Getting a diagnosis of autistic spectrum disorder (ASD): Assessment and being told

The form of assessment varied considerably. In some cases, GP’s referred children to a paediatrician or CDC (child development centre) where they would be diagnosed during one appointment.

Janes son was diagnosed within minutes by the paediatrician.

Age at interview 47

Gender Female

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The diagnostic period came when I went to the GP and I described the behaviours and I said, “I think really we need a consultation.” Without diagnosing, because I had no idea to be quite honest. I knew he wasn’t autistic in the classical sense, but I never imagined Asperger’s because he wasn’t behaving in the way that, at that age, with a stereotypical Asperger’s. So we were referred onto the paediatrician and the paediatrician made a diagnosis within minutes I would say and she also labelled him with ‘developmental delay which I found very hard to come to terms with because at the time I had an extraordinarily bright young boy, who was having trouble socially and I couldn’t see where – what she meant by developmental delay and I think now she should have said, been more explicit because for me development delay is something cognitive. He was only seven or eight years old, coming up for nine. I can’t remember the exact time, but with adults socially he was very adept but actually he wasn’t. The adults were very adept at working around him and compensating for him and it was only when the adult’s world was absent and the child was supposed to integrate themselves, did the problems become apparent.

So I would think, looking back, he was very, very intelligent, very articulate, very advanced but when it ever came to his own feelings, he was very, very immature and he couldn’t see on behalf of others and even now, he finds that very, very, very hard. So that is how the diagnosis came about.

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Questions were commonly asked about the family history, the children were observed and information was collected from nursery or school. Often several different health professionals were involved and structured assessments such as the PDDAG (Pervasive Development Diagnostic Assessment Group), ADIR (Autism Diagnostic Interview Revised), and ADOS (Autistic Diagnostic Observation Scale) were used.

Nuala found the three hour interview illuminating – it pointed to things that were different…

Age at interview 43

Gender Female

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The main thing was a big interview which my husband and I had to go to, and it was about three hours I think. Very detailed. I mean we had to, it was quite hard because we had to think back to when he was three or four and we had to study, we had to think about tiny details of his interaction and spend a long time answering questions about how he spoke to people or how he looked at things or what he didn’t look at or how he got attention, whether he pointed at things, that kind of thing, very, very detailed. And of course, you know, we were four or five years after that.

We had to think about his period of time shortly before he went to school. And they warned us about, that it would focus on that period of time. So we spent quite a lot of time before the interview, looking at any records, letters, emails, videos we had taken. We had videos. I had some notes that his nursery had made and just reading through those we were reminding each other. “Do you remember when he did this?” [laughs] Just trying to remember and capture what it was like when he was that age, and then, we didn’t know what the questions would be. So when we had the questions, I think there were quite a lot of them. “I don’t know. Do you remember him doing that?” [laughs] “Did he do that?” “Oh I can’t remember.” So lots of discussion between us but it was quite, I think the diagnosis process was quite interesting actually, the assessment because actually it did bring to my mind the things that actually were different about him, and I suppose there had been in the back of my mind, a feeling that there was something subtly different about him at that age, and in fact in some ways the interview really brought that to my attention.

It made me think about what it was that was different. And the fact that he didn’t point at things for example, was something that I had never specifically picked out. But then actually it was something that he hadn’t done, he hadn’t referred to things, like drawing attention with a finger. So it was, it was kind of a strange experience, but it was actually quite illuminating and it helped me actually come to terms with the idea that the assessment was quite a good guide, because it made it, it did relate to our own experience of living through, of bringing him up through that period so it was quite useful.

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Other parents had a series of appointments with various health professionals including speech therapists, educational psychologists, community paediatricians; a few parents attended residential assessment centres. The residential centres offered a very comprehensive process of assessment but those parents who followed this route talked about how difficult it was to take such a lengthy period of time away from their other children. Those parents who already had a child diagnosed with Autistic Spectrum Disorder (ASD) found the diagnosis for the second child a quick process which did not involve the same procedures as with the first child.

Sandy went straight to the paediatrician when she suspected her second son may be on the autism…

Age at interview 38

Gender Female

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I suppose when he was at his mums and tots group as well, he didn’t particularly used to join in with things as such but he was always happy to be in the middle of a group, whereas Joseph used to go and sort find things to do on his own and then like I say, they used to sort of, if there was something on the telly, Joseph used to stand in front of the telly and he would always jump and flap up and down and Joseph’s flap has always been a hands out like this, whereas Adam’s has always been a totally different thing, but of course we always thought that Adam was just copying Joseph and it always seemed to be if Joseph did it then Adam did it as well, but now we know that Adam was doing it in his own right, but of course we just thought that he was copying.

And then I suppose when it got to about, it must have been about eighteen months old and I noticed that Adam’s little friend Eddie the Shredder had started talking and things and I thought Adam’s not… But he was still sort of babbling away and sort of making funny little noises. And then I think really the crux of it for me was when he suddenly picked the pen up and you know there was a pen on the table in the living room and he picked it up and he did this and watched it go past his eye. Now Joseph used to do that a lot, but he hadn’t done it since Adam was about six months old.

And I said to my husband, I said, “I am sure Adam is like autistic as well”. And he said, “No he is not. He is just copying Joseph.” I said, “He is, he is. He has just done this thing that Joseph hasn’t done for ages”. And he was absolutely convinced that Adam must have remembered some distant memory. But I said, “No, he has got to be”. And I actually phoned my paediatrician directly. I didn’t sort of go through the doctor, the GP or the health visitor because I thought well, if he is, I would rather get a diagnosis quite quickly and he was brilliant. He arranged really quickly for us, within a couple of weeks actually to go and see him and sort of almost instantly he said, “Yes, he is on the autistic spectrum as well” which was an absolutely massive blow, because I think with Joseph we had always suspected that there was something different about him, but with Adam it was just, “Oh god, why us, why have we got two like it?” and I think for me the first six months after the diagnosis were really, really hard because you are coming to the terms with the fact as well, that I have only ever had two children and they are both autistic.

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Katrina attended a three week assessment with her son.

Age at interview 35

Gender Female

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What did they actually do at the centre? Was it done on one day?

No, no, he has actually been to this unit a couple of times and we stayed for three weeks so it was a very, very comprehensive assessment. And during our time there Callum was observed 24/7 and he was filmed and he had therapy sessions with a one-way mirror or two-way mirror where people could observe him and observe body language and we came out with a sort of telephone book size report with all the different observations and he had specific tests that he had to undergo but yes the whole time was made up of me undergoing training and interacting with him and him interacting with others and him on his own in one to one sessions. And also they had reports from our local paediatrician so yes he had a very, very thorough assessments that all went together to form the final diagnosis.

I mean how did you find those three weeks?

I think really horrible in one way, really horrible you know just being away from home I didn’t like and being away from my daughter and knowing that she needed me too. But I knew that it was like the last stop. I knew that at the end of that they would either give me a diagnosis or they would send me away and say it is just a development thing, or it is emotional behavioural problems and I was a bad parent that is kind of like what I expected. I dreaded that being said. I dreaded it all being put back on me. I knew that wasn’t right because I am just so attentive with both my children and my daughter is so the other end of the scale, you know she excels at everything and it is a bit of a natural but I like to think I have played a part too and I just feel why hasn’t it worked like that for Callum? So I knew it wasn’t me but you do kind of like have to go through everything before it is eliminated that it is not a parent, you know it is not a parenting problem, it is a condition. So yes, that gave me a sense of relief as well.

Did you feel you learnt a lot doing this at the time?

Oh I don’t know. It is one of those horrible, you know big brother type situations I don’t think anybody likes to be being watched all the time, you know are you doing it properly, so I didn’t like that aspect of it. I mean I guess if I look back I will have taken something away from the experience, but yes the best thing for me was getting the diagnosis. It was worth it for that, but I can’t say I would ever want to go through that again. It reassured me that I was doing everything right really and it is not me, you know, it is the condition that Callum has got causing all these problems.

How did you get referred to [name of unit]?

Through our paediatrician, yes. Yes. We had kind of like exhausted everything locally I think and they were at a bit of a dead end and they actually referred us out of county to this clinic that they use. They are quite specialised in autism and autistic spectrum disorders so they felt it was the best place for us. I think it is really difficult when you have got a child who presents behaviours in one area, say at home, and presents very differently in school, which is very typical of Asperger’s children, because they are intelligent enough to be able to cope in school. They know it is not acceptable to throw things around.

Admittedly some children do that but Callum was one of the ones who bottled it in all day at school and as soon as he came out he was so aggressive you know it was so sad because you knew that there was a reason for his behaviour. He wasn’t just being a horrible little boy. He was really upset and having Asperger’s means that he can’t communicate,

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Getting the diagnosis

Some children were given a series of diagnoses before being diagnosed with autism. These included dyspraxia, dyslexia, PDDNOS (pervasive developmental disorder not otherwise specified) and pragmatic semantic disorder. As one parent commented,

‘Matt was diagnosed eventually with PDDNOS which is basically on the autistic spectrum with a few boxes not checked. I think he probably made eye contact or something like that at one of the assessments.’

Jacqui talks about how different health professionals use different labels for the same disorder.

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What happened was he was seen by the occupational therapist and I think that was probably because dyspraxia – by the time it was Luke it was dyspraxia and it was obviously more politically correct than clumsy child syndrome or minimal brain dysfunction [laughs] – but the occupational therapist assessed him for that and I think that was quite a trendy thing to be into at the time because as things become more current, as autism, Asperger’s syndrome is now, the more people are more aware then obviously it very much depends on your area. It very much depends on your professionals.

So you could get the same child that has been assessed by a speech therapist that got a label of semantic pragmatic language disorder, that is assessed by an occupational therapist that would be given a diagnosis of dyspraxia, that by an educational psychologist would be given something completely different and the end result is that it is still the same child and it is still somewhere on the autism spectrum whether it is someone that is higher functioning, higher functioning is probably an awful way to say it, because in reality there is no such thing as mild autism. And it is something that people often misunderstand, that Asperger’s syndrome is only a bit of autism or high functioning autism is milder but in reality a lot of the time the problems are more severe because Luke spends oh every waking minute trying to understand every one else, trying to run what I call an ‘emulator and fit in, in wherever he is meant to fit in.

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The clinical psychologist gave the diagnosis gently but did not hold back which Helen thought…

Age at interview 46

Gender Female

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And how did the person give you the diagnosis?

She was excellent. I mean if I could describe her, she is professional from the top of her head to the tips of her toes and we had obviously got to know her and we formed a relationship with her from the outset. She is just that sort of person. She has got such good interpersonal skills and she puts you at ease and I kept very detailed behaviour sheets for her and she saw Joseph a few times and she didn’t – I think it was the way she approached it – she knew she had got to break it to us gently but she didn’t hold back and I think that was the best way to do it. And she offered a couple of leaflets to start with. She said I don’t want to bombard you because you need to go away and take this in.

So I can only speak from personal experience that we were very fortunate in having [psychologist] sit down with us and say this is what I think and this is my diagnosis and she gave reasons why, which I can’t remember because we were taking it in then and all I could think at that time, was well he is autistic and I couldn’t think about anything else. So we did come away from… although she did it very well. We came away feeling devastated and lots of tears. And lots of why us? So it didn’t probably sink in. I don’t think it really sunk in until about two weeks later.

And did you go back to see her?

Yes. Yes. Yes. We went to see her, I think we went to see her about two or three weeks later. She gave us time to sort of go away, think about it, with the option of telephoning her if we needed to talk and we have always had that from her. So … but we didn’t. We waited until the next appointment and then we were able to sort of talk, you know where do we go from here, what do we do in terms of school and she did write to school and say, “This is my diagnosis.” And she did actually ring them as well, which I thought was excellent and then she attended a couple of meetings with school as well to say these are the implications, these are the things that you need to be thinking about.

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Interview 46: Jeanine describes how the diagnosis was given with her son present and she doesn t…

Age at interview 46

Gender Female

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This all started in the September and it got to the April time and got the diagnosis from the hospital. I was on my own with Robert when I got the diagnosis. As I say I kind of thought these were behavioural issues, and although I did have a suspicion there some something else there but I really didn’t know what it was. And the consultant told me in front of Robert which I didn’t think was very good, with the educational psychologist and somebody else. I can’t remember their names … and they told me Robert had autism spectrum disorder. They went through the tick box thing where they tick the criteria and I was just absolutely devastated.

I found the whole thing really hard to deal with. I was really upset. I didn’t think it was right I was told when I was on my own. They knew what diagnosis they were going to give, they may be should have rang me up beforehand and said something to me, ask me if I was bringing somebody with me. I was quite shaken up and how I managed to drive home, I just don’t know.

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Rosie describes receiving the diagnosis which was very upsetting.

Age at interview 53

Gender Female

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He was referred to [hospital]. He became under the care of [doctor], that is the consultant at the hospital and he did lots of tests on Sam to rule out anything, to see if there was anything else, anything physical was wrong with him and we took Sam to [hospital] for the day to see a consultant there and he had loads of tests and it was quite stressful for him. We weren’t allowed to stay with him. We had to go and sit downstairs for hours and at the end of the day we had a meeting with the consultant and that is when they told us what was wrong with Sam.

They said that he had severe development … I can’t say it now because I am so nervous. Well he had autistic spectrum disorder and severe developmental dyspraxia, which would mean , which he said would mean for Sam that Sam probably wouldn’t be able to do most things that a normal child do. He wouldn’t be able to ride a bike, he wouldn’t be able to run because he had lots of physical problems as well. He wouldn’t be able to write or read or – oh Im getting upset now because it was upsetting – he would never be able to swim and he said he would be a very difficult little boy to look after but when he reached teenagers, when he became a teenager it would be even worse for him and that he would probably have to go on antidepressants and it would be very difficult for us to look after him.

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Some parents clearly felt that their children could have been diagnosed much earlier and this was frustrating in terms of getting the right support. Some parents felt that they were being blamed for their children’s developmental delay or unusual behaviour (see ‘Feelings about diagnosis’).

One parent thought that it was difficult to diagnose autism because often the children behaved well during appointments and so professionals could not get a clear sense of the children. Some children had atypical behaviour which also made diagnosis problematic although parents thought that they would rather be kept better informed during the process. One boy was diagnosed with atypical autism because he had delayed speech but now those involved with his care accepted that he had Asperger syndrome.

Bobbi found the process of getting a diagnosis incredibly frustrating.

Age at interview 38

Gender Female

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Okay. Charlie was, Charlie was born in 2001 and I guess it was probably when he was two years old that I realised that there was something unusual because of his activity. He was what we considered at one point hyperactive and for the longest time we thought he had ADHD. His … he seemed to sort of wind himself up, he had problems going to sleep, he had problems… and we realised after the fact, any time we went into a new area, he seemed to get extremely hyper and extremely active and of course obviously we would remove him from the place that we were at and we sort of, I guess at that point probably labelled him ADHD ourselves, and I started looking into the internet and things.

But things didn’t sort of match up as such, so I went to my GP and I said to her that I wanted to get some sort of advice further and she put us onto, I think it was child social services initially, with a social care worker in [hospital] and we started seeing him initially on our own and again everybody kept… we kept sort of, we would focus more on the hyperactivity aspect and it probably wasn’t until we went deeper into the different things that were going on with Charlie, like he would smear, he would get a hold of his nappy and just smear it all over the place, that didn’t sort of coincide with things that I was reading about ADHD and I think it was me that first brought it up in the sessions with the social worker, who by that point had already met my eldest son Jack and Charlie together, and then Charlie on his own as well as with us and it probably was me that brought up Asperger’s first.

But it was through a lot of work, but I guess it was, it was me that brought it up and it was me that sort of through wanting the diagnosis and pushing a diagnosis we finally got referred to – I think it is [assessment centre] another group where they take a lot of different doctors of different areas and assess the child in one day and that was the best experience I ever had because that was the one time that everybody was confirming what I already thought. They decided at that time that they couldn’t go with the Asperger’s diagnosis, though unofficially that is pretty much what Charlie is, but Charlie had delay in speech and I don’t think it was a dramatic delay. There was a bit of contention there, because I think I was speaking more for Charlie. I think I was interpreting more for Charlie, so I don’t think Charlie chose to speak. He wanted to and he would speak with me but not with other people and I think that is where they thought there was a problem so therefore he got diagnosed autistic spectrum disorder.

And from then on everything has been a lot easier. But to sort of get that diagnosis, to pinpoint those people down to say come on let’s get on with this, what is going on was very, very difficult at first and I found it incredibly frustrating.

I also found the whole process of going through social services very, very frustrating as well because [sigh] they never really looked at us and what we were doing wrong, as such, or blamed us, or anything like that but there was a lot of and I guess because children are… you know, they change as they grow, and the problems aren’t always apparent right away. But it just seemed like a very tedious procedure, do you know what I mean? And a very … because I just wanted to know, you know, and I wanted to make sure that when he got into his reception year, and specifically by first year, that if there was help that was needed for that child that he got it. And because we got the diagnosis eventually and we got it that one day, we were then therefore able to go to the council and say look, you know, and go to the school and say look, we think he needs statementing.

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Parents told very different stories about how they got a diagnosis for their children and they also described different feelings about receiving the news and this is discussed in ‘Feelings about diagnosis‘.