Getting On? Growing Older With Autism

16 July 2013

Anna Boehm, Policy and Parliamentary Officer for the National Autistic Society writes about a new report Getting On? which highlights the need to improve autism diagnosis rates amongst older people.Capture

Say the word “autism” and most people will picture a child. But of course this child will grow up and, eventually, reach older age. The particular challenges facing people with autism at this stage in life are the subject of the National Autistic Society’s new report, Getting On? Growing older with autism.

Autism is a life-long condition. However, the needs of older people with autism have historically been overlooked. Take the state of research: amongst the wealth of studies on autism, there are almost none on how the condition develops in or interacts with older age.

The latest figures reveal that just over one in a hundred people have autism yet there appears to be under-diagnosis amongst older age groups.

Autism was only first identified as a condition in the 1940s so the first generation to be diagnosed in childhood are only now moving into older age. Inevitably, it took some time for knowledge of the condition to become embedded in medical practice. Autism was only officially entered in international diagnostic manuals in 1980 and Asperger syndrome did not enter the classification system until 1994.

As a result, many older people across the spectrum have missed out on diagnosis entirely or have been diagnosed relatively late in life – 71% of people over 55 responding to an NAS survey had received their diagnosis in the past decade.

People with autism and their families report that awareness of autism is low amongst professionals working with older people and this, along with the cultural association of autism and children, may contribute to low rates of diagnosis amongst older people.

In addition, healthcare settings can be particularly difficult for people with autism. Sensory difficulties – over and under sensitivity to things like light, sound and pain –frequently accompany autism. This, combined with difficulties in communicating with healthcare professionals, can make hospitals and GP surgeries exceedingly difficult to deal with. Of course, this becomes an increasingly pressing issue as people move into older age.

But what to do about these issues?

The Getting On? report makes a number of recommendations. Key amongst these is the need to increase autism awareness amongst healthcare professionals working in age-related specialisms to help increase diagnosis rates and ensure professionals are equipped to make the reasonable adjustments necessary for people with autism to access appropriate healthcare. Research into autism and older age is also vital for improving our understanding. BGS members will be central in taking this forward.

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