A personal perspective
by Patsy Corcoran, BJF Volunteer Development Manager.
This ‘Neurodiversity Celebration Week’ is an opportunity for me to share a few personal thoughts on the power of advocacy and the potential for positive ageing with autism.
On discovering my autistic identity at the age of 54, I was forced to face and challenge the stigma surrounding autism. I rediscovered self-advocacy in its basic form, presenting my authentic self without fear.
Ageing with autism can be challenging and more research and community conversations are needed to grow our understanding of both the challenges and strengths of ageing well with autism.
Being yourself is a radical act, a quiet and subtle revolution maybe. Nurture your power, be seen, be heard, be active in your own lives and in the lives of people around you. Celebrate neurodiversity!
Autism and Advocacy
I describe myself as a lifelong advocate and explorer, with a curiosity and passion for discovering advocacy (speaking up for rights and choices) in many forms. I have worked in the field of advocacy and with communities for over 30 years. Advocacy has been in my life in one form or another: in my values; in my learning as a Peace Studies graduate; and in the compassionate nature of people in every corner of my community.
Throughout these times I had taken advocacy for granted. In recent years on discovering my autistic identity I gained a new perspective and understanding of the significance of advocacy in my own life. Initially I experienced some difficulty in confidently expressing my autistic identity both in my personal life and within my professional role. Whilst championing the rights of others, I struggled to express my needs and advocate for myself with confidence.
Have you have ever felt the need, or been encouraged to, or demanded to hide your true, authentic self, either because of the expectations of others, or to simply fit in? This was my undiscovered autistic life for many years. As a newly discovered autistic person at the age of 54, I was forced to face and challenge the negative language and stigma surrounding autism.
Words matter, words can anchor a person to their strengths or the opposite. When we describe a person only in terms of needs, we focus on their struggles. When we start from a position of compassion and respect, we ask who a person is. When we approach with curiosity, we ask what a person’s hopes and ambitions are. When we explore what resources a person has, we acknowledge the person’s challenges whilst identify their strengths and aspirations.
In gaining a better understanding of what autism means for me I could begin to reconcile the struggles of living in a neurotypical dominated environment with the remarkable aspects of living my autistic life. After a 12-month long period of anxiety-filled self-analysis, then reflection and contemplation, I rediscovered self-advocacy in its basic form, presenting my authentic self without fear.
Autism and Ageing
There is an increasing interest in the research community relating to autism and ageing. Early indications show there are likely to be large differences between autistic people in how we age, just as there are in the neurotypical population according to the National Autistic Society. Factors that are known to influence outcomes in neurotypical ageing will doubtless also influence the trajectories of ageing as an autistic person, such as: physical and psychological health; stress; living situation; financial stability and social support.
A recent interview-based study ‘How do autistic people experience ageing?’ by Autism@Manchester revealed important insights into the ways that middle to older-aged autistic adults experience ageing: ‘Participants also felt that some of their autistic characteristics and experiences were changing with age. For instance, some participants felt that they were becoming more sensitive to sensory input. Others experienced changes in their ability to mask their autistic characteristics, with some feeling more skilled at this with age, and others feeling a reduction in the energy needed to do this.’
Alongside academic research which aims to better understand autistic ageing, autistic-led conversations about ageing are happening in community spheres. The National Development Team for inclusion (NDTi) have launched ‘Ageing and Autism: A BIG conversation’ an online space for older autistic people to join conversations around what it means to be growing old as an autistic person.
Some final thoughts
It is worth remembering that although we may express our needs and exert our rights with confidence in our daily lives, we also frequently draw on the support of our trusted networks. At times we may all need to tap into more formal advocacy supports. Life events, changes related to ageing and changes in circumstances may all trigger the need for a stronger advocacy presence in our lives.
More research into ageing with autism is needed to better understand how the process of ageing can impact autistic individuals. It is vital to listen to the experiences of autistic people of all ages, in order to better understand the ageing process and ageing well with autism.
My work with the Beth Johnson Foundation ‘promoting positive ageing’ brings my own ageing journey with autism into focus. I am embracing my autistic identity, honing my advocacy skills, and presenting my authentic self at home, at work and in life. Together with my family, friends and BJF colleagues, I’m learning, sharing and pursuing positive autistic ageing.
Being yourself is a radical act, a quiet and subtle revolution maybe. Nurture your power, be seen, be heard, be active in your own lives and in the lives of people around you. Celebrate neurodiversity!
References
Autism@Manchester
https://sites.manchester.ac.uk/autism-at-manchester/2024/02/19/how-do-autistic-people-experience-ageing/ accessed 18.03.24
NDTi
https://www.ndti.org.uk/change-and-development/autism-programme/ageing-and-autism-a-big-conversation accessed 18.03.24
National Autistic Society
https://www.autism.org.uk/advice-and-guidance/professional-practice/research-ageing accessed 18.03.24