Thursday, June 29, 2023

What it feels like

I am living my life, enjoying the summer, my baby grand-daughter, cycling, painting, planning our next Refugee Hospitality Day, and my brain is devoid of things to tell you that might entertain you. I was just looking back on previous posts to see if anything inspired me and I came across this one by Dave that he wrote during lockdown. you enjoyed his last one about Cousin Doreen, I thought I'd repost this one, because it is so enlightening about what it feels like to be an Aspie.


Tell me how does it feel to be on your own …

You know those notices in the back of cars ? ‘A dog is for life, not just for Christmas’ ? Well, ASD is a bit like that. If you have autism spectrum disorder, it’s important to make friends with it. It is going to be there every time you wake up, and stay with you whether you are cleaning your teeth, fixing your bike, clearing out the shed, or trying to make sense of Wittgenstein.

I get on pretty well with ASD. I mean, OK, I am odd. But that’s fine. Lots of people are a bit odd. It’s just that I am consistently odd. I understand being odd. It’s ordinary people that mystify me. The stuff they find obvious is the same stuff I have to work hard to learn, figure out, think about how to apply. And that’s the problem. I might get to understand what it is to be normal: I can never hope to feel it.

The pandemic and extended lockdowns, even the only-faintly-lunatic tier system, have all taught me about what it must feel like to be normal. It’s rather like a tourist poring over a map of some place s/he is never going to visit.

Full disclosure. Lockdown has been a doddle for me, I could keep it up forever. It has not been a strain or a challenge. It has posed a new set of problems to solve, but not much more than that. This isn’t a cruel and insensitive boast, and it is certainly not a skill, talent or even virtue. It’s simply that my genetic quirk which disqualifies me from living a normal everyday life, equips me perfectly for the rare and extra-ordinary circumstances of an unimagined lockdown.

This aspergery insouciance is not because I don’t care: it is rather because what normal people have experienced in lockdown has been more or less my daily experience since I first fell out of a high chair. It’s just that neurotypical people have not realised that the pandemic has gifted them a perfect insight into the fairground mirror which is ASD.

In lockdown, normal people have been depressed in an undulating sort of way. A kind of tidal surge of feeling OK and sad. As far as I can make out, reasons for this saudade sort them into categories (ASD alert: categories do it for me):

  • Those whose activities are hampered (swimmers, table -tennis freaks, ballroom dancers, tourists and travellers)
  • Those whose jobs have become tricky (all those forced to work in lousy conditions without PPE, shopworkers, unappreciated postal staff)
  • Those whose chief delight is social activity (party-goers, pub quiz afficionados, those who like clubs, gatherings, meetings, random acquaintance)
  • Social specialists (who miss mainly family, intimate friends, confidantes, grandchildren)
  • Transgressives of all stripes (Like the unfortunate married fireman driving forty miles to visit his mistress, both of whom were taken to task for not wearing masks in the car. Think of that.) Amongst the transgressives, internet scammers seem to have found lockdown to be a rich vein of opportunity. Their tide had been permanently in.

What has been helpful is that people in one, some or all of these groups have been explaining explicitly what the problem for them is. They tell me why they are missing grandchildren, or why it is frustrating to contact people only through zoom. They miss so much that for them is normal. And mainly what they find normal is connection. This has flicked on a light-switch for me.

Apart from the obvious oddness, the serial obsessions, the strange compulsion to make 23 of everything, from omelettes to macrame pet beds, from obscure Japanese carpentry to proliferating coffee tables, yes, apart from those, we ASD crew are odd because we don’t make the kind of connections with others that you do. We live behind a sort of glass screen. We see connections others make, but can’t feel them.

For some weird inexplicable reason, just occasionally in a lifetime there is a sudden connection that ASD people do feel, but it isn’t the picking-up-friends-like-fluff-on-a-coat experience of normal people. Usually, we hover uneasily between wondering whether someone is a friend or merely an acquaintance. And we have no way of knowing. Our wiring doesn’t pick up the signals. It is like trying to get Radio 4 on a toaster. You can twiddle the browning knob all you like, but you will never hear Melvyn Bragg pop out.

This is why the brain cell committees are so active, permanently trying to assess the data to figure out if person X might be a friend, or what you might be expected to feel about a favourite aunt.

I think I love researching family trees because it is a sort of Facebook for dead people, and there is no chance of being sucked into Facetime[i].

Like a cat, I tend to live in a permanent now. When Sue goes away, I eat what is in the house until it’s gone, then don’t think too much about getting more. If it’s there, fine. If it’s not, also fine. This is the same for almost everything. My brain cells tend to focus on the immediate environment, and do not worry their little heads about what might or might not be out there beyond it.

And come lockdown, there is no discernible difference, of course. For normal people, lockdown stops their sense of connection, just as a pillow over their face would stop their breathing rather than be merely inconvenient in a sotto voce way. For me, lockdown is a great leveller. Now nobody feels connected, and I feel unexpectedly normal. It’s weird to find everyone in the same boat, my boat that is usually deserted.

ASD is a social disease (in the nicest way possible, naturally). Clubs, gatherings, parties (aaarrrggghhh, PARTIES) fill me with alarm. Social interaction is both exhausting and unfulfilling. It leaves me with a committee of brain cells working day and night for weeks on end trying to figure out what this meant, or why that person did this.

The absence of social quandaries is almost tangible relief. But now I can suddenly see that normal people actually do derive some sort of pleasure from ‘doing social’, and the degree of pleasure is more or less commensurate with the sense of loss. Ah, now I get it.

The pandemic is a chance for every normal person and ASDer to trade experiences in the interest of enhanced mutual understanding. Thanks to lockdown, I understand a little better how you feel, and maybe, all unawares, you really feel how I feel. A gift. Who knew ?


[i] No ASD person could have come up with the idea of Facetime. It is terror in your hand, an inexplicable confrontation with the failure of intimacy. It is certainly not connection magic. I feel more bewildered and distant after a bout of Facetime than before. Yes, I did say ‘bout’.


Lina said...

Dave has written a wonderful insightful post that is kind and thoughtful. Please pass on compliments.

Anonymous said...

I have had to look up Saudade - it’s a great word -(according to wiki, they have a day for it in Brazil which is 30th January) . As a keen player of the Reader’s digest’s “know your word power” , I don’t remember encountering it.

Thank you for this post both of you - those with ASD, and those who support them, need the language to describe their experience, which is why I took my 39 year old daughter to the Autism show in Birmingham last week. In one of the three theatres, all the speakers had ASD, we heard a woman speak who was diagnosed age 41 as recently as 2021 . Knowing more about what it is our daughter has, and reflecting back on some things that didnt go so well as she was growing up and making sense of them is an ongoing process for both of us. The more I learn from articles like this helps me know how to relate to (have patience with, approach differently, have appropriate expectations of) all those with ASD in our family. Our Grandson with ASD age 14 has just been told that his second, secondary school do not feel it is the best place for him. I do not know what the future holds but this I do know its going to be tough.

Thank you for sharing. Jenetta

Sue Hepworth said...

Thank you girl your comments Jenetta and Lina.

Jenetta - I wish I had known all I know now in the first 20 years of our marriage. It would have madecduch a difference. But we’re still together, and it’s 53 years this August. 😊 I think we both deserve medals.

Sue Hepworth said...

Apologies for typos, friends.

That should have said "Thank you for your comments Jenetta and Lina."

and second para - 'made such a difference.'

Anonymous said...

Thanks to Dave for sharing this. It is a revelation and very helpful in understanding how my 7. Yr old grandson negotiates life in his case with ADHD Dave is an inspiration! I appreciate his writing so much. His previous account of the great trials his war damaged dentist experienced will stay with me and wrenches my heart
With gratitude