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Life on the Autism Spectrum

Obsessions & autism

Most people talked about being obsessive about things. These obsessions, which included hygiene, health, exercise, safety, animals, computers, people, cars, DVDs and, in one case, Kate Winslet, could dominate people’s lives. The intensity and type of obsession varied over time but remained, for most people, a consistent feature of their lives.

 

Sam's obsessional thoughts are all consuming and he is unable to concentrate on anything else.

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Age at interview: 26
Sex: Male
Age at diagnosis: 24
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But, the key elements of autism to my mind, is that when you, when a normal person focuses on something and thinks about something they can often get quite interested in it. And often it’s something they’re actually not that interested in at all. If they just, they may be something very annoyed or angry about, an emotion, and it feels quite strong. But after a while they can just switch it off and have opted break from an emotion and do something else, they can usually do it reasonably well.
 
Whereas, certainly in my experience that’s the precise that autism really can’t do. That when I get interested in something it very much remains interested in me, I’m interested in it. And if I want to do something else it quite simply it remains with me, or remains consuming my thoughts. And although I can sort of, think about something else, at the back of my mind it’s always going to be burning away. And it’s very difficult to concentrate on something else. 
 
And this could be true for any number of things. Like, I’m thinking in relation to employment. It’s very difficult for me to focus on anything beyond those menial, menial tasks, if my mind’s thinking about some other particular thing which is consuming me. 
 
It can be something to do with social interaction, insofar as, it’s difficult to really focus on the conversation to a degree when you’ve got this particular you know, some sort of thought consuming me so strongly. 
 
And so in this regard to my mind it’s very difficult to actually really care so much about other things and other people. I suppose it’s the old stereotype; autistic people are very self-centred. Well they can be to a degree, because not so much, because I don’t really care about anything else, but whether they’re interested, not necessarily themselves, but whatever particular thing that consumes obsesses them. It is, it gets in the way of just simply living a normal life of, of caring about things that other people do, and I’m guessing, this thing is much more speculative, but I suppose we have the sight we have because people are just formed that way. But if someone’s slightly different from that, then they’re going to form a slightly different way. 

Obsessions were often linked to people’s special interests (see ‘Activities and interests’) and the line between interest and obsession could be difficult to draw. One man, for example, was obsessed with clean books; he felt that “it’s almost rape” if someone writes on a book. He was also compulsively punctual and became hysterical if he was late for anything. Steven said that his wife called his special interest, autism, an ‘obsession’ but he thought that people on the spectrum go into great detail which can be interpreted as an obsession.

 
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Peter can leave dirty plates in his house but is obsessive about DVDs and videos being lined up...

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Age at interview: 33
Sex: Male
Age at diagnosis: 30
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But I am also obsessed with some things like I could leave a few plates in my house for weeks on end and that wouldn’t bother me but if one of my videos was an inch out that would drive me insane. Everything has to be perfect with me with what I want, like my videos and DVDs. And like in work just now where I work in the kitchen if people don’t stack the plates up properly. I have lost it a few times with them, people like say, is that a problem, but they don’t actually know. The bosses know but they don’t actually know what autism actually is and … but I told a few of them, the Scottish ones, the ones who have got… most of them just came in just through other places. And I said, “Well listen, you don’t start doing it.” And then I just told them the next day, “Listen this is what,” I said, “Have you heard of autism?” “No.” “Have you heard of Asperger's syndrome?” “No what is it?” I told them. “From now on, you are just coming in and scraping the plates, and stacking the plates up properly.” So they knew.
 

Mary has been obsessive since the age of three or four. Her first obsession was about food and...

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Age at interview: 22
Sex: Female
Age at diagnosis: 21
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I was also, I was very obsessive, like I’ve been obsessive since about the age of three or four. Like just worrying about lots of different things, like getting, as a child, getting dirty, and wash my hands a lot, and that’s, as I still do, but it kind of comes and goes, but I’ve never been, because I’ve always had it and it’s so much part of me, it’s just something I’ve had to live with, so from a very, very young age. So it’s not something I’ve ever, it’s just something I know I have, almost like I was born with it. It’s not something, some people who have like obsessional problems they develop. But for me I’ve always had it so I don’t know any different. They just, I just accept it as something I’m always going to have, but try and keep it under control. But it does get quite a lot… sometimes it gets a lot more severe than at other times.
 
But also I have like very strong, I’ve always had very, very strong interests but as a child, it was really being interested in food, like cooking and nutrition and I would also, I’d learn what, I would watch what people had in their lunch box and then memorise it, and learn it off by heart. And I just like… tell my parents about whatever, every single detail of what people had for the lunch at school and what people look like and their birthdays, and just really obsessed with it. So that’s my main obsession as a child was food, and I could talk about nothing else.
 
 

Kate Winslett was Mary's most extreme obsession and this lasted for eight years.

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Age at interview: 22
Sex: Female
Age at diagnosis: 21
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Then again it moved onto the human body, and then the biggest obsession was the Titanic and that arose when I was 10, 10 and 11 and I learnt everything about the historical event, Titanic. All the details and the statistics about it, and then came the Titanic film and that turned into a massive obsession and I ended up seeing it, you know, over thirty times and I also became really obsessed with the actress Kate Winslett in it. So again I stopped being obsessed with the Titanic and became really obsessed with Kate Winslett and that obsession took over and I saw all her films. I knew every single detail about her life. I could think about nothing else, apart from Kate Winslett. I looked at all her pictures. She was my life, nothing else mattered, apart from Kate Winslett. I used to think that if Kate Winslett were to disappear I would have nothing left in my life, my life would be just be, my life would just end, because there’s nothing in my life that was more important than Kate Winslett. So that, that was probably the most extreme obsession I’ve ever had, and that lasted eight years.
 
And simultaneous with that was an obsession with child development and babies, and children, and I was so obsessed about it, I used to read parenting magazines from cover to cover. And that arose because Kate Winslett had a child, so I got really obsessed with children because, through Kate Winslett. I wanted to understand her experiences, and almost be like Kate Winslett. So, you know, I used to take notes in a notebook, every time I saw a pram with a child in it, I would take a note, saying what was the make of the pram, what was the child doing, what did it look like, I was just so obsessed with it [laughs]. So that was quite extreme.
 
So… I just became more and more isolated really. But I played a few times with some girls a year younger than me again. I tend to relate to people younger than me or older than me more than peer group. I don’t know why that is, I think it’s because I don’t know there’s something different about peer group, it’s just that I can’t deal with that well. But I mean, and that was also, that was when Kate Winslett obsession, just got more extreme. So I just retreated into that and that’s all that mattered, so… 

A few people were diagnosed with OCD as well as autism. Mary reflected on how OCD was interconnected with Asperger syndrome; “I know not all people with Asperger's have OCD but I think for me, it’s kind of just all part of the same thing, considering I’ve always had it all my life and it’s combined with all these other things”.

 

Daniel has OCD and worries about saying the wrong thing to people.

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Age at interview: 32
Sex: Male
Age at diagnosis: 23
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I do get compulsions but I am a bit frightened to act them out sometimes, because it is a bit embarrassing asking somebody ‘did I say the wrong thing?’ There is something that stops me from doing it. I don’t know what. It is something inside which stops me from doing it.  [3 sec pause] Something inside, I don’t quite know what it is. It is just a feeling. Then because I have not said it, I feel a bit bad because I have not mentioned it, I have not asked if I have done the wrong thing. It is very important for me to do the right thing at all times so I worry about that a lot. Yes. Quite a bit.
 

Daniel describes some of the systems he uses to order his life including counting his breaths on...

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Age at interview: 32
Sex: Male
Age at diagnosis: 23
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You say you sort of systematise your life?
Yes. I used to do that a lot.
Do you still do that now?     
I still – I start listening to music and what I do is, I put maybe not the same album on once in a week, so I put them to a different side, so I start doing that and I have got this idea in my head. I listen to my own music, up until the 21st of the month and then put the radio and listen to all other music after that. There is something appealing about numbers. I am fascinated with numbers. And... what else do I do? So there is music.
 
When I wash myself I have to do it five times. Whenever I’m in the bath I do it five times, washing, listening to music, eating. I don’t know why, but I count the number of mouthfuls I eat. I just do it automatically. Eating. Obviously I started breathing. I think I started that about 32 years ago. I started …  counting my breaths on the bus. First I did it counting to ten. Now it is twenty, twenties a day. So I start from one, outwards to, I count to twenty, because I am like concentrating on the numbers. It is like a meditation. It is not like just keep counting. I need to be aware enough to start again from one once I get to twenty. It is like a meditation. A concentration type thing. I got that from a book, from like ‘Heal your Life’ by  I forget what she is called... oh I have forgotten what she is called. ‘Heal your Life’ or something like that. I have forgotten what she is called now. It is a very interesting book.
 
And I am reading about the  ‘Hundred Things Everybody Should know How to do’. And I think I have to forewarn the female population because once I get into the book where it has got about  kissing and it has got about asking somebody out, so they are sort of forewarned, you know what I mean, yes. For the … yes. So a little bit of systemising. Not too much that it causes me a problem  [5 sec pause] but I do things in numbers.

“Milton is my best friend”
Some obsessions related to fear and were about health, hygiene and safety. These are discussed in ‘Fears, anxieties and anger’. Cluttering was another type of obsession discussed; one man, for example, said that his house was full of newspapers because he collected obituaries. John’s psychologist lumped together obsessional thinking, difficulties in organising things and hoarding as part of Asperger syndrome.

 

John hoards electrical goods and books. He was surprised to find out that hoarding was linked to...

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Age at interview: 47
Sex: Male
Age at diagnosis: 45
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I continue to apply for white collar jobs. I mean I think, obviously the fact that you’ve not been working recently and the fact that the most recent job is one from which you didn’t pass the probation period. That’s not something counts in favour of you as an applicant. So, but, that provides a difficulty. And also a tendency to obsessiveness means that sometimes you get bogged down in sorting out other areas of your life and you know, there are times for months on end when I haven’t looked for work. I mean I’ve been through something of a development in my housing situation, where my flat was being refurbished and I’d been moved out to a temporary so called decamp flat, and that has taken me about a year to go through all that process, which other people would have done much more swiftly, I’m sure. 

 

And what about the hoarding why do you think it’s curious that your psychiatrist does include hoarding under the umbrella of…

Well, well because I mean the reason I think it’s curious, if I read you know, literature aimed at the sufferer, I mean, it predominately talks about the social functioning etc. And I would see hoarding as more connected with OCD and I don’t have diagnosis of OCD. I have a diagnosis of quote obsessional symptoms. But my psychiatrist says that, you know, if there were any attention deficit problems which he doesn’t accept and the obsessional symptoms which he does accept. He lumps all, both of those areas under the Asperger's… 

I was very much taken by surprise and I wasn’t aware that Asperger's was considered to, you know, contain these other components. I mean I do understand now that it contains components to do with irritability and frustration, but no I was very much taken by surprise when he first said that the, any obsessional symptoms are part of, under the umbrella of Asperger's. Yes, that took me by surprise.

And what do you hoard?

Well okay, books for one thing, sometimes items of electrical equipment, computer equipment. But books is a major thing. I would say there, they are the major things yes.

 

 


Obsessions could become more or less severe at different times in people’s lives and some people related the severity to periods of stress, insecurity or feeling out of control. Mary, for example, found that her obsessions became less severe when she had a friend. The distraction of a friend helped her to become less obsessive. 

“Obsessions get in the way of simply living a normal life”
Obsessions could cause people considerable difficulties in their everyday life. Several people talked about how their obsessional behaviour interfered with their employment or relationships.

 
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Julie and her sons have adapted their lives to include Tim's obsession with exercise or he can...

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Age at interview: 39
Sex: Male
Age at diagnosis: 39
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Julie' Tim can be difficult to live with sometimes. And I’ve got two children as well, with autism as well. It can be quite hard at times. I think problem is Tim and Jack are very like and it’s sometimes I’m in the middle, you know, trying to smooth things over, because Jack takes things very, very literally, and because Tim’s people skills, may be aren’t the absolute best. He’ll say something which Jack’ll misinterpret it and then before we know it we’ve got major problems, and then Simon don’t understand what’s happening. So he’ll then get upset and so I spend a lot of my time, just sort of mediating really. And Tim can be very withdrawn and in his little world a lot of the time, you know, and he’s got quite sort of narrow, quite obsessive interests really that he’s completely self absorbed in most of the time. Yes, you know you are [laughs]. Exercise being one of them. He’s absolutely fanatical about exercise. He has to have exercise every day, otherwise he can get quite, you know, quite anxious and quite nasty at times. But I don’t just mean a jog round block, you know, I mean runs, runs 20 odd miles a day. Cycle, he might, it’s nothing to cycle 70 mile on a Sunday morning before I’ve even got out of bed [laughs]. Is it Tim?
 
Tim' It’s probably ___ a bit high, but yeah.
 
Julie' Hm. So he’s obsession is with his exercise. And we, he don’t realise it, and he’ll deny it but we have to adjust our lives and adapt our lives to accommodate his exercise, otherwise…
 
Julie' I do try and work round it.
 
Julie' You do. You do try, but just little things, I don’t think you realise sometimes just how much we do accommodate you and how much we have to adapt. So yes, so he’s very, very self absorbed in his interests aren’t you? Yes. 
 

Obsessional thoughts could also interfere with interactions with other people (see ‘Communication and Interaction’). Ian’s obsession with respect could lead him into fights with people.
 

Ian has a new obsession about people respectfulness and will hold grudges against people who are...

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Age at interview: 22
Sex: Male
Age at diagnosis: 8
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Is this a new obsession, disrespectfulness?
 
Mother' Yeah, it’s been, yeah, a few months it’s been going on for hasn’t it?
 
Ian' Yes.
 
And can you give me an example of when somebody is disrespectful to you?
 
Ian' Well I think I was doing some work for my dad’s project at work. It was…And I think because he was getting frustrated or something, he had a go at me and stuff and then I started having a go back at him. I said, I think I said to him, I said, “Don’t disrespect me, [name].” You know, and then I stormed off. You know, what I mean. So that was it, I held a grudge against him until I sorted it out so.
 
What does it feel like holding these grudges?
 
Ian' Eh. I don’t know. Just… sometimes it feels a bit bad, but I do it, because you know, I feel that they are in the wrong. And they should apologise, no matter what they’ve said. You know what I mean, because at the end of the day, you know, I feel like I’ve done nothing wrong you know, I always think I’m always right. You know what I mean, and actually most people with autism do that. Even [name], he always thinks he’s right. No matter what [laughs], so we’re both as bad as each other really, it’s quite funny.
 

Other people were able to use their obsessions more productively. Mary used her Kate Winslett obsession together with her obsession to memorise books, to help her concentrate at school and she was able to go on to university which she hadn’t expected.

“The adult autistic mind grows more wary of all the dangers”
People had found ways of trying to manage their obsessions although, as Russell said, as he got older he’d become more aware and more cautious of potential dangers.

 

Russell tries to avoid obsessing about things that could go wrong when he is away from home.

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Age at interview: 21
Sex: Male
Age at diagnosis: 12
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Have you found any ways of managing your obsessing about things?
 
Make sure I don’t do anything wrong. That’s all I can do. I make sure I check everything is secure, everything that may go wrong is made so it won’t go wrong, you know, to the extent of everything apart from the, the very unexpected, I’d say earthquakes or tidal waves, something like that. You can’t, you can’t really plan for that kind of situation if you don’t know it’s coming. So I can’t really plan for that. But you just remember to lock up your house, keep your keys on you, make sure they’re tied to your belt, make sure you’ve got everything you need, wallet, mobile phone, keys, in my case insulin pen. If you remember those then the one thing that may happen when you’re out is you may have a kind of a skip in your memory, you know, because you know, did I forget to lock the house? And if you just go back a little in your memory, search through it again. Confirm that you did lock the house, then it takes your mind off of that and you can get back to being annoyed by everybody else. So like, I suppose that’s a, I suppose when you’re going out, if you’ve got an obsessed thought going through your head and you can’t get rid of it, you can’t control it, but you can control being in the social situation, you kind of step outside it, and you go back to the feeling of being left out of the, you know, general social warmth. So, yes…
 
You seem to be quite concerned about coming to harm?
 
Well, it’s, it’s not so much physical harm. It’s, unexpected psychological impact I guess. You know, something unfamiliar happens, something to which you’re not used to understanding, you know, going out and being approached by a some guy who ended up drinking twelve cans of Carling in a row, and then he’s going out swigging drunk that kind of thing. Very, very disturbing. It just, I just can’t handle those situations. I, I’ll normally I kind of walk around them, but even then you don’t know what’s going to happen. The guy may come chasing after you. Or he may just carry on his merry way, keeping a drink, and carry on walking. It goes so many ways, and you’ve got so many situations that can happen. I mean you could have a car which nearly runs you down. You could have somebody kick a football at your head. Or you know, somebody accidentally trod on your toes. All these different things happen. They have been known to happen. And you can’t plan for them all in your head. I mean your standard person would be able to, you know, keep calm and collected but have that sternness about them in order to… kind of make sure that it doesn’t happen again. If you chucked someone like myself into that situation then we probably fly off the handle or sit down and hide from anything happening like that again. But there are hundreds of not thousands of those types of situations. Which is a bit of a nightmare, but again it comes down to avoidance, knowing where you are and knowing what you’re doing.
 
 

Simon sometimes finds his obsessions comforting. Computer games for example, are more predictable...

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Age at interview: 22
Sex: Male
Age at diagnosis: 5
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And half the time it’s to do… it’s a comfort thing really, it really is a comfort thing. Sometimes, our obsessions become like sort of like a comfort really, for example if I had a really stressful day at school or something like that, I’ll just sort of play on my video game or something like that because it just made me feel comfortable with my obsession. I was playing this game over and over and over again because it just helps me feel at ease because it’s something I like and it’s, you know, I know how it responds you know, it’s very basic really and sometimes, a lot of autistic people we really, we’re great animal lovers. We like animals a lot and half the time the reason for that is, for me, or personally, is because they don’t talk back. Their social systems are very basic, you just, you go up to them, you stroke them, they respond you know, they respond more we can see it, whereas people they talk don’t they, about stuff, whereas animals they can’t talk, so they show it in physical form. So we can see it, which makes us more comfortable about it, because actually we can see what’s happening and stuff which sometimes really helps.

Routines
Many people said they needed routine and order in their daily lives. They disliked change, particularly sudden change. A few people knew that routines were not necessarily a good idea, because they could be disrupted, but tended towards routine anyway. One woman said her husband was very, very precise about the way he ate his food and would always go round his plate in the same order. Another woman had made a daily routine for herself, looking after the house, which she could cope with.

 

Vicky worries if people are late and thinks they have been involved in an accident.

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Age at interview: 37
Sex: Female
Age at diagnosis: 33
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Or if somebody says to me, oh I will meet you at sort of like 5 o’clock in the evening. If they sort of like, haven’t rung to actually tell me that they are still coming, like yourself. I mean you rung me to say you can’t find the place, but if somebody doesn’t ring to actually tell me that they are going to be late, I start worrying because they might have been involved in an accident or whatever, you know what I mean, I start to sort of get quite worried that these people aren’t going to turn up, and then I am sort of left on my own, wondering what to actually do. Whether to ring the police, whether to do that, because people with Asperger's like people to actually be punctual and some people can’t cope if they are not there on the right time and things like that. Okay yes, I am a bit like that. I mean if somebody said oh 12 o’clock I can cope with it, but if they don’t turn up say after about 5 minutes I begin to actually worry, because for instance, they might actually be involved in an accident or something like that, you just don’t know. But if they actually ring me like you did if they ring me like you did, it doesn’t matter because I know that they are there and going to come, they are just a bit lost [laughs]. You know what I mean.
 
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Harriet describes the rules and routines she needs are like a narrow straight line she walks...

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Yesterday someone asked me at work what happens when the rules /routine is disrupted (this week at work has been very bad) and I said it was like the rules/routine are a narrow straight line I walk on (like the one where you have to walk heel to toe on). I have to concentrate so I do not wobble or fall off but the rules/routine help me not to fall off (like a rope to hold on to). When the rules/routine is changed even a very little (say a different order or room or even changing the lesson around eg literacy instead of numeracy) then I wobble and the rope has gone.
 
If it is a very little change and with the right person to support the wobble will last until I can get back to the routine/rules or find an old rule to cover it (It may have happened before so I will use that rule). If it is a bigger or unexpected change (I usually have been given time to prepare for the change which means I can make the new routine to follow so it is less fearful) then the wobble is a trip and I fall off the line and into a revolving door (like in an office building) and I just go spinning round and round (my balance goes and I am very clumsy - coordination is gone and I end up bruised) then I am told what to do by different people and it is like they push me out of one revolving door and into another and another and another so I am so disorientated and confused and processing of information is very hard.
 
There is just black space everywhere and all my reference points are gone. This is when I will self harm - from fear and to create a reference point, a comfort, something to stop the spinning and give direction - but then it brings with it its own problems.
 
I cannot manage when people change their operating systems, for example on a day where it is non uniform day (they don't dress the same and the different colours confuse me and recognising them is harder - they also behave differently) or for the mainly female staff if males come into school, we had builders, the females behave differently - laugh louder and move differently etc so I have to try and learn them again - on teacher who I work with I did not even recognise when she changed her clothes for a 60's theme and people kept having to tell me who she was. I work 20 hours which is the maximum I can cope with noise wise, processing wise etc - by the end of the week I am very, very tired. I have been there paid for about 6 years but was there voluntarily before that.
 
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Routines work for Tim 90% of the time.

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Age at interview: 39
Sex: Male
Age at diagnosis: 39
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Sequencing can be a difficulty I think it is for most people with autism. I must admit that for myself. You tend to get into the habit of having a routine which can be difficult, because if anything happens to then disrupt the routine it can fool it. But if you do get into that routine it is trying to get yourself out the door in the morning. And it’s like you know right I’ve got this to do, this to do, this to do and what I’ll often find is that if I need to do something like picking up a laptop for example, that’s the thing that will get forgotten. The rest of the routine may have gone right but it’s like you know I needed to pick that laptop up this morning. Not done it, because it was outside the routine. It works 90% of the time. It’s only if you get anything that would be a little bit different that I do find…

 

Last reviewed July 2016.
Last updated November 2010.

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