Thinking about labels

Some parents reflected on how they felt about their children being labelled as ‘autistic’. They described the dilemma of not really wanting their children to be labelled but knowing that without the label, they wouldnt be able to get support for their children. Some parents felt that having the label meant that teachers had to take notice of their children, particularly in mainstream schools (see ‘Difficulties with education; getting a statement). As one parent commented ‘There is no point in saying your child has just got emotional or behavioural difficulties because that doesn’t get you any sort of understanding or any support in the classroom’. Having the label also helped parents to get financial support such as Disability Living Allowance for those under 16 and Personal Independence Payment (PIP) for those older than 16 (see ‘Employment and finances‘).

Lynne sees autism as a signpost’ which indicates her son has a right to extra support.

Age at interview 60

Gender Male

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Lots of people are against having a diagnosis, aren’t they, or they are against having a label and I would certainly in my experience, just disagree with that entirely. There is a quotation from somebody [name], I think it is, [name], who said that autism is not a label it is a signpost and definitely it is true. You need some description to help you get that the help or the provision that you need and it is no use having something that is waffly, you know, like all inclusive special needs. You know that is useless really. You need something more specific. You know if you say this young person has autism then you know the problems associated with that.

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Some parents found it difficult to accept that their children were ‘disabled’. One mother had been very upset when the head teacher of her son’s school congratulated her on getting the diagnosis; ‘I remember feeling so upset because I couldn’t explain to her at that moment that he had this label which suddenly seemed terrible’.

Rachel was relieved to get the diagnosis but then found herself frightened about the long-term…

Age at interview 42

Gender Female

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Yes. I went into the school and it was such a relief. They were lovely. And they said, my nephew had just been diagnosed with severe dyspraxia, very severe dyspraxia and we worked out then that there was some emotional connection with severe dyspraxia and Tom had some signs of dyspraxia and I thought that is what we are going in for. That is great. And of course it wasn’t. And I went to the GP and his son is actually autistic. The GPs son is actually autistic and I said what the problem was and he went, That is Asperger’s. But of course it took quite a long time after that to formally get the diagnosis. We ended up going to [name of assessment centre], first the paediatrician and because it was our first child it seemed to take a long time to get a diagnosis for Tom because they had no history of him. And then we went to [name of assessment centre] because they wanted a full diagnosis to make sure they were absolutely right and that is when they gave their diagnosis.

It was such a relief to get that diagnosis. It was like OK that is fine. That is just what it is. Thank you. Just tell me what it is. It was a big relief to get that diagnosis and obviously Id done a load of reading, a whole load of research and we had also, my family had also paid for some people called the [name of therapists] who are based to come out and [name of therapist] the OT came out and it was just brilliant. She said, This is what you can do to desensitise him. This what you can do to help him with his toileting. Don’t protect him quite as much as you are, which I haven’t since then and it was just they were just brilliant, they were just brilliant.

So as soon as he got to school and the school started identifying the problem we were able to deal with it and just life just got better from that minute on really. I mean it was hard, it was frightening. It was just horrendous. It was so frightening to think that he was disabled and what was going to happen to him. It was terrifying, but you as time has gone on you kind of get used to it to an . Well you don’t get used to it. You think you are getting used to it, and then he stops eating and you know something always comes up. When they first told me there was a problem and I realised it was autism, it was like this big hole and you were going to fall into it. It was just horrendous. But then they are just your kids aren’t they and you kind of get used to the fact that it is not as bad as that. It is not as bad as that. They are just your children and it is going to get better and it did.

When Matthew was diagnosed it was just really sad because we thought we had one that didn’t have Asperger’s and when we found he did we were just really sad. But you know, then you think just get on with it. But not so much now, because again you just get used to it and it is just day to day stuff isn’t it and you kind of get used to it. But it was very, very sad.

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Having the label also made life easier in other ways. One parent, for example, described how much easier she found explaining her son’s behaviour to other people once she had the diagnosis because people understood the term autism rather than labels like ‘developmentally delayed’.

Some parents would have liked more information and support at the point of diagnosis instead of just being given the label and feeling they were being left ‘to get on with it’ (see ‘Information‘). One parent found out about the diagnosis from the education authority who read it off her daughter’s statement. This was a particularly difficult way to hear the news.

Communication and understanding

People on the autism spectrum usually have social and communication difficulties. Many find it hard to read other people's body language and facial expressions and...