Happy Dx Day

If you want to have an assessment to find out whether you are autistic, you better hope that you live in the right place. It really is a postcode lottery in Britain these days. If I lived seven miles down the road, I would be able to have a referral to the Adult Aspergers team who would carry out the assessment in a fairly straightforward way; albeit with a long delay. The waiting list is currently over a year. Where I live the process is more complicated. I could go to my GP and ask for a referral and he could agree to do so but the next step is where things would stall. The local Clinical Commissioning Group would receive the referral and make a decision whether my need for an answer is worth putting forward in excess of £3,000 for an assessment to be done. As there are requests for life saving treatments and medications competing for the same pot of money and I am functioning enough to look after my children and maintain employment the decision to refuse the assessment fee is a foregone conclusion. I work for the NHS in the mental health field so I know the system from the inside. This is what led me to seek a private route for assessment and diagnosis.

I waited six months after contacting the psychologist’s office partly because I needed to save up the money to go private. I’m a single mum so my wages are usually spent as soon as they arrive. The other reason for the delay was fear; what if this wasn’t the answer to explain why I’ve never belonged? My desire to know outweighed my anxiety and early this year I booked my four-hour assessment (two x two hours) for early February. The night before my first assessment session, I managed to whip myself up into a tearful frenzy by getting mixed up with the appointment times and time zone confusions. With the help of a kind and patient friend this was thankfully sorted out in time for me to calm down and prepare for my first meeting with the psychologist over Skype. I found  the whole assessment process to be a compassionate and therapeutic experience. She was extremely thorough, using a number of different tools and sources of information in order to gain the information she needed to make a decision. When I received my diagnosis of Aspergers, the psychologist  explained how she had come to that conclusion and we spent some time discussing what happens next. As the female presentation of Aspergers is so little recognised it is  not unusual for people to cast doubt on the diagnosis when someone comes out to them as Aspie.

Once I had said goodbye to her and switched off my iPad, I sat a moment unsure how to feel. My initial delight and excitement gave way to a shaky, tearful kind of limbo. What did all of this mean? I didn’t have long to reflect as I was due in work so I spent the journey thinking over who to tell and wondering what kind of reaction I would get. This blog gives me the opportunity to describe my coming out process and how I go about growing into this newly confirmed part of my identity.

New Beginnings

February is setting off in an interesting direction this year. Yesterday I was diagnosed with Asperger Syndrome. I’m 46 and have had my suspicions for a long time that I am on the Autistic Spectrum so it was good to have a definitive answer. I have a sense that this will change my life profoundly whilst also leaving it fundamentally the same. I will still be the same quirky, eccentric person who loves books and finds socialising a challenge so what will be different? Part of the reason I am starting this blog is to have a space to explore how the answers to this question will reveal themselves. Firstly, let me explain to you the process that led to me writing these words today.

My second daughter C is a wonderful example of an Aspie girl. She is bright and creative, questions the world in ways that feel refreshing and yet blatantly obvious and experiences everything acutely. This can mean that sometimes life is anxiety provoking and puzzling for her but we find ways to navigate these challenges most of the time. I had a tough time getting a diagnosis for her, she complied with what was asked of her at school and didn’t cause any problems so her teachers didn’t see the problems that brought her home sobbing day after day. It took years of being fobbed off, having her referred to inappropriate groups and therapists and being seen as ‘that parent’ at her school before we found a therapist  who recognised her ASD traits and encouraged the paediatrician to confirm what I already knew. Since I have been able to explain her differences to her in terms of ASD she has grown in confidence and self-assurance in a way that makes my heart swell with pride.

Being an advocate for my daughter forced me to become more skilled at articulating her Aspie characteristics and as I did so I couldn’t help but notice how familiar they were to me. This ignited my interest and, as I have done many times when I’m trying to work something out, I turned to books and research articles to inform myself. Gradually I began to piece together the differences in gender presentation of Autistic Spectrum Disorders. Women and girls have been poorly served by the professionals in this field until very recent times when finally it is being recognised that the female picture of ASD can look very different to that of males. The turning point came for me when I came across the work of a psychologist who specialises in the female presentation of autism. Her description of the characteristics and traits of women with Asperger Syndrome was such a revelation to me; finally someone was describing my experience of life. I emailed her office in May 2014 to ask for more information about booking an assessment and put in an order for books to help me make a decision of what to do next. I ended up waiting six months before requesting an assessment but that time was well spent.

My next post will describe how I moved from contemplation to action and found myself a newly born Aspie! Please come back to find out more…