The Sunflower Conversations

Autism and Alcohol with Matthew Tinsley

May 30, 2021 Hidden Disabilities Sunflower
The Sunflower Conversations
Autism and Alcohol with Matthew Tinsley
Show Notes Transcript

Autism and Alcohol with Matthew Tinsley
Matthew Tinsley has a degree in Modern Languages and had a long career as a bookseller in independent bookshops. 

In this conversation Matthew explains how his alcohol addiction and his diagnosis of Asperger Syndrome Condition are linked.

After many years struggling with alcoholism and two failed marriages, he overcame his addiction - largely due to his self-awareness of his autistic spectrum condition, together with a long period in rehab using cognitive behavioural therapy.

Matthew has co-written a book with autism specialist, Sarah Hendrickx called Asperger Syndrome and Alcohol, Drinking to Cope.

If you are affected by addiction please speak to your GP or approach a local treatment service.

Hosted by Paul Shriever and Chantal Boyle, Hidden Disabilities Sunflower

Visit the Hidden Disabilities Sunflower website.

Paul Shriever:

Hi guys. I'm Paul, I'm with Chantal today. Hi Chantal.

Chantal Boyle:

Good morning.

Paul Shriever:

Today we're going to be talking to Matt Tinsley. Hey Matt thank you for joining us today.

Matthew Tinsley:

Hello. My pleasure.

Paul Shriever:

Can we start with you introducing yourself please?

Matthew Tinsley:

Yeah. I'm 60 years old. I work, well, I'm doing an apprenticeship at Brighton and Hove City Council in the Blue Badge and Concessionary travel department. And I was late diagnosed with autism at the age of 44.

Paul Shriever:

Can you just tell me Matthew what your conditions are?

Matthew Tinsley:

It's Asperger's syndrome but of course that's now become AS, autistic spectrum condition which I prefer to autistic spectrum disorder.

Paul Shriever:

Is autism and Asperger's is that the same thing? Can you just explain that.

Matthew Tinsley:

Asperger's is on the so-called milder end although many people I've spoken to said, "It's not mild to the person who has it, it's mild compared to other people you might see who have a lot more problems." I just say rather than say I've got Asperger's I just say I'm on the autistic spectrum. It's up to people then to ask me then if they want to how does it affect you? What's your day-to-day life like? And in some ways I still feel it's Asperger's syndrome inside, but to everyone else I just say it's autism and also it's a shortcut when you're dealing with people like doctors or anybody authoritative they'll say, "Autistic spectrum." It's easier for them to grasp that.

Paul Shriever:

Do you know is Asperger's something that's been around longer than say autism? I'm just interested to understand how the two cross.

Matthew Tinsley:

Well, there was originally Leo Kanner discovered it in the '40s I think. But Asperger I think was working at the same time in Austria. I think it was in the '90s really that Asperger's became a more mainstream thing. I'd never heard of it until in fact I watched the program that I saw that made me think I had it. I was watching an interview with Mark Hadden who wrote The Curious Incident of the Dog in the Night-Time, which ironically enough it was around where I was living at the time. And he was being interviewed and he kept saying, they asked him what the various criteria were or what was it like? And he said things like, "Very good memory, very good interests, poor eye contact, often not very good at practical things."

Matthew Tinsley:

And I saw the more and more everyone was being ticked off, and when that program finished, I went on the internet and just typed it in and then just spent weeks looking at it and finding more and more that I recognized it. And I thought I've got to get... Try and somehow to see if I can get an official diagnosis, because it explained a lot of the problems I've had throughout my life since I was a young child.

Paul Shriever:

You mentioned at the beginning that you're 60. And I would imagine that things have changed significantly in society were you just considered, I don't know, slightly different or is it just you've just got to get on with it?

Matthew Tinsley:

My family definitely saw me as a bit different, but they were very nice about it because I had these what they used to call my phases of intense interest in certain things like they ranged from the Battle of Britain to Tutankhamen.

Paul Shriever:

Is it something that you felt was slightly something was different with you. Did your parents ever flag it? Did anyone in your family who was close to you ever say, "Matt there's something a bit different about you or a bit special or whatever it is?"

Matthew Tinsley:

They knew I was incredibly nervous all the time suffered from anxiety all my life. They were aware that I was very, very clumsy. I was forever knocking things over they used to say they use to hear me coming and wait for the smash basically, or knock something over and I haven't changed I'm still incredibly clumsy.

Paul Shriever:

When you got diagnosed you said that that was when you were in your 40s, did that help you in any way? And by that I mean did it give you a sense of understanding what was going on better, and did it give you a bit of peace of mind because you were finally aware of actually what your condition was.

Matthew Tinsley:

I used to inside call myself stupid and always felt stupid for certain things I couldn't do. It's this uneven ability, some things I could do really well and the simplest thing I couldn't do. And ever since this diagnosis if I feel I'm struggling with something I'll say, "Don't worry it's just that. Ask someone for help." And I've got a lot of understanding from people. My family still treat me the same they know what it is now.

Chantal Boyle:

You're always going to be their Matt aren't you regardless of whatever your conditions say.

Matthew Tinsley:

And it's also there are other members of my family, some of my nieces and other family members who've been diagnosed since with it so it's obviously a-

Paul Shriever:

Do you think that helps Matt, do you think having that diagnosis has helped your family with not coming to terms with it, but just I don't know with just understanding it better?

Matthew Tinsley:

Yeah. I think we just see ourselves as we always thought we were a bit unlike the other members of the family, because I've come from a huge family. My mum was one of 11 children and my dad was one of five so I've got so many cousins, but we were slightly not weird, but just slightly different from everybody else. And I just think we all were just a little bit neurodiverse and quite happy with it that's the way I see it.

Paul Shriever:

Matt can I ask are you married, do you have children?

Matthew Tinsley:

Well I've been divorced, married and divorced twice.

Paul Shriever:

Okay.

Matthew Tinsley:

And I have a partner and a seven-year-old son.

Paul Shriever:

Do you think Matt that your condition has that made it more of a challenge in relationships and being a father?

Matthew Tinsley:

Being a father in some practical ways - Like when taking my son to the park and he can dash off and hide and I struggled to find him and I'd get really panicky and start stressing out. So in the end we got someone to come with me so he could chase after because I'm not as fast as he is, but emotionally we've got a very strong bond.

Paul Shriever:

That's lovely.

Matthew Tinsley:

I think it's partly because he's slightly different as well and we just enjoy each other's differences.

Paul Shriever:

I can see that you're wearing a sunflower lanyard.

Matthew Tinsley:

Yes. Indeed.

Paul Shriever:

You obviously wear one because you've got one on, how has it helped you?

Matthew Tinsley:

I use it at work mostly because you get a work lanyard, but I replaced it with this one. And I started getting asked by people at work what's this about and I started talking about it and then spread the word, and now it's become a project for my department in the council to have more information and more links if possible on our particular Blue Badge and bus pass website, because we get a lot of people with hidden disabilities.

Paul Shriever:

Do you think the Sunflower is needed in society?

Matthew Tinsley:

Definitely. Definitely. I wish it was more widely known. I really do. I know it's used in many places, but I feel like we'd like to be adverts on the television and wherever and radio. I'd like to think there'll be a time when it's treated like as obvious a visual cue as crutches or a white cane or a hearing aid exactly the same thing. And not having like you say, the best thing is not having to explain what it is.

Chantal Boyle:

It completely is that isn't it, that is it's your choice whether you decide to have a further conversation about why you're wearing it but just that acceptance of, "Oh, I can see you're wearing it. So you have a hidden disability and if you want to open up that conversation you can, if you choose to." So people who have hidden disabilities who are able to apply for a Blue Badge, what is the criteria for them to obtain one?

Matthew Tinsley:

If it's PIP if they're applying via PIP it's a certain number of points if it's in a certain category. And if they haven't got PIP, but they can apply on our form and we do assessments. Now these have been really difficult I don't actually do them, I'm not high enough up the totem pole. The desk assessment is difficult I should imagine you just look at the evidence, maybe speak to the person and you've got to make a judgment call.

Chantal Boyle:

So I know that you have written a book. Can you tell us what it's about?

Matthew Tinsley:

It's about Asperger's syndrome and alcohol and the link between addiction and using drink or drugs, well, in this case it's drink to cope with life on the autistic spectrum generally. Because for many years I used to use alcohol to deal with my anxiety and to cope, and that's how I managed to get two wives in a sense to relax me enough to be in a relationship, but in the end it was counter productive. When I came to Brighton I met Sarah Hendrickx who's written lots of books on autism, and I told her my story and she said, "We should write a book about that." And so we did and she does the scientific and technical side of it, and I just basically told my story and it split like that.

Paul Shriever:

Did it take long Matt to write?

Matthew Tinsley:

Eight months I think maybe, maybe six to eight months because it was a lot of what I was writing was very hard because I was going back to a bad time in my life. So I'd have to sometimes when I finished writing go out and go down to the sea and down to the pier and get some fresh air, because I nearly died twice in 2004 I was in hospital with liver failure and alcohol poisoning.

Chantal Boyle:

When did you start drinking? When did your journey with alcohol start?

Matthew Tinsley:

I would just say when I went to university, I found that everyone was doing it. So I thought, "Well, I want to fit in so I'll do it." And also, "Oh, this makes me feel nice. I'm less anxious about studying and everything." And it was okay at university then it sort of... I went to work in an art gallery where there was a lot of drink around openings and things, and then we used to go for a drink afterwards and gradually it just snowballed.

Chantal Boyle:

You mentioned that you were drinking because it helped you with your own anxiety so presumably that's why you continued-

Matthew Tinsley:

Yeah. Exactly.

Chantal Boyle:

... to do that. Can you describe the feeling and sort of transport yourself back then, so pre having a drink and then having a drink? What did it do, which affected your Asperger's.

Matthew Tinsley:

Before I took a drink depending on the situation I've been intensely anxious and I also wouldn't be very coherent, often I stammer and stutter and wouldn't be able to get my words out couldn't think straight. I'd freeze actually and then I'd have a drink, and after a while I became more loquacious. The funny thing was I did some of my best work at the university, I did linguistics and translation theory as part of my degree and had I to do a very complicated presentation in front of a class. And so I had a few drinks beforehand although it was very complicated, I was fine. I got a really good mark for it.

Chantal Boyle:

You just flowed right through it.

Matthew Tinsley:

Exactly. And if I hadn't had that drink I'd have been, "Wait a minute-" I would have been second guessing myself, but it cleared a blockage in my head that kind of feeling.

Chantal Boyle:

When did you realize that it had become an addiction.

Matthew Tinsley:

Long before I stopped. My family were talking to me about it and partners. And I'd make the old effort to cut down and stop, but it was always more painful to stop then to start in order to carry on. It was a lot drinks in the pub and maybe some takeaway cans home and then went on to spirits, and gradually and at the very end of my worst period I was drinking about three litres of spirits a day and that was the day I was admitted to hospital.

Paul Shriever:

Was it the Asperger's that caused you to drink do you think or do you think it was something deeper rooted? Why did you drink?

Matthew Tinsley:

Partly because it makes you feel good and also to fit in with my peers and also because it was a way of socializing, which I didn't I don't find groups very easy, but once you're in the pub and you've had a few drinks then it's all fine. And obviously at this point I didn't know anything about my diagnosis, the autism, I just knew I had certain problems and I didn't know why they were I just accepted that was the way I was. The more I drank you got more tolerance to it. And any effort to come off it was extremely painful and dangerous you can't just stop. And I didn't feel comfortable reaching out to any alcohol services for a long time until the near the very end, when I ended up going to rehab for 16 months, which was a fantastic experience and that changed my life. And that was while I was in rehab I got the diagnosis I went asked my GP, "Can you refer me?" And he referred me to somewhere.

Chantal Boyle:

Do you find that there were other people with addictions at your rehabilitation centre that also were on the autism spectrum?

Matthew Tinsley:

Nobody who had admitted to it but probably some people there may well have been because I was there for so long I saw so many people come and go.

Chantal Boyle:

That must've really gave you some fantastic grounding though being there for that long, it's hard to get a long, long period in them isn't it, in the treatment centres?

Matthew Tinsley:

Well, this was 2004 so things were much different before everything became cut back.

Paul Shriever:

How long were you an alcoholic for?

Matthew Tinsley:

Some say you're always an alcoholic-

Paul Shriever:

Okay.

Matthew Tinsley:

... you're just the one that's not drinking. But I was drinking solidly for 24 years. I drank probably like any other student when I was at university. But when I went to work I found the work environment quite difficult.

Chantal Boyle:

Is that part of Asperger's in that you'd like to know what's coming.

Matthew Tinsley:

Badly.

Chantal Boyle:

Do you need a plan and the unexpected is difficult to cope with is that?

Matthew Tinsley:

The changes of plan are a nightmare. For instance, at the moment I'm supposed to be going to Cornwall in a few weeks and all of a sudden these trains have got these cracks in them, and there's a chance that they might not be fixed in time so I'm going, "Oh my God, I was looking at buses how to get a bus." So any little thing, any little thing.

Paul Shriever:

How did it affect your life and relationships? You said you've been admitted to hospital a number of times. Has that impacted your health?

Matthew Tinsley:

Yeah. I've got a damaged liver I have to go back to hospital every few months or every six months for a scan and also for blood tests. But it seems to have healed itself pretty well according to the hospital, but I'm taking tons of medications still related to it.

Paul Shriever:

So it's taken a toll.

Matthew Tinsley:

It has. It has.

Paul Shriever:

Did you have loved ones around you that supported you?

Matthew Tinsley:

Yeah, at one point when I split up my second wife I moved back in with my mum and she really looked after me. Even though I was drinking really heavily, she was ever so good. She was obviously at her wits end, but she didn't know what to do. And it was at the end of that period that's when I got into rehab.

Paul Shriever:

Did you go through a period of time where you wouldn't accept that you had a condition or a problem in terms of your drinking. Was that something that took a long time to come to terms with, to the point where you said, "I need to get some help for this?"

Matthew Tinsley:

I probably knew deep down early on, but the problem was that accepting it meaning you had to do something about it and I wasn't ready to do anything about it. But I remember towards the end when I was drinking so much I would just get this mantra going around in my head, "This can't go on. This can't go on." When I was discharged from hospital for the second time after I nearly died. They said, "Listen, you've got to go somewhere or you're going to die. You are going to die." So I said, "Yes, straight away."

Chantal Boyle:

You have to hit rock bottom don't you before you're able to reach up for that help. And that sounds like that was your rock bottom, there was nowhere else to go from that hospital bed was there, you had two choices.

Matthew Tinsley:

Yeah, exactly. I gave up in a sense. I agreed to everything everybody suggested. I was in London at that point but I went to Northampton to a rehab in Northampton, which is a really good idea, smaller town, much easier to handle. And I just followed everybody's advice I said I'm not going to say no to... When I saw quite a few people who were fighting the system and I thought, "That's not the point you come here, to go along with it really.”

Chantal Boyle:

Which is probably also help with one of the effects of your autistic spectrum is following the rules. So you knew that when you went there you were going to do it, and you were going to do it as you were instructed to do it.

Matthew Tinsley:

Exactly. In fact, that's been one of the saving graces of the lockdown because we knew exactly where we stood and I actually found it quite....umm what’s a good word?!

Paul Shriever:

Comforting and what or?

Matthew Tinsley:

Yes. You knew where you were. You couldn't do this, you couldn't do that. You knew exactly what rules were. I didn't have to go out and be social with people. I didn't have to do anything... You could be social online, so I was completely fine with it. And it's when it started opening up again I started getting anxious, which I think a lot of people have said that.

Paul Shriever:

Matt, can I ask you about your book? When and why did you decide to write a book and share your experiences and did you find it cathartic? Was it something that as an experience you found helped you?

Matthew Tinsley:

Well, originally I was thinking about writing it when I was in rehab, and I actually went as far as writing a letter to the publishers, Jessica Kingsley, who do lots of books on autism. And they said that, "Well send us a sample page, chapter, send us a breakdown." And then I thought, "I can't really do that right now. I'm not in the right space." Then when we moved to Brighton luckily I met Sarah and she was really keen to do it, because I thought I recognized definitely a link between autism and using something to make you feel better. And I've had various letters from people who've read the book, particularly from people who've lost sons and who were on drugs or drink and they said they wished they had the book before. I was actually amazed how much I remember considering how much I was drinking. I did really good recall for certain situations. And I try to be as honest as I can it is a pretty honest book.

Chantal Boyle:

What's the book called?

Matthew Tinsley:

Asperger's Syndrome and Alcohol: Drinking to Cope?

Paul Shriever:

Are you in full recovery now?

Matthew Tinsley:

To be honest I had a relapse during lockdown but I am again now.

Paul Shriever:

I'm glad to hear that.

Chantal Boyle:

Did you do the 12 step program?

Matthew Tinsley:

No, I do something called smart recovery.

Paul Shriever:

Is this a day-to-day challenge for you? Is this something that you have to monitor all the time still?

Matthew Tinsley:

Up until last year? I would have said no, but there was something about the lockdown at a certain point I think it's when the second wave came and I just thought one won't... I just got to stop this way I'm feeling it feels like really dooms laden and then it just spiralled from there, but I managed to stop and I'm okay at the moment.

Paul Shriever:

That's great to hear.

Matthew Tinsley:

But I do do Zoom meetings with my recovery group.

Chantal Boyle:

I was going to ask you do you attend meetings because I heard a lot of them went online so that there was at least that, do you do it every day or?

Matthew Tinsley:

I actually do one a week. There were several groups, but I found this one particular which is actually tonight, Tuesday nights and it's in Brighton and it's the same group of people. And it's a very small group which I really like.

Chantal Boyle:

What do you do to manage your feelings and sensations now without the alcohol?

Matthew Tinsley:

I guess I try to get a sense of perspective, use the CBT, how likely is this to happen? Am I fortune telling, am I mind reading, do they really think that? And also I try and practice I do give it a try is mindfulness, I have such a grasshopper mind.

Chantal Boyle:

Do you find it's difficult to stay focused on one thing then?

Matthew Tinsley:

Yeah. I've got a whole shelf full of mindfulness books. Someone said to me, "You're supposed to do it, not just get the books."

Chantal Boyle:

Do you have any advice for people such as yourself? You didn't get your diagnosis until you were 44, but from what you've been telling us I feel that you've really found it a very positive experience in receiving that diagnosis. Do you have any advice for people that are like they're not sure if that got Asperger's or?

Matthew Tinsley:

It depends on your attitudes towards it I think. I just wanted an explanation and I found I’d done all this research and I could just see myself all over it. And so I wanted to get it official. I want you to know am I thinking, am I making this up, am I imagining it? So to actually have it on a piece of paper. And it's actually been an immense help. I would say it was life enhancing and it's made my life so much better. I think the biggest thing is I don't beat myself up inside anymore about finding things difficult or asking people for help. Because before I used to bulldoze through and feel really awful. I think the diagnosis immediately made me feel, "That's not my fault, that's not my fault." I was very big into self blame for not being able to do things and that's a really little toxic thing to do.

Chantal Boyle:

It's so tiring as well though isn't it?

Matthew Tinsley:

It was.

Chantal Boyle:

When you're comfortable with yourself and you recognize your strengths then you can have a wonderful life can't you?

Matthew Tinsley:

Yeah. I used to say to people who might be sort of having a go at me and go, "Oh, well, however badly you think about me. It's not nearly as badly as I think about myself."

Chantal Boyle:

It's been a pleasure talking to you Matt confronting your addictions is a brave undertaking and it takes a lot of strength and inner determination. I'm sure that this podcast is going to be helpful to so many people going through similar experiences and perhaps not understanding how to deal with them. So if you could just mention the name of your book again, I think that would be quite helpful to many people to maybe pick that up and read it.

Matthew Tinsley:

Sure. It's called Asperger Syndrome and Alcohol: Drinking to Cope  And it's by me Matthew Tinsley and Sarah Hendrickx, which has got a C-K-X at the end and published by Jessica Kingsley.

Paul Shriever:

And where can you buy it Matt?

Matthew Tinsley:

Amazon or you can get it from the Jessica Kingsley website, but Amazon do it and you can get a Kindle edition of it as well.

Chantal Boyle:

Brilliant. Thank you so much.

Matthew Tinsley:

My pleasure.