But I Don't Look Autistic...
My Journey to diagnosis
My name is Sally Anne and I am an academic and a mother. I am also autistic. I was diagnosed in late 2020. For me this part of my bio is still very new. How I feel about it changes almost every day.
This post is my story, my journey to awareness, denial, diagnosis, and something approaching self-understanding. Be warned, its a long story.
Let's start with a little bit of background
I did not know much about autism for most of my life. I had some stereotypical views of it (which I now know were deeply ignorant, ableist, and not just a little offensive). It never crossed my mind that it was something that might affect me!
Do not misunderstand me, I have always known that I have certain quirks, socially awkward, anxiety, terrible memory, face-blindness, a love of plans and rules and indicators, a hatred of surprises… I have always had bouts of depression and get stuck in cycles and spirals and cannot get back out again. Most of all, I know that no matter how hard I have tried I haven’t “got over” most of this.
I have spent most of my life hiding this all from everyone. You see I thought I knew deep down what my problem was. So far down that I was always afraid to look. I knew I must just be a terrible, selfish, and lazy person, too deficient to figure out how to get on with others, and too lazy to put the effort in that everybody else must do. I knew I had to fake it, so the world never copped it and sent me to Siberia. I believed that despite knowing that I was trying with every inch of my soul.
Despite everything, I had went to school, got good grades and went to college. I have always worked. I have a car, a home, a husband, a baby, and a couple of very good friends. I like spending time with my family. Tick, tick, tick. All ‘normal’ from the outside.
The fact it all felt so, so, much harder for me? This just proved I was not trying hard enough. Maybe I was even imagining things? So, I kept it covered up and nobody could tell. Not my mother, my siblings, my bestie.
When I look back now I realise that for me, this masking has become an instinctual self-defence. I started doing it around age six. It was when I realised that ‘normal’ children did not walk around their housing estates singing to themselves, or have favourite tiles to twirl on. I started then and I haven’t really stopped.
My Journey Begins
So back to my journey. It was a slow and meandering one at first. Then it turned into a rollercoaster.
The first time I learned anything about autism was in 2016. I was reviewing a conference paper for a colleague and came across the triad of impairment. ‘That’s very interesting,’ I thought to myself. I followed it almost immediately with ‘but they can’t really use that, can they? Sure, anybody could meet those criteria. Even I meet those criteria. How ridiculous’.
Even sitting there reading the criteria I didn’t give a single moment of serious thought to it applying to me. Why not? Not because using ‘impairments’ is such an appalling way to assess a person or it was such a horrible term. I dismissed it because it obviously could not apply to me. Clearly, I did not look autistic. And if you do not look like a duck or quack like a duck then how could you be a duck? I finished reviewing the paper, without discussing this with the writer, gave it back, and promptly forgot it.
My next brush with autism was about a year later through an academic Facebook group. A member posted that he had done something called an AQ test and was surprised by the results. He also posted a link to an online version of the test. Well, once you get to know me you will understand that there is not a button in the world that I will not press if given the opportunity. I would have pressed it, even if I had not suddenly recalled that conference paper and started to wonder.
So, press it I did. The AQ test turned out to be the Autism Spectrum Quotient (AQ) test. It gives you a list of 50 questions and a Likert scale of answers (not relevant, but why only 4 options on the scale and not 5?). You fill in your answers, submit, and it gives you a numerical score out of 50. Scores above a certain threshold (33) indicate autism may be present. Obviously, this does not replace formal diagnosis and there are other conditions that can lead to a high score. It can give you an indication, though. My score came out at 40. This, the test told me, was indicative of significant autistic traits.
I was surprisingly angry at the result, ‘Like **** I have’. Once more, I chose to let it all go. I closed the site, glared at Facebook, and went about my day. The next day I was very depressed, rang in sick to work, and spent three days in bed reading novels, unable to move. I was not sure why I was in shutdown, I did not connect the shutdown episode to the test results. It was just me, messing things up again.
Self Awareness Grows
I parked thoughts of autism for a while after that, but they started popping up more and more. Occasional googling, then a show on channel 4, more tests, more googling. I started to learn more about the reality of the autism spectrum, and female presentation of autism. Doubt crept it.
I became a little less sure that it could not apply to me. Finally, In 2019 I forced myself to tell my husband of these suspicions. He was less surprised than I expected. Much less surprised. We talked about it for days. In the end I decided that it was possible, but that it didn’t matter. I am who I am and autism would likely be an unhelpful label. I started attributing my social challenges to possible autism. I tried to ignore it, but I kept wondering. More online tests followed, confirming my suspicions, (thank you autismresearchcentre.com). All the while, my daily life continued. My mental health struggles continued. My shutdowns continued. I still did not see any relationship between this part of my life and possible autism. Looking back, that’s quite funny, and clearly a bit denial-y of me, but it is the truth.
Why did I not see? How? It seems so obvious now. But, there was always something else in my life I could point to. Moving city, pregnancy, sleep deprivation, work stress, moving house, changing jobs, etc… Why would I look further than what was right in front of me? I wonder now, was I masking from myself?
I am so used to keeping the mask up that I even did it in counselling. In 2019, I started CBT (with counsellor 3) and it really did help. For a while. Focusing on my practical problems, new baby, new house, overwhelmed at work, I never mentioned autism or my internal view of myself. After all, I was looking for practical solutions. Holding back was never deliberate with counsellors. Like I said, masking is instinctive.
Counselling ended, but many of the struggles continued. Then there was a pandemic, and no childcare, and no help, but lots of extra work, and it all came tumbling down.
The Path to Diagnosis
What finally set me on the path was yet another shutdown.
In August 2020, I was fully working from home, and had been since March. One morning I got up and I could not make myself turn on my computer. I sat there frozen. It sounds so small, but I could not do it. Even as I berated myself for being ridiculous, I went into complete shutdown. Yet Again. I was not worried about work or anything else. So why? Why? Why?
My husband, Bob, is an essential worker. Out at work, he did not know I was in bed most of that week. Bob has been in my life, and there for me since I was 18. He is the only person I have ever allowed to see my challenges. He has been a constant source of support and joy. Bob, though often affected by my issues, was never really hurt by them (I think). In the depths of that shutdown, I had a realisation: Bob might be okay, but what about my now 2-year-old? He would soon start to see it too. He is so young it could hurt him. Not an acceptable outcome.
More help was needed. I talked it through with Bob and we came up with a plan. This brought me to my GP (by phone). She gave me a prescription for antidepressants and exercise. She agreed that seeking further counselling was a very good plan.
Somewhere in all of this, I figured out why previous counselling hadn’t worked. That I had never dropped the mask even for that; that the shame and fear had always been too strong to do so. I promised myself that this time I would, and I have. It was the hardest thing I have ever done. I think the COVID-related video counselling actually helped with this. Turns out it’s a little easier to talk to a screen that does not require eye contact.
Believe it or not, at this point, autism was still nowhere on my radar as being in any way linked to my mental health. It wasn’t something I was particularly thinking or worrying about, so I did not mention it to counsellor 4. Let’s call her Kate. I did tell Kate most everything else, though. The shutdowns, the social difficulties, the fears. The way I have woven my life to minimise their impact. We talked about my childhood and socialising then, my development and so on. I told her about incidents I have never spoken to anyone about. Sometimes I couldn’t even get the words out.
Would you like some examples? So the time when 10-year-old me, was annoyed at getting a “fair” on my school report for socialising with peers. It ruined my otherwise perfect scores. How I came up with a plan to get in trouble for talking in class once a month the following year to improve my score. How well it worked. There was that very odd way my mother reacted 7 years later when she saw me having an almost panic attack at our leaving cert graduation mass. Her saying to me afterwards that she had never seen me like that before. How I felt when I realised that even she did not know. Did not see. Success, satisfaction, sadness, loneliness, all in one. How about the times I didn’t recognise my own in-laws because they were 80 miles away from where I would expect them to be, or when I didn’t recognise my own landlord because she was not in the house…
Later I told her about depression and shutdowns. How often they happen and what they look like, and how I couldn’t figure out what caused them. I described the latest shutdown, and my fears for my little one. Towards the end of one session she said to me ‘Sally, I want to ask you about something’. She seemed a bit nervous, more than a bit truth be told, and that really put me on edge. Then she took a deep breath and said “have you ever heard of autism….”. I laughed and laughed. I laughed so much she must have thought I’d lost it. ‘Well’ I said….
Kate seemed relieved I wasn’t offended. We talked about it, and I explained I thought it was possible, maybe even probable. I explained I saw no advantage to exploring it. What difference would confirmation make? It was completely unrelated to my current issues after all. She explained that there may be more of a link between these things and my mental health than I was expecting. She felt that the approach to solving my problems might need to take it into consideration; and that it might be worth thinking about it more. This sounds so obvious now, but it was like she dropped a cartoon piano on my head. Colour me stunned.
Diagnosis & Realisation
I have always had a healthy respect for logic, and the logic of what she had said was clear. So I went about getting diagnosed. It was weird, I got to a point where I was afraid both that they would diagnose me and that they would not. Cognitive dissonance is not just for neurotypicals, it seems.
In the end, I went through diagnosis twice, there were 3 clinical psychologists involved in total. In both cases there were a mix of interviews and tests. The second spoke to Bob as well as to me, and gave me homework ones to answer. All parts of it felt like being pulled through a mangle. It was very hard to keep the mask down, to give the full and truthful answers, and not give the automatic responses needed to get out of dodge. The automatic responses say ‘no, I’m fine thanks’. I went for a second diagnosis because I did not feel confident in the first. At the time I told myself it was because there were some formatting issues in her report. Now, I think I just wasn’t ready. All confirmed a diagnosis of Autism Spectrum Disorder (ASD). Apparently it would have been ‘Asperger’s Syndrome’ (AS) until a couple of years ago. AS has been merged into ASD in the most recent diagnostic manuals so no longer gets diagnosed. Kate was not surprised, and neither was Bob. Despite everything, I think I was. Autism is not an easy label to accept. But I have gotten to the point where as an academic I have to say the evidence is quite conclusive. I am autistic.
I discussed my list of reasons why I can’t be autistic with them all, including Kate. Really, if I am honest this list of reasons is actually a list of why I do not ‘look’ autistic. Good communication skills, loving novels and hugs, having a job, a home, a car, Bob and baby. And getting this far without any diagnosis. They were all sympathetic when they explained that it just is not that simple. That the cost of masking, of my own expectations, of keeping this up this way is taking its toll. This is what causes so much of the spiralling, the shutdowns and my depression.
Pennies drop, mind blown. The effort involved in denying myself is damaging me. Specifically denying my autistic self is at the heart of so many of the issues that break me. The very issues I had set out to solve. My self-defence is hurting even as it helps.
That’s all very well, but what now?
This is the hardest part. It has been a hard road so far but at least there were signposts.
So much makes more sense now. I can look at past events, and understand why I reacted the way I did, even if I cannot yet forgive myself for it. I understand so much more now. That is not to say there are no negatives I am now second guessing myself at meetings and in how I interpret people’s actions. Worse still, I have a seed of doubt as a parent that was never there before. 30+ years of interalised abelism is not proving easy to overwrite.
In the balance it has been positive. My challenges are real. I am not just a terrible, selfish, lazy person who is too deficient to function. The knowledge of that is like a balm to my brain. There is a whole community of us where my way of thinking about things is not considered bizarre. A community of people facing similar challenges, with better solutions. Knowing all of this, and knowing myself, knowing there is a path forward. It represents a sense of freedom, and relief, that has no words.
Unfortunately, this is not television, where the simple realisation means everything is magically better. There is so much more to do and to figure out. Firstly though, I think I need to figure out what is me and what is mask, to figure out my autistic self.