Getting a diagnosis as an adult woman
My route to diagnosis reflects that of many women like me. In seeking knowledge and understanding of our children’s needs we start to make links to our own lived experience. We come to realise that we are more like our children than we imagined. As we submerge ourselves in assessment and scrutiny, the professionals we encounter are seeking evidence of difference from the norm. It is not always easy to recognise and highlight your child’s foibles, challenges and developmental delays when they mirror your own.
This is the first of three posts which build on a talk I gave in early March at the National Autistic Society’s Professional Conference. I was asked to give a personal perspective on ‘support and diagnosis of autistic mothers of autistic children’. I had little time to prepare and this was my first time speaking in public. As part of my preparation, I co-opted a small group of autistic mothers who I chat with online to help me identify the priorities for my talk. There was no attempt at random sampling in the choosing of my sources, this was not an academic study or an attempt to present objective findings. I chose them because I like and identify with them and it was our voice I wanted to present. I cannot speak for all autistic mothers, but I can speak for some. I pitched my presentation at an audience of professionals associated with the support, assessment and diagnosis of autistic mothers and autistic children. What follows is both a summary and an elaboration of my talk.
If you’re autistic, you’re autistic
Autistic women and girls are both under-diagnosed and, often, harder to diagnose than men and boys. If girls and women are autistic at near or equal rates to men and boys it follows that there is a huge population of autistic girls and women without a diagnosis. Increasing numbers of women, like me, are being assessed following the diagnosis of our children. If we consider that most autisms have a hereditary origin, it is likely that professionals working with autistic children are encountering many undiagnosed autistic mothers. Yet, services and access to provision and support are generally not very autism-friendly. Professionals seem to operate from a premise that mothers are neurotypical. This is problematic and it is this assumption that underpins these blog posts. Autistic mothers do not become autistic if or when they receive a formal diagnosis. It is not enough to make ‘reasonable adjustments’ and accommodations only for diagnosed women.
A common factor among many late diagnosed women is how adept we become at maintaining a pretence of competency. Masking, social echolalia and the performance of social roles, become a way of life for us. We slip between social realms trying to fit, but often failing to ‘pass for normal’. We look around and see our friends, family and strangers appear to engage effortlessly in the social world, and wonder why we find it so complicated and exhausting. Some women feel obliged to try to keep up. Others, like me, shrink their world as a protective measure, able to limit exposure to the bare essentials. We develop sophisticated coping mechanisms as a way to protect the facade. We might seek solace in solitude, in our routines, special interests, obsessions and sensory comforts. It is often when these carefully constructed protective networks begin to unravel that we seek diagnosis.
Despite having always been a bit odd, and never fitting in on any meaningful level, I had never considered that there might be a reason for this. I just though I was a bit crap! It was as if I had missed the basic lessons in being human, like being expected to do algebra when you haven’t been taught how to count. I was expected to form and maintain social relationships and exist in a social world where I had flunked the first hurdle. Something was amiss. It was when I started researching autism and Asperger Syndrome as an explanation for my son’s difficulties that I began to find my answers.
Reaching ‘tipping point’
It took over five years following my son’s diagnosis for me to book an assessment. Throughout those years I juggled a number of stressful and often competing demands. I was working, albeit part-time, in the increasingly stretched and under-resourced public sector. I was studying for a postgraduate degree, upon which I had enrolled on an impulsive whim. I organised, supervised and carried out renovations on our home. Through it all I was parenting, supporting and advocating for a child showing increasingly problematic behaviours and who was close to school refusal. Whilst my understanding of myself was increasing, I was too busy, too focused on meeting my son’s needs, and having them met at school, to consider making time for me. I was also worried that if I started to talk about me, by removing the masks and the constructs, there was a risk I would crumble. It was too risky.
The space to think about me came after my son started secondary school. Suddenly, he was well supported. School were, and still are, pro-active, responsive and caring. They meet his needs without fuss or fanfare and he is thriving. I came to a halt on the renovations and completed my studies. I had time. I began to read more widely about autistic girls and women, I started chatting to similar women on an online forum. I started to identify strongly with other autistic women, but the thought of assessment was terrifying. When you have spent your lifetime believing you are faulty, never quite measuring up against the norm, the last thing you want is professional verification of that!
As seems to be fairly common among us late diagnosed women, I reached my personal ‘tipping point’ when I could no longer maintain the facade of normal. For me, major changes at work, which impacted on my need for familiarity, routine and stability, were that ‘tipping point’. Whilst on a personal level I could accept my differences and accommodate my difficulties, at work I was subject to organisational needs. Increased work stress heightened my anxiety and exacerbated my sensory responses. Lifelong sleeping problems worsened. For the first time I did not want to go to work and dreaded Monday mornings. I was exhausted all the time. I needed ‘reasonable adjustments’ to enable me to function at work. I had to do something. I needed a diagnosis.
The pursuit of assessment
Requesting assessment as an adult is a big deal and we do not request it lightly. If anything, by the time we request assessment we have usually researched to the nth degree in our typically obsessive way. We don’t request assessment until we have satisfied ourselves that we are credible. The fear of being labelled faulty or damaged, rather than autistic, and of our needs not being taken seriously, is very real.
We then have to decide which avenue to pursue to have our conclusions validated. I knew that I was not comfortable pursuing diagnosis through the NHS. My years of masking, coupled with an apparent high level of ‘functioning’, and an inability to ask for help, meant that persuading my GP to refer me was too anxiety provoking. If I even got past that hurdle, I would then face a succession of gatekeepers in the mental health team. I was not prepared to enter a process out of my control, and where I was not certain that the clinicians were adequately experienced or knowledgeable to recognise the nuance and subtlety of the female presentation of autism. I had heard stories of women being refused referral due to eye contact with the GP, or because they had no family members who could remember early childhood development. I needed an alternative, where I could maintain control and choice, and most of all, someone who I would feel comfortable with and who I could trust and respect.
I chose to be assessed through a small charity experienced in assessing and supporting people with Asperger Syndrome, who had been recommended to me online. Even better, I had seen my assessor on television and liked what I saw! I was able to book an appointment for a time which suited me, and was seeing someone who felt familiar, I had the reins. Knowing who I was seeing, what her qualifications and experience were, booking an appointment which suited me and having time to prepare made a big difference. Many women find this part of the process highly anxiety-provoking. When you have worked so hard to hold yourself together for so long, it is not easy to submit yourself to a process. We often worry that assessors are trying to trick us, to catch us out, as if we are performing autism, rather than performing normal.
In the discussions I have had online, nearly every woman who has been assessed has received a diagnosis of an autism spectrum disorder. Clinicians carrying out assessments need to consider how they can make the process itself supportive of autistic women. Us autistic women were autistic before our diagnoses, our needs as autistic women don’t start when we get a diagnosis, those needs were pre-existing. The internet means we read about and share our experiences, and often it is the bad experiences of others that we remember and which feed our anxiety. I was lucky. My assessment was held in a well designed and carefully arranged ‘sensory room’, with blackout blinds, bubble tubes and calming lighting effects, there were squishy sofas, nice tissues for my inevitable tears, and cups of tea. I think I recall being offered a crumpet!
Assessment is hard, it means opening up and being true, something many of us have resisted throughout our lives. It can also be liberating. As I spoke, and was prompted, questioned and challenged, I started to feel understood. I cannot find the words to describe my sense of relief when my assessor declared that, in her professional opinion, I met the profile of a woman with Asperger Syndrome.
Postscript: following my initial assessment I ‘upgraded’ and received a full clinical diagnosis of Autism Spectrum Disorder. While the initial assessment was sufficient for self-awareness and to secure me support and adjustments at work, it never felt quite complete.