Review: ‘The Duck’

Last night I went to see the first performance of ‘The Duck’, a one-woman play about autism written by Rhi Lloyd-Williams and performed by Lucy Theobald. Flyers described the play as a ‘glimpse beneath the surface of one autistic woman’s world’ which is, of course, an area of great personal and academic interest to me. I ignored the fact that I don’t like theatre performances, with all that proximity to people and enforced sitting still, and went anyway.

I hadn’t planned to write a review and didn’t take notes, but it really was very good and warrants more than a couple of tweets.

Lucy Theobald somehow managed, through Rhi’s incise writing and expert ‘how to be autistic’ coaching, to present something quite different to the composite and generic autistic characters we are so used to seeing. This wasn’t an autistic character developed to showcase autism, the sort of character we often see who shows us their autism through stereotypes and tropes. This was a complex and unique autistic characterisation, literally the ‘one autistic woman’ from the flyer, not a mish-mash creation developed to shoehorn in as much visible autism as possible.

Because autism isn’t really something we can see, autism is very often what people don’t see, particularly in autistic people like The Duck’s protagonist, who have learned to mask and mimic. Somehow, with only a bentwood chair, a bedsheet, some paper and pens, and in less than an hour, Lucy managed to perform not only a life story, but also presented an introduction to some of the key issues of concern to many autistic people.

A recurring theme throughout was the double-empathy problem, how non-autistics have just as much trouble understanding and empathising with autistics as the other way round. Issues of language, identity, sensory and communication differences, labels, diagnosis and the notion of the spectrum were covered. With luck the audience will have been sufficiently challenged and interested to want to go and find out more, as many questions were raised to challenge popular notions of what autism is and isn’t.

My only minor criticisms are that at times the narrative appeared to assume a non-autistic audience, and that a request for flappause (a silent applause of raised waving hands which originated in the Deaf community and is increasingly used at autistic events) instead of the very loud clapping and whooping would have provided an opportunity to highlight the impact of normative social conventions in a very real way.

This was a fast-paced, frenetic, funny, intelligent, occasionally sad, incredibly engaging and informative performance. This is the sort of autistic performance that I want to see, and that I want non-autistics to see.

Massive well done and thank you to Autact Theatre Company for showing what good autistic representation looks like. You’ve set yourself and others a high standard, it will be interesting to see what follows.

Guest post: The quest for equilibrium

image shows an out of focus woodland background, with a log and rope bridge in focus in the foreground, overlaid with ‘the quest for equilibrium’ in white text 

In this guest post, Katharine Manning writes about diagnosis, disclosure and managing the demands of everyday life, including her return to work.

It’s over 18 months now since I obtained my diagnosis. That has given me some peace – at last – and a basis for making informed choices about my life including how to rearrange it going forward. After spending several months free of work I finally seemed to get my autistic existence into some kind of balance, after quite a few years of feeling out of kilter but not understanding why. The question was though, would it withstand starting work again?

During my time off I’d found ways to head off or quell the autistic ‘overdrive’ that many others experience. But life was gentle, demands were few and time was plentiful. I got properly fit again by taking up running, one of the last things I thought I’d ever want to do but it helped lift me out of a quite unexpected but severe depression. I watched a lot of TV snooker: not everyone’s cup of tea but I find it good for my soul. It also reminds me of quiet, secure, companionable times spent in the company of my now-late grandparents. My marriage is in a better place, no-one in the family had any major health worries after a run of bad fortune and the ‘youths’ (too old now to be described as children) seem happy in their lives. I’d made quite a long sequence of disclosures about my diagnosis; in fact I got quite a good script going which overcame the difficulties of starting my explanation from scratch each time. Most of these went OK and even though a couple didn’t, I mostly managed not to let those bother me. The overall message and developing my altered identity were heading in the right direction.

Sometimes I find I’ve run out of steam for further disclosures, or just don’t make them. With two long-established friends in particular there was an opportunity but I didn’t take it. There was also a newer friendship where I just didn’t want to. It’s good sometimes just to try and ‘pass’ and let people make of me what they will. In fact I’ve recently made my first couple of new friends in many years so maybe have somehow relaxed into myself. One is (probably) autistic herself and there is a strange joy in finding someone from your own tribe. Oddly enough what has also helped is unlearning some of my self-sufficiency, by engaging more with other people through asking them for and offering help and things.

I had hoped that an extended spell free from work would bring about a fairly thorough ‘restoration’. To a limited extent it did but by no means amounting to ‘recovery’. It brought home to me that my functional deficits cut across all domains of my life. Being at home can be as challenging as being at work, just in different ways. About that time I read a post from the Autism Women’s Network about autistic burnout, which seemed to describe my situation perfectly. I felt it also explained why my AS had become more pronounced during the course of my life, which was puzzling me.

So, what conclusion to draw about what to do about work in future? I decided that the answer is to persist … but make it fit more manageably within my life overall. The idea of ‘managing spoons’ is very relevant to this, deciding how best to allocate my limited energy and personal resources. So I made a full and honest disclosure of what my AS means in a work context and entered into a problem-solving dialogue with my prospective line manager about the job I’d applied for and been offered (he received it well). I’ve halved my previous work hours and though the office is quite a long journey from home I’ve decided to try something new, staying away overnight which gives me quiet time and space to regroup mostly free of family pressures.

On days when I cope well, especially in the work sphere, I do still question whether I ‘merit’ this diagnosis. But then come days when I definitely don’t cope well and I’m reminded of – and eternally grateful for – the value of my diagnosis in understanding and managing my life. I recognise also that my ability to cope at work is a hard-earned consequence of doing just that: managing my life as well as others’ expectations.

I’m still not sure to what extent it might be possible for me to ‘recover’ my mental health which has become characterised by chronic anxiety mixed with some recurring depression. I find myself feeling unreasonably agitated when train carriages aren’t as quiet as libraries: not because I think other people shouldn’t talk but because my brain can’t hear conversations without processing them. ‘Brain fog’ or cognitive clouding is becoming a major issue and my ability to cope with that may ultimately determine whether it is realistic for me to continue in work longer term. Decisions about everyday life are also finely balanced: for instance, managing social anxiety by avoiding contact with people risks getting out of practice and further losing confidence. How much worse might AS get for me, particularly as I age? Might anxiety, irritability and isolation win the day or will a sense of humour, patience and self-forgiveness carry me over the further rough ground ahead?

What’s certain is the value of my support team. As well as family and friends, I’ve been lucky enough to have a very helpful GP who is always willing to listen, understand and research the issues I bring her. I’ve also felt well served by my workplace occupational health department and union representative. I’m fortunate that both my local NHS mental health services trust and autism service provider are progressive and in particular through the latter I found an extremely good-hearted specialist therapist who offers support to people with AS on both an individual and group basis. Finally, one of our local universities is doing some highly relevant research on managing anxiety symptoms in people with autism. By contributing to that I’ve been able to further scientific understanding as well as strengthening my own knowledge of the condition.

shit I learned at #speakersday

I don’t usually swear in posts, but I do swear a lot when I speak, and I am writing this while I recover from a long drive, a couple of nights away from home and lots and lots of peopling, meaning my ability to put words together is a bit challenged, so I need to make full use of whatever vocabulary I can find. Yesterday I attended the National Autistic Society’s ‘Public speaking for autistic people’ course in Wrexham, 210 miles from home. It was brilliant and illuminating and I learned shitloads of stuff.

I learned that I really really like driving on motorways, especially if I imagine that I am appearing in a Top Gear challenge. My friend @PdaSoapbox was travelling by train from the opposite direction, and we supported and encouraged each other by text throughout the journey (I only texted when I stopped for breaks, not when driving). She was largely unaware that she was part of my imaginary challenge, and I don’t think she’s a Top Gear fan… but it made me laugh to myself as I drove, because, contrary to the stereotypes, us autistic people can imagine and we do do humour.

I learned that being drawn towards the written word is a pain in the arse when signs are bilingual. If there is written information within my field of vision I have to read it. It doesn’t matter what it is, I have to know what it says. This is fine with English language words, which I can scan and process quickly, but less so with Welsh. I have nothing against Wales or the Welsh language, but bilingual signs mean my brain tries to make sense of all the words, including the Welsh words, which I don’t have a hope in hell of decoding, but my brain has to give it a go just in case. I did not miss a turn until I crossed the border 😉

I learned that being among autistic women is perhaps the most empowering and comfortable place in the world to be. I have never felt so normal, so like other people, it was magical. Meeting people I’ve only ever interacted with on the internet in real life was like meeting up with the long lost friends I never knew I had.

I learned that friendships made online can be as strong, meaningful and real, and engender the same loyalties as those made in the ‘real world’.

I learned that I’m not the shy introvert I had always assumed myself to be. I haven’t been avoiding social interaction for most of a lifetime because I didn’t want to or didn’t need it. I’ve avoided it because it’s so hard when you don’t know and can’t follow the social rules of the majority neurotype. I actually love just chatting with people, singly and in groups, and yesterday I could do that without the complicated interchanges usually required. There were no raised eyebrows and affected manners, as people just did what they needed to do. Stripped bare of the tacit and often arbitrary rules of the typical social world, interaction became easy and natural. People and topics ebbed and flowed.

I learned that I am not able to easily switch between roles. As part of the day we had the opportunity to perform a brief presentation and receive feedback. I had not prepared one of my own as I knew it would make me more anxious on top of all the other anxieties. It’s not uncommon for me to make a decision about something without knowing why and then having my ‘Oh fuck, that’s why’ lightbulb moment later on. Partway through the morning yesterday I realised that my trepidation about doing a presentation was because of this struggle with switching between roles. To engage with the training and learn well, I needed to be in ‘listening and learning’ mode. To do a presentation I would need to be in ‘controlled and performing’ mode. There wasn’t time to switch roles and I knew as soon as the afternoon session began that I had made the right call, I was in no place to perform ‘speaker role’.

I learned more than I could have hoped to about public speaking. Sarah Hendrickx and the NAS training team should be commended for providing such a thoughtful and perfectly executed event.

Throughout my professional life I attended a lot of training, this may have been the first time I haven’t wanted a training day to end.

Thank you to everyone involved and everyone who attended.

What a day 🙂

Assessment denied

IMG_1711.PNG
[image shows the text ‘Assessment Denied’ on a brick wall]

Gatekeepers, hurdles and ignorance on the path to diagnosis

Despite increased awareness of autism in women, there are still too many cases of women being unable to access or denied assessment. Whilst the average waiting list time for adults from referral to diagnosis in the UK is around two years, many women are not even getting on the waiting lists as their access is scuppered by gatekeepers, hurdles and ignorance.

The NICE Guidance for Autism in adults provides a set of principles to identify who should be referred for assessment and best practice guidance for the assessment and diagnostic process. Very simply, if an adult might be autistic they should be referred for assessment. Local health authorities are supposed to provide clear diagnostic pathways to carry out assessments, staffed by trained, competent professionals. Unfortunately, the postcode lottery of the NHS means that whilst some areas have fantastic services, others are fragmented, inaccessible or non-existent.

Gatekeepers

When I first started seriously considering assessment for myself I looked into my local provision and researched the experiences of others in my area. I quickly concluded that the cumbersome set-up here would require me to get past a series of gatekeepers and I did not feel strong enough to do that. At the point where I most needed diagnosis I was least able to advocate for myself.

For me, these gatekeepers would have started with my GP and progressed through the filtering layers of local mental health services. I would have had to ‘state my case’ repeatedly to a series of people with the power to let me through to the next level, until eventually, if I was lucky, I would reach the autism specialists. The prevailing ‘deficit model of autism’ would have meant me needing to repeatedly explain my failings and inadequacies to new people. Over and over I would need to elaborate on my deficiencies as a human. I just couldn’t face it.

The fundamental problem with this model is that the gatekeepers are not autism specialists, they often having minimal training and little experience of autism. If they are relying on the prevailing stereotypes of autism, and I have met many professionals who do, they are unlikely to see the autism in a superficially capable autistic woman.

Like me, many women who seek diagnosis as an adult have reached a point in their lives where demands have exceeded capacity. We are often fragile and vulnerable at the point where we ask for help. Many women, when told by a gatekeeping professional that they do not meet the criteria for assessment (bearing in mind that this criteria is often outdated and sometimes unfounded) give up. Often these women have far more knowledge and awareness of autism than the professionals tasked with gatekeeping.

Gatekeepers need to be be equipped with the knowledge, skills and tools to ensure that those in need of assessment get assessed.

Hurdles

Once past the gatekeepers the path to assessment may still be littered with hurdles. A common hurdle is when diagnostic services will not diagnose without the involvement of a family member who can provide information about childhood development. The reason given is that for a credible diagnosis there needs to be evidence of autism being present in early childhood. This particular hurdle is problematic in several ways.

Many adults seeking assessment do not want to tell their families of their suspicions. This might be because they don’t want to worry their families, or they feel that their family would be unsupportive, or because of difficult family relationships.

As we get older the pool of people who might be in a position to verify our early development gets smaller. Memories become faded and unreliable. Our loved ones might struggle to remember long ago details or may feel disloyal recounting detail of our struggles and problems.

Some adults lose contact with wider family members. Our social and communication difficulties might mean we struggle to maintain relationships with our families. We might have cut off, or been cut off by, family members who we find hard to maintain relationships with.

Autism is always a ‘best guess’ differential diagnosis, one made on a balance of probabilities. If evidence from adulthood, through self report, clinical presentation or scores from recognised diagnostic tools, is indicative of autism, it is my opinion that diagnosis should be given.

Lisa Sanders’ 2010 book ‘Diagnosis: Dispatches from the Frontlines of Medical Mysteries’ (London: Icon Books) describes the centrality of ‘patient story’, how 70-90% of medical diagnoses are made on patient account alone. If this is the case across medicine, it begs the question of why autism diagnosis is held to a different standard. How can a patient’s account be enough for most of medicine, but not for autism?

Autism diagnosis should not be withheld in the absence of family verification. Clinicians need to have faith in their patients, themselves and the tools they use.

Ignorance

Having spent a long time exploring and working myself up to request assessment, I became increasingly aware that many women were being denied access to assessments because they were considered too capable. It seems that for some gatekeepers, clinicians and assessment teams, being educated, having a job, a mortgage, being married or in a stable relationship and being a parent, means you can’t be autistic.

These clinicians seems to have missed the part in the DSM5 which states that ‘symptoms’ “…may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life”. I knew that, superficially, I was doing great. I have a home, a family, an array of academic and professional qualifications, and a job requiring adaptable and nuanced communication across a very broad range of clients and needs. How could I persuade the gatekeepers that I was, in fact, about to crumple?

I have written before about masking and performing normal. Masking can be an active choice but is often more subconscious, a product of our socialisation and experience. Some of our masks may start as choices but over time they become almost automated. Without thinking about it our subconscious applies the correct mask enabling us to adopt the roles we need to manage the spheres of our lives.

Dig a bit deeper beyond the surface and very often you’ll find a hoard of sophisticated coping strategies. We have no choice but to develop these coping strategies to help us lead our lives as best we can. Masking is often a big part of this. We often spend so much time on managing our coping strategies that we have no time left for ordinary life. This is where you find the hidden autism. And when you look deeper, it’s often not very hidden at all, you just weren’t looking properly.

Denying assessment to people who appear too successful to be autistic implies that autistic people cannot be successful. This is a very worrying assumption.

It is also wrong.

edit: I was lucky to be able to fund a private assessment through a charity. Many people are not in a position to do this. That is why I wrote this post.

Performing normal

I am beginning to think that us late diagnosed autistic adults deserve Oscars and BAFTAs for our performances. We study our roles and learn our parts with great dedication. We are method acting every day. We knock spots off Daniel Day-Lewis. We immerse ourselves in the worlds of those we seek to emulate. We often maintain the role every waking hour. We mostly do it without even noticing. We work hard to perform normal. We are unconsciously competent.

Until we can’t do it any more.

It starts in childhood and probably never really ends. Even when we have our autistic epiphany it’s a hard habit to break. It can be a useful skill if we use it wisely. It’s like an ultimate special talent. At the height of our performance career we slip chameleon-like among social worlds, studying our characters, always studying, trying to be better actors, better characters.

But over-use comes with a price. For us, it isn’t a role which we get to leave at the end of the contract. This is our life and performing normal is exhausting. Maintaining the roles we construct, often subconsciously, very often leads to our downfall. We risk losing ourselves in our performance.

If we are lucky enough to realise we are autistic, and we have sufficient resilience, confidence and support, we can free ourselves from the performance. This is where I am now. I am trying to drop the performance and be me. I have become more conscious of the roles I perform and can sense the changes from one role to another. It is unsettling and disconcerting to acknowledge the process as I shift through the social realms I inhabit and encounter. I have moments when I feel like I’m in a body-swap movie, like I am being inhabited by an interchangeable set of personalities and competencies.

Training for these roles starts from birth, we are continually measured against a set of criteria based on population averages. We are pushed to meet typical developmental milestones and encouraged to perform to the audience. We are applauded for using speech, for playing nicely, for sharing, for good manners and for following the rules. Some of us find these things harder but we learn quickly what is expected and we do our best. Even when we are teeny, we seek approval. We learn that compliance is good, challenging is bad. We are being shaped to fit the norms.

Girls are almost certainly more heavily burdened with neurotypical social, emotional and development expectations. School is where we undertake our apprenticeship. It is in school where we find our first role models, the happy social butterflies who make it all look so easy, so effortless. We try so hard to be like them. We might copy their interests, their style, their mannerisms as we desperately try to fit in, to be normal.

Some are lucky and find a niche in adulthood where they can bloom, able to drop the performance. Many start to experience deteriorating mental health. Some, like me, muddle along, performing normal and wondering why we find life so hard, and why are we so exhausted by normal when everyone else seems fine.

Autistic realisation brings new insight. As well as being more aware that I am performing I am also more aware and, perhaps more consciously, planning and preparing for every possible encounter. Every possible social encounter has to be considered and planned for. I draw on my history, trying to learn from my mistakes. I wish I could forget all the mistakes.

I go to bed planning the next day and I wake revising and rehearsing my plans. As I drive to work I am reminding myself of the potential subject matter I might encounter and ways I can show an interest in people’s lives, because that’s normal. Has anyone been on holiday? How was the night out? Is an ailment better? How was the move? I don’t need to remember what I need to do at work as that is on my list. But I also have to maintain a virtual list of things that I should remember about people’s lives. I am mostly not interested, but I do it anyway. Performing normal means being interested in other people and the trivialities of life.

Life is a long list of encounters, each with different expectations, some with very subtle differences. Lots of rules. Lots of roles.

In a typical day at work I have to adjust to the different social expectations of my immediate colleagues, the ones I share workspace with, people I know and bump into around the building, people I don’t know who I bump into and people I don’t know who invade our workspace. I need to be able to make requests of support staff and defer to senior staff. I have to adjust for client needs, though somehow that is easier as I am in my professional role and that’s my favourite work role.

Outside of work I have different roles to perform when thanking the postman, bumping into neighbours, attending school and medical appointments and meetings. Social interaction with friends requires even more planning as I fear getting it wrong and losing friends. I have lost many wonderful friends over the years when my performance was clearly not up to scratch.

My autistic realisation has helped me be more honest both with myself and my friends. I have disclosed my autism to my immediate colleagues, and am getting better at dropping the performance and being honest about what I need. I have noticed that when I drop my performance I am more animated, I gesticulate and I am just a little bit less inhibited. I am loosening up and freeing myself.

My son’s current favourite insult is to call me ‘normal’. I am normal. Normal for me.

Hiding in plain sight

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.

Achieving self-awareness

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.

Diagnosis

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.