Reflections six to eight months on…

Because it’s taken me two months to write this…

Assessed and confirmed autistic with ADHD earlier this year, integrating the identifers is an ongoing process which hasn’t been plain sailing.

Photo by Tim Mossholder on Unsplash

I was identified as autistic earlier this year. Or rather, I had an assessment with a psychologist earlier this year, who officially confirmed my identification as a human with a brain someone decided at some stage was one that should be known as autistic. I first worked out for myself I was autistic and shared with a few people a year earlier.

Is pursuing assessment worth it?

I had a call with a friend of a friend a couple of months ago. She’d been chatting about neurodiversity to my partner at a mutual friend’s birthday party. Steve told her I was autistic, passed on my number and after several texts, we agreed to speak. She thinks she is autistic too. She wanted to hear about my assessment, wondering if it’s worth pursuing for her. I had to say at the time, “I’m really not sure either way”.

At the time of starting to write this blog it had been six months since my assessment and I was still struggling to know what to do with it; what it really meant. I wasn’t yet able to claim and own the label. 

At first, when I got the confirmation from a professional I felt brilliant. Read what I wrote at that time here. Validation. A sense of belonging. A feeling that everything suddenly made sense. I wanted to claim the label. I wanted to help people gain understanding and to help parents and autistic children know that everything was going to be ok.

Then came the doubt

What if he’s wrong? What if this is all down to trauma? What if he has a political agenda and finds that everyone who comes for assessment is autistic? What does this even mean if ten years ago I wouldn’t have been given the label, but now the goal posts have been moved, I do get it? Why does getting the sticker make a difference at all? What difference does it make? How can I tell people that I’m autistic when I don’t have learning disabilities? Does it even matter that I am? Do I have to tell anyone? Why would I want to hide it?

This was all coming from inside my brain: the person who decided after extensive research that they were autistic and arranged an assessment to confirm or deny. I chose Dr Wenn Lawson because he is an expert in autism in adult women and then, when he confirmed, sent him multiple follow up messages questioning his expert opinion.

Is this autism or anxiety?

Is this a part of what makes me autistic? The level of detail I go into? The overthinking and constant questioning? The overactive, analytical brain? The attempt to process in minute detail when I am with a person or persons, every look, every sense, every word, every almost imperceptible change of tone, or twitch of an eyebrow, everything that I can attempt to read between the lines of? Even if I can’t access the answers. The fact I have to veer conversation around to what I want to talk about and talk at length about it, getting everything out that I know? Or else, very consciously hold back. Social awkwardness, being particular about the way in which things are done, resistance to hugs and small talk, a fondness for beige food, the same meals, the same songs, the same films over and over. These are fairly common experiences which aren’t neccessarily indicative of a neurological difference, surely?

Am I a fraud?

My inability to own this identifier - where does this come from? I feel a fraud. I feel I can’t claim ownership of a label which for some people has so much more of an impact than it has had on me. I’m thinking of those who are non-verbal, those for whom masking is more difficult, who have associated learning disabilities or physical disabilities, whose behaviour or even presence is deemed by society as unacceptable, those who are shunned, laughed at, stared at or ignored. Immediately asking myself how I can be so arrogant as to assume what a person’s experience of their life is like without asking them? Is it their differences and disabilities which cause problems? Or society’s lack of acceptance and accommodations for them? Perhaps it’s both.

The privilege problem

I don’t want to be a “poor me” middle class white person desperately crying out “I’m marginalised too”. This has been a huge barrier for me in accepting and integrating this identifier. I’m aware of my privilege in being able to access and afford an assessment, in being believed, in being listened to by school staff when I express my thoughts about my own children. This is not true for those from marginalised communities and it is something that makes me very angry. Advocating for neuroinclusivity and disability rights is not a carte blanche for refusing to engage with anti racism work. All social justice is interlinked.

Understanding masking

The call I mentioned was with someone who has worked with autistic children across a variety of types of clinical environment (still questioning her own belief that she is autistic, hence the call with me and consideration of assessment). She explained that some of the things around autism that the general public are most worried about when they think about what they know about it, are typically associated learning disabilities. Often people don’t realise that though these can be associated with autism, they are not strictly autism.

Then there are many autistic people (like me) who don’t have disabilities or difficulties that would be noticed externally - I did well academically, had friends and relationships - but masking (adapting behaviour to a neurotypical world which doesn’t seem to make logical sense) takes considerable cognitive effort. This effort results in exhaustion, anxiety, depression, meltdowns, burn out.... All things I’ve repeatedly experienced throughout my life in varying degrees. Not to mention the low self esteem associated with how hard one has to work to understand everyday life, social interactions, arbitrary hierarchies, whilst everyone else seems to just “get it”.

Defining characteristics don’t seem to fit

It's been hard for me to get to the bottom of what this diagnosis means for me because I am highly adept at masking. This is much more common for females and AFAB people and it’s been pretty challenging to unpick! Because of this it seemed to me that many of what are considered to be defining characteristics of autism didn’t neccessarily align for me.

As just one example, eye contact: I had thought autism meant not being able to look people in the eye so it couldn’t possibly apply to me. I am great at eye contact! Or so I thought…. Who even thinks that - “I am great at eye contact”?! I realised that what I do is intently stare at people’s eyes at all times when they are talking and have to make a conscious effort to look away every now and then so my levels of eye contact seem natural. But it’s not natural for me. It’s very considered. And that’s tiring. This is one example of masking.

But you can make eye contact

Yes, I can. As well as being female and therefore more adept at masking, eye contact is something I suspect could have been drummed into me at home. I can’t be entirely sure because my memories of childhood are extremely limited, something I know from my studies is likely a sign of the significant everyday trauma autistic children experience being conditioned to conform to neurotypical norms.

Early on in secondary school, I was considered to have an “attitude problem” partly because when I was reprimanded I would look directly into a teacher’s eyes and nod in an attempt to illustrate how intently I was listening to what they had to say. Apparently I should have been bowing my head and looking at the floor or something. I don’t know, I didn’t get the memo about the appropriate way to show deference to my superior in the completely made up hierarchical structure. I didn’t know the unspoken rules. I still have problems with the fact that even when the rules are spoken, they so often crumble under the slightest of questioning. Why are older people supposed to be respected and listened to by younger people without question, but not the other way round?

Since getting my assessment, working with a coach/therapist and slowly accepting I’m autistic, I’ve noticed I am much more comfortable (and slightly less tired) making less eye contact. The more comfortable I am with a person, the less eye contact I make. It’s a relief. This is one example of the process of unmasking. I’m still unravelling it all. I expect I will be for a good while yet.

What now?

Two months ago I wrote this:

“I don’t recognise myself as someone with a disability. I don’t recognise myself as someone with superpowers either. I am a human with a brain slightly different to some other people. But that’s true of absolutely everyone in the human race. I might be unique, but that isn’t special or remarkable.”

This is still pretty much true, though I have begun to see how my difference at times has been utterly disabling - the university years for example, and early motherhood - and this can vary within a single day or week. From what I’ve been told this might be a defining characteristic of being autistic and ADHD; often short-lived, but intense highs and lows which are sometimes mistaken for bipolar.

Then there are the characteristics of autism that are really enjoyable for me, like hyperfocus. Even when I can recognise I’m off on one and so engrossed in something I’m ignoring everything else - not ideal for those around me - I love the feeling of being so utterly taken by something. It feels amazing.

Acceptance, finally

I’ve been struggling to know how to tie this up in a neat bow and end this blog. It felt fitting I finish it now because just yesterday I finally felt ready to email the psychologist who assessed me back in March to press go on getting my assessment report officially added to my medical record.

I’m not making a fuss. I’m not being dramatic. I’m not over sensitive. I’m not selfish or difficult or weird or rude. I’m autistic. And I feel pretty good about it.

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