A-Z

Parents of children on the Autism Spectrum

Information

Many parents had little or no understanding of the autism spectrum before they began to seek a diagnosis for their children. Some parents mentioned seeing the film Rainman or thinking that autism was “the kid in the corner that didn’t speak and didn’t look at anybody”. Little was known about Asperger syndrome, in particular. As one mother said; “I had never met anybody that had it or, you know, knew anybody that knew anybody that had it”.

A few parents had some idea through their experiences at work, such as teaching or nursing, and a few parents described how autism was mentioned a few years before their children were diagnosed so they had read some information prior to diagnosis. One mother had read an article about a child with Asperger syndrome and she thought “It pressed buttons with me, I kept saying there is something there but that was as far as it went at the time”.

 

Rosie's knowledge of autism has grown since she was a staff nurse.

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Rosie's knowledge of autism has grown since she was a staff nurse.

Age at interview: 53
Sex: Female
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Yes. I did. I did know about autism but not obviously as much as I know now. I know a tremendous lot now. When I was younger I used to work on the children’s ward as staff nurse, but that was way before autism was ever heard of and there used to be children that used to come in and they used to have loads of tests and autism was just beginning to become recognized. So yes I did understand about autism but I didn’t understand about the different types of autism and how it affect individuals in such individual ways really because every child with autism is so different.
 

Jacqui talks about how terms have changed over the years and how her son was originally labelled...

Jacqui talks about how terms have changed over the years and how her son was originally labelled...

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Did you know about autism before?
 
No. No. I hadn’t a clue whatsoever and dyspraxia was the first thing that was kind of bandied around in years gone by. It was called ‘clumsy child syndrome’ when Matthew was little and then changed to ‘minimal brain dysfunction’ so I think Matt got the label of minimal brain dysfunction in the first place and then they all have, they are all technical dyspraxic, that is Sara, Luke, well Ben has got cerebral palsy, but just a small severe bit, and Joe have all got the coordination problems. But I now know that all these things are all kind of on the spectrum, around the spectrum, so dyslexia, dyspraxia, autism, Asperger's syndrome, all of these things all together in some way. It doesn’t mean every child has got the whole lot but I’m one of the lucky ones that has got the whole lot in my family [laughs]. I just wish I had one that was obsessively tidy. I missed out on that one [laughs].

Information at diagnosis
Information given at the point of diagnosis varied. Some parents were given the diagnosis without any information and felt “cast adrift” or “abandoned”. Some parents were given limited information and a few parents were given a comprehensive pack. One mother described getting “a whole little booklet on just anyone we could possibly turn to that was available for us, so it was really good”.

 

Amanda was pleased with the information pack she was given.

Amanda was pleased with the information pack she was given.

Age at interview: 38
Sex: Female
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Were you given information at that point?
 
We wasn’t, we wasn’t sort of told that it was autism until the diagnosis. The doctor, you know, said she couldn’t rule it out, but they are quite reluctant to sort of tell you, you know, get you along that line unless they are sure. But once he was diagnosed we were given a pack, you know with lots of information, lots of details about you know local support groups, local authorities, and you know, different help he could get. We were given information about, you know, the disability allowances we could claim. But again I am not sure that happens everywhere. You know to be honest, I think in [town] we are pretty, you know obviously it is never going to be perfect but we are pretty well served. There seems to be a lot of help, a lot of positive things. You know, but you sometimes speak to people in other counties and you know they have not got access to the same things really.
 
And you didn’t know anything about autism beforehand?
 
No. No.
 
Did you start to read about it before the diagnosis?
 
Yes. Yes. I started to sort of – well we want on the inter… well I did know a little bit, because we had, the first thing I heard about it… because just before Louis was due for his MMR injection it was all on the telly all the time about that link that people had made so I knew a little bit. But the children that were shown and a lot of documentaries were very severe. And you know, I think, it scared me a little bit, you know. Oh I don’t want to happen to my child. So we went and paid and had separate injections and then it happened anyway. But I must say now that the fear I felt beforehand it is not, nothing as bad as you fear is it? You know it is not that bad. He will go to school. He will do things. You know, its… you have got to try and stay positive really as much as you can, and you know hope for the best. But yes, we started going on the internet but you just get absolutely reams and reams of things. It is too much. I think we looked for a while and then I stopped because I was just… I don’t know I was just making myself quite anxious about the whole thing so I just sort of, I will wait until you know, the diagnosis and then take it from there. Yes.
 

Alison used to read information about autism she was given when her son was diagnosed in bed in...

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Alison used to read information about autism she was given when her son was diagnosed in bed in...

Age at interview: 36
Sex: Male
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I used to go to… when they first gave us the diagnosis they gave us all these A4 leaflets and everything and you would be down here and I would go to bed and sort of take a cup of tea up and lie in bed and read these things and I used to sit there in tears sometimes reading these things, you know. And I used to think oh my God, the things that people go through. What is going to happen? Is this going to happen to us? And all sorts of questions you know and I used to sit there in absolute floods of tears and he would come up and I be like ooh. Hold me book up so he couldn’t see me.  I mean he must think I am a right soft thing, you know.
 

Caron would have liked more information at diagnosis rather than being told to go home and cope...

Caron would have liked more information at diagnosis rather than being told to go home and cope...

Age at interview: 24
Sex: Female
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I would have liked the hospital when they gave the diagnosis to give more information yes. Obviously I have been forced to get my own. But a lot of people that I have met who have children with autism, it has all been the same for them as well, they have all said, “Right your child is autistic, see ya.” And then that is it, then, you are just left to deal with… I mean for a lot of people they are not going to be aware that their child has it, so when they do find out I am sure it can come as a blow and then to just be told to go home and cope with it, you know it is stressful, you know, because autism isn’t something that they are going to grow out of, they are going to be like it forever and no where, you know the doctors don’t seem to take that on board, how the parent could be feeling. You know, it seems to just always be about the child and of course, you know, the child is important but the parent is as well, because they are the one that has got to look after the child.

One parent described how she didn’t get much information at diagnosis but wouldn’t have been able to take it in at that point. She was given “the critical information” that detailed how her son was affected which she found valuable because autism is such a variable condition. A few other parents described giving the health professionals information because they had done so much research before getting the diagnosis.

Sources of information
Parents described using a range of sources of information, including the internet, books, going to seminars or conferences and talking to other parents. Many parents said that they particularly valued finding out about other people’s experiences through the internet and books. It was helpful to hear the experiences of other parents and adults with Autistic Spectrum Disorder (ASD). A few parents said they particularly enjoyed meeting adults who were on the spectrum through support group meetings or by going to seminars with speakers.

Books were discussed by most parents and many expressed strong views about particular books they had enjoyed reading. Some people felt that autism was better represented by fiction such as The Curious Incident of the Dog in the Night time or fiction books aimed at children. Fiction books for siblings were also discussed and some parents said that their children, and in some cases their children’s friends, enjoyed reading them. Other people recommended practical guides such as Tony Attwood’s Guide to Asperger Syndrome while other’s recommended personal experiences like Jacqui Jackson’s Multi-Coloured Mayhem.

 

Dot gives advice about the information she has found useful.

Dot gives advice about the information she has found useful.

Age at interview: 48
Sex: Female
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I think the best information comes from Tony Attwood. It is very clear. He is very parent-friendly. We have got a video in the group that we show quite often. It goes down basically the list of what the symptoms are and more importantly how you work with children with Asperger's. A lot of books I have looked at on Asperger's are academic or not really that interesting to be honest or useful, so I would say start with him. Ask as many people as you can about any services that are in the area. See if they are any good, if they are any good, use them. Look for support groups definitely. Look for email groups; there is lots of stuff on line, lots and lots of stuff. And one of the things I found useful was look for work by people who have got Asperger's. I mean for example, you know my thought oh my God he is never going to learn anything he is you know… and then I quickly found out there is a Professor Temple Grandin in, I think it is, Canada who has got Asperger's and I instantly felt well there is hope you know. So read what people with Asperger's say and altogether you get there.
 

Katrina particularly recommends the novel Curious Incident and says she has a thirst for more...

Katrina particularly recommends the novel Curious Incident and says she has a thirst for more...

Age at interview: 35
Sex: Female
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What kind of information have you found most useful?
 
Probably books. It is amazing actually how many books on Asperger's there are out there. The Jessica Kingsley publications, I mean there is just I would say hundreds of books on Asperger's and I love reading and I have got this thirst for knowledge and I have the internet and I have read books on people’s experiences, going to listen to speakers, adults with Asperger's, there is so much information out there when you can sort of uncover it and once you get your name on a few mailing lists and that then you tend to get to hear about what is happening and what is going on. Yes, just going to conferences and that sort of thing really, getting as much information as you can all the time. I mean even now I feel in quite a nice place but I still read everything and look into everything.
 
And is there anything in particular you would recommend someone else to read?
 
I think usually anything by Tony Attwood is good. It is difficult to think of one, just one thing really. There are so many good things. I have just read one very good book. It is about home educating children with Asperger's which is good, well autistic children I think it is called. Sorry yes, really difficult to think of one good thing. I have just read so many over the years and I loved the fiction book, The Curious Incident of the Dog in the Night Time. I have read it about three times and just don’t get bored with it ever. I think everybody should read that [laughs]. I have got a few copies and I just hand them out to my friends all the time, and say “oh you haven’t read it, oh you must read it, it is brilliant.” So yes, I love that book.
 
What did you like about it?
 
I could relate to it and there was one bit, it was one of the first times it really brought it home to me, perhaps how Callum sees things because he had given a description and he couldn’t remember anything that this woman said, but he remembered like a brooch she was wearing in really good detail or the jacket or something. I just thought ‘oh that is so Callum’, you know, they don’t take any notice of what we are yabbering on about it, it is all about attention to detail, maybe if you had one jewel missing out of your earring or something. How they have just got a totally different way of seeing things. Yes. But I loved it. I just loved his perspective and you know his perception of everything.
 

Rosie has found reading books reassuring.

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Rosie has found reading books reassuring.

Age at interview: 53
Sex: Female
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Yes. I did have a book. I have got a book at the moment. It is here actually because we have watched… recently there has been a whole lot of autism on the television hasn’t there? And there was a film recently about the Jackson family. Did you see that?

 

No.

 

I have got it. My daughter videoed it because it was on late quite late, or for some reason, so I have watched that and since watching that the Jackson family is about a family and they have got I think it is four children in their family of seven, they have got autism or Asperger's or types of autism spectrum disorder. And the young boy their teenage boy, has written two books and I have actually got it out the library. And it is there and we were reading it together last night Sam and I. So that is quite good because it is written quite well for Sam. It is written in the eyes of a teenager. It doesn’t sort of say ‘you have got to do this’, ‘you have got to do that’. It just talks about brushing your hair and cleaning your teeth and we were laughing about it last night and reading it. So that is quite a good book for Sam. Yes. 
 
I did have a – I can’t remember what it was. I had a great big thick book that when Sam was diagnosed I bought and I can’t remember what it was called and it is all about autism. I can’t think what it is called though sorry. But that was useful. That was helpful. Because when you don’t know anything about your children and you find they are a bit different, it is quite frightening, very frightening actually. You feel sometimes that you are all alone.

Internet
Internet websites and online forums were recommended by many parents. One parent, for example, commented “I spent probably 22 hours out of 24 on the internet after Ben was diagnosed”. In particular, the National Autistic Society (NAS) was described as an excellent resource and starting point for finding out information; “They put you in contact with other people in your area and give you basic information”.

One mother said that “blogging is a good way of communicating and finding out because you can communicate with other people in the same position” (see ‘Support groups). A few parents cautioned that “a lot of websites were crap” and it was a case of “sifting through what is actually constructive and believable information”.

 

Bobbi uses the NAS website but now limits the amount of books she buys off their website each month.

Bobbi uses the NAS website but now limits the amount of books she buys off their website each month.

Age at interview: 38
Sex: Female
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Oh goodness me, National Autistic website without a doubt. Without a doubt. I get most of the publications through them. Anybody that is dealing with any issues of their kids that don’t eat like mine does, the Can’t Eat, Won’t Eat books opens… it doesn’t necessarily give you, okay here is the answer, but it makes you go whew okay I am not the only one. Thank you Lord! My son likes the… there is a couple of the kids ones. One about, I think it is about my brother has Asperger's. Let me tell you about Asperger's as well. And then there is the one about all cats have Asperger's. Oh my goodness Charlie is hysterical on that book he thinks that book’s, well because obviously the cats, thinks it is great and Jack has taken that book to heart as well. To the point where he has had a friend over and I found them reading it. I was like this is great, you know, I can’t get any better than this.
 
The, what else. I can’t think of any specific ones. I mean all the course ones that I am doing as well have been brilliant. But they are all, like I said all through the National Autistic Society. I have just gone to their book site and sort of gone, there, there, there, there. I go on it every month and I have circles of books that I want and every month I am like just getting them. I have to limit myself because I probably would have bought at least fifteen of them right off that without a doubt.
 

Jacqui recommends looking at www.researchautism.net where research and interventions are reviewed...

Jacqui recommends looking at www.researchautism.net where research and interventions are reviewed...

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Well actually the Research Autism charity that I am doing things with at the moment has just done a website which is very much a progressive thing. It has been updated and changed forever really. But this website is collating all of the data on virtually every intervention there is and it has got all of the countries most imminent professors and professionals. All are giving their time, great amounts of time to going through and reviewing all of the papers and all of the research and they have devised a ranking scale where if something comes out as having lots of evidence to be harmful. Then it will have a thumbs down sign or this kind of thing. And I think that… and it is very much a work in progress at the moment. You know it changes all the time. Somebody works on it full time. But I think something like that is invaluable because you can look at it… and people don’t have to take any notice of it. But you type in an intervention, type in a problem and come up with what interventions are likely to address the problem.
 
And you can get information in three levels; either basic, intermediary or advanced. And the advanced is talking about how many peer review papers and you know, how many random control trials have gone through and it has all been very much looked at from the professionals and the researchers that are reviewing all these papers. And in a way I suppose it is to be a trusted site and that is something that I think sometimes you can look at it. I have looked at it and think goodness it doesn’t look quite right or the wording is not quite right but the actual facts behind it. There is a lot of people that are very, very busy that are putting all of their time into doing something to collate all of these details in one site so that parents don’t have to be duped by very expensive treatments.
 
They can actually be harmful not just not beneficial, but can actually harm the kids and the adults so that is one thing that people should bookmark really. If I could remember the address of it; its Research Autism.net if you write it down but that is something that as it carries on I think it will be a real…. I mean it is very, very big. It has got to be to be properly used but it is something that will be invaluable. I wish it had been about before I had done everything that I have done.
 

Ciaran thinks you need hands on experience to understand the issues.

Ciaran thinks you need hands on experience to understand the issues.

Age at interview: 53
Sex: Male
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Well I mean you can do… there is vast amounts of information on the web now in terms of just doing Google searches on autism, autism research, fast progress, key words. The National Autistic Society website is quite good and it is just developing all the time. So if anyone has got internet access there are no barriers to information on autism. But the problem you will have as a budding professional or a student is, unless you live with the condition 24/7 you don’t really understand the issues. So you can do as much academic research as you like, but unless you have actually had hands on you don’t really understand the issues.

Quality and quantity of information
While some parents thought that getting as much information as possible was very important, a few parents described how they had stopped reading as much as they used to. One mother, for example, of a teenage son said that she no longer wanted to overload with information and she also cautioned that reading a lot could involve reading things that people might not want to know about.  

 

Caron thinks information on the internet focuses on high functioning rather than "middle of the...

Caron thinks information on the internet focuses on high functioning rather than "middle of the...

Age at interview: 24
Sex: Female
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I went on online and just typed in ‘autism’ and ticked the pages in the UK because I did not want to go through all the American sites [laughs]. The National Autistic Society came up. I read a lot on that and then I did a course, a Speak Out, I think it was called, course, where they told us how to kind of get in the mind of a child with autism, like if I put a woolly jumper on him and he says, “Oh I can’t wear this.” I will know he is not just being, you know, irritating there is a reason why he can’t wear it, like may be the wool you know, hurts his skin or he finds it itchy, or too constricting. Yes. So you know a lot of the web sites were good, but a lot were just full of crap really.
 
There seems to be a general consensus on the internet that it is it all seems to focus on Asperger's and high functioning autism a lot more than just the middle of the road autism, you know, so you get a lot of… ‘oh your child will be, you know, extremely gifted in one area’ blah, blah, blah. And it doesn’t ever tell you, you know, if your child is just normal autistic [laughs]. You know, like my child is. He is not extremely gifted in area, you know, he is just himself. So that, you know, they could do a lot more on that, you know, because when I read all about it and I was like oh well, may be he will be gifted in maths and then I tried to teach him his numbers and realised he is not [laughs].
 

The information often doesn’t deal with the things Jeanine really wants to know, like how to deal...

The information often doesn’t deal with the things Jeanine really wants to know, like how to deal...

Age at interview: 46
Sex: Female
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I have had phases of reading very intensely about autism. Reading quite a lot of books and things like that, but usually quite late at night when I am probably far too tired to take it in properly and the problem with reading, the books are good, but the problem with reading the books is that often they are talking about people, children or adults who don’t bear any relationship to the issues that your child has got, so you are kind of like reading this book and it is very, very interesting you know and you can get quite knowledgeable, but often it doesn’t deal with the things that you really want to know, which are how to deal with angry outbursts, which I only wish I had got that one sussed. How to predict the unpredictable because I am neurotypical and I do not think in the way that my son thinks and I can’t predict often how he is going to react to things.
 
And I would say probably the best things are finding your way round the system and anything you can do to find your way round the system is a good thing. I certainly would promote Northern Partners in Policy Making which is the most wonderful course for the support that you get from the coordinators, the support from the other parents that are on the course and the massive amount of information that you get from the course around all aspects of disability, inclusion, it is just the most wonderful opportunity if any one does get to go on that, please make sure you go on it if you hear of it and you can manage to get the time to go on it, because it really is absolutely first class and I cannot praise the organisers of that enough.

In addition to information, other sources of support for parents were support groups and these are discussed further in ‘Support groups.


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Last reviewed July 2017.

Last updated November 2012.

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