A-Z

Life on the Autism Spectrum

Autism: experiences of health & social care workers

Some people talked about how they were supported by professionals in different ways. One man, for example, found a local job support agency helped him to find a job and provided support within the job. Another man had a care worker who visited every couple of weeks and helped him with organising his home and reducing the clutter he lived with. A few people lived in supported living accommodation and had round the clock support.

 

Mary is getting more used to going out and about with the help of her support worker.

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Mary is getting more used to going out and about with the help of her support worker.

Age at interview: 22
Sex: Female
Age at diagnosis: 21
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The support worker is very, very helpful. I see her every week, every Tuesday for four hours from nine till one. And that’s really about like getting out more, and, you know, we mainly go to cafes, because I like eating out at cafes and for a while I didn’t do that, because I was just scared, but now I’m getting more and more used to eating out, going to cafes which I really enjoy. So we could go to many cafes in [town name] now. And I go on the train. I travel quite a lot now. I mean there are places I can go to that I never used to go to. So… you know, I go to [town name], I go to [town name], I go, I’ve been to [town name]. So I’m getting increasingly used to going on the train.

“If someone says ‘in four week's time’, I think they mean in four week's time”
While a few people had good experiences with the provision of appropriate support, many had not. This was often related to the lack of understanding professionals had about autism and was very frustrating for people.

 

Debbie describes how she has not been able to get the support she needs.

Debbie describes how she has not been able to get the support she needs.

Age at interview: 44
Sex: Female
Age at diagnosis: 35
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It was… it took a long time for me to get a social worker. The advocate had to keep pushing  and … but then eventually this social worker happened to come across my folder at the bottom of a pile. I think it had been forgotten about and she took up my case. The very first time she came to see me I was really reluctant to talk to her because I was only used to me mum. I sort of did talk to her, but it was very difficult. I didn’t know what I wanted or what not and the thing is they don’t… when you are an adult they don’t listen to the parents because they think that you are an adult you can make decisions, but what they don’t realise is that people with AS still need that guidance from their parents.  

 

Well I can’t say I am all that thrilled with the  outside caring professions. I have had some bad experiences … When my mum was alive, when we had been diagnosed after a while  somebody said that I would need a social worker. Well after a while, mum and dad were planning to go away for seven weeks and I had never really been left on my own for that long and she felt that I could do with some sort of support network so if anything went wrong, of the unexpected, and so  there was somebody that I was working with at the time, sort of being, supportive every so often and she sort of found me an advocate that would help me push to get a social worker.  That is what this advocate did.

 

So it was all right. And we were telling the social worker that I can do a lot for myself and she said, well you are going to find it difficult to get help because you can do a lot for yourself which sort of took away me confidence a bit because I was, you know, quite bothered about wondering what would happen when something did happen to my parents. [5 sec pause]. But she came every so often you know. I didn’t have any support  while mum was alive, you know, and then mum died so I didn’t know how I would manage without her and I asked the social worker to set up some sort of support, an outreach agency that specifically dealt with  autism and Asperger's syndrome and started telling them, but it wasn’t very suitable because I can only cope with  having the one person. I can’t cope with too many changes.

 
I would have to see one or two or three people and I just found that difficult so I stopped it. And then  there was – I heard of a specialist agency that supported people with Asperger's syndrome to, like to live independently and did home care and then  I decided to try them. Well it didn’t go very well to begin with and the first  support worker they gave me, hadn’t even been trained in Asperger's Syndrome and it was very difficult for me and for the person because she didn’t know what to do. She ended up leaving and I was sort of saying to this person, “Your support workers need to be trained before you put them with anybody.”  So then they gave me another support worker. She was nice but during that time  I told the man in charge, you know the type of difficulties that I had and the kind of support that I needed, but it just seemed, he just wouldn’t listen you know. I felt as though it all fell on deaf ears which was very distressing for me.

 

Anyway after a while this other lady started coming on her own but it didn’t work out. And I told this lady how, I wrote some things on, some information about how I needed her to relate to me but she got rather defensive and upset, you know, and I didn’t like that. And so I sort of told the man in charge and things like that and he said, “Well actually she has got family troubles she is not coming back.” And then I thought of emailing the chap.

 I said this is what I want to see in a support worker. I need somebody that is patient and kind and have a high level of understanding of Asperger's syndrome. He said, “Well I know that you want this, but we can’t guarantee it” which I thought was a bit strange and so I decided I just can’t cope with this. [cut some here]  all the man said, was that I was asking too much, you know, you know asking for somebody who was patient, but I thought that was a bit ironic because that is what people like me need, you know, and I felt as though I had been treated very unprofessionally and because of that I just don’t think I could cope with having any outside support because I have lost my faith in them. 

 

It has taken a long time for Alex to get an appropriate care package. She had a long period of...

It has taken a long time for Alex to get an appropriate care package. She had a long period of...

Age at interview: 28
Sex: Female
Age at diagnosis: 3
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The trouble is when you get older and your abilities change - which for some people they don’t but some people they do - and you get passed onto adult services, no one, no one knows where to place you if you’ve got an average IQ, whether you’re learning disability, whether you’re mental health. So you end up getting passed between the two and communication between the two is just poor. Information gets lost and then you end of kind of like lost and don’t know what to do. The learning disabilities teams are great, but they don’t have the facilities to cater for people with the higher IQ. The mental health team don’t have the understanding of autism because it’s not their thing, but they try, and there isn’t any group locally within like Social Services that a person with higher functioning autism would fall in. 
 
Things like direct payments though are a godsend because they mean that you can choose your care. So you can employ a personal assistant. You can attend day centres or organised activities. It kind of like gives you the freedom to go around somebody who suits and can meet your needs.
 
So, you know, it would nice to have a team that’s kind of like across between mental health and learning disabilities, because at the moment all the mental health team do is supply the money for my direct payments. I really don’t have any contact with them at all. My social worker actually turned round and she said that she wouldn’t take me to hospital appointments because didn’t have a good enough understanding of autism. It’s like how can somebody be in charge of your care but not willing to take you out or understand your condition. It’s quite scary actually when you think about it; weird.
 
Before, like I’d have more contact with my social worker under the learning disability team. I mean I used to speak to her weekly. And she used to pop in and see me, and if I had something that I needed to do that I couldn’t do on my own, she would take me. Whereas now the mental health team are very much hands off and they’ll coordinate everything. And I think they’re actually doing a very good of coordinating it, but they’re very hands off. Whereas the learning disability team is very hands on, and I think I’m struggling to kind of like adjust to that.
 
So would you say you think that you’ve got a good care package?
 
Oh I’ve got an ample care package. I don’t need any more care. I don’t want any more care. I like to be independent. But I think it’s taken a while to get to this level. Is it the right level? In an ideal world then somebody would come in and help me cook every day, so I could eat a cooked proper meal every day. But I also think that I wouldn’t like that anyway even if it was offered. So… you know, I value my independence. I want to be as independent as possible. So having a company on call 24/7 rather than having somebody in my house 24/7 is much nicer for me.
 
 

John's problems with attention have not received the support he would have liked.

John's problems with attention have not received the support he would have liked.

Age at interview: 47
Sex: Male
Age at diagnosis: 45
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And did this as well the diagnosis did it give you support, or she give you support for your attention problems?
 
No. Absolutely not, though. That’s the compounding thing that I’d gone there with this one thing in mind, thinking because that was to me what was creating the biggest problem, not only in employment, but I’d also tried to return to education. I tried to complete an access course and found that very difficult because of my concentration problems, access to higher education that is. And no, obviously, you know, the NHS are working within the constraints of their resources. They can only offer you so much time and you know, they’ve got perhaps some people who are more serious than others, but, you know, if they review your case on a periodic basis there’s only so much can be fitted into that interview and, things to do with my concentration were always getting pushed down the agenda and getting squeezed out. So no, no, the original problem that I’d gone there with ironically didn’t get addressed at all. No.
 
 

Alex thinks she 'fakes understanding' sometimes and social care professionals don't really...

Alex thinks she 'fakes understanding' sometimes and social care professionals don't really...

Age at interview: 28
Sex: Female
Age at diagnosis: 3
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Yes, it was like their risk assessment what they did of me. I got a copy of it the other day, it’s only taken them six months to do, and it’s got things on there like hostage taking, and arson and all these weird and wonderful things and its completely irrelevant to me. But it’s like they tick the box saying that I was a danger to children. And when I questioned my social worker about it, she said, “Well you said you don’t like children.” I said, “Oh I don’t like children - well it’s not that I don’t like children but I find them very unpredictable, but I’d never hurt a child or anything.” And she was like, “Oh most of the clients I work with if they didn’t like children they’d hit them.” And it was just like well you can’t apply that to me, just automatically because that’s what you work with. It’s awful, and you know, they don’t understand communication needs either. It’s like its much of my communication is really, really good I think. I do kind of like fake a lot of understanding at times. And things will throw me, like my social worker once sent me an email saying, “I hope we can foster a positive relationship.” I was in tears for an hour because I thought I had to go and live with her and she was fostering me. It was awful.
 
And, the social worker before that, again from the mental health team, was at a hospital appointment with me. I was really distressed because they tried to take blood and they couldn’t get it out. And she kind of like just stood by the main door and said, “Wait there I’ll be two minutes.” Well I counted on my watch two minutes and she wasn’t two minutes and after six minutes I walked off and I ended up getting lost in town and it was a complete nightmare. But she couldn’t see that by saying two minutes I would actually hold her to two minutes. But if she wasn’t going to be two minutes, why did she say it? She couldn’t understand why I was thinking like that. Whereas, you know, under the Learning Disability Team, as much as they couldn’t provide services that catered for my intelligence, they did understand that they had to be quite good with their wording and not abstract in their wording and things like that. 
 
 

Alex describes her experiences of direct payments and commissioned services.

Alex describes her experiences of direct payments and commissioned services.

Age at interview: 28
Sex: Female
Age at diagnosis: 3
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Can you explain how that’s worked for you and give a bit more information?
 
Yes, I was first given direct payments about three years ago and it went completely wrong. It wasn’t really explained to me properly. I didn’t know what I could do with it, and what I couldn’t do with it. And in the end I went back to having commissioned services because it was just easier for me to manage. And then once I’d kind of like exhausted all the, you know, council run services. I had to go back to direct payments. I actually went on the internet and just Googled like autism and learning disability in the area where I lived. And I came up with about three or four independent day services. And I wrote to three of them, and it was purely out of luck that one didn’t reply, one said they had a waiting list and one replied and said, “Would you like to come in for a day?”
 
And I went in for a day and I, it wasn’t perfect but it was better than anything I’d before. So I could start going a couple of mornings a week, because I hadn’t done anything and a lot of things had failed. I’d lost a lot of kind of like my confidence in different services. So it took me a while to kind of like build up trust with them and everything. And gradually I just increased how much I was doing. Until I now do four full days a week with them. And I also have a direct payments budget to employ a personal assistant, who can like take me to medical appointments, take me shopping. Those type of things.
 
 

Alex's social worker admits she has no understanding of autism which is 'scary'.

Alex's social worker admits she has no understanding of autism which is 'scary'.

Age at interview: 28
Sex: Female
Age at diagnosis: 3
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There’s been some kind of like accidents, like, you know, I’ve tripped over and fallen and broken my arm and stuff. And I’ve haven’t known who to call for help because the mental health team does have an out of hours number called the Crisis Team, and well I’ve got a nut allergy and ended up in hospital after accidentally eating nuts. And one of my friends on the internet knew I went to hospital and called the Out of Hours Crisis Team. They said to her, they asked her if my mental health was intact, and she said, “Well yes, she’s just eaten nuts and she’s in hospital, like quite unwell.” And they said they can’t do anything if my mental health is intact. So they wouldn’t come out and support me. And I was stuck in a hospital, and you know, I told them, told the hospital that I was leaving. They gave me tablets. Didn’t have a clue what I was meant to do with these tablets. Got home and my PA ended coming round and spending over an hour trying to find out what these tablets were and when I was meant to be taking them, because they just gave me a strip of tablets, they didn’t them in a box or any instructions. 
 
You know, and it’s taken a very long time for the mental health team to actually grasp any concept of autism whatsoever. And now they’re just passing the buck. They’ve just said, “If you’ve got a problem phone the care company. If the care company think it’s something that Social Services should be dealing with, they’ll contact us.” So although I have a social worker, she’s not actually willing to do anything any more, because … I mean she openly admits that she has no understanding or training in autism which is quite scary.
 
 

Sam talks about the support he has had that hasn't helped him.

Sam talks about the support he has had that hasn't helped him.

Age at interview: 26
Sex: Male
Age at diagnosis: 24
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I’ve been to two autism organisations so far, both of them have offered me one to one support i.e. I spend however long, potentially ten hours a day to two hours a day or whatever, with one person which I can do pretty much what I want to do in that particular time. And also I have attended classes… they weren’t classes, inter… workshops. One we were building a mosaic, I built a mosaic which is not actually in this house currently or I would show it to you. And there was one we were setting up a charity shop, which I didn’t play particularly much role in. I came rather late, but we were organising, we were able to get a business to give for members of this organisation work experience. And so we tried to set up a charity shop, we did actually recently open, and it was very successful here. 
 
But the one to one support is what I’d like to talk about. In the first organisation I went to, they advertised it as being, I can use this time to do whatever I wanted to do which sounded great for me. Because I’ve had a lot of counselling and I’ve found that I can spend a lot of time talking and during that hour or whatever, I can maybe establish a lot things about myself and what I should be doing with my life, and how to change it. But then for the rest of the entire week I’m just focussing back on my obsessive thoughts and taking no practical action whatsoever, anyway coming back a week later to counselling and just talking about the same thing. So the idea of the autism thing is that it’s much more practical, I can do what I want with it. And so… and trying to sort out my life, trying to get things in order, my life’s quite of a mess. It’s all … There’s no organisation, it’s all chaos, what I’m doing in my life, and my attempt to try and sort out my mental health problems and really very minimal, I do almost nothing in relation to it because it’s so overwhelming, and just so much easier just to sit in my… just simply think about whatever’s consuming my mind, which is never this particular thing. So practical things is what I really needed help with.
 
Unfortunately, the first autism organisation I went to did not have the same notion of practicality as I did. Their entire notion was to give me something to do during the day. And their notion of what I should be doing was things like go to the park for example, was one thing we did. Going to a nearby town for example to walk around and have a look at it, going for a walk somewhere. All things like this, practical things like this, which quite simply I didn’t want to do, and I had no particular interest in doing whatsoever. And yet, this is what they very much insisted on to a point whereby they actually ended support for me, even though it took over a… about fifteen months to set up, I was actually seeing them for about two and a half months once per week before they completely cut support. And I just couldn’t understand why, why they thought I should want to go to, you know, the park and walk around it, is not my notion of sorting out my life. 
 
And I’ve found since then that perhaps a lot of autistic people to my mind are really quite immature, which is fair enough, I’ve got no problem with that, but in that regard I could see, well it’s not as if… immaturity is perhaps… a lot of them are, but then again a lot of them aren’t, and would still be interested in doing this sort of thing, but not for me.
 
Quite simply it’s almost the point is that a lot of autistic people don’t have any sort of life, and so they are trying to give them some sort of life, that this organisation was trying to do. But what they failed to do… I know some of them are very immature
Funding issues could interrupt the support people had. Ian, for example, had the support of a psychologist and an “autistic nurse” which was helpful until the funding was withdrawn.

Those people who were in further education or were about to start further education, felt they had been offered appropriate support to facilitate their studies (see ‘Employment’ and ‘Further Education’).

A few people talked about how they felt that health and social care professionals had not been very supportive towards them. This was linked to a lack of understanding and awareness about the autism spectrum and, in particular, Asperger syndrome. A few people found that their GP’s had little knowledge about the autism spectrum and one woman talked about taking a counsellor who worked in the autism field to the doctors with her to help her explain what she needed to explain.

 

The educational psychologist didn't think James would go to university.

The educational psychologist didn't think James would go to university.

Age at interview: 22
Sex: Male
Age at diagnosis: 12
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Why do you think the educational psychologist was so sure that you couldn’t go to university?
I suppose, I mean I’m looking to try and understand why that is. I think there was two factors in a manner of thinking. First of all there is a general misunderstanding of the literature and you know the facts about asperger and, you know, a general misunderstanding at the time you know about what these people with Aspergers could do. This whole idea, you know I think a lot of people struggle with this Asperger syndrome [5 sec pause] it is a difficult, I mean you can almost describe it as a learning difficulty in some sense but it doesn’t really affect intelligence.   It doesn’t affect, you know it doesn’t affect all abilities. I suppose if people hear that someone’s been diagnosed with some sort of you know, some sort of developmental disorder or something like this they automatically presume you know, it’s not possible. I suppose, I think, the second factor is [5 sec pause] she maybe never ran into someone who was in a position that they could go to university.
 
I don’t think it ever occurred to her the reason that like it might be was because they may never have been in a position where it is possible for them to have a chance to develop you know, to get, you know to a certain level, to get to a stage where it is actually possible for them to go to university although up until I sort of [10 sec pause] got my diagnosis and it became all this ‘oh I’ve got Asperger syndrome’ maybe there wasn’t a lot of information but there was just about enough at the time, there was just about enough at the time there was just about enough where it was saveable and that base came along just in time, you know, okay there wasn’t a lot, but I would say if I was two years older than I am now, and that happened at the same stage as it did, I probably wouldn’t have stood a chance and I probably wouldn’t have been here right now. So for me I suppose it is just a case of, you know, I was kind of lucky. I don’t think my educational psychologist had ever seen anyone who had the chance to do it so I sort of think she might have presumed that its not possible and I don’t think she did it... though initially when I found out I was pretty irritated like, how dare she like sort of say I can’t do it.
 
Now looking at it I sort of realise that she was doing it because it was like help, you know, sort of misguided help. I don’t know. I don’t really know what led her to think that but I mean I suppose one other factor was using IQ tests, and Westlaucher tests and things like that, my results were a bit misleading when they came back and things like that it was suggested – I’m not a big fan of IQ tests particularly if you’re working with people with Asperger syndrome – but I can’t remember what age I was but I got an IQ tests basically, you know I add up to 88 and I did one on the internet and for some study and I got like 140 and I don’t think either of them are particularly accurate [laughs]. Like I just of think I am a middle of the road sort of university student and more than anything I don’t care but I sort of think because she relied on that IQ tests she sort of looked at me and said you won’t go to university and she was wrong but I think she thought that at the time. I think that was why.
 

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

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

Age at interview: 39
Sex: Male
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I had one support worker who I generally sort of had a good relationship with. And she got promoted, rightly promoted to a much more senior role and everything else and that was right for her, absolutely. Unfortunately for me, didn't help me one bit but absolutely the right thing for her. But we managed to achieve a lot in our period of time, but then the people afterwards I didn't really have a relationship with. And then I said - I had to keep saying "No, there's no point you sending people who, you know, I'm not - you know - it's like let's sort out some support that's around talking." It’s like that. You don't understand my interests, you don't understand the things I'm talking about. You're not curious. Go away [laugh]. You know? I'm not interested in that sort of thing, you know? If you want, want to sort of engage with me, it's like, you know, just engage. Just don't. So it's difficult really. I mean, I did do a little health thing that was quite useful, and that lasted a few weeks. Included in that was meeting up with someone just for a walk and a talk, about, you know, ordinary boring things. And that was actually quite fine really, you know? So we would walk and we would actually go to, you know, sort of walk round the local park and then we'd just talk about music and football, and different things, and art, and, you know, have a coffee, and that sort of thing. Quite normal. I do see friends, which is again, a kind of support. I probably don't see them enough. I don't want to impose too much on them. But I think that's probably more me than them really. So, so yeah.
 

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.

Age at interview: 29
Sex: Male
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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.

Some people talked about the kind of support they would like.
 

Simon thinks that people with autism should be used to help support people, as they actually...

Simon thinks that people with autism should be used to help support people, as they actually...

Age at interview: 22
Sex: Male
Age at diagnosis: 5
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I think, I mentioned the job bit, haven’t I already? I think definitely that’s an area to improve on. I think more of an area at school like having, actually training teachers to spot people with autism and how, you know, how to deal with it, would be a lot better, rather than sort of just pulling us out of class and telling us off. Because you know, it’s not necessarily our fault, because you know, how we express things is completely, to someone with not autism. They’re able to sort of tell when they have a problem. We can’t do that. So yes, definitely in schools and also more from the government as well, I think there needs to be a separate area, I think separated in the educational side and the job side.
 
You know, a special side, you know, they have the educational side of it and just call it education and stuff like that, they should separate into special educational side, like where the people with autism and other people with the problems actually helping the schools deal with it. Because I think that would be really, really important for schools and that to have that, instead of just having some guy that says, “Oh yes, I know all this, I know all that.” Just does nothing, has noth… I mean they say they have understanding but to be honest, the best people to understand it, are the people that actually have the problem. Even they may not know it, but you know, they can tell you, you know, as long as you keep things very simplistic, you know, in asking me questions they’d have to very specific with it obviously.
 


 

Last reviewed February 2020.
Last updated July 2016.

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