When perimenopause hit, it triggered a perfect storm, which led to me discovering I was Autistic, aged 58.
After my autism diagnosis, I was cast adrift with some leaflets and a reading list. Over the next six years, I learned how to thrive Autistically. Getting involved in research has been an important part of this journey.
I am finally stepping into who I fully am (look out for our paper which will be published in the International Journal of Disability and Social Justice soon).
Bridging the Silos
For the last three years I have been a Community Research Associate on the international Bridging the Silos: Autistic Menopause Study. Involvement in research has been enlightening and cathartic.
In the course of this co-produced study we have collected rich qualitative data through interviews, focus groups, creative submissions, and open questions included in a survey. We then analysed the qualitative data using reflexive thematic analysis.
Many of our participants described similar struggles, even though their menopausal journeys were highly individual in terms of when they started, how long they lasted, and what was involved. Accessing support was often challenging because services were fragmented, difficult to navigate, and unadapted for Autistic people’s needs.
Individual experiences of menopause were shaped by multiple factors: co-existing health issues and disabilities, relationships, employment, caring responsibilities, trauma, socioeconomic status, and the availability of services locally. Most people felt despondent about the lack of support available to them, while a few preferred managing things independently.
Caught off guard
Until very recently researchers have neglected issues which predominantly affect Autistic women, leading a participant in one of the earliest studies of Autistic menopause to comment that autism research is “all about the blokes and the kids".
Menopause has been similarly neglected, and although it is now attracting considerable media attention, much of the available information lacks a solid evidence-base, is influenced by commercial interests, and targets affluent white women.
Many of the Autistic participants in our study described not knowing what to expect or being caught off guard when perimenopause affected them in unanticipated ways. A few participants said they had transitioned through menopause relatively easily while most described struggling, sometimes for years (our paper on this will be published in Neurodiversity soon).
Dismissed and disbelieved
Some of our participants described being dismissed by clinicians when they tried to explain their difficulties. Not being believed after desperately seeking help was horribly invalidating. A few participants avoided contact with services altogether because they had prior negative experiences.
Even if participants managed to get treatment for perimenopausal symptoms, a lack of follow up contact often left them feeling abandoned and unsupported. Sometimes things spiralled out of control. Several of the accounts were deeply disturbing, indicating that a lack of understanding and support could put people at considerable risk.
Some participants described having masked or camouflaged their Autistic characteristics up until perimenopause, when maintaining a veneer of social conformity became too difficult. Pressures they were already experiencing, combined with the additional disruption of menopause, made this life stage a tipping point for autism diagnosis.
During perimenopause I was arrested and spent a night in police custody after an intense meltdown. As an ex-police officer, once I got over the initial shock, I knew how to manage the situation. Incidents like this could be prevented through earlier intervention for menopausal emotional dysregulation, and timely recognition and diagnosis of autism rather than a long wait to be assessed.
Those of us who are diagnosed Autistic often experience considerable stigma, prejudice, and discrimination. If we attempt to blend in, by masking, we expend a huge amount of energy maintaining the illusion that we are just like everyone else, increasing the risk of burnout. Women are generally under more social pressure to ‘mask’ Autistic traits than men which can easily damage their mental health. Individuals who belong to more than one minoritised group face multiple marginalisation which has an amplified effect.
Learning more about autism after my own diagnosis enabled me to reframe the challenges I had faced. I realised that many misunderstandings had occurred because people with diverse neurotypes tend to experience things differently and misinterpret each other (the ‘double empathy problem’). Communication difficulties are a mutual responsibility, but Autistic people tend to be held accountable simply because we are a neurominority. Victimization of Autistic people is a significant problem in every age group and social context.
Being diagnosed or self-identifying as Autistic can help an individual to find peer support, access relevant information, and reframe negative past experiences. But it’s difficult to develop a positive sense of identity if other people view Autistic traits as deficits. Evidence-based identity-affirming treatment for neurodivergence should be standard practice in mental health services. Focusing on strengths supports the well-being of Autistic people.
Resolving past trauma
Like many late diagnosed Autistic people, I was burdened with trauma by the time I reached midlife. Bereavement by suicide, and separation from my children after my marriage breakdown created considerable grief and guilt. Bullying, exploitation, and abuse had also traumatised me. I avoided looking over my shoulder, sensing that the past would catch up with me one day.
When I sought psychological help post autism diagnosis I discovered that complex issues could not be resolved in a few ‘IAPT’ sessions, and longer-term therapy was unavailable via the Community Mental Health Team (CMHT). All I got was misdiagnosis with Emotionally Unstable Personality Disorder (EUPD) which triggered despair because I knew how difficult it would be to shake off this label. In fact, my EUPD diagnosis turned out to be an “admin error”. This was a careless and dangerous mistake for a mental health service to make given the heightened risk of suicidality for Autistic adults.
Eventually I paid to see an experienced, qualified, Autistic therapist. In this psychologically safe relationship, I addressed past trauma and learned how to flourish by recognising legitimate Autistic needs, developing self-compassion, and setting healthy boundaries. Once again, privilege saved me. The opportunity to have evidence-based therapy post autism diagnosis should be open to everyone. Late autism diagnosis is often experienced as an existential crisis; being given a few leaflets to read isn’t sufficient.
Looking to the future
The Bridging the Silos research study suggests that menopause may involve additional challenges for Autistic people, but this finding is tentative. Our study may have been affected by self-selection bias (individuals who had experienced significant difficulties may have been more likely to participate). A follow-on study comparing menopause in Autistic and neurotypical people hasn’t reported yet.
Autism affirmative attitudes are gradually taking hold, and Autistic people’s priorities are beginning to influence the research agenda. A major study of Autism from Menstruation to Menopause is underway, in which participants are being contacted several times over a period of years to get a better understanding of their experiences. A multiplicity of factors which contribute to inequity during menopause are beginning to be addressed: gender, sexual orientation, age, socioeconomic status, social class, disability, race/ethnicity, religion/spirituality, geography, war/political conflict, and displacement.
We are discovering much more about Autistic ageing, cognition, health and quality of life and developing a more nuanced position on menopause which is usually but not always experienced in mid to later life. Increasingly, menopause is being seen as an opportunity for self-fulfilment and freedom; even though some people experience negative outcomes this life stage can often be something to celebrate.
As diverse menopause is better understood, support is becoming more accessible and inclusive. We are breaking down barriers and bridging the silos. Equity is within reach.