My Autistic Spectrum Condition Diagnosis Story

Why I decided to seek a diagnosis

I was 32 when I received my diagnosis of Autistic Spectrum Condition.  I decided to seek a diagnosis as I had read online about women on the spectrum and identified with some of this information.  I had always suffered with anxiety, low mood and self-esteem, as well as difficulties socially and in the workplace.  When I read about women with autism I felt that this would explain why life had always felt so difficult, like I was living in a dark, confusing and often hostile world.  However I initially wasn’t convinced that I really fit the profile of someone on the spectrum, as like most of us I only really knew about the male stereotypes that are commonly portrayed in the media.  It can’t be stressed enough how autism affects us all differently due to a variety of factors (including learning differences, personality and environment to name a few), so the examples of my own experiences are just that.

How I found the diagnostic assessment experience

It was a difficult decision to go for an assessment, and I was worried that the diagnostic team wouldn’t take me seriously and that I would feel silly for thinking I might be autistic.  However it was reassuring to be listened to and taken seriously.  I found the diagnostic process a bit daunting, but once I received a diagnosis I felt a huge sense of relief that finally I could start to understand and explain so many aspects of my life.

My thoughts about how women with autism are different from men

I feel that autistic men and women have the same core difficulties, however the way that girls and women react to these can often result in a much subtler presentation.  For this reason, it has taken me a long time to gain insight into how autism is part of me, and I am still learning about this.  For example, contrary to stereotypes of a person on the autistic spectrum, I don’t have strict routines and often go along with what others are doing in an attempt to be social, however I suffer from a lot of anxiety as a result which is frequently very difficult to live with.  I have always wanted to be social, consciously practicing making eye contact, smiling at others and learning how to behave ‘better’ since childhood.  This pretence can mean that I don’t immediately stand out from ‘neurotypicals’ (for example at a job interview).  However as these skills are superficial, I often proceeded to have many difficulties further into a situation, for example social exclusion, bullying and being unable to perform successfully in all aspects of a job due to a lack of awareness of my autism.  Due to this ability to fit in superficially, it is said that many women ‘mask’ their autism.  This means that although to the onlooker we may appear to have ‘milder’ symptoms, the reality is that we often struggle hugely in many areas.

What having a diagnosis means to me

Prior to diagnosis, the difficulties that I experienced were often misunderstood; for example my difficulties in effectively relating to, following, and contributing to a group conversation was seen as shyness.  I internalised this label of being ‘shy’, as I didn’t have the insight to know any different, and was constantly trying to be more outgoing.  I failed each time, experiencing rejection and bullying due to being so eager to please, and somewhat gullible.  Differences in how I process information and the resultant mistakes have been viewed as incompetency in the workplace.  I had little awareness of how much sensory issues can affect my wellbeing, and just thought this was part of my general anxiety. 

Having this new understanding of myself as autistic means that I can begin to adapt my life to what works best for me, rather than trying to copy the behaviour of those around me.  It also enables me to understand and explain my difficulties.  This means that other people can understand me better and I don’t have to worry as much about them misinterpreting my behaviour.  Since getting a diagnosis I have been able to access some support that has helped me to increase my understanding of my difficulties and find ways to cope with them, as well as to build my self-esteem, manage anxiety, and meet others on the spectrum.

Do I wish I had received a diagnosis at a younger age?

I think that having a diagnosis as a child would have enabled me to get the support and understanding that I needed.  It would have allowed me to gain a different understanding of myself and of the world at a younger age, meaning that my self esteem and mental health may not have suffered as much, allowing me to gain better coping strategies much earlier.  I strongly believe that awareness of autism in girls and women needs to be raised so that they can all access the support that they need.