Getting a diagnosis of autistic spectrum disorder (ASD): Referrals

There are diagnostic differences between conditions on the autism spectrum; people may receive a diagnosis of autism or Autistic Spectrum Disorder (ASD), high-functioning autism (HFA) or atypical autism or Asperger syndrome. Alternatively, they may be given a diagnosis of pervasive developmental disorder – not otherwise specified (PDD-NOS) or semantic pragmatic disorder* Children and adults on the spectrum often have similar difficulties and can have similar support needs.

The parents we talked with had different experiences of getting a diagnosis of autism or Asperger syndrome for their children depending on where they lived and the severity of their children’s autism. Some parents raised concerns with their GP about their children when they were very young, were referred to a paediatrician, psychologist or child development centre (CDC) and received the diagnosis within six months. Other parents described raising their concerns with their health visitor or GP only to be told that everything was fine and their children would ‘catch up’. For these parents, the process of diagnosis took years and some children were not diagnosed until adulthood.

Nicki and Mark experienced a straightforward process of getting a diagnosis after nursery staff…

Age at interview 32

Gender Male

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Nicki’ Tyler was born after an extended labour of three days and was born with a normal delivery but needed to be revived after he was born. As he developed he didn’t really have any health problems. He had a number of cysts on his eyes which are just one of those things we were told. When he got to the age of about a year he was still developing normally, crawling, walking, etc. and then his speech didn’t really come on very well at all. We had some concerns about it, he wasn’t really babbling and the normal baby talk that you get and I spoke to the health visitor and continued to do so.

They didn’t think there was anything too much to worry about and the health visitor, as he got older the health visitor arranged some speech therapy. They didn’t think he needed speech therapy because the few words he did say by the time he was about 20 months were very clear. There were only four or five of them. Eye contact wasn’t good and understanding didn’t seem to be particularly good. He had a series of hearing tests which all proved OK. By the time he went to the play school when he was three, on his third birthday we took him into play school and said, “We do have some concerns about Tyler.” He was clean and dry which was the requirement. But they said, “Oh don’t worry, it will be fine.” A week later I went back in and said, “What do you think?” And they said, “Oh we think he is displaying autistic tendencies.” It had been lurking in the background of my mind for a while. Neither of us were aware of any autism in our families were we?
Mark’ No.
Nicki’ And so he was then fast tracked through the PDDAG [Pervasive Development diagnostic Assessment Group]. Eventually he went through a number of tests with Griffith scores which were low. Initially they diagnosed just learning difficulties and said it probably wasn’t autism. But then he went through as I say a PDDAG assessment and was diagnosed when he was about three and ten months, may be just four. He was very young wasn’t he?

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Alison and Tony had gone to the doctor’s on several occasions but were told not to worry; their…

Age at interview 36

Gender Male

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Did you discuss… I mean did you talk to each other sort of saying, I am a bit concerned.

Alison’ All the time.
Tony’ Oh yes. We had nowhere to go.
Alison’ There was quite a few things like you know we said, “Could he be autistic.” Well like I say we used to think well autism was the kid in the corner that didn’t speak and didn’t look at anybody. So we kind of put that to one side because we thought well he can’t be because like I say we didn’t realise there was this massive spectrum of it. And always has he just got learning difficulties and has he just got speech difficulties. We used to talk a lot about it didn’t we? But we didn’t really know where to go. I mean, like I said, we had been to the doctors on several occasions, because I used to say to them. He does this and he does that, but they just didn’t seem to be too bothered about why he was doing it. They were just a bit more concerned with ‘well don’t worry. He could be all right.
Tony’ Yes. They didn’t bother looking any deeper and as I say it wasn’t till he got to nursery when were referred back to [hospital].
Alison’ When they mentioned about the hospital.
Tony’ Yes. That’s when we got the diagnosis.

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Carolann visited over twenty professionals before her daughter was diagnosed with Asperger syndrome.

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And I took her to the doctors and the usual check ups and no, nothing was wrong. She is just a normal baby. And then when she got to pre school age, I discovered that people weren’t making friends with her, she wasn’t mixing with others. She was on her own, dressing up like a princess with big high heels and wandering around the play group just being totally isolated in her own world and I tried to bring friends round and she would play with them for a little bit, not particularly interact, but I knew nothing about autism and I kept reading Penelope Leach books and Dr Spock and I was thinking, this isn’t right, something is not right. Nobody would say anything. She is perfectly all right there is nothing wrong with her.

And in the end I took her to somewhere in [town] where they said I should have parenting classes, because obviously it was me. I was a bad mother. And I had to leave her at this particular, I suppose it was kind of a playgroup and I remember coming back early and seeing her sitting on her own in the corner, weeping and weeping. And I thought I am not going to do that to her, you know, nobody was taking any notice of her, nobody was loving her, or caring for her and I thought I have had enough, that is it. So I took her out of that place immediately and we never went back again.

She went to a third secondary school – where ironically she actually was showing all the signs of what I later discovered was Asperger syndrome – but this time it was so bad and she was so terrified of going to school, by then when she approached the school gates and I was driving her, because she couldn’t go by public transport because she would get things thrown at her and she would get and stuff, she used to crouch on the floor, underneath by her seat on the floor and she begged me not to take her to school. She said, “No I can’t do it.” So in the end I didn’t. I told the head and the pastoral head of year and that she was absolutely terrified and she was actually being physically sick and the doctor put on her haloperidol which was not the right thing to do, but at least it calmed her down, so she looked ohh like a zombie for most of the time but at least it did calm, calm her down to an extent but it was the wrong thing for her.

And then I just started putting bits and pieces together. You know I phoned up Young Minds at this point – she was 14 at this point – and I described her problem with what I now know as social interaction deficits. She had difficulty making friends with people and she wasn’t popular and instantly this person from Mind said, “It sounds like she has got Asperger syndrome.” And I said, “What is that?” And then they described it to me and said, “Get onto the National Autistic Society.” So I spoke to the NAS and they described it absolutely what she had and I thought now I know, she is nearly 15, it has taken all these years going to, I think I counted up at one time it was 23 separate so called experts or professionals. Not one of them, not one of them had mentioned Asperger syndrome.

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Unexpected referrals

A few parents had no concerns about their children and were surprised when a nursery or school teacher, SENCO (Special Educational Needs Co-ordinator), family friend, or health visitor suggested that they seek a referral for their child. One mother was seeing a counsellor for depression and the counsellor suggested that her son could have Asperger syndrome. Another mother moved house and her children were immediately identified as having difficulties in their new school. Some of the parents with more than one child on the spectrum described how they had been so focused on their first child they did not notice that their second children were displaying characteristics of autism.

These parents had not thought there was anything out of the ordinary about their children’s development and while the children were slightly delayed, they thought they would just grow out of it and walk or talk in their own time. As one mother said, ‘I didn’t compare Joseph to anyone really; to me he was just Joseph’ and she was surprised when a friend suggested he might have autism. Another mother had not asked the GP for advice about her son because it seemed silly to go and say that she was worried because her son was so naughty.

Nick and Vikki thought their son was gifted until they went to his first parent’s evening at school.

Age at interview 40

Gender Male

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Nick’ Well I think initially we thought we had a gifted child because he started pre school and I can remember, there I was. I had a son at nursery, and my youngest was starting a pre school at two and a half and they were lining up the plastic animals and they were saying moo cows, baa sheep, whatever and he looked, “That is a hippopotamus.” And I was thinking, oh yes, wonderfully gifted child and we thought nothing more of it. So he went through the pre school and then got accepted in the same nursery as my older son and for a year we thought well nothing untoward has been said. He is obviously working hard and he wasn’t forthcoming what he had done, but the nursery staff didn’t tell us what he hadn’t done. And we had a parents’ evening.
Nick’ This was right at the end of term.
Vikki’ So a whole year had gone of nursery education and they sat us down, and they went, “Well actually Peter has made no progress since he has joined the nursery class. We think something is wrong with him. Oh and by the way your minutes is up next please.” So we thought ‘that is oh that’s food for thought and in my professional capacity I actually teach in a mainstream secondary school and have a speech and language therapist in. And I sat her down, because the girl that she was meant to be talking to, obviously didn’t fail to communicate she was on holiday this time so I took advantage of this free block of time that she had and sat her down and said, “Well this is what he is like. This is what…you know, how he behaves.” And she said, “Well what I will do is I will write a referral for you,” there and then. And I think within how long, a course of six months, he had been put through the system in [town]. He had been seen by the community psychologists and was given a diagnosis.
Nick’ It was very, very quick.

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Dot thought her son had hurt himself when a student teacher suggested she take him to the doctor.

Age at interview 48

Gender Female

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It was it was a teacher in school that was a student teacher. She said to me, “I think you should maybe take him to the doctors.” And I thought he had hurt himself or something in the playground and then I said, “What has he done?” She said, “He is having difficulty concentrating.” I said, “Well he always has difficulty concentrating”, unless it is Batman or whatever his little obsession was at the time and she said, “Well you know, it is not up to me to say and I am leaving”- because it was by the end of term and she was only a student – but she said, “Have you ever thought he might be autistic?” And I was like… I didn’t know what to say to her.

And I said, “Well what do you mean. What do you mean?” And she said, “Well I think you should go to the doctor and check it out. Tell them what sort of problems he has had.” And that was it. I tried to get her to tell me more but she felt like she had already said too much if you like. So I took him to the doctor’s as early as possible that same week.

Did you say to the doctor that you thought it might be autism?

Well I said it had been mentioned and I said, “If it is anything like that, how can we get it diagnosed?” And he said, “Well first of all let me have a look at him.” And he had this book and it was a very simple Ladybird book with pictures in of an apple and things like that. And then he said to Joe, “What is that?” And Joe said, “An apple.” And he was basically testing his intelligence level and Joe was fine. He was calm, he was… you know… but Joe likes uniforms. He likes … the doctor had a stethoscope on. He liked that. So it was like that. And he said, “He is cooperating.” And then the doctor said, he took the book away and then tried to have a conversation with him without any sort of focus or prompt and Joe just went very bizarre you know he was like; “What is that pen for? Does that pen light up?”… blah, blah, blah. And he was just… whatever the doctor asked him he was blacking it out. So the doctor said, “Yes, maybe you do need to go and I will recommend that he goes to the CDC” – which is the Child Development Centre – “And he will have a full range of tests. They will test, you know, his hearing again, if he has got any eyesight problems but basically they will be looking for an explanation for why his delays are slow.”

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A psychologist sitting in on a family counselling session suggested that Nicole may have Asperger…

Age at interview 39

Gender Female

So we were referred for families counselling and a clinical psychologist actually sat in on that meeting and then asked us to go back and just see her and she identified from that initial meeting that potentially Nicole could have Asperger’s syndrome and it took another about three months of meetings, not weekly or anything you know once every six weeks, filling out forms, answering questionnaires me going on my own. Nicole being spoken to on her own before they then actually gave me an initial diagnosis of Asperger’s syndrome.

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Asking for help

Parents either discussed their worries with their GP or health visitors or were referred to specialists through nursery or school. One mother described how she knew that there was something different about her son from when he was born but only went to the GP when he began to experience ‘social issues’ at school when he was about seven years old. Another mother read a leaflet in Tesco when her daughter was 28 and thought it described her daughter exactly.

The length of time between raising initial concerns (either by the parents or by relevant professionals) and getting the diagnosis also varied considerably among the parents. Some parents were repeatedly told that there was nothing wrong with their children and they were being neurotic parents. This was frustrating and upsetting and a few parents did not know what to do or where to go.

Caron repeatedly took her son to see health professionals but she wasn t listened to until her…

Age at interview 24

Gender Female

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Well the first time I took him was when he was seven months old. He just stopped eating. He had been sick and he had started to vomit when he was eating some food and then after that he just wouldn’t eat anything else again. It was like he remembered or something and he refused to eat. And I took him to the doctor’s and I was like you know, “He doesn’t have a smile. He doesn’t put his arms out to me. You know he just refuses to take food. He ignores other people completely.” And the doctor said, “Oh no, there is nothing wrong with him. Some children are just like that.”

And I kept taking him and taking him and because he had had a problem with his arm when was born, so he had to see a physiotherapist, so every six months he had to go to the hospital anyway and this was like the [hospital] and he saw the doctor there and he was about two then and I remember the waiting room was full of children and all the other children was playing together and he was off in a corner by himself as always and when the doctor took us in he said to us, he goes, “He is very much in his own world isn’t he?” And I was like, “Yes, that is how he is.” And he was like, “Oh I will make a note of that.” And I thought ooh may be somebody has noticed. But then still nothing. Still nothing happened until [younger brother] came along and that was three years later.

So what happened then?

He became almost uncontrollable. I suppose it was having somebody else in the house, you know, it throws your routine out completely. And we were talking back… we moved to [hospital] then and he saw the paediatrician there, still about his arm, but that was all fine and then she asked us if we had any other concerns and I told her. I said, “I have been taking him to the hospital all the time, telling them my problems. They just make out that it is me. There is nothing wrong with him.” And she said, she listened to everything, she asked me loads of questions like you know does he play with other children? Can he ask for things? Can he point to things? Can he talk? Because at this point he couldn’t even talk and he almost three and I told her. I answered all her questions and then she said to me, “To be honest with you it sounds like he has got autism.” And she goes, “We will put him down on the list to be assessed.” This was in September, she goes, “He will probably be assessed around the January time.” And she said, you know to go home [laughs]. So we just went home and then in January he was assessed, and oh he was autistic.

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A reception teacher helped Helen and Jim to get the diagnosis but they should not have needed to…

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Helen’ But still no diagnosis and by this time I had got to use the computer and I was being treated for depression because it was such hard work and my counsellor actually said to me, “Talk to me about your son.” So I sort of explained Josh as I see him, or saw him at the time to her. And she said, “To me he sounds like he has Asperger’s. I will write it down, go and have a look in the library.” And I kind of went from there basically and in the end I made up the case file.
Jason’ Yes. The school helped. The nurse… his reception teacher did a lot to help get the…
Helen’ Yes to get the diagnosis…
Jason’ To get the diagnosis through. Yes, she was fantastic, but only because she has got an autistic brother and he is severely autistic, and shes his guardian because her mother can’t cope. She could see how we were struggling and she could see Josh had got everything, the criteria fitted and she could see that we were losing and she put her job on the line for us and pushed and pushed and in the end she went with us and backed us. We went to the child psychologist with her and the child psychologist backed down and said, “Okay fine, you have got your diagnosis, he has got Asperger’s.” But we should never have had to have done that. It was just nobody believed us. Nobody, you know, as a parent, you know, whether your child is OK or not. When this one came along he was totally different from the outset. You know, he would always make eye contact, he wanted to be held. This one, hes attached by apron strings. When Josh was a baby, he was his own baby happy to lay in his cot for hours, never, no human contact, no, he never wanted it. But because we were new parents we didn’t know, we never knew there was anything wrong.
Jason’ We just presumed that he was a quiet baby.

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A few parents described mistakes made during the process of diagnosis, such as reports not being written or sent, which further delayed getting the diagnosis. Some of these parents read reports written years before diagnosis suggesting that the children were on the autism spectrum. Many parents with worries about their children’s development began to do their own research into possible answers (see ‘Information‘) and it became clear to some of them that their children were on the autism spectrum before they received the diagnosis.

Paula describes a part of the process of getting her sons diagnosed which went on for several years.

Age at interview 40

Gender Female

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David was getting into trouble; he was getting detentions, he was absconding from school, saying to the teacher very convincingly that mummy was collecting him early for an appointment and would walk out. And the school would let him walk out and I was eight miles away in the Community Mental Health Team. I mean I was “aghhh”, when I found out. I obviously you know annihilated David, annihilated the school and everything else and it was “David hasn’t got any problems, David is fine. He is just silly. And I kept thinking. “Whoa, I don’t think so. I think there is definitely something here.”

So we went back to see [doctor]. At the same time we were going up to [hospital] to get that chromosome diversion thing done so that came up and so we knew then from seeing Dr… some guy in [hospital] about genetics, that there was definitely behaviour difficulties that were linked to Asperger’s , autism and mental health problems on my side of the family and he had that. But I kept thinking there is definitely something else going on and it was almost as if it was a bit… it looked I suppose as if I had Munchausen’s or something, because I knew there was something. You know we couldn’t have this kid with an IQ of 117 failing. Because 25 years ago this world could take people like David, because I am like David, you know, we had a place in society. These days you are either a Chav or you are an academic. And there is kind of no middle ground for these sort of kids and which way are they going to go? They are a bit vulnerable so he needed the help.

Saw the Community Paediatrician and she said, “We will do the Connors rating scale.” So we did the Connors rating scale and I marked everything as if, as it was, that David really had quite a bit of ADD and ADHD. The school who were under reporting everything, because if they highlighted a concern they would have to act on it and put help in said, “Oh not a problem. He is wonderful.” So we ended up getting a … So we went back and she said, “Well no, because they are saying he is not a problem. Bring the father along.” So the next appointment we brought the father along who sat there, while David was stimming, he was doing all this, “wa wa wa wa wa”, and he was on a whirly chair, whirling around in the office and my ex husband said, “There is nothing wrong with him. It is normal behaviour. It is just because he is bored. I know because I am a teacher. Nothing wrong with him.” So that was another six months without a bloody diagnosis. And I thought I can’t be doing with this.

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Tracy describes her experience of getting her daughter’s diagnosis.

Age at interview 40

Gender Female

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And you said somebody mentioned autism. Can you remember who that was?

I think it was my GP.

Your GP?

Hm.

And what did you do with that when you heard that?

I said to him, because we had seen like a speech therapist because she wasn’t talking and we had seen a behavioural specialist, and I said to him “Could we actually see a doctor that would be able to confirm that ?” And he done a letter and we went to [hospital], sorry you will have to edit that out. We went to a children’s hospital in London’to see if they could pinpoint more about the possibility of it being this and basically they did lots of genetic tests, blood tests, and went right back through our history – because I am adopted – so it was hard. That was another barrier. It was hard for me say, well I had to keep saying, “I don’t know. I don’t know”. But yes at the end of the day it was from the children’s hospital in London after going backwards and forwards there for six or seven months they said, yes we think definitely autism.

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A few parents paid for a private assessment because they were frustrated by the lack of progress in identifying the reasons for their children’s developmental delay. Other parents asked organisations such as the National Autistic Society and Young Minds for advice on how to go about getting a diagnosis. They were advised to contact local psychologists who specialised in autism spectrum conditions.

* Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS) is a sub-threshold condition in which some – but not all – features of autism or another explicitly identified Pervasive Developmental Disorder are identified. Semantic Pragmatic Disorder is a linguistic term used to describe a set of abnormal language and communication developmental features.