(Too Many) Words on Being Diagnosed with Autism in Your Forties
I always felt I was “a bit autistic”. It was a phrase I often used to use, usually apologetically, when I was doing something a bit pernickety like moving a glass away from the edge of a table or neatly labelling storage boxes of media at work. It was however a phrase I stopped using about myself altogether when a colleague’s child was diagnosed with autism and required a significant level of day to day support. I absolutely wasn’t like that child so I felt my use of the word was at best inaccurate and at worst offensive.
I had done that free online AQ test several times over the years and always scored highly but I didn’t think it meant I was autistic. One of the questions was about preferring parties or libraries and whilst I do love being asked to parties I have a degree in librarianship. My reading of my results was that I was organised and consistent about the way I did things and whilst that might put me on a spectrum a bit nearer autistic people it didn’t mean I was autistic.
And then lockdown happened. The week before it was confirmed we would be working from home I bought a computer screen just in case and on the first day in my new home office I was ready and kitted out with a spacious desk, a quiet room and most things I needed to work effectively. Within a week or two I had a beautiful and comfy new office chair and within a few months I had bought my third keyboard (finally finding one that fitted my setup perfectly), a drawer full of office stationery and I had a separate computer for my Zoom meetings so I could use my work computer at the same time if needed. My productivity went through the roof, as did my hours. Instead of commuting I sat at my desk and so those 10 weekly hours usually spent on the tram turned into work instead.
Work was getting me through a lot but what I took for productivity generated by being alone in a quiet environment rather than a noisy open plan office was probably more to do with me managing my lack of control at what was going on in the world. I was totally isolated. I have no car and my family live nearly 200 miles away (and I still haven’t met with them since late 2019). I was no longer seeing colleagues and due to initial restrictions and me being in a single adult household I wasn’t able to see any of the small number of friends I have. In fact it wasn’t until support bubbles were created that I was able to see my closest friend and I spent 68 days without any adult contact, marking each day off on a blackboard I have on a wall at home.
All this time for reflection made me realise a few things. One was that I like having my own house and space but that sometimes I really hate living on my own. I partly share my house with my 15 year old daughter but when lockdown started her father and I decided to change our arrangement so she would reduce her movements and spend one week at his and one week at mine, rather that flitting between our houses throughout the week as she had previously done. This worked ok but meant that the day she left my house to go to his became a day I dreaded as it would mean I was heading for seven long days alone. I became so stressed about those days that my support bubble suggested coming round each time she left for her Dad’s and it’s an arrangement that has lasted throughout lockdown.
I also began to realise that my excessive work and inability to relax wasn’t just because I’m a self confessed workaholic. One night my support bubble cancelled a visit to my house about an hour before he was due to arrive because he was feeling unwell. I was so distressed I cried on and off for three days. I don’t know if it was the last minute change of plan, the disappointment that I was facing more days alone or not knowing how to relax now my evening plans had been cancelled but it all felt far too much to cope with.
A few days after my meltdown I was helping run an online version of a meetup group I am involved with. At the end of the session I was talking with our guest speaker about lockdown and I mentioned working hard and not being able to relax at home but being able to completely chill out when at my bubble’s house. The speaker was an autistic man who is open about his experiences and he told me that in autism it is known as hyper-vigilance. He talked about how his carers help him be able to relax, as when he’s on his own he’s often very alert and prone to anxiety. As we continued to talk he put more of my experiences into an autism context and it got me thinking. A few days later I started looking into how you get diagnosed.
Initially I spoke to a GP who I have never met in real life. We had a phone conversation. I told her I thought I might be autistic and that lockdown had magnified some of the things I found difficult. I told her I was chronically lonely which sometimes led to dark thoughts and that I was working really hard at my job but unable to relax. She told me I didn’t have ADHD (which I hadn’t even mentioned) and that lots of people felt lonely due to lockdown. She added that I couldn’t possibly be autistic because it would have been picked up when I was a child and if I was autistic I’d like being on my own. I then mentioned that I really like photography and have 50,000 images on Flickr, all of which are tagged and catalogued so myself and others can find them online. She reluctantly agreed to put a referral in but told me it would take at least two years before anyone would see me.
I read Cynthia Kim’s ‘I Think I Might Be Autistic’ and was surprised to recognise things about myself in the book. I began to read up more about adult diagnosis online and one of the consistent messages I came across was how hard it is to get assessed via the NHS and how stressful that process can be. People talked about seeking private diagnosis and I was amazed because I didn’t even know that was a thing. I began searching for clinics which would do private assessments for adults in my area of the country. I found three. One didn’t reply to my enquiry, one did everything solely over video (due to Covid) and one said they could see me in person in a few months time. I booked in expecting to wait for several months but was then offered a cancellation appointment a few weeks later. I grabbed it.
Before my appointment I made the decision not to read anything more about autism. I didn’t want to go into my assessment having prepped. I still wasn’t sure I was autistic and I didn’t want some kind of placebo effect to come into play. I knew I’d have to do some exercises but I didn’t want to know what they were. I was nervous not knowing (and usually I like to find out everything I can in advance about something that I’m planning to do) but I figured if I had to do something like a stroop effect test then I’d feel the need to practise so it was best to go in with no prep at all. I did however write a document about anything from my childhood, teenage years and adulthood that fitted with the autistic traits I had read about in Cynthia Kim’s book. My examples list was 13 pages long. I also talked to my sister and my mum. My sister is a medical doctor and she said she had noticed that I am someone who seems to need fairly rigid plans in place and struggles with change. She also said that despite what my GP had said it was less likely that my traits would have been picked up in childhood because autism was much less well known then. We’re both in our 40s and I think she’s right that girls weren’t routinely being picked up for autism in the 1980s.
The assessment itself wasn’t cheap but was pretty much stress free and I have no regrets about opting for a private diagnosis. Don’t get me wrong, I was anxious about undergoing assessment but my support bubble said he’d drive me there which was really helpful as it was awkward to get to on public transport and on the day itself I felt sick with nerves. Once in, I had to do exercises with no right or wrong answers. Some of them were deceptively easy but once I got into them I discovered I was really struggling. It felt surprising… like the day I got a brace fitted on my teeth and the orthodontist asked me to say “sixty six”. Things I assumed I could do easily I suddenly realised I had real difficulties with or couldn’t do at all.
The face to face ADOS-2 assessment carried out by a clinical psychologist was followed by a Zoom meeting I did later at home with a speech language therapist who did the DISCO section — an interview about my behaviour and development from birth onwards. I threw in stories my mum had given me including one about how I used to eat glass Christmas baubles as a toddler (“I can’t remember it but I’ve seen pictures of me in front of the Christmas tree with glitter all round my mouth”). I talked about how educationally I was smart but bombed any subjects that didn’t engage me and also how as a teen I had decided on the job and employer I wanted and how I successfully achieved that dream at 21 and have been working for the same employer as an archive researcher ever since.
I wasn’t quite sure what the verdict would be but at the end I was told I was autistic. I don’t really know how I felt. My bubble was sat in the next room watching something on YouTube and I walked in and said “Well, I’m autistic” and we talked about it for a while before walking down to the chippy to get fish and chips for tea which felt like a really good thing to do. My abiding memory of that day is that I’m glad that when my bubble brought me home from my morning ADOS-2 assessment he decided to remain at my house for my afternoon session even though I was too scared to ask him to stay. I feel relieved and grateful that I didn’t receive my diagnosis on my own.
In the days that followed it felt like I had found the settings menu for my brain. I had a sense of being able to see why things happened; some of those toggles were greyed out so I couldn’t change them but I could at least see what they had been set to and why some things in life feel so challenging to me. Then the 30 page assessment report turned up a couple of weeks later and it felt like I had a bit of documentation too. Some of it was hard to read. I had inadvertently tried to mask my difficulty with eye contact but they had noticed that. Some of my conversation they had noted was one sided which made me feel rude and inconsiderate but I recognised it was their job to spot stuff like that. For a while I thought that report would answer everything but it’s just been my starting point and it’s in the months since my diagnosis that I feel like I’ve started to get to grips with understanding myself. I recognise that actually I know very little about autism and I have a lot to learn.
What has surprised me most is that the stuff I always thought was a bit autistic (like my vocation to be a TV and radio archivist, my speed and drive in work; my intense interest in photography and making all of my images findable online) aren’t the things that have been validated by my diagnosis. Instead I’ve discovered that lots of odd, random and horribly anxiety inducing traits I’ve had for years are most probably down to autism and not actually because I’m weird or broken — and knowing that has been game changing for me. For the first time I’ve not felt bad that I like having a blanket over me when I watch TV (even in summer), I often use the phrase “Too many words!” at the end of embarrassingly long texts but now I know why I talk too much, all that stress I get about not knowing where I am going and directions isn’t me being stupid, it’s an autism thing. I’m not simply over sensitive, I’m processing things that feel difficult to cope with. And when things feel unjust, not fair, or against my own inbuilt set of rules I’m not being stubborn or obstinate, I’m genuinely struggling to understand and accept things that make no sense to me.
Formal diagnosis isn’t for everyone but in my case I knew I’d never be able to trust my own self diagnosis. For me it’s given me the room to be less self judgemental and find more compassion towards myself. When things happen that I find difficult I sometimes reflect that it’s down to my autism and that’s helpful. That doesn’t mean I let myself off the hook for freaking out when someone has done something that feels really alien to me but it does mean I have some awareness of it and in some cases I’ve even been able to talk to others about how autism feels to me so they have some understanding when interacting with me too.
(Sorry for going on. That’s an autism thing too).