Life on the Autism Spectrum
Autism, health & depression
Whilst people with autism are often in good physical health, mental health problems can be common.
Several people we talked with had health conditions including diabetes, eczema and food intolerances. Alex developed epilepsy after a road accident which was a consequence of her inability to judge distance and speed effectively. She has a medic alert bracelet and her local hospital have “grab sheets” which provide different levels of information about her condition. She says that most health professionals pay little attention to these.
When Alex is unwell, she withdraws from everyday life significantly and watches DVDs for 10 hours...
When Alex is unwell, she withdraws from everyday life significantly and watches DVDs for 10 hours...
I couldn’t follow my routine that I, you know, I’d get up and turn my computer on, because I get up quite early and usually sit on my computer for an hour before I do anything. But usually I keep an eye on the clock and think alright, you know, you know, it’s half seven, that I need to go and have a shower and do this and do that, but when I was ill, it was just like, I kind of like sunk back into a world of my own and just did things that made me feel comfortable like repetitive watching of DVDs and stuff like that, whereas normally I would limit myself to watching the DVD once. When I was ill, I just used to, I just obsessed over them. And because I obsessing over them, I was ignoring eating and drinking and talking to people and I just got into kind of like a vicious cycle, and once my chest infection had clear up, I really struggled to get back into the habit of going to like my day service every day. And I was like, I’m coming today I can’t be bothered and then when I did go, I was like staying for a couple of hours and then going home again, because I just, I was out of my routine and I was finding it really hard to get back into my routine. And just the pressure I was putting on myself, meant that I couldn’t concentrate on things like cooking or, you know, reading a book or anything like that. It was just beyond me.
A few people had food intolerances which could cause them discomfort. Gail sticks to a diet of fruits, vegetables, meat, potatoes and rice to avoid getting stomach aches. Ian has become obsessed with his weight since his mum remarked that he was getting fat. He checks his weight every day and tries to walk as much as possible.
Miranda has an intolerance to eggs and yeast and so finds it difficult to eat out.
Miranda has an intolerance to eggs and yeast and so finds it difficult to eat out.
And this is where I find it very, very difficult, to actually go to places because also I have, I don’t know whether it’s because I have this disability, but I have a lot of serious dietary problems. I’m gluten I’m wheat, I’m diary, and I’m lactose and I’m yeast and I’m egg intolerant. So I find it very, very difficult to go out and have something to eat somewhere, because nobody caters, and in this day and age I think it’s wrong because you should be able. I mean I could understand if it was five years ago, or even longer. But I mean in this day and age I should be able to get a gluten free diet anywhere. It’s just ridiculous. You just can’t walk into any café, or any food establishment and get something to eat, because they don’t cater for you.
Mental health problems such as anxiety and depression were common among the people we talked with. Most said they had experienced depression in late adolescence/early adult life and several people had occasionally felt suicidal or tried to take their own lives. Christopher summarised his depression as an outcome of how people have treated him in the past;
“Loneliness, anger and frustration and, just unhappiness really. Just all of those into a big searing stew pot of despair.”
James became significantly depressed as a child and ended up in a psychiatric ward.
James became significantly depressed as a child and ended up in a psychiatric ward.
And I mean on top of having Asperger's syndrome I just beginning to act up behaviourally in the sense that I was beginning to get a bit fed up and it was a natural normal way because I just thought at that nothing was the change and I became pretty significantly depressed.
It was at that stage and... at that point... I was put into a child’s psychiatric ward. That was quite, that was really difficult for my parents and for myself and I was put on antidepressants and you know I was 12 years old and I think there was a sort of feeling on my part that antidepressants were … on my part I was 12 years old and I was already on antidepressants. That is pretty depressing [laughs] in itself.
And I became... you know really fed up and there were points where, you know, people were coming in and I just almost refused to help and I became really, you know people sort of presume that if you were Asperger's you don’t have any sense of humour and so they were quite sort of, they you think you take everything you say for granted.
And it was just a point where some sort of, I don’t even know, some sort of therapist or something came in and starting asking me questions and asked me if I ever saw things. At that point I said I did actually see things and they said well tell me more about it. And I said well sometimes there is people’s faces; I see with faces with sheep on the top of bodies. She went into like a massive meeting and told everyone about this and it was quite embarrassing for her. But that is what the stage I got to. I was so fed up with it. I just didn’t really seeing the point any more if nothing would have helped me.
But then at that stage I was probably the lowest, the lowest I have ever had. The sort of feeling that nothing was going to change. There was no hope. There was no way that I was ever… things were ever going to improve at all. I was just at that stage where you just thought I have got Asperger's syndrome and this is what it stands for, it stands for the fact that I am never going to really stand a chance.
Some people related their depression to the difficulties they had with relationships, periods of unemployment or, in a few cases, debt.
John became depressed when he stopped working and felt that everything was pointless.
John became depressed when he stopped working and felt that everything was pointless.
And I was, I was feeling very, very depressed at home and when I went to see the doctor, which was a while ago, the doctor, my GP he put me in touch with a social worker, which I had never had a social worker. My mother had had a social worker. I didn’t have social worker. The house was beginning to fall into disrepair. It is quite an old house. I know absolutely nothing about renovation grants or anything else. It was a completely alien world to me, anything like that. Anyway he [name] came round, the social worker. Well first I felt very guilty about having a social worker but he said “No it’s my job”, and that is what it is really, what is what he gets paid for doing. He got the house renovated and one or two other things done. While I, he was doing all this, he said, “Are you doing anything?” “No, no.” You know work wise.
He put me in touch with an outfit called [company] Designs in [City] and basically what they do is they help people with more or less serious mental disorders by training them in woodwork and office procedures and things like that. And whatever I have got, and I knew it at the time, it was long before I was diagnosed. I don’t have a learning disability. I have got people disability. I haven’t got learning disability at all.
A few people talked about self-harming and two women “wandered in and out of bulimia and anorexia”. Several people described being bullied either at school or at work. Peter said:
“I was very good at hiding depression from my mum and dad. When I was bullied at school I used to always come home happy or that’s what they thought”.
Harriet talks about taking an overdose and self harming during her adolescence.
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Harriet talks about taking an overdose and self harming during her adolescence.
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My relationship with parents was bad, violent and unkind. If my mother thought I was not being good she would give me her valium to make me what she wanted but I never got it right - I took an overdose and stuff but she sorted overdose and was even more cross. I went to school one time in my teens with visible slashes on my wrists because I was so scared and confused but no one said anything (teachers or pupils) and neither did my mother.
Catherine wrote a letter to her mum saying she wanted to kill herself and had years of therapy...
Catherine wrote a letter to her mum saying she wanted to kill herself and had years of therapy...
Sex: Male
And, you know, and it was just things like obviously I couldn’t ask questions in class. I couldn’t put my head up, because I just couldn’t speak in front of people, didn’t, you know, and it was just sort of… And just during, say when I got to about fourteen, fifteen, I just, that is when sort of I started getting really, really depressed and I would just spend all my time when I was at home, you know, sitting in my room. I didn’t sort of, you know I didn’t have any friends, I didn’t go out. Outside of school, I didn’t see anyone, you know. And when I was about sixteen was when I started seeing counsellor and things.
I went to the doctor and you know, ii just remember I just wrote my Mum a letter saying, you know, I feel really bad and really depressed and I don’t know what to do and I really wanted to kill myself. I just kept thinking about it, you know. That was kind of when it all started getting more serious, oh we have to take you to the doctor and all this, and [intake of breath] but yes, I mean, school, it wasn’t a very good experience for me. Maybe the last couple of years were a bit better, because I really made friends with the person who was my cousin, who I was friends with in primary school, because she was in my class again. So I kind of got on with her, you know, she was kind of another person who was getting bullied and she wore glasses and stuff. So we had that in common, you know. And she liked reading, so we used to go into the library at lunch times and read and stuff.
But and I liked art lessons, because I was with her in art lessons. So that was good, because you just kind of got to sit about and draw stuff, you know.
But yes, so …
Then what did you do when you left school because you obviously got together?
Yes. When I mean when I left school, it was kind of basically everybody I did know all went off and went to college and started going out and drinking and doing things that normal young people do, which.. I just kind of was in my room for years. I just did, you know, I was just like living in my room and really depressed and I was seeing all manner of doctors, counsellors, psychiatrists, CBT, everything, but obviously because they didn’t know what I had, it wasn’t helping one bit. I got sent to group therapy, which made me feel insane because sitting in a room of people all staring at you, with all these bright lights shining on you. I felt really faint and I couldn’t speak and I kept telling them. I don’t think I can do this and they kept saying, “Oh come back because you don’t you are not helping yourself.” So you know my Mum had to take me there and I came out and I just said to her, “I would rather walk under a bus then ever go in there again.” So she just said, “No you are not going in there again.” You know, because it just made me feel ill.
And yes, so I was just sort of a succession of counsellors, different antidepressants and things and getting panic attacks every time I was anywhere in public, had to talk to anyone hence me not going anywhere really. So yes, I mean that was just sort of from when I left school.
Some people had tried to commit suicide by taking overdoses. One man, for example, took an overdose after gambling away his life savings. His wife was unaware of what he had done; he described thinking at the time:
“What am I going to do? You know, I am not working. I am not possibly having an income. How am I going to occupy my time? I won’t be able to live the way I have lived up till now on retirement money and so on. It all sort of came together and the last thing I thought of is sitting down and saying to [wife] “Look, I have been a stupid so and so. I have spent our money and what are we going to do now then? Let’s work it out”.”
Another man who had got into a lot of debt and tried unsuccessfully to do extra overtime to clear it, became very depressed. He said:
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.
“It never really clicked with me, I could actually go and see dad and say “I’m in a lot of trouble here”. And then everything just built up.”
Daniel linked his suicidal thoughts to periods when he was physically ill and he thought there was a link between his health and periods of depression.
Margaret constantly worries about Daniel killing himself after he took an overdose a few years ago.
Margaret constantly worries about Daniel killing himself after he took an overdose a few years ago.
Margaret: Well yes. We have been together, we have been together nine years, but in January 2000 he took an overdose and he was living with me at the time. And I had gone out and he had taken the tablets while I was out in the middle of the afternoon, and from then on, it is almost obsessive me trying to make sure that everything is all right because it was very difficult to work out the reasons behind all that and what was involved. So I feel responsible for him.
I do feel responsible for him. So I always try and work out what he is thinking or try to see if I can work out what he is thinking and how things are going. But then we end up, we end up falling out because I do become too possessive of him, because I want to know exactly what he is doing and what he is thinking and I just have this fear that we might be back where we were then, seven and a half years ago and I don’t think I could cope with that.
Daniel: I constantly have to tell her that I don’t want to kill myself and I don’t feel suicidal and stuff.
Margaret: But a lot of the times in the seven years he says he has and he has demonstrated in a lot of various ways that he wants to harm himself and he forgets that. And that is an issue. He does forget a lot of things. And he will forget important things and he will say, “Oh well,” you now, “Don’t fuss because I am not going to kill myself.” But then I’m thinking, well, what you were you doing two years ago? What were you doing six months ago? Whatever. Something that was quite dangerous and would physically harm him, all the ideas and thoughts that he has had. So even though he says he is not going to do it again, I am stuck with this thought that I am not sure he understands what he is actually doing when he is doing it.
Daniel: One of the sort of main problems I have is if I am ill or anything like that, as in physically ill, I tend to get these sort of psychoses where I constantly think about harming myself and everything and I don’t want to do it. But it is like, it is it is almost like a Tourettezian thing of I want to harm myself which is really strange. But, I know damn well I don’t want to do it sort of thing. But sometimes, because, if it lasts a long time, sometimes it does get to the point where I think well you know, life like, you know, it is like me brain constantly telling me one thing and me heart or whatever other part is telling me something else. And eventually….it is almost a battle of wills between meself. It sounds a bit multiple personality. But yes.
Mark describes how he resolved to do 'normal people things' after taking an overdose during the...
Mark describes how he resolved to do 'normal people things' after taking an overdose during the...
Had you heard about Asperger syndrome before then?
Yes. Although I have to say I can’t terribly remember exactly when would be the first time I heard of it. I mean I remember from being very young and always having an awareness of being somewhat different and I think sort of multiple factors could be involved in that. I think sort of things eventually came to a head when in the summer holidays between transferring from fifth to sixth year in the high school, ended up overdosing and ending up in hospital and sort of sat there thinking, you know, I am not really terribly happy with the way my life is. And at that point, you know, I, you know, I socialised with people in school, didn’t really at all outside of school, didn’t go to parties, didn’t to the pub which naturally every one else did do.
And so I sort of resolved that in that sixth year of high school, I would do the normal people things. I would go out to parties. I would go out and get drunk and do all these social things. And thankfully, you know, my university requirements were basically nothing, so I didn’t actually have to academically do anything that year so I really sort of did have a year where I could go out and get plastered on a very regular basis [laughs] and it didn’t at that stage make a huge impact in my life.
I did feel it was very helpful because I had that time to do lots of things, drink far too much, learn [2 sec pause] how one behaves or is expected to behave in these sort of social situations, so that when I did go to university it wasn’t a shock. I was prepared for it all. And to be honest, I went out all the time, got drunk far too often, as many students do and academically was incredibly unsuccessful. But from a social perspective, it was very successful, I would say. You know I did all sorts of things that everyone does to excess I think I sort of coped really terribly well with it.
Some people were seeing psychologists to help them with their depression and others took antidepressants. One man said:
“And so I was quite depressed and that is maybe when I got onto risperidone. They didn’t agree with me. I can’t remember. I have got so much stuff. I could set up my own chemist.”
An expert in autism has helped Simon deal with his depression.
An expert in autism has helped Simon deal with his depression.
Unfortunately during my last year of college I did suffer from depression which for an autistic person is not good, because obviously the whole emotion thing. It was really, really hard, and that affected me at work really and because I weren’t able to sort it say it, you know, or even understand how I was feeling half the time. Because, you know, depression’s a hard thing to describe really.
You know, you’re just down all the time, and yes, it was really, really hard, and unfortunately it did take an effect on my work. My last year of college, there was a moment at college where I just thought about just not bothering with anything anymore, because it was just at point where I felt nothing was working for me really. Just differences became over complicated and it was really, really hard, and thank goodness that someone actually noticed that, because obviously I can’t, I can’t tell myself because obviously my emotions aren’t really my thing, but, someone noticed at sch… at my college and they then informed my parents and then my parents then informed someone that was an expert in autism at the time. Someone called [name] who used to basically, well she was just an expert on the whole thing and she sort of got me really sorted out and stuff. Helped out and that and just expressed to the teachers and stuff you know, that, that I had this problem, and you know, it wasn’t necessarily, you know, my fault that I was depressed and stuff, which is what, you know, I had to deal with it really.
What do you think caused the depression?
You see that’s really, I think it was a mixture of things. What happened was, which I think was the main cause, the main problem, what caused it mainly was, when I joined college, we had a class and stuff and you sort of had to make friends all over again, after you leave school which was quite difficult for me obviously. And I made some really good friends and throughout each year of my course, and I passed the first course and then gone to the next level, I had always a friend there. And when I got to my third year, that sort, those sort of friends I made had started leaving.
Did you take antidepressants?
No I didn’t. I didn’t take any medication. I tried not to take any medication for my autism whatsoever, even some days where my anxiety and my insecurity is really bad I don’t take any medication for it. I do have some like rescue remedies and stuff as I call them upstairs and stuff, like just sort, like basically just like relaxing, they’re not medical, like doctor medication or anything like. Just basically natural remedies and stuff like that, and that sometimes does help. I didn’t take anything when I was at school, no, college I mean, I didn’t take anything, which might have been a good thing, it might have been a bad thing. But I feel that sometimes with medication it sometimes suppresses the issue rather than solves it. So, yeah, that’s my opinion. You know, for some other people it may help, and some others it may not.
Russell would prefer a cure for his depression rather than daily medication.
Russell would prefer a cure for his depression rather than daily medication.
And you used to rely on antidepressants?
Yes.
How do you feel about that?
Mixed emotions I think. I suppose it’s good because I’m a little more under control, although I wouldn’t say under enough control, because there are still points where I’m prone to outbursts and anger and bitterness and you know, being miserable. But I suppose that happens to a lot of people today. So it kind of reduces that, but I’d rather some more permanent, a more permanent solution was found. You know, if I could find some kind of cure which makes it stop dead in its tracks, then that would be fantastic rather than having to go through the morning ritual that I must take my pill. My antidepressant pill every morning otherwise that day I’m going to feel absolutely awful. So that’s, that’s kind of a down, a down point on it. If I, if I do forget then a lot of people will notice. People will notice, particularly in my family. They’re quite receptive to my mood changes.
John has concentration problems that have been eased with antidepressants but he would like...
John has concentration problems that have been eased with antidepressants but he would like...
What do you think, what could help you do you think?
Well I think they’ve helped me in part by, by altering the medication that’s assisting with my depressions and that has by tackling the depression they’ve improved the concentration a bit, but I think, myself, that looking at things like, you know, attention deficit disorder in adults, I mean which is, it was long thought that it was a childhood problem only. But I understand that there’s some psychological work done in Australia, where it’s been particularly, you know, people have come to the understanding that it does persist into adulthood, you know, not with the kind of hyperactive symptoms that you might see in children. But I would think that some of the potential treatments for that and there are drugs that are given for attention deficit. There are, you know, the mild amphetamines like Ritilin, things that are like mild stimulants, the mild amphetamines that are used, things to treat attention deficit. I would think could very well assist with my mental functioning there. But the psychiatric opinion that I’ve come across locally is to say is to not know about attention deficit as distinct from hyperactivity. And that their thinking if you’re not displaying symptoms of physical hyperactivity, you can’t really be suffering from attention deficit problems, and I think they are mistaken on that, but that’s, that’s the opinion they’ve, they’ve come to. And it’s very hard to know where to go if your own psychiatrist is disagreeing with it, I’m not saying that’s the end of the road, but it’s hard to know as an individual patient to know where to go for further assistance really.
In terms of you’re saying about your concentration?
Yes.
What is it exactly that, I mean can you describe to me what it is the problem you have concentrating?
Yes. I think it’s more than one problem there. I think it’s on one level it’s thinking can be slower than the average person. And there’s also distractibility, the business of being distracted by other events and other environmental factors. As well as a sort of obsessional approach to things that, that otherwise slows you down. So I think it’s, you know, I know you want to discuss employment situation later, but you know, if you’re working in an office situation and you are much slower than the average person at doing the work that almost inevitability undermines your position as far as the employers concerned.
Accessing appropriate support for their depression was generally difficult.
Christopher says finding a decent mental health service is like trying to find the Scarlett...
Christopher says finding a decent mental health service is like trying to find the Scarlett...
Oh everything really. Everything bad is like a little, I don’t know it’s like, ingredient into a cake, everything’s an ingredient and it makes some kind of evil cake that’s trying to kill me, kind of thing. It’s not very good imagery, but, that’s how it supposedly feels. It feels like they are two people inside of me. One is, both are intelligent, but one’s kind of evil and angry and delights in pain, and is a bit of a sadist, but, and the other’s like all sweetness and light. I think they kind of fight and that’s what makes me like I am. Very strange.
Do you take antidepressants?
No.
Is this a sort of ongoing thing or is it just occasionally?
It’s been ongoing since about year ten, kind of like first, mini breakdown slash meltdown. The problem is I’m just not very good at dealing with emotions of any kind. I’m good at dealing with happiness, yes, I’m good at dealing with happiness, it’s just any other emotion I’m not that good at, dealing with
Have you found sort of strategies for dealing with this?
No. We don’t really have any strategy of any kind. Probably because we keep on being messed about by mental health services, they’re here, they’re there, they’re everywhere. They’re nowhere. Finding a decent mental health service that will actually stay with you, is like trying to find the Scarlett Pimpernel.
Learning to understand what needs to happen to keep himself happy and healthy has been important to John L.
Learning to understand what needs to happen to keep himself happy and healthy has been important to John L.
Last reviewed July 2016.
Last updated July 2016.
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