diagnosis, treatment and care has focused on children. Like persons with other juvenile-onset chronic health conditions, however, many persons with autism face challenges throughout the lifespan and most will rely on support from their families and communities throughout life.

Further, many persons with autism may not be diagnosed until adulthood and their needs may not be well understood by adult care providers unfamiliar with autism. Due to the limited research attention on adults with autism, however, little is known of the long term outcomes in adulthood, what factors influence the outcome, and best practices for care and support of adults with autism and their families to promote good outcomes.

The need to improve our knowledge of autism in adulthood is especially critical since the number of diagnosed adults with autism is rising in the wake of the dramatic increases since the 1990s in diagnosis of autism in children.

Initiatives describing quality standards for health and social services for adults with ASD and associated metrics for evaluation and profiling the needs and gaps in services for adults with autism have been recently published. Common general themes across these and other reports on the needs of adults with autism include: importance of coordinated care through time; importance of ASD-specific training and competencies in persons at all organizational levels involved in care of autistic adults; importance of local strategic plans and a designated local responsible lead over provision of adult autistic services; inclusion of autistic persons and families in decision-making and processes; and transparent processes for identification, diagnosis and assessment of needs.

To identify and address the knowledge gaps by developing an EU perspective on healthy living of people with ASD, including the creation of a comprehensive framework to improve adult with autism treatment and care and to improve the quality of life of adult individuals and families affected by ASD are highly relevance and necessary.

"Pallasso"

Painting by Elbio Fernández Sara. Person diagnosed of autism.

References

  1. Howlin P. (2013) Social disadvantage and exclusion: adults with autism lag far behind in employment prospects. J Am Acad Child Adolesc Psychiatry. 52(9):897-9. doi:10.1016/j.jaac.2013.06.010.

  2. Magiati I, Tay XW, Howlin P.(2014) Cognitive, language, social and behavioural outcomes in adults with autism spectrum disorders: a systematic review of longitudinal follow-up studies in adulthood. Clin Psychol Rev. Feb;34(1):73-86. doi: 10.1016/j.cpr.2013.11.002.

  3. National Institute for Health and Care Excellence (2014). Autism. NICE quality standard 51. https://www.nice.org.uk/guidance/qs51

  4. National Institute for Health and Care Excellence (2012). Autism: recognition, referral, diagnosis and management of adults on the autism spectrum. http://www.nice.org.uk/guidance/cg142

  5. Department of Health. Think autism: updating the 2010 adult autism strategy. https://www.gov.uk/government/publications/think-autism-an-update-to-the-government-adult-autism-strategy

  6. Kendall T, Megnin-Viggars O, Gould N, Taylor C, Burt LR, Baird G; Guideline Development Group. (2013) Management of autism in children and young people: summary of NICE and SCIE guidance BMJ. doi: 10.1136/bmj.f486523985309

  7. National Audit Office (2009). Supporting people with autism through adulthood. http://www.nao.org.uk/wp-content/uploads/2009/06/Autism_Tech_Paper.pdf

  8. Autism Europe (2013). Towards a better quality of life: The rights of ageing people with Autism. http://www.autismeurope.org/files/files/ageing-report-en-sml.pdf.