A while back I wrote this post about whether it’s worthwhile seeking an autism diagnosis as an adult and came to the conclusion it was worth at least going for a non-clinical autism assessment through an autism charity. The assessment involved a two hour interview with an NAS approved counsellor (with a Master’s in Autism and a PGC in Asperger’s). You don’t get a diagnosis from a non-clinical assessment but you do get a report many employers etc. will accept in lieu of an official diagnosis (for reasonable adjustments in the workplace etc.) and can often be used to prompt a referral for a clinical assessment.
I went for the non-clinical assessment back in November.
To get to the office I had to get a bus, then the tube, then a train and finally a taxi.
Travel and having to be somewhere for a certain time both make me anxious. To be perfectly honest, I could probably write an entire blog post dedicated to the struggles I have around travelling (remind me of this fact the next time I’m struggling to think of a blog topic) but essentially I have no sense of direction, no memory for places, anxiety, sensory issues and social issues and they all lead to travel being a big stressful, scary ordeal.
I managed to get to the right building but between the signs about knocking/ringing on the door, an out of order doorbell, no receptionist and no lights on in the entrance way I ended up anxiously waiting in the cold for half an hour, convinced I’d got the appointment day wrong. I hadn’t, of course, but it gives you an idea of my state of mind when I went into the assessment.
The counsellor was very nice and made me a cup of tea before sitting down to talk to me.
We started talking and she asked me questions about my family and childhood so I produced a couple of pages of headed bullet points my mum had written for me detailing a lot of the signs I displayed through childhood that pointed to autism (since it’s important to establish they have been present since childhood). I also had several pages of notes I’d made, myself.
This was both hugely helpful because, between us, my mum and I had answered most of the questions the counsellor was planning to ask but also a little disruptive because it threw the counsellor out of her usual rhythm.
I had been advised – by online friends who already have diagnoses – not to ‘mask’ during the assessment.
Masking is is when an autistic people suppress many of their autistic habits and instincts and generally act in a way that does not come naturally in order to appear neurotypical. This might include: repressing the impulse to stim, forcing eye-contact (despite it feeling uncomfortable), consciously using more/different facial expressions, trying to analyse the other person/people’s behaviour (which may seem counter-intuitive) etc.). Generally, it takes a lot of work and is draining.
And I tried. I tried to be myself without resisting every impulse and analysing everything I did and said. I managed to stop myself from stopping myself from stimming (confused yet?) but they were still my more ‘socially acceptable’ stims (leg jiggling, fiddling with jewelry etc.) rather than my ‘really autistic’ ones that only surface at home and even then normally only when I’m alone (hand flapping, rubbing my face violently, jumping up and down on the spot, twitching etc.).
And, the thing is, all that masking – resisting or redirecting my stims, making eye contact, smiling at appropriate times, nodding along, varying the tone of my voice and generally just ‘watching myself’ – took up most of my focus and energy. In fact, it so filled my mind that I couldn’t even remember the name of my GP Practice when asked.
This meant I wasn’t on great form for answering questions (especially ones I wasn’t expecting, so hadn’t already answered in my mind when imagining the assessment). For instance, the counsellor asked about my education and employment history. I went over my degree and the few part-time jobs I’ve had. She asked if I’d ever dropped out of education, repeated a year or been fired from a job. I replied in the negative and she explained if I went for a clinical assessment they’d need to show ‘significant impairment’ for an autism diagnosis and the fact I successfully completed a degree and held down jobs doesn’t demonstrate that.
I explained that, while I did get through my degree, it had a pretty big impact on the rest of my life. I developed fairly bad depression and would often cry myself to sleep at 3am every night. I was also so exhausted by all the peopling (though, I didn’t realise that’s what was causing my fatigue at the time) that I’d get home from a lecture and fall asleep on the sofa trying to study because I was so tired.
I’ve never had a proper full-time job. I’ve had part-time jobs where my hours have been increased for short periods (e.g. over the summer) but I have never had 9-5 employment.
However, the following day, after the assessment I suddenly realised I’d forgotten about the Post-Graduate Diploma in Education I started after my degree. I got halfway through the post-grad before dropping out because I couldn’t cope. I couldn’t cope with working part-time, studying and buying a house (Wolf and I were buying our first house at the time). I couldn’t cope with the number of people I had to interact with. I couldn’t cope with having to enforce rules I didn’t agree with (I really don’t give a squanch whether pupils wear the correct uniforms or keep their jackets on in class – I don’t see in what possible way those things are connected to education, which is what I wanted to provide).
I emailed the counsellor to add that information but there were other instances of my competency being a possible obstacle to diagnosis. The fact I shower every other day and clean my teeth twice a day was another sticking point.
The thing is, I am hugely fortunate in the support I’ve had through my life. I was lucky enough to be born to parents who may or may not be autistic themselves (okay, my dad definitely is) but who adeptly manage it. They had each other from a young age and my mum, especially, set up a very autism-friendly household with clear structure and routine. I doubt my mum realised it but she gave me a lot of useful tools for dealing with the struggles I faced due to my probable autism.
I inadvertently learned lots of ways of managing. The fact I even took the notes my mum and I had made to the assessment in the first place was because that’s the sort trick I’ve picked up from my mum. Now I think back, it’s what I’ve often relied on at times of high stress (like when I went to the GP about my depression): some form of written script, notes or a list. I also do it when I have to make phone calls:
Had I gone into the assessment without the notes and actually had to answer all the questions on the spot, perhaps my autism would have been more evident. Had I been left to panic and falter…perhaps it would have shown more. Or, perhaps, without all those examples I wouldn’t have been able to come up with anything at all.
Either way, as we started to wind up I could tell the assessor was reluctant to finish.
My gut turned to ice and my chest tightened (fun fact: I had my first ever full blown panic attack less than a week before the assessment, such was my anxiety over travelling to get there and the assessment itself). My mind jumped to the worst conclusion: she doesn’t think I’m autistic. This qualified autism expert, who is especially sought after by women because she understands the oft-present nuance in the way women can present, thinks I’m a fraud. I’m not autistic, I’m just weird and lazy and rude and useless.
She wasn’t sure. She had some doubts. She said I definitely displayed a lot of autistic characteristics but those might be because I’d been ‘Aspergerised’ by living with autistic family members, in particular my sister who has a diagnosis.
I pointed out both my sisters are much younger than me. I was 12 before the first was even born and most of the examples my mum had written came from way before then.
In the end she told me she was happy to refer to me as an ‘Asperger’s Woman’.
Whilst she could identify the autism in me, she was not convinced I’d definitely get a clinical diagnosis if I went for an assessment.
Essentially, autism assessments are not geared up towards women who mask well. She was particularly reluctant to advise me to have an assessment I would have to pay for since there would be no guarantee I’d get a diagnosis at the end of it.
I’ll admit it: I was gutted. I wanted something definitive.
I don’t cry in front of people.
All the same, I cried.
The assessor was clearly affected by my reaction. She said alongside writing me a detailed report, she’d send a letter to my GP asking for me to be referred for a clinical autism assessment but stipulate she doesn’t recommend an ADOS (Autism Diagnostic Observation Schedule) and something like a DISCO (Diagnostic Interview for Social and Communication Disorders) would be more suitable.
Having spoken to autistic friends it seems the ADOS assessment process focuses a lot on observing behaviour and social interaction. It can often fail to pick up autism in women and girls, who tend to be better at masking. The DISCO method relies more on an interview technique and can better take into account how the person being assessed actually feels and thinks, rather than simply how they act.
So, I got the report through the door. The whole reason for doing this: having some sort of document that suggests I could be autistic.
I haven’t read it.
I can’t bring myself to read it.
I eventually mentioned to my GP about the letter they would have received asking them to refer me for an assessment and he said since we’re moving in a couple of months they wouldn’t refer me as the waiting list is so long. I tried to explain the counsellor told me it was best to get me on the waiting list here and then that referral and my place on the list would transfer with me when we moved but he wasn’t interested.
So, I’m left with no diagnosis and no referral for assessment.
I’ve spent the last couple of months feeling lost. I feel like I was climbing a mountain (a very figurative mountain – I don’t do actual physical exercise) and there was a peak of some sort in view. Now, from my
incredibly limited knowledge of mountaineering I know that you get ‘false peaks’ where it looks like you’re just getting to the top but it turns out there’s a higher summit further along. I was prepared ahead of time for the idea this wouldn’t be the end of my climb, rather somewhere to set up camp ready for the big push to the end. But, I thought I’d be walking out into a clearing: somewhere to survey the surrounding landscape from, somewhere to relax, somewhere to get my bearings for the next climb and instead…I’ve been plunged into a dense forest and completely lost my way. It’s dark and scary and confusing in here and I’m no longer sure I even want to finish the climb but that point is moot since I can’t find a path and have no idea how to either find the mountain summit or find the way back home.
For a long time, I couldn’t bring myself to think about it but I’ve started to pick apart my feelings. Beyond being generally lost and bewildered I feel anxious, trapped and misunderstood. But I’ve realised the main emotion I’m feeling is shame.
I’m ashamed I cried in the assessment and I’m ashamed I might be wrong about being autistic (though, I still don’t think I am) but, more than that, I feel ashamed I care so much.
Autism, it seems, has become a huge part of my identity. I have spent my life feeling slightly apart from things and people. I’ve never I felt like I ‘belonged’ to a place or group. Even when I am ostensibly part of something, I’ve always felt like I’m on the outside looking in.
Until I realised I was probably autistic.
For the first time, I can say I’ve found my people.
Autism fits so very well with everything I experience on a daily basis and it explains every way in which I’ve ever questioned my own thoughts and sensations and how they always seemed ever so slightly off kilter. I now have a group of online friends – other neurodiverse women – who ‘get’ me in a way not many people outside immediate family ever have.
Plus, this blog (which was not conceived as an autism blog originally but became such surprisingly quickly) has been an outlet for me since right back when I first started to suspect Tyger might be on the autism spectrum.
And all that – the identity, the sense of belonging, the friends, and even this blog – feels threatened now. As such, I’ve avoided thinking about it, which has involved avoiding writing. Specifically, I have been avoiding writing this blog post.
So here it is and, hopefully, now I can start to find my way out of the woods.