Being diagnosed with an autistic spectrum condition as an adult
Project 39 is a blog about getting diagnosed with an autistic spectrum condition as an adult… the process and the ‘what now’. I’m 39, female, and live in Wales in the UK. I got my diagnosis of so-called ‘high functioning’ ASD (Autistic Spectrum Disorder) via the NHS in June 2016.
Why Project 39?
In 2014 I found myself suffering with a very bad episode of depression, which lasted over a year. I made the decision to reduce my work hours during this time to help me cope more easily with life’s demands. This effectively gave me 39 ‘extra’ days (I had Tuesdays off from my job as a high school teacher) in which to try to figure out what I could do to re-imagine my working life and improve my mental health.
One of many positive things to come out of this time was finally feeling able to acknowledge my Asperger’s and to start talking about it.
Another was that it started me off on my journey towards diagnosis – which happened in the summer of 2016, when I was 37.
Since starting this blog, two people I know have pursued their own diagnoses of Asperger’s. I am very grateful to them both for sharing this with me and including me in their journeys.
Help with Asperger’s
I hope you get something out of reading my posts, whether you’re on the same journey, love someone who is, or just want to learn more about what it’s like being on the autistic spectrum.
Something that has helped me hugely during and post-diagnosis has been the Facebook group British Women with Asperger’s UK Connect group, so I’ve included the link for anyone who might wish to join it too. I feel that my differences, frustrations and challenges are fully understood in the group. Having someone where I can talk about things that I might not feel comfortable saying to my NT (neurotypical) friends is a blessing.
It is my experience that there is very limited post-diagnosis help for adults with Asperger’s in Wales (though anecdotally it seems we are better off here than in many other parts of the UK). However, one organisation that might be of assistance is Autism Initiatives – ‘Unique services for people to enable them to have ownership of their own lives and futures’. They operate in many parts of the UK, including Cardiff, and run services for adults such as a drop-in centre, activities and trips.
More help with Asperger’s
I intend to build up my list of useful contacts and hope to be able to provide signposts to services that offer help to so-called ‘high functioning’ adults. We are often overlooked as we appear not to need any help managing our lives. This is not the case, as shown by the comparatively high number of people with Asperger’s who suffer with mental health problems such as depression and anxiety, compared with the general population. Adults with ASD often seem to be overlooked in the media and on social media, where the focus is all to often on parents with children on the spectrum. But children grow into adults, and our autism does not leave us with adulthood. We need to work to improve the services available to us.
A note on language
People-first language You will notice that I will use both the terms ‘people with Asperger’s’ and ‘autistic people’ on this site. I would describe myself as autistic, and understand that Asperger’s is a form of autism (and is no longer a separate diagnostic term in the US). In my opinion autism is not a disease or illness, but a neurological difference, present from birth. My autism can be problematic, but if it was taken away I would be a completely different person! Therefore autism is not something I ‘have’, but something I am. However, you will see me use the term ‘people with Asperger’s’ as well, as the term ‘Asperger’s’ is still in common usage in the UK.
High functioning Due to my extreme dislike of the term ‘high-functioning’ (which you will always see in this blog written in inverted commas) I try to avoid its use if possible. I feel that this term belittles the struggles and difficulties of people diagnosed at the ‘higher end’ of the spectrum – just because my autism is not obvious or problematic to you, that doesn’t mean it isn’t causing me difficulties! We may be able to work, make and keep friendships and pass exams, but that doesn’t mean our autism doesn’t have a profound impact on our day to day lives. Functioning labels also ignore the fact that the same person may be capable of functioning far better on one day or situation than the next! I have recently discovered the alternative term ‘high masking’, which seems to describe what I experience much better.
Note: I moved this blog from Weebly to WordPress and in doing so unfortunately lost all the comments on the original posts. If one of those comments was yours, please accept my apologies for its removal. Feel free to leave new comments on my posts here on WordPress!