Prior to seeking my diagnosis, there was a question or two about why I think I need a ‘label’, why I’d pay that much money if I’m so sure I’m aspie and whether medicalising different shades of normal neurodiversity is helpful or even advisable.
Recently, I’ve even seen some serious vitriol against people advocating – or seeking – diagnosis.
Adults are getting diagnosed so much more frequently now because as the understanding of autism is broadening, our children are being diagnosed. And our children’s issues are excruciatingly familiar to us, and the more we read about autism, the more familiarity we find, and the more we realise that our own childhood struggles can also be explained by these same neurological differences.
But here’s the thing. Autism is not a stigmatising box to pack people in. It’s not a fashionable label to explain away bad behaviour or poor parenting. It’s a group of neurological differences that affect the daily life of the person who has them, whether or not they have a diagnosis, and whether or not they have learned skills to cope or to mask their difference. But if you accept that autism exists, even if you believe it to be part of normal neurodiversity, why would having an assessment and a diagnosis be inadvisable? This paints autism an undesirable label, which you can avoid being stuck with by ignoring it and minimising the challenges it can bring.
The question of whether or not a diagnosis is helpful – this is a different question.
When I first brought up the idea of me getting assessed with my son’s ASD-specialist psychologist, she asked me to go away and think very hard about why I wanted a diagnosis, and what I thought it would do for me.
That was a hard question.
Hard to hear, because I really just wanted her to say “I can tell you now, you probably are. You don’t need to spend all that money to confirm something so obvious.”
Hard to think about, because the reasons seem to be buried so deeply inside me that I don’t really know how to begin to articulate them.
All I could really come up with was “I just really want to know”.
I’ve been thinking about it, though, and here are some of the things I’ve been exploring.
It could be that I want an excuse for when I stuff things up socially.
I do that sometimes. I’m assured it’s not just an ASD thing, but there are times I have no idea what I’ve done wrong, and I’m *expected* to know. People seem to be fed up with me, but – as I learned in the playground in primary school, people don’t *want* you to ask. They want you to already know.
I keep hearing that most people have an intuitive sense of how to act in a socially appropriate manner. That was so very untrue for me as a child that I admit to really rather doubting it for everyone. However, if untrue, I have taken a long time to learn them. Every social convention, from eye contact to asking about someone’s holiday is a learned program that I expend energy on maintaining. My mind is constantly racing ahead, cognitively processing every aspect of the interaction. “OK, we’ve talked about me for three sentences now; it’s time to ask about them.” “Do they appear to be comfortable with how I’m looking at them?” “Eye contact. Too much?” I am pretending to be a social being; imitating the social conventions I see around me.
The trait of “creative imitation” is common to many girls with autism, and can also be seen in some boys on the spectrum. Waiting till you work out the rules before joining in; copying or imitating the person you think is the most successful in the group; these are ways we survive.
I feel like I’ve faked fitting in my whole life. I am comfortable in many different groups – as long as you don’t scratch too hard, question too deeply, push to find my weaknesses. I feel like an anthropologist – out of my own setting and observing yours. Or theirs, depending on how you identify yourself.
I have to live in this social world, and if I don’t make accommodations for the needs of other people, I will get hurt. Or you will, through my inflexibility.
I admit it can be hard at times for me to judge the boundaries between speaking ‘the truth as I see it’ and being rude, so I usually choose to err on the side of not hurting people. Sometimes I’ll write out my thoughts and ask someone I trust whether it seems appropriate to say it (or send it); mostly I just delete it.
There are still times I mess things up. I learned recently that I lost someone I’d considered a reasonably close Facebook friend because I was rude. I honestly can’t remember what I said, which doesn’t make it any better for them or for me, it just makes me seem more insensitive.
I’m not a huge fan of ‘I couldn’t help it’ as an excuse for being insensitive, though. Nor even, ‘that’s just who I am’. When other people say things like this, I fume.
- “Sorry you took that badly; it’s just the way I am. I say what I think.”
- “I didn’t mean to hurt your feelings, but you know I’m autistic so I guess you’ll just have to deal with it.”
Honestly, I don’t need or want an excuse for social solecisms. People will always judge on outcomes, not intentions. It has taken me a lot of years to learn to apologise without trying to justify myself, and I consider that of more worth than an excuse.
It could be because the label explains so much that was there anyway.
Labelling something doesn’t give it any new properties. Recognising your experiences in a label or diagnosis doesn’t change who you are. When I sift my life through a filter-screen of “how autism affects people”, very little of it is left unexplained on top of the screen.
Looking back over my childhood, I always felt like an outsider. This is so common amongst autistic people that it’s a cliché. Different, missing something, watching from the outside; feeling in social situations like someone too scared to enter the skipping rope’s arc. And when I did run in – the rope hit me.
I *knew* there were rules to help you make and keep friends, but nobody would explain them to me. I’m not sure anyone else would have even acknowledged there were rules, except when I broke them. Because I “should have known” how to act.
I chose to complete a science degree that I knew I would never use, because Uni was a comfortable place, and I felt safe there. After I completed this degree, I chose to work in aged care because most of the work is in the form of doing concrete things that help people, and because there is a level of acceptance among older people for the vagaries of younger people that just isn’t there with your own age-group. Later, I completed a nursing degree and worked in palliative care, because there’s always something you can do to make people a little more comfortable. I felt like I was doing something worthwhile, I felt valued, and there is a routine to nursing that never changes, even on Christmas Day.
I have always struggled with sensory things. I have never been able to tolerate bright sunlight. The day I discovered polarised sunglasses will remain as one of the highlights of my life. It meant I could drive.
I have always struggled with food textures and smells; I’d sit with my cold dinner till dark, waiting for a chance to hide the pumpkin. Nobody ever managed to make me eat tripe.
I never knew when my voice was too loud; I would increase the volume to feel as if I was being heard, which probably didn’t encourage people to listen. Constant noise like a fan or the buzz of a clock-radio still makes me edgy.
I like predictable touch – deep warm still hugs, not light, rubby or patty ones. I also like sharp touch – when I’m under stress I find pulling my hair reduces it. This was my motivation for ‘cutting’ when I was a teenager; fortunately that compulsion has gone. Other people have said ice or ice water gives them this sensation of sharpness, or snapping a rubber band on their wrist.
If I was trying to avoid the label “autism”, I could just accept these things as being a jumble of unrelated aspects of myself. But if I was trying to avoid the label “autism”, it suggests I believe there is something wrong with having that particular label. It says that I accept there is a stigma, and implies I would rather the history of my struggles be a somewhat considerable pile of individual issues than a divergent neurology.
These ‘individual issues’ fit a pattern, though, and anyone who is familiar with the experience of autism (rather than just ‘knowing someone with it’) can see this pattern, if I reveal myself enough for them to know the parts are there. It all fits. And it is very satisfying when apparently isolated facts nestle together to make a larger picture.
It could be because I feel like I’ve finally found my tribe.
Until I met the OH, I hadn’t realised that being around other people could be a comfortable and completely relaxed experience. Pleasant, sure; there were people I could almost be myself with – and the enjoyment I get from their company is precious. but there was always an underlying sense of anxiety. I’ve been lucky in finding someone who is weird in a different but compatible way, and I was pretty sure it was a rare and beautiful thing.
Since finding and chatting with groups of autistic women, though, I’ve realised that my differences aren’t isolating, and my quirks are shared. Weirdnesses and even weaknesses are funny and comforting when others identify with them. Ask any group of autistic people about perfume. Or counting steps. Or skivvies. Not everyone will share all your quirks, but all the quirks you’ve ever been embarrassed about are probably shared somewhere in the group.
Strengths can also appear in a clearer light when you see the same strength in others like yourself. When you see the immense work that goes into maintaining ‘normal’ for someone else, and know that they do it to make others – who don’t understand that struggle – feel comfortable, you see a strong, hard-working and compassionate person.
I would like to share my struggles – and the hope that goes with them – with others who are learning what it means to . I want to be able to say to people who only see their struggles, “you have worked so hard at this all your life, and you are more successful than you have ever before realised. You have been working at maintaining two lives, but in this space you don’t have to pretend.” But I don’t feel I can stand in front of a group and say, “Hello, I suspect I may be autistic but nobody has ever confirmed that.”
My biggest fear regarding an assessment is being told that I am mistaken, that my perceived connection with this tribe I’ve found has just been a construction in my own mind, and is not based on a common neurology at all.
Do I need a label to be authentically myself? To connect with others like me? Of course not. But if a label explains myself to me with more clarity, allows me to know where I need to make changes and seek supports in order to be the best me I can be, there is no dishonour in owning that label.
True acceptance is not about avoiding labels and thereby stigmatising people who hold them, but about accepting autistic people as … autistic people.