Our second guest blog comes from Lydia Niziblian who writes about getting diagnosed as a female in her 40s:
Finding out I had Asperger’s Syndrome at 42, was a bit like finding out I’d come out of a public toilet and ten minutes later noticing my skirt was tucked into my knickers. Only the ten minutes was 42 years long. How could I not have known?
I had, up until the age of 41 no clue I might be on the autistic spectrum. None. I had always been a bit unconventional, and a bit weird, but I’d muddled through. I’d got a degree, had lived in London working in TV production, got married, had babies, moved home to Cardiff and started my own business. I found out I was on the Autism spectrum almost by accident.
When my son was 6, his unusual behaviours and the list of ‘rules’ we had to follow to navigate the day without a meltdown reached a point where we sought help. To cut an extremely long story shorter, it seemed the most likely reason behind it all was autism, albeit more of the Asperger’s variety. A quick aside, I know that everyone is now just diagnosed as being ‘on the autism spectrum’, and Asperger’s is no longer used, but I really hate the terms ‘high’ or ‘low functioning’ autism. Put enough stresses on a so-called high-functioning autistic person, and you can very quickly see them become ‘low’ functioning. So I prefer Asperger’s, which I choose to continue to use.
Whilst in the early days of the diagnosis process with our son, a good friend who knows my family (and autism) well asked if we knew how girls present differently on the spectrum. Having confessed ignorance, they suggested that we might have a look into it, and had we considered our daughter might have Asperger’s? We hadn’t. Yes, she was pretty eccentric. Yes she had real difficulties making friends, but I’d been the same.
We went and looked it up, and in the process, came across the book ‘Aspiengirl’ by Australian psychologist Tania A Marshall. The book has a fantastic appendix, listing typical characteristics and traits of girls on the spectrum. When I read it, I literally got goosebumps. Not only did the list sound like it had been written about our daughter, it also rang absolutely true for me. We started the diagnosis process for our daughter, as she was approaching her teens, and was really struggling with friendships and her feelings of alienation. I decided I wouldn’t pursue it myself, as what was the point? Nothing would change, and I was a big ol’ grown up.
Over the coming weeks I spoke to a couple of journalists in the role as ‘mum to a female on the spectrum’, and chatted to (a very lovely and patient) Tania online about autism in females, and their diagnostic process. Gradually I started looking at aspects of my past that I had very carefully ignored for 20 or even 30 years. I ended up with all this stuff from my life that I hadn’t understood, or that had made me unhappy, that I had kept safely packed away, and now it was all floating around in my head and I didn’t know what to do with it. I decided I’d go for diagnosis, in the hope that a solid ‘yes’ or ‘no’ would help me make sense of it all. This is how it went:
Step one: I took myself to my GP with my list of ‘why I might be on the spectrum’ and asked for referral. GP did not know who to refer me to. I later find out this is not uncommon. I go and search online, and through the Facebook page of the Adult Autism Advice agency, I find out I need to be referred to the local Primary Mental Health Team. I tell my GP, my GP refers me.
Step two: I am lucky and the wait is only a few weeks before I get an appointment to see a psychiatrist. This is the point I nearly bolted. I had NO idea what would happen, or if they’d tell me I was just nuts, or what. In the end, it was a lovely lady, who asked me a specific questionnaire and a ton of other questions for about an hour. At the end she told me I scored highly as probably having Asperger Syndrome (or high functioning autism, or mild autism, however you want to refer to it). Apparently I could stop there and be satisfied with that, or go onward to step three. Not quitting now, Onward!
Step three: I was warned it could take a year for an appointment, but within a couple of months I saw an Autism specialist nurse, who again was lovely, and asked more questions about my life, childhood, work, day to day activities and more.
Step four: The big one, a couple of months later. My mum accompanied me to the diagnosis appointment itself. There are a lot of questions about your development and behaviours before the age of 5, so it helps to have someone who was there, and can actually remember it. There will be a Step five; a post-diagnosis appointment after you’ve had time to process whatever you have been told.
I had never discussed any of this with my mum before the appointment, so it was very interesting to hear her talk about me having meltdowns if things were not done ‘the right way’, sensory problems (I was always crazily sensitive to smells and light), how I would not wear certain clothes, how my happiest times were spent with our 80 year old neighbour or the creatures in our pond, my ‘naughtiness’ at nursery and school when I was not stretched, and my precocious reading and speech. In turn, for the first time, she heard about the difficulties I have always had making, and more importantly, keeping, friends, the loneliness, the Year I Wanted To Die, and how I (did not) cope with College and Work.
At the end of an hour, the Doctor explained that yes, I was on the Autistic Spectrum, that whilst I obviously had sensory and social difficulties, I had unusually good language abilities. Go me! I was genuinely disappointed to find they don’t give you a badge for being Autistic.
There was also a great post-diagnosis course I was invited to at 21 High Street a while later, which was utterly brilliant, covering everything from autism in history to disclosure.
It’s now been just over a year since my diagnosis, and I think it’s taken me this long to process it. It’s given me huge understanding as to why I am the way I am. Whilst it doesn’t change me, or any of my abilities, it does change how I see and treat myself. I now give myself a break over the things I have difficulty with. If I make myself do something outside of my comfort myself, I allow myself time to shut off afterwards. I know that often I will get physically sick with anxiety over something as simple as a meeting with someone I don’t know. Now I can acknowledge it, and carry on, knowing it will pass, rather than make excuses not to do it and then feel awful. I have stopped worrying quite so much what people think of me. I’ve finally got the tattoo I have secretly wanted for half my life! I realise ASD is in everything I do, it’s in the physical pleasure of making jewellery, it’s in my obsession over perfumes. It’s in my dislike of surprises and in my irresistible urges to touch things that look like they feel interesting (even if someone is wearing them). It’s in my inability to filter out noise and my love of a bear hug, the way crowds make me cry and how I can’t leave anything unresolved. I am re-learning myself, and it’s such a relief to finally be making peace with who I am. I might have spent my life wandering around with my metaphorical skirt tucked into my knickers, but I’m ok with that. Besides, they’re Wonder Woman pants, how cool is that?