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Life on the Autism Spectrum

Paul I

Age at interview: 29
Brief Outline:

Paul had developmental delay as a child, and was diagnosed with an array personality disorders before he received his autism diagnosis at the age of 21. He is currently working at a support organisation, where he gives talks about life on the autism spectrum.

Background:

Ethnic background: White British

More about me...

Paul was born in 1986 due to a difficult birth, jaundice and placental abruption he had severe developmental delays in speech, language and motor coordination his Mum thought he was "deaf and blind" as a child and considered him to be solely brain damaged.

Paul was branded as a “naughty child” at school. He was classically autistic in his early years and gained functional speech around the age of 7 or 8 years old. He went through mainstream school with no additional help or recognition of his autism. Consequently, he did not achieve his academic or his social potential and had very low self-esteem.

After a string of unsuccessful jobs, Paul’s mental health suffered. He was referred to mental health services and misdiagnosed with “Asperger traits with a complex personality” which did not satisfy him. Paul was later diagnosed by an experienced psychiatrist, who diagnosed him with High Functioning Autism at 24 years old.

Paul wanted to promote autism awareness and help others on the autism spectrum, in the hope that others would not have to suffer as he had. He became a speaker for an autism organisation and has not looked back.

Presenting speeches, training and conducting consultancy, Paul is now freelance and continues to raise the profile of autism at every opportunity. Having done a lot of research, he is keen to explain the differences between Asperger’s Syndrome & Autism and show that autism is not "one thing" using Autism Consultant Donna William's (Polly Samuel's) ‘Fruit Salad’ model.

Paul firmly believes in retaining the ASD (Autism Spectrum Disorder) acronym. He says there should not be a negative stigma around the word ‘disorder’. His message is that Autism is a complex mix of ability and disability and every person with autism (and all people) should be a valued member of society.

Currently Paul not only does freelance autism work but also works as an in-house autism consultant for a small autism organisation. In his free time, he enjoys writing poetry, drawing, going for walks and going out with friends.

Paul I’s mum thought he was “deaf and blind” initially because of the way he interacted with the environment.

Paul I’s mum thought he was “deaf and blind” initially because of the way he interacted with the environment.

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My Mum actually thought I was deaf and blind initially, because of my problems with language processing. And visual perception. So I was like a deaf-blind child, the way in which I interacted with the environment, the way in which almost feral-like, in some ways. You know, would not want shoes or socks. Needed to feel. Needed to touch. Needed to smell. Needed to taste. Needed to lick. Needed to sniff, tap, move, to get a visual semantic reality, which I couldn't get through my eyes or ears. So obviously, you put that into an environment and then those behaviours are displayed; the way in which I used to interact was through noises. Pattern. What Donna Williams calls 'pattern theme and feel'. Which is before typical interpretation. So it's even before the literal which you hear about a lot with autism. But before the literal, before the significant. Before even getting the concrete understanding of something. That's how I was operating. And very frustrated in here. 

One lady asked me "How did it feel, not to have speech?" And I said "For me, personally for me, because I can only talk from my own perspective, you imagine the deepest part of the ocean. And the words are at the bottom of the sea bed. And that was the struggle, to get all these words that were fragmented in my mind." 

One of Paul I’s friends unfriended him on Facebook when he didn’t recognise her face.

One of Paul I’s friends unfriended him on Facebook when he didn’t recognise her face.

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Yeah, still have difficulties with face blindness. You know, who are you? What are you? Where are you? What, what, what, what significance are you, you know, in my life? In the sense of what are you in relationship to me? You know, how do I know you? I mean, I remember a lady who I met, she's a matron at the hospital where my Dad was. 

And she said "Hello Paul, how are you?"  And I was, I looked at her, and there was, you know, tumbleweed sort of going along. Awkward silence.  And I said, just said "Who are you?" Probably not the best way to say it. And she said "I'm so and so." I said "I don't know who you are, can you give me a bit more information to make it relevant and contextual?" And she said "Oh yeah, I'm [Name] from haematology, I'm the matron." 

Then it clicked. And there have been moments where I think I've unintentionally been too brisk, brusque rather, with people. I remember I was in [Supermarket name] and a lady said "Hello, Paul." And I said "Hello." And I tracked her, and she actually unfriended me on Facebook. But I understand why, because I just went up to her and I said "I'm sorry, but who are you?" You know? It was just, I knew the mistake I made. It was the way I used my voice, and I think it kind of, it kind of… I think it scared her. Because I just… it was too, it was almost interrogative, rather than "So, who are you?" I think if I could have gone back, and then, you know, next day I was unfriended. I think I understand why. I think it just, it just offended her. And that is going to happen.

Paul I sees himself as Paul first; “a human like everyone else”.

Paul I sees himself as Paul first; “a human like everyone else”.

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Do you see yourself as autistic? Now that you've broken it down?

That's a good…yeah. Do I see? I don't see myself purely as autistic, no. I see myself as Paul, first. A human like anyone else. Seven billion people on this planet. If you just gave every one a bloody label, you know, where's the person? You know? You can, you can put… you can slap a load of labels on, you know, Branston Pickle, but you really want to know what's inside the Branston Pickle, don't you. You want to experience it. A label is just a marker. It is a gateway. It's not necessarily a definition. So if you're asking me if I'm identity first, no I'm not. And I know that will annoy… sorry, people who are. Because I know that, I know it annoys some people, some people on the spectrum. But I've had so… just please, people who are going to be watching this, if you listen to my early years, I struggled to find the person. So I think in, at least in Paul's reality, hopefully you'll understand why I want to be seen as a person first, because I struggled to get there. Because of all the kaleidoscopic difficulties I had. And even having a sense of self was hard to acquire, because of those things.

Paul I lives at home with his parents and is glad they don’t “baby or mollycoddle” him.

Paul I lives at home with his parents and is glad they don’t “baby or mollycoddle” him.

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Yes. Yeah. And one of the things they are very good at is they've, they… I don't feel like a child. My room is very much my own. I don't feel like a baby. They don't baby or mollycoddle me. You know, which I'm grateful for. And I don't have a dependency issue with them, you know, I don't kind of have any sort of co-dependency sort of issue with them where I kind of don't do stuff that I can do. But, you know, it's where the parent sort of does the martyrdom thing. It's very complicated. You know. Saves… it’s understandable why it happens, you know, dependent personality issues where a person is in this sort of symbiosis of the martyrdom of saving the person from doing anything. Makes the person disable themselves even more. And then they appear more disabled than they actually are. And then you get… I remember a story about a lady with Down's syndrome. For years, her mum used to do everything for her, until it, bless her, until she was 40. And she went into a residential care, and she found her doing the ironing. And the mum said, "You're doing the ironing." She said, "Why didn't you ever do at home?" And she just said simply "Because you done it." Simple as that. "You did it.”

When Paul I was seven, he started dissociating at school.

When Paul I was seven, he started dissociating at school.

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And about 7 years old I started dissociating, which is, it goes without question, doesn't it. It was a, it was a coping mechanism really for that kind of interaction.

What do you mean by associating?

Dissociating.

Can you explain what you mean by that?

Well, it's a mental health condition where you take yourself away. I mean normal dissociation is what we all do, day-dreaming. And that can last for minutes and then you're back in the room. But what I was doing was slowly that was becoming more than minutes. That was becoming, you know, five minutes, ten minutes, hours. Just completely shutting off, as a way of coping with - I suppose in some ways, a perceived trauma, of…of being, you know, just constantly criticised. But one learns. And that, I don't feel sorry for myself, and I don't consider myself a victim, it just happened. And the only way one can learn from things is by understanding what went wrong, and then trying to make amends to it. So - and that's for any child, it's not just a child with a disability. Any child. You wouldn't do that to any child.  And if you can learn from that, you know, 'is this really okay? Is this boy going to remember this in twenty years’ time, and talk about it? What can we learn about it?' 

So, from that perspective - I don't think they were trying to harm me. I don't even think they were trying to bully me. I just think they're trying to understand me. 

Paul I developed somatization disorder in Year 7.

Paul I developed somatization disorder in Year 7.

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I mean, in Year 7 I developed a condition called somatization disorder. Which is where the person has like a pseudo pain, that they believe is real. And they get distressed. Of course what this was, was emotional pain coming out through and I used to go into reception and I used to say, you know, "I've got tummy ache, I've got a toothache, I've got a headache." And I'd cry. But what I was really saying was is "I'm not happy at this point." And I still get it now, with emotional trauma. My dog died not that long ago, about a week ago, and I got a pain down my arm and I got a pain in my teeth. It's a pseudo pain. It's somatization. It's amplification. It's how my emotions come out. And the only problem was is that obviously teachers talked about this behaviour. And I can always remember the science teacher, you know, he was getting ready to do an experiment in the middle of the room. And it, it's almost like something out of some sort of BBC comedy sketch. He said "Paul, the boy who's always crying in reception, go and get that flask." Brilliant. That's gonna do my self-esteem the world of good. And he had this smirk on his face. He knew what, I mean, this is a bloke, he was a junior teacher.  

Paul began his career as an autism consultant working at an autism organisation for five years.

Paul began his career as an autism consultant working at an autism organisation for five years.

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Yeah, that's it. I, I went onto an autism organisation where I worked for five years. And yeah, that's really where my career started. I didn't know it was going to be a career at the start. I had no idea, of that. It was just one of those things that, where I went in blind. Or in some ways I just thought it was a little hobby, initially, just doing a little speech about my life, and then go back to, you know, the volunteering work which I - don't get me wrong, I learned a lot from that base. And then what slowly happened is that each year it, I was going to different conferences, you know, National Autistic Society… What I done in the meantime was, okay, so I've got this autism diagnosis, what does it mean? How, and this is where I'm going to get to the fruit salad theme. So, got the diagnosis. And, you know, they've got the triad of impairments, and I thought well I want to know a bit more. You know, that's great for a diagnosis, but it's tapping the service. 

And I connected with Donna Williams on Facebook about a year later, from her speech, so it was about 2010. And I started looking at some of the videos about processing, language, etc. And then I saw this image of the fruit salad, where she puts different things into different domains. So information processing, personality, mental health, learning and environment. And then it started got me thinking, autism isn't one thing, is it? And she said "No. It's a clustering of different things." So then I started building up my own fruit salad, so I could contextualise each piece when I speak. And that's what I've done.

Paul I was told by a GP “to get on with it” when he was depressed. The GP apologised after he emailed the practice.

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Paul I was told by a GP “to get on with it” when he was depressed. The GP apologised after he emailed the practice.

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And what about your relationship with your GP? Is that good?

It's alright [laughing]. Yeah, it's okay. Yeah, there was a run-in once, but it, it was ironed out. In terms of I was very ill, when I went there, with depression. And more or less just said "Get on with it, and go." And I was so shocked, I sent an email to the practice, you know, what if I'd have gone home and committed suicide? And she was good enough to ring the family home, and apologise and say, you know, you can come back to me. So it's alright now. But when I was going through a difficult stage, it was literally a five minute, you know, "Get over yourself, get out." It was, it wasn't explicitly said like that, but the subtext was very apparent, yeah.

Why do you think that was?

I don't know. I don't know. It may have been the way I was speaking. It may have been that she was having a bad day.  It may have been she was not well herself. I honestly don't know. But, yeah. It's okay now. But yeah, it was just one, that one incident, yeah. It did sort of shock me, you know, because I was expecting a level of, some sort of level of empathy, that this was happening. And I wanted it to be on record, that this, at this point in time this was how I was feeling. So yeah, yeah that was quite… it happened a year or two ago. But yeah, it's better now. Yes. I think the email helped.

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