John L

Age at interview: 39
Brief Outline: John was diagnosed at the age of 39. Although it took him years to become “comfortable” with his diagnosis, it also helped him to be “less angry” with himself. John enjoys reading and writing, and his audience includes politicians and policy makers.
Background: Ethnic background: White British

More about me...

John was diagnosed with autism at the age of 39. As a child, John had an infection in the bone behind his ear. The first surgery he had was unsuccessful, so John had to go through a series of further operations, which caused him much pain. He remembers transitioning from special education to a mainstream school at the time. Because of his increasingly disruptive behaviour, he had to see a psychologist, but the psychologist blamed John’s parents, making them feel “a lot of guilt and blame”. 

John started educating himself about the human condition through psychology readings, which is how he learnt about autism. Although he found many of its aspects “relatable” at the time, it wasn’t until his nephew was diagnosed with it that John decided to go through the diagnostic procedure himself. 

He was not entirely happy about the diagnosis though. With his words, “it meant a lot of work in some ways because you actually have to rethink your past”. He suddenly understood “the lack of relationships, the lack of proper friendships”. It took him 2-3 years to become “comfortable” with his diagnosis, a process at the end of which he accepted that the “darkness” is just part of him, not the “whole spectrum” of his personality. As a result, he has learnt to “let things go” and be “less angry” with himself. John believes that autism is a complex condition and he feels that much of what is labelled as autism is “just people being people”. 

John describes his working life as “hit and miss”. During his university degree, he worked with young offenders, a job he enjoyed very much, he feels that he learnt a lot about people, and it also put his problems in perspective. He continued working in the field after he finished his studies, but his health gradually deteriorated, and he found that he couldn’t continue to “pretend to be normal”. Currently, he spends his days reading and writing. Although sometimes he struggles “to get out what’s going on internally”, his work has a broad audience of policy makers and politicians. His wish for the future is to have more stability, to travel, have a relationship, and be able to be “happy with achievements”.

John L was sectioned when he was younger and was told he was too sane be there by a psychiatrist.

So quite a wide range of things to try and understand the condition, really. Because just trying to help myself understand.

Understand the human condition?

Yeah. Yeah. Because I mean I did find… I did find it very strange, and I mean at one point I did try to section myself, because life was so painful. But that actually turned out to be quite a good experience actually because I mean I actually got to then look at the mental hospital and see people are genuinely mentally ill. And that was sort of a hard moment but, okay, different, not ill. So I knew that much. That sort of 19, 20 - 19 or 20 years old, so. And I, I had a good chat with one of the psychiatrists there, and he said, you know, you're too sane to be in, wanting to be doing this. And it's like 'yeah, yeah'. Although being sane is sometimes a problem. Being [Name] a problem because you have to accept a certain amount of irrationality in, with people. Because that's part of the lubrication of society, is that you have to accept a certain amount of why, of the humorous and …distance and everything else. It's, there's no clear, you know, try to be rational, try to apply things, it just doesn't work for, work. So you have to become more tolerant of that, which I've sort of become calm over time. But it's been a, a long process. 

John L found having to rethink his past difficult after diagnosis and he went through a period of grief and understanding.

I think that it actually. Well it actually meant a lot of work in some ways because you actually have to rethink your past. So in actual fact it actually sort of made me sort of, sort of go through a sort of more depressed period. And actually made me sort of insular to myself which meant, that's not generally very good anyway. So, because I have had sort of depressive episodes. It's a case of looking at how, looking at the past, and also you have to sort of go through a period of understanding but also going through a period of grief, as well. Because you have to sort of give up some stories, have to give up some ideas, and you have to sort of reimagine the past. So it actually takes up quite a bit of energy. It's like a…, it also the diagnosis wasn't that comfortable to accept, initially. So I think it took me about two or three years to really feel sort of comfortable with that. So, you know, it wasn’t… so it was definitely, definitely a process, and it's definitely a process that required a lot of internal introspection. So that sort of generates its own issues, if you go in yourself. You know, there's quite a lot of darkness, and you wonder, and part of me now is that, you know, I can accept that I have those dark parts of me, but that's okay, they're just part of me, they're not the whole, the whole spectrum of my personality, or who I am, they're just parts of what, what is my, my personality and my, my condition. 

John L prefers to think about what is good about being human rather than what is good about being autistic.

Ooh. Positives. This is one of my…,it's the one thing, thing, I think 'hmm, I'm not sure about this'. You see these memes about this type of thing as being on the spectrum, and you think 'Hmm, really? Or are they just, or are you just projecting on what you like to believe, about Einstein, or whoever else? Are you confusing traits with the diagnosis?' Those are different things. And I think there's a difference between having some traits that could be recognised as indicating autism, and having the communication barriers and the social barriers that comes with being, being on the autistic spectrum. And those aren't - you know. So I worry that it’s… the question, you know, so I worry about that sort of thing, where the question for me is about what's good about being human? Not about what's being autistic. And I think that, you know, I think having some distance allows me to think about things. 

But if you look at say, a good example would be the producing of the American constitution. And you've got people who mainly farmed, who made it, you know, so they had a lot of practical things to do, but I had time to think and time to read, and time to understand. And it feels like if anything, we have an increasingly accelerated world, and everything's sort of next minute, next thing, Twitter particularly is a good example of that accelerated input for our media. And it's like, if we just had time to breathe and time to just breathe and takes things in, do the reflecting and everything else, that might actually give you something. So I'm, I'm not quite sure whether what we're talking about is being autistic, or just human sort of traits that we just sort of seem to misappropriate as being special, when in fact they're not really. It's just, you know. If we just stop and breathe and relax, and think, we can try and sort of get an understanding. I suppose, you know, I have an aptitude for trying to learn and think about things. Not everyone does, that's fine. But I don't think that's particularly autistic. I don't think anything of what my skills, abilities and my strengths are, are particularly autism based. They're about my personality as a person. The autism is a part, part of that. But it influences it. I'm not sure it actually is a quality of autism itself. So I'm, I'm still sort of trying to work, work out what autism is, and what it means.

Learning to understand what needs to happen to keep himself happy and healthy has been important to John L.

I think the reason why I think that's sort of important is that I think we've all learned a lot in the last few years, and, in terms of my sister and her two, two of five are on the autistic spectrum. And being a parent and a grandparent, and being able to communicate in a different way. Having more understanding about what it means, and what, you know, understanding what needs to happen in order to keep my health happy and healthy, and everything else, and become more sort of happy and tolerant of my family. And it's sort of that sort of learning thing that I think's the most important thing for me, as an adult with a late diagnosis, is that it’s… again, being kinder, being more understanding. And have more tolerance, of both myself and my family. That's probably the biggest benefit out of having the diagnosis, I think. I just really wanted to sort of emphasise that, as a sort of key thing.

Support workers have to understand John L’s interests and be curious in order to support him effectively.

I had one support worker who I generally sort of had a good relationship with. And she got promoted, rightly promoted to a much more senior role and everything else and that was right for her, absolutely. Unfortunately for me, didn't help me one bit but absolutely the right thing for her. But we managed to achieve a lot in our period of time, but then the people afterwards I didn't really have a relationship with. And then I said - I had to keep saying "No, there's no point you sending people who, you know, I'm not - you know - it's like let's sort out some support that's around talking." It’s like that. You don't understand my interests, you don't understand the things I'm talking about. You're not curious. Go away [laugh]. You know? I'm not interested in that sort of thing, you know? If you want, want to sort of engage with me, it's like, you know, just engage. Just don't. So it's difficult really. I mean, I did do a little health thing that was quite useful, and that lasted a few weeks. Included in that was meeting up with someone just for a walk and a talk, about, you know, ordinary boring things. And that was actually quite fine really, you know? So we would walk and we would actually go to, you know, sort of walk round the local park and then we'd just talk about music and football, and different things, and art, and, you know, have a coffee, and that sort of thing. Quite normal. I do see friends, which is again, a kind of support. I probably don't see them enough. I don't want to impose too much on them. But I think that's probably more me than them really. So, so yeah.
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