The female profile of autism – Looking for answers

After several months of research and analysis, I came to the conclusion that I didn't present the classic autistic profile, albeit that based on male criteria. Some characteristics matched me, but not all. At the same time, I couldn't eliminate autism as a hypothesis. My investigations continued. I noticed several similarities between the specifics of my development and those described by autistic girls and women. I also recognized some functioning in myself similar to that seen when giftedness is mixed into the picture. At the age of 20, I had, in fact, been admitted to Mensa on the basis of an IQ test, the results of which were in the 99th centile (an average IQ is around the 50th centile).

My investigations were therefore at the meeting point of three precise parameters – in other words, the combination of 'adult', 'female' and 'giftedness'. Jonas [an invented forename for psychologist #1, who brought me the subject of autism] let me know that he couldn't take the reflection further, given that he wasn't an autism specialist. After sorting through my reading, I felt the need to go and look for more formal information. 

To detect autistic functioning in an adult, you have to be prepared look below the surface. This is because compensation and camouflaging strategies may well have become embedded over time. The DSM-5 recognizes that the screening of girls presents its own set of challenges and may go unrecognized, on page 57 of its 2013 edition. As regards giftedness, specialists like Professor Tony Attwood (2008, pp.40, 53) and Laurent Mottron (interview in Barette 2017) agree that people with an above-average intellectual aptitude can be more difficult to diagnose, given their greater ability to disguise their autistic traits.

Psychiatrists and psychologists don't always have the knowledge or tools to assess autism that doesn't fall into the classic criteria.

Setbacks and delays

Having read in several places that it is preferable to contact a specialist with expertise in autistic adults and women for assessment, I carried out some research to discover what my options were. After a few tries, I identified a specialized group that had a good knowledge of these presentations. I had done my reading, informed myself, discussed it with Jonas my psychologist, weighed up the pros and cons, asked for recommendations for autism associations, and discussed it with my partner. In The Complete Guide to Asperger's Syndrome (2008), Professor Attwood suggests asking someone who has known you for a long time to complete the Autism Spectrum Quotient (AQ) test in order to get an objective opinion. My partner had a good laugh reading through the little sentences. His results came out similar to mine. 

In short, I had done my homework. All that was missing now was a medical referral to get an appointment through the healthcare system with the professional who had been recommended to me. In spring 2012, I wanted to broach the subject with the psychiatrist I had been consulting with alongside my psychotherapy. And that's when it all became more complicated.

Shortly before I requested a referral to psychiatrist #1, Jonas had had a discussion with them and informed me that the latter was immediately ruling out a diagnosis of autism, given that I had good abilities for introspection. I didn't understand this argument, since I had read any number of autobiographies by autistic people giving a nuanced account of their inner life. At the same time, learning that my psychiatrist didn't seem open to exploring the idea made me apprehensive. I worried that I wouldn't make myself understood, as had happened in the past.

When I went to the appointment, my anxiety levels were quite high. Knowing that I struggle to communicate my thoughts when I am feeling very stressed, I'd brought some notes along. As soon as I started reading them, my psychiatrist stopped me. They told me it was pointless to discuss this further, since an autistic person wouldn't have shown any anxiety broaching the subject. And yet at this time I was part of a discussion forum on Asperger's syndrome, and everyone on there who had received a diagnosis had mentioned they'd had raised anxiety when discussing the subject with a healthcare professional. Not to mention the fact that I hadn't seen any document mentioning anxiety as a criterion for exclusion.

The remainder of the appointment was very tense. I found it was impossible for me to share the efforts I'd made, and nor could I get my point of view across. The session left me in an extreme state of stress that lasted for several weeks. I had seen this psychiatrist three or four times a year for about 10 years, and this was the first time I had encountered such difficulties. Up until this appointment, I had had a reasonably good rapport with them.

(A study aimed at identifying the obstacles to diagnosis in adults with Asperger's reveals that a fear of being disbelieved by professionals is the most common and the most feared. The study asked professionals to find ways of fostering a climate of confidence among people with Asperger's, especially while investigating a possible autism diagnosis (Lewis 2017).)

Over the three years that followed, we broached the subject a few more times. After a while, they came to realize that I did present with autistic traits, and they told me that if I went for assessment I would very likely obtain a diagnosis. They also added that, in their opinion, assessment was a waste of time; that I would be taking the space from someone who really needed it; that it would be different if I was a child; that there's no medication for autism; and that a diagnostic assessment would be pointless and wouldn't change anything.

After our appointments, I was taking notes and I noticed some contradictions in what they said every now and then. This made me feel uneasy. It didn't seem to be truly a dialogue. Because of my perseverance, in the end Jonas suggested I go to my family doctor to get the medical referral I needed – which I did. (My psychologist didn't have a strong opinion either way on diagnosis.)

Then I contacted the psychiatrist (psychiatrist #2) attached to the specialist autism assessment clinic that had been recommended to me. They informed me that they couldn't see me, as there was a moratorium at the centre they were working at, and that in those circumstances they only accepted new adult patients if they were referred by a psychiatrist, so my GP's referral wouldn't suffice. They then suggested that I take documentation on female autism to my own psychiatrist, and if that wasn't enough, ask for a second opinion. So I gave my psychiatrist scientific studies and articles by healthcare professionals on the female profile. They wouldn't accept them, and seemed offended when I asked for a second opinion.

In all, over the three years, I was never asked about my childhood or my development, and nor was I asked about the traits I had discussed with Jonas, my psychologist, and my request for referral was turned down. The stress I felt during my final appointment with my psychiatrist was one drop too many. The discussion didn't make sense to me. So I took several months out, to think what to do next.

In spring 2015 I came to the conclusion that pursuing investigations, as I had done over the previous three years, did me more harm than good. I therefore cancelled the appointment I had with my psychiatrist. And I decided to put my trust in myself. A few weeks later, I got in touch with an Asperger's syndrome specialist in private practice in the hope of getting myself assessed.

When I decided to end follow-up with my psychiatrist, I was in a bad place. I had the impression that there was no good option, and that consequently I had to choose the 'least bad' option. In the years that followed, when I saw new ventures and developments happening in my life, I started to see things differently. I understood that by taking this decision – in other words, by following my own analysis and gut feeling – I had actually chosen myself.

Being seen, being heard

Here follows an extract from the letter I wrote to a specialist who saw me a few months after I got in touch:

I am initiating this process of assessment firstly out of respect for myself. It is the next step in a long journey and follows a variety of processes undertaken in public healthcare settings, which didn't allow me to access a specialist assessment, which would help me find some clarity and certainty concerning mild autism.

My expectations in coming to you are the same as what I have been looking for since the beginning: either to be able to talk to someone with an expertise in adult autism, or in the specificities of the female presentation, or in how autistic functioning manifests when someone is intellectually gifted. My investigations centre on the combination of these particular presentations.

The process is more important than the outcome, for me (whether it leads to an autism diagnosis or not): be it feeling at ease sharing my thoughts and questions; finding an interlocuter who will listen to me, take a closer look at the question, help me work through my thoughts; and, finally, that the explanations offered will align with my own lived experience.

I am also looking at what happens next, notably in terms of jobs, social contacts, and the 'stress attacks' I go through, which constitute a majorly disabling factor in my life, and which psychotherapy has not so far been able to resolve in any significant way.

On 6 August 2015, at the age of 43, and at the end of a process that proved both straightforward and respectful, the autism specialist told me: 'Congratulations, you are autistic!' It was the first time I had ever been congratulated for my differences, for the parts of myself that I had silenced and sealed away a long time ago. I felt relieved, and hopeful that I could make progress in the spheres of my life that needed it.

Because of my past experience, I thought that receiving an autism diagnosis would be disapproved of. So I delayed telling my family doctor. But when I did, about a year and a half later, he told me that there was no shame in it. He had just seen a programme on it, and confessed that it was new to him, since Asperger's syndrome wasn't known of at the time he completed his studies. My diagnosis helped him to understand the persistent anxiety I was experiencing. We had some good talks. My exchanges with him, and with Sophie, the counsellor who supported me while I built a tailor-made job for myself, helped me to welcome my differences, and this reassured me.

As I mentioned earlier, a little over two years after my diagnosis, I made contact with a new therapist. When I met Alice, a psychologist who is not specialized in autism, I felt it was essential for me not to sideline aspects of my personality and my life anymore. From the outset, I shared my story with her, the trials I had encountered along the way, as well as my differences. I gave her information and documentation on the female presentation of autism, which she took the time to go through. My life experience and my differences were all taken into account.

I no longer had the feeling of having to fit into a box, or split myself in two. Each time, the material that I brought along was given consideration. I didn't encounter any problems communicating or making myself understood, as I had done previously. Her multifaceted approach helped me make progress. I felt welcomed in all my many aspects, including my literary and artistic sides. It was a reparative experience.

After the setbacks I had met along the way, I needed to find a place where I could be still, to try new things, reorganize my life and rebuild myself no longer against, but in line with, who I am.

Effects and consequences

Between starting to write this narrative in spring 2016 and revising it in March 2020, something amazing has happened. In rereading my text and updating it, I was astonished to discover I had made several advancements. In fact, these last few years, my life has taken a turn for the better. I am having successes in my personal and professional lives. I am back in touch with my creative side. I embark on and see through projects like so many adventures. I do things I had never dreamed of. Most often, I feel joy. I have created a network of collaborators and friends. I am progressively rebuilding my confidence in humans. I am learning to adapt my lifestyle and environment to my functioning rather than permanently over-adapting myself. I'm more assertive.

Little by little, I am rebuilding my confidence and self-esteem. I seize opportunities and accept invitations. I feel fulfilled and I live up to my potential by playing to my strengths. I make more jokes. I meet incredible people. I feel both proud and mindful. I feel pleasure in talking with other people – in small doses. I no longer feel guilty about enjoying solitude. I have fewer stress attacks. Sometimes I feel an inner peace. I have learned what works for me in terms of support. I still meet with challenges, but I am filled with the hope of making new progress. All in all, I am happy with my life, which I feel to be more complete. In sum, I am alive again.

I chose to make my voice heard by writing this book, and through several other courses of action, because a journey like my own – in other words, long and complex – is far from the exception. Right now, many autistic women are completely in the dark about their condition. Some are navigating, with great difficulty, the backwaters of the public health system, which understands little of the specificities of their functioning and is reluctant to give them access to specialist assessment. Yet it is known that diagnosis has a positive impact for the most part. It helps you review yourself, review the path you have been on. It will open up access to tailored support and help you develop your own toolkit. A diagnosis can also be a way of protecting autistic women and girls. Because they struggle to read the intentions of others, some have found themselves in abusive situations. Getting to know your strengths as well as your areas of vulnerability will help you make better choices for yourself and protect yourself from risky situations and the associated consequences.

I have written this narrative somewhat in the style of a speech for the defence. A defence for myself, for the child and teenager that I was, always seeking to flatten out my differences, as well as a defence for the woman that I have become, wishing to live my life fully while being true to these same differences. A defence in favour of all those with a neurodivergent functioning and, in particular, autistic women and girls, and all autistic people with internalized presentation.

Autism, even in a mild form, is the pedestal on which all our life experiences are built. If you can grasp this fact, it will lead to a deeper understanding of yourself, both now and retrospectively. It is a way of providing a safe haven for those parts of yourself that are a little bit unusual and that have often been misunderstood or mistreated in the past.

If you are autistic but don't know that you are, it can be difficult to find a key or instruction manual to understanding yourself. Guided reading will not change who you are, but it will help direct your energies to build an environment that is kind to yourself, and which allows you to move forward by embracing your particularities rather than struggling against them. Identifying my autism has helped me to build where previously there had been only a dead end. I hope that more and more autistic women and girls will be able to gain access, without too many setbacks or delays, to this understanding of themselves.

The Female Profile of Autism by Isabelle Henault and Annyck Martin is available to buy from JKP. You can use the discount code: BPSHEN for 20% off the book. 

See also our neurodivergence collection.