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Autism, ageing and women: not invisible, just ignored

In this article, Cos Michael, a freelance consultant, writer and trainer; and an autistic speaker discusses the lack of research for older autistic women and calls upon decision makers to priotise research and provision. 

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I was pleased to be invited to run a breakout session called “Autism, the menopause and ageing (the invisible population)” at the 2015 NAS Women & Girls conference. I expected to find preparation difficult, as I knew that the very few research projects that are looking at the lives of ageing autistic people rarely differentiate between men and women. However, the extent of the problem is appalling and I hope this article demonstrates why.

In the non-autistic world, people are routinely evaluated by gender in research projects, but older autistic adults, even when recorded by gender, appear to be researched as a single cohort, defined only by our autism. The questions are the same.

Being ignored by the research community as is the case for ageing women has an impact on service provision. Quantitative and qualitative research provides the evidence base for funding streams. What adult autism services exist at present are usually embedded in local mental health or learning disability sectors, and support those, rather than autism specific needs. Most local authorities have no means of collecting meaningful statistics on the number of autistic adults in their area, so do not have a budget for service provision.

Of course, with or without learning disabilities or mental health issues, all autistic adults grow older, our health, support and social situations change, so it is important that those providing services are aware of us. 

I emailed around the autism research community for anything new – what is being researched at the moment in relation to autistic women over 40 years old, or what is being planned?  The answer seems to be – nothing. I can find no project at all that focuses on the health and wellbeing of older women, not in the past, not now, or in development. 

The lack of research also left me with the problem of how to run a session based on no evidential material. What was left was to begin building an anecdotal evidence base.  I began with my personal top 10 list of priorities:

1.    Do hormonal changes during menopause affect autism, anxiety & depression?
2.    During menopause, processing often slows down. Does it return to normal for post-menopausal autistic women?
3.    If a woman has been on anti-depressants for years, how will that affect severity of osteoporosis, post menopause? (Studies show long term use of Selective serotonin reuptake inhibitors (SSRIs)can increase risk of fractures)
4.    What reasonable adjustments can be expected in hospitals and hospices?
5.    What residential support is available for older autistic women?
6.    What would help ageing autistic women to continue living independently?
7.    How are autistic women supported at times of bereavement?
8.    Is progress being made towards female autism awareness for health and social care providers?
9.    What is being done to reduce social isolation among ageing autistic women?
10.    Who is campaigning for older autistic women? NAS? Age UK?

At the conference I put these topics to the two dozen delegates who attended the session. I think people were surprised at the complete lack of specific research regarding autistic women over 40. The Autism in Pink project was a great success, but there was a cut off age of 40 years. I suggested we need a similar project to address the second half of our lives.

We had an interesting conversation about some of the issues, including the fact that there seems to be a lack of will by funders, to invest in ageing related autism research. This, even though it is common knowledge that one in a hundred of the population is autistic and due to historical perceptions and ongoing male focussed diagnostic tools, it is unknown what proportion of these are women.

At the end of the session, I asked each delegate to note the three topics they would prioritise for research. Twenty three forms were submitted: the breakdown was: three men, twenty women, one non-binary. Seven delegates described themselves as autistic.

In addition to the topics I suggested, delegates added the following:

1.    Research the percentage of ageing autistic men and women in population
2.    What is the perception of older autistic women, by society and by care professionals?
3.    What are the key indicators for successful ageing in autism and how can this be achieved?
4.    What difference (if any) has The Care Act had for ageing women with a diagnosis of autism?
5.    What motivates older adults to seek a diagnosis of autism and is there a gender difference in reasons and in percentages receiving a diagnosis of autism?
6.    What are the emotional costs to autistic women who wanted children but due to autistic traits, never had them?
7.    How do their children leaving home affect the routines and coping strategies of autistic mothers? 
8.    How do relationships change between ageing mothers and their adult offspring?
9.    How does the loss of a sexual partner affect emotional health and quality of life for autistic women?
10.    Effects of increased social isolation due to bereavement, retirement, reduced mobility, etc.
11.    To what extent do older autistic people feel their gender expression is respected in residential care and in hospital settings?
12.    How do sensory changes associated with ageing impact on autistic sensory differences and processing / integration ability?
13.    How effectively are nutritional needs met in clinical and residential settings, for those with unusual diets or routines around eating?
14.    What are the long term consequences of a late diagnosis of autism?
15.    Do autistic women need specific symptoms management during menopause?
16.    Are autistic traits affected by menopause and do they change post menopause?
17.    How does HRT affect autistic women?
18.    How do hormonal changes affect autism in women?
19.    Degeneration of neural pathways –presentation signs may differ and early signs of dementia & Alzheimer’s may be missed
20.    Is autism recognised in dementia care, particularly as ASD is under diagnosed in elderly?
21.    The long term effects of all medications & polypharmacy
22.    What social and residential care provisions are available for older autistic women and what are the outcomes when these are not provided? 
23.    How can the best interests of ageing autistic people be protected under the MCA, if they lose caring relatives and partners?
24.    Is Parkinson’s more prevalent in autistic adults?

Several delegates also suggested provisions for ageing autistic women, which could be made immediately. We know that some autistic adults respond to pain, sensory impacts and emotional upheavals in ways that may not be familiar to medical and social care professionals, so providing these services would be a logical path to take until more specific research is instigated. Suggestions included:

1.    Access to annual health check-ups, such as breast, bowel, cervical & bone screenings, sight, dental and hearing tests, mobility assessment.
2.    Autism specific support in residential care homes, monitored under the CQC’s  “Responsive to people's needs” requirement
3.    Training in autism and ageing for all service providers and staff. 
4.    Specific training to raise awareness of possible autistic responses to bereavement and other emotional trauma.

Some items listed apply equally to men and non-binary autistic people, but even then, the impacts and outcomes may differ according to gender.

As is acknowledged, autistic women are different from men in the way our autistic traits are expressed or masked, and in the way we are diagnosed (and more likely to be misdiagnosed). Our physical health trajectories are different, because of lifestyle and the effects of hormones, childbirth and menopause. That's without touching on the impact of varied cultures, on tolerated behaviours and access to medical inclusion. 

I believe these lists suggest enough reasons why research needs to be instigated into the lives of ageing autistic women. That the lives and specific needs of ageing autistic women are utterly ignored is a disgrace to research and to social and health planners. If you agree, please circulate this and your own suggestions, to the people with the power to address what appears to be the ageism and sexism presently dominating autism research

References:

Autism in Pink
Sheu. Y, et al.  SSRI use and risk of fractures among perimenopausal women without mental disorders Inj Prev injuryprev-2014-041483Published Online First: 25 June 2015 doi:10.1136/injuryprev-2014-041483

Author: Cos Michael

Date added: 19 October 2015