Part 47: Opinion ≠ Experience

Hello, and welcome back to The Autistic Writer. How are you all doing? I’m managing to type with two hands, although still in some pain with my shoulder. I did get my pain-killing injection though! Did it go without a hitch? No! If I wasn’t such a materialist determinist, I’d swear fate was trying to wind me up, sometimes. I was due for a 10:15 appointment on Tuesday at a clinic just a few minutes walk from where I live. Ideal. Although I was looking forward to getting the injections and some pain relief, I was also stressed and anxious. Even though the clinic was close to my home, due to the fact that I couldn’t mentally picture exactly where it was (and I’d had no time to reconnoitre it), I was anxious. It’s an autism thing.

On the morning of the appointment, I got up early, and had a slow breakfast, chilling out reading tweets from ableist people telling autistic people how to be autistic. *sigh* At 08:15, the phone rang. Someone telling me that my appointment for this morning had been cancelled. As soon as the words, “Oh, noooooo,” ejaculated from my mouth, but before I melted down, the caller pointed out that there was another appointment available across town, at 09:30. “I’ll take it,” I gratefully gasped. That gave me one hour and fifteen minutes to get across town, but I was still in my jimjams, and hadn’t yet had my, erm, morning constitutional. Sudden changes in plans are like poison to me. My anxiety levels shot through the roof and circled the house, cackling like the Wicked Witch from one of the compass points of Oz. Fortunately, I had someone to give me a lift to the new venue, and I made it in time. Being late would have been cataclysmic for my mental state, because I don’t do late, dammit.

During the journey, I had convinced myself that when I got to my appointment, the relevant physiotherapist would say to me something like, How can I help? and when I explained my appointment had been rearranged from another clinic, I would be told, Oh, there’s been a mistake, we don’t do the injections here.

On arrival at the clinic, feeling suitably sweaty and stressed, I approached the desk, to be greeted by a lovely receptionist who had the most rich and complex east European accent I’ve ever heard. It was like beautiful music, but I couldn’t understand a word of it, because when my anxiety peaks, my ability to process sounds diminishes correspondingly. Add to this the fact that I was babbling a bit, and the conversation was heading into Fawlty Towers territory. I finally made myself clear, and managed to work out that the receptionist was telling me that I couldn’t have an appointment there because it was a walk-in centre. Beads of sweat pearled on my furrowed brow, and we eyed each other like duellists in a spaghetti western, until I added, “It’s physio.” The lovely receptionist sighed with relief, and directed me to the next floor, where the reception desk was… not staffed. I was steaming more than Phillip Jeffries in season 3 of Twin Peaks (niche pop culture reference, and I make no apologies for flaunting one of my special interests – I’ve earned it).

I waited, still expecting the worst. Fifteen minutes later, I was greeted by a friendly physio, and from there, everything got better. He was expecting me, and he was going to give me the injections. Not only that, but he was extremely thorough, highly competent, knowledgeable, patient, and considerate. I barely felt the needle scratch my skin. Result.

I didn’t feel any benefit from the injection until Thursday, at which point the pain reduced significantly, and I got a massive boost to my range of movement. Sadly, on Friday, the pain got a little worse again, but at least range of movement continued to improve. At the time of writing, I am still in pain. I have a feeling that this situation is far from resolved. I guess I’ll find out, one ache at a time. Moving on.


Rarely a week goes by when I don’t encounter someone who isn’t autistic telling autistic people what autism is, or what it’s about, or what the autistic experience is. Most of it is online, as was a quite annoying one on Twitter this week. I’m not going to screenshot the tweet, because I think the person who wrote it is going through some struggles of their own, and I don’t want to add to their problems with public naming and shaming. But the person, let’s call him Tarquin, basically said he was irritated by people who seemed to be living “reasonably normal” lives but claimed to be autistic. Tarquin’s suggestion seemed to be that people are lying about being autistic if their experience doesn’t seem to him “severe” enough. Tarquin also put forward the “firm view” that Asperger’s is “very different” from autism. It’s difficult to know where to start dealing with damaging opinions like this. My first reply was to ask Tarquin if he was autistic. The reply came back in the negative, which just made it worse. Tarquin indicated he was having a struggle in life, and so I didn’t want to get into a war of words. But you can’t leave stuff like that unchallenged, either, because the view is harmful. Plus, Tarquin then got into a Twitter war with a couple of other autistic people, and made some really crass comments.

I applaud anyone exercising their right to freedom of expression, even when they are badly wrong. John Stuart Mill is my model on this subject. But people exercising their right to free speech must understand that the same freedoms give other people the right to reply. My challenge to Tarquin came in a form I’m increasingly finding effective when you need to make a solid point in the fast-scrolling online world:

But here and now, in this blog, we should probably look at some of the key points around Tarquin’s opinion, because his tweet, and opinions like it, are out there in their numbers, spreading misinformation and perpetuating attitudes that are at best silly, and at worst downright dangerous.

I’ll start by repeating something I’ve said many times before: Each autistic person’s autism is as unique to them as a fingerprint. No two autistic people have the same autism. You cannot judge the validity of one person’s autism by comparing it to another person’s autism. All autistic people are valid. Each autistic person’s autism is valid. To say otherwise is ableist discrimination.

Now let’s talk about severity. The nature of autism is that any autistic person living on this planet is going to have struggles and difficulties in life. If you speak to any autistic person, you will find that there are certain environments, events, and situations that they find unbearable. This is the alienation factor, or as I often put it: Autistic people live in a world made by neurotypical people, for neurotypical people. This world has triggers that make life extremely difficult for autistic people. A classic example is sensory issues. I spend much of my time in an environment that is a living nightmare for my sensory processing. In years gone by, before I was identified as autistic, and before I even knew what autism was, people would have seen my behaviour and described me as bad-tempered, grumpy, and so on. These days, I understand I’m being triggered, and I try to let people know what is happening. Even so, I still get called grumpy sometimes, and often it’s easier to just go with it, because it takes energy to explain to people that inside you are suffering badly. And this is a key point. Outwardly, I might not look like I’m struggling. But inside, it is often hell. Why don’t I show it more? Well, that would be a lifetime of ingrained, unconscious masking in order to fit into the aforementioned world of neurotypicality. My difficulties when I was an undiagnosed autistic person trying to cope with the neurotypical world led to severe depression and anxiety. How severe? Suicidal severe. So it pisses me off when someone tries to say my autism isn’t that severe, because I’ve lived, in some fool’s opinion, a “reasonably normal” life. Nothing about my life, ever, has been reasonably normal. It was all an act. It was all masking.



Compare my situation with a small child who has been definitively identified (diagnosed) at a young age. This child has terrible sensory issues, leading to traumatic meltdowns that they can’t articulate. The parents will naturally be upset, traumatised, and exhausted by this situation. They see the outward behaviour of their child, and characterise it as “severe”. They assess the impact on their own lives, and see that their lives are not “reasonably normal”. And then they go online and see people in the #ActuallyAutistic community talking openly about their experiences, and assume that we have experienced no severity; that our lives are “reasonably normal”, and therefore that we cannot really be autistic, because we are not in their house screaming the walls down. Actually, as a child, I did a fair bit of screaming the walls down. But these autism parents weren’t there to see it, so I’m not autistic enough for them.

The irony here is that non-autistic parents of autistic kids in the scenario I’ve described would engage a lot of support and advice from actually autistic people if they took the right approach. The best way for any neurotypical person to develop an understanding of how to interact with autistic people, including their own children, is to speak to autistic people. But we will challenge the behaviours and attitudes of non-autistic parents of autistic kids if we believe those attitudes and behaviours are harmful. Speaking as an autistic person who is a parent, and who lived many years masking as a neurotypical, I give this advice to non-autistic parents of autistic kids: Come and speak to us actually autistic people. Come with a bit of humility, be willing to learn, be willing to have your internalised prejudices exposed, and we will help you.

On the subject of raising kids, I have a fantastic relationship with my son. We have an amazing connection, which many people have commented on. Some of my son’s friends have indicated that they wished they had that kind of relationship with their parents. People I know have often made similar comments to me. It baffles me that so many people have difficult relationships with their parents and kids. What makes my connection with my son so special? Well, apart from the very natural affection any family should have for each other, I put a lot of it down to me paying attention to the traumas I experienced as a child. Stuff that many kids will just get over, or be told to grow up about, I internalised. This was largely because of being autistic. What it meant was that I vividly remembered all the difficulties I had as a child, and was receptive to anything I felt my son might be struggling with as he grew up. But it wasn’t only about spotting problems. I recognised the need a kid has to engage with their parents in meaningful ways. I never wanted to create a distance between us. If my son was excited about a new toy, or a new book, I got excited about it with him. I wanted him to know he could come to me with anything. If he was out of order, he’d get a telling-off. But he always knew he was loved, and just as importantly, he knew he was respected. Yes, you read that right; respected, even as a small child. His opinion mattered. His feelings mattered. What he said was relevant and important. Many, many parents will harrumph at this, and say of course they love their kids, and of course their kids matter. But the evidence in so many of the difficult parent-child relationships I see suggests something there isn’t right. The type of relationship I have with my son shouldn’t be the exception. It should be the norm. My opinion on this, like everything else about me, is inextricable from the fact that I am autistic. There are many areas of life in which neurotypical people can learn from autistic people, and parenting might well be one of those areas.


You can find The Autistic Writer on all your favourite social media channels


Instances of non-autistic people telling autistic people what autism is, and spouting misinformed opinions about who is or is not “severe” enough for them to qualify as autistic, are common. I don’t know how they come to the conclusion that they can make such judgements.

To really understand the autistic experience, being autistic is a necessary condition. However, speaking as someone who didn’t realise he was autistic until he was past the age of fifty, I can say that while I could have spoken at length about my life experience, traumatic as it was, I wouldn’t have realised I was talking about an autistic experience. So, even though I was autistic all my life, I didn’t understand autism before my diagnosis. I’ll take that a step further. Even when I found out I was autistic, all I really had was a label. I still didn’t understand the autistic experience because I hadn’t yet put my previous life experience into the context of autism. Shall I go yet another step further? Even when I started finding out what autism was, I still went down some blind alleys in my search for true understanding. So what hope does a non-autistic person, who has not lived the autistic life, have of understanding autistic experience?

Even actually autistic people might find it takes us a while to get our heads around autism once we find out we are autistic. For me, two years after my diagnosis, three and a half years after I really began to think I might be autistic, and six years since I first suspected it, I am finally beginning to really understand the autistic experience. But that’s just me. I suspect there will be other autistic people who have had a similar learning journey (please comment on the blog), but there are probably others who gained insights much more quickly, deeply and efficiently than me – especially those who have maybe known since childhood they were autistic. But one thing is certain; people who are not autistic do not understand the autistic experience.

Even a broken clock is right twice a day.

Interlude: A brief message

I will never put this blog behind a paywall. I want anyone, anywhere, to be able to access this content at any time. There are costs incurred running this website, however. So if you like what I’m trying to do here, please feel free to show your support with a small contribution via buymeacoffee.com. Okay, back to the blog.


When expressing opinions about autism, or debating the autistic experience, it is wise to pay close attention to any autistic person who wants to communicate about it. Some of us find various forms of communication extremely challenging, so if we make the effort, we really deserve to be taken seriously.

If you are not autistic, I don’t care what training you’ve had, what courses you’ve taken, how many autistic kids, relatives, or friends you have, or how many autistic people you’ve studied. You do not personally understand the autistic experience. By all means, have your opinions about autism. But be prepared for autistic people to challenge those opinions with their own, more informed, view.


That’s all for this week. Until next time, take care, be good, stay proud.

Darren


You can find The Autistic Writer on all your favourite social media channels


Why Do I Write This Blog?

When I first found out I was autistic, I was a middle-aged adult and I knew nothing about autism.  I quickly learned that there was a serious shortage of information and resources for adults in my situation.  With this blog, I aim to inform about autism and autism-related issues as I learn, hopefully helping people who are on a similar journey of discovery.  Like anyone who writes a blog, I want to reach as many readers as possible; if you like what I’m doing, please share it with your friends and followers.  I will never hide this blog behind a paywall, but running the website does incur costs. If you would like to support, feel free to make a small contribution at BuyMeACoffee.Com.

You might also be interested in David Scothern’s blog, Mortgage Advisor on FIRE, which covers a range of topics including mental health issues and financial independence.


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