The characteristics of autism vary from person to person but are generally divided into three main groups; social communication difficulties, social interactions, and difficulties with social imagination. It is often difficult to identify autism in very young children but many parents we talked to described noticing unusual or concerning signs, such as a delay in talking, during their children’s early development. Other parents did not notice anything particularly unusual at the time but once their children were diagnosed with Autistic Spectrum Disorder (ASD), they looked back and identified particular behaviours or characteristics that they thought were an indication of autism.
Jane, a Senior Lecturer (Neonatal and Child) Nursing, lives with her son aged 14 and daughter aged 9. Ethnic background/nationality: White British.
Right. My son John has classic Asperger's and he was born at 36 weeks gestation. I think the first time I knew that he was different was when I looked at him and looked at his body position in the basin on the overhead heater when he was born and I knew immediately that I was in tune with him because he looked cold. Now I am a neonatal nurse and I was being nursed by my colleagues, so I had a huge advantage in the sense that not only was he not behaving like a normal 36 week gestation for this small age, but his behaviour was a bit different as well. So that was my first recollection of his difference.
The second profound recollection was when he was eight weeks old and a health visitor friend of mine came to visit me and him and I was aware that no matter how hard I worked with him, he didn’t want to smile back. And she worked for about two hours and finally we got him to give a glimmer of a smile. And I remember thinking at the time this is really strange, and also having a lot of experience with babies, I also noticed that he really needed some kind of sensory attention every two hours. So he needed, not necessarily to feed on me, but to nuzzle and to nestle and that was strange and the most bizarre things would startle him, much more so than I was familiar with.
So the practical aspects of having a baby were not a problem to me, neither was the prematurity because I am trained to deal with that, but his behaviours were puzzling me and I was so in tune with him that when I would speak to the health visitor or my colleagues, they would say, “Oh [Jane] it is just you. You are just doing your job on him. Sit back and be a mother.” And what they forgot was that I was being a mother and it was my mothering that was trying to communicate with them and what was stopping me was my professional understanding that they had no idea what I was talking about.
The most common signs that parents noticed were delays in developmental milestones such as walking, talking, pointing or smiling. Parents’ responses to these delays were often shaped by whether the child was their first child or whether they could compare their child’s development to a brother or sister. Parents were less likely to notice unusual development patterns if they only had one child. Parents with more than one child compared their children’s development.
Tony, a market manager, and Alison, a dinner lady, have two children; Fiona aged 13 and Nathan aged 10.
Alison' We first noticed things.
Tony' I think Nathan was probably about one. We knew that there was …
Alison' I think it was a bit earlier than that actually because we kind of noticed that Fiona was sitting upwards at 7 months – I mean he wasn’t was he?
Alison' But we just put that as a developmental thing.
Tony' When Fiona was quite a fast developer but with Nathan we knew by the time eighteen months came along that he wasn’t making the right development with regard to speech. We knew that we had problems. But getting anyway to listen to us was always the issue.
Alison' He didn’t walk until he was eighteen months.
Tony' He didn’t walk about he was eighteen months. He was reasonably okay with nappy training and then toilet training.
Alison' It took a while though didn’t it?
Tony' That was … it was a lot less painless then I thought it was going to be. but since about eighteen months I knew I had problems with him. And then like I say it was just really a case of trying to get somebody to listen to us. We went through all the usual routes, you know we went to see the doctors and the regional health visitors and they just didn’t seem to latch on the fact that this kid had a problem. They just thought he was under developed but there were certain traits with him that we knew ‘no it is not under developed there is something psychologically incorrect with this kid’ and we sort of felt on our own for a while didn’t we?
Alison' On our own for a very long while.
Tony' Yes. So yes, really from like Alison said from just under one to probably eighteen months we knew that we had got some developmental issues with him. But then it was a case of we really struggled to get a diagnosis and then we didn’t know where to turn so …
Alison' Well we tried to get him into the nursery school, where he is now, into the nursery but at the age of like about sort of three and a half that they go there go there isn’t it?
Tony' Hm. He wasn’t talking at three and a half. No he wasn’t talking. He was making noises and grunting and ….
Alison' We tried to get him there at three and a half and I went with him for the first day and straight away I though there is no way. He just was not ready for … all of the kids were playing in the water and he was just like a whirlwind. He was just creating havoc and he would be lashing out and hitting other kids and me and the teachers agreed that this just wasn’t going to happen.
Tony' Yes. It brings it home when you viewed him compared to other kids in his peer class. You just knew then that there, we had got big issues with him.
While some children reached developmental milestones at expected times many were late to talk, walk or become toilet trained. Some children missed a developmental stage such as crawling altogether. One mother said' “We didn’t do potty training. One minute he was in nappies and the next minute he was on the toilet…he didn’t conform to any of the books”.
Sandy, 38, lives with her two sons and is a full time carer. Ethnic background/nationality: White British.
Did you compare his development with other children at that time before the diagnosis?
I think I did. I think I did. Yes. If I think about how he was then, he was always a bit unruly at his mums and tots group and he always used to find it really difficult to sit down in a group and do the singing, although he used to like the instruments and banging around he was never really content to sit down and do singing with everybody else. He just wanted to potter about and do his own thing.
He didn’t walk, this is Joseph the older one, he didn’t walk until he was fifteen months old, which I was a bit sort of concerned at, but then people say to you boys can be lazier than girls and he is a first child, he has got nobody to copy, but then the first time he did walk, he just sort of took off and shot across room and I just thought wow again [laughs]. So I don’t know if he had been practising in secret something just as if to just suddenly go, and say, “Hey look at me, I am off.” So yes, but the speech was the big thing as well because there was absolutely no little ‘mum’ ‘mum’ ‘mum’ sounds or anything like that. He used to do a kind of babble but it wasn’t even really like a baby babble it was just totally just little noises and things rather than speech sounds. But he would sit there going sort of ‘ooh’ ‘ooh’ ‘ooh’ ‘ooh’ and little things like that but not really ‘ba’ ‘ba’ ‘ba’ or ‘dee’ ‘dee’ ‘dee’ and things like that which sort of a lot of children do.
Regression around the age of 15 to 21 months is common in about a quarter of the children diagnosed with autism, and a few parents described how their children regressed and lost some of the skills they had developed.
Talking and interacting
Many parents said that their children had unusual speech patterns. Some children talked late, others didn’t talk at all or made noises that differed from typical baby ‘babble’. As one parent commented; “Right from the beginning I knew there was something wrong because he didn’t babble, he didn’t make the usual noises”. Many children had had speech therapy and began to talk when they were between three and five years old. Two children spoke early but then regressed when they were around 18 months to 2 years old and lost the language they had learned.
Helen, a full time carer, and Jason, a garage mechanic, have two sons aged 6 and 2. Ethnic background/nationality: White British.
Helen' He didn’t speak did he?
Jason' No, no, he couldn’t speak.
Helen' And when he did speak it was sentences. Not like a normal child, where you get the words, the bus, the car, the whatever. Josh would sit there and he did full sentences. And we didn’t do potty training. One minute he was in nappies and the next minute he was using the toilet of his own vocation. He had worked out how to stand up and use the toilet. He didn’t…. and he was really strange he did not conform to any of the books.
Jason' There was no in-betweens.
Jason' He ….
Helen' No. It was… wasn’t it? I took him to parents and toddler group. We did live in [town] you see, in private rented. I took him to toddler groups and he wasn’t interested in the other children, didn’t want to play, had nothing to do with them, he was extremely hyperactive. So we cut out all the E numbers, didn’t we, because we assumed, because both two of my brothers suffer from an E number allergy thing so we knocked all the E numbers out and although that calmed him down, he was still unsociable. No contact, no… and he hated me. I still can’t touch him. He doesn’t like me… but we never really hit if off anyway.
Helen' He is not a cuddly child so. He adores you though.
Jason' He just doesn’t show it, does he? He doesn’t know how to show his sort of emotions. But yes, just watching him with the other children you realised that something wasn’t right. Everything, Josh when he was playing, his cars always have got to be in a straight line. There is no sort of random, everything has got to be the same.
Helen' He stands the same size cars next to each other.
Jason' So we started thinking well is there more to the way he is behaving than it is just Josh sort of thing? We thought for …
A few children repeated words or phrases they heard; a form of speech called echolalia. Some parents we spoke to said their children copied voices from DVDs or the TV and spoke like ‘Darth Vader’ or Nigel Havers, using the same intonation, accent and rhythm.
Amanda, a part time yoga instructor, and her husband have two children; Louis aged 5 and Georgia, aged 3. Ethnic background/nationality: White British.
Well we myself and my husband [name] we were older parents. I was I think 33 and he was 40 when we had our son Louis in 2001 and then we had Georgia 20 months later in 2003. Louis [to begin with seemed a very bright, I mean he still is, a very bright little boy. He spoke very early, you know he ticked all the boxes at the assessments but then when he got to sort of two, two and a half, the speech sort of stopped. It is funny really because he has got a lot of echolalia and he could recite great long reams from his Disney films, you know. I think his first sentence was ‘to infinity and beyond’ [laughs]. But he couldn’t ask me for a drink, you know, and he would just kick off and get upset and frustrated because he couldn’t make you understand.
I didn’t realise, I had never even heard of autism. The only thing I had heard was that there was some controversy with the MMR injections which I had not had [laughs] because of that. I had not had, I had, I paid separately and we were referred to a doctor, who you know, said it wasn’t, it was a communication disorder and the triad of impairments he was showing. We then went through CDC which is the assessment process, you know, and he was diagnosed and we were, we were upset, you know, we were, you know, you feel like all your dreams for your child are over and you know what is going to happen to them. But you know we got him into a special school which is a brilliant school that we have locally.
In addition to speech, parents identified other signs to do with communicating with people. For example, some children did not point to things or respond to sounds like clapping, leading some to suspect a hearing problem. While such problems are rare in children on the autism spectrum, it is important to test hearing. A few children did not smile, while others did not want to be cuddled or make eye contact with people, which parents found unusual. Some parents described their children fighting against cuddles. A few parents described how their children had blank expressions and did not respond in a typical way and some children were described as being in their own world (see ‘Communication; understandings’).
Caron, a full time carer, and her husband have two sons; Leo aged five and Peter aged 2. Ethnic background/nationality: Mixed race.
We first got concerned about him when he was about six months old. He didn’t smile at people, you know, other children were beginning to babble and say words. He didn’t say anything at all really. He just seemed to be very much in his own world. That sounds such a cliché but we could just put him in his bouncer and the would happily sit there all day and not murmur and he didn’t get hungry or get thirsty, you know, even as he got older he would never ask for things, we would have to tell him, you know do you want something to eat, do you want something to drink. He would never ask for anything. I mean I knew straight away I could just tell. Even though I didn’t have any other children first, I just knew there was something weird about him so to speak.
Age at interview:
Dot, a former social worker, is now a full time carer and lives with her son aged 15. Ethnic background/nationality: White British.
And that is how it started off really. But for a long time I was completely on my own. I was upset all the time, you know, sometimes he wouldn’t eat. I couldn’t take him to the park, anywhere, anywhere that you would take children that you think they would like, it was a disaster. You couldn’t have him with a group of children. Again like, in the local park there is like a wooden castle that you can climb up and it is quite big. It has got ropes on it and things like that. He would run up the rope and if anyone was in front of him he would pull them off to get to the top. He wouldn’t wait. And then I would come away from the park after about ten minutes. He would get told off and I would bring him straight back and then it went on like that for a long time.
He wouldn’t sleep, up six, seven times of a night; he was tireless, completely tireless. And I was exhausted and I ended up crying, you know, I ended up going to the doctors, I ended up asking for medication for me because I just didn’t know how to cope with it. I used to ring friends in [city] and say “Can you come down and help me of a weekend?” or you know, “Can you come and see what you think is wrong”. But you couldn’t even hug him; he didn’t want you to go anywhere near him. It was horrible really.
Several parents' children had been unusually quiet and content as babies and spent hours lying in their cots or pushchairs. Although other people commented on what good babies they were, these parents were concerned that the children did not demand food, drink or attention. A few of these children did not cry until they were over a year old, but some children were the opposite. One mother described how her son “came out screaming and that was all he did; scream and scream and scream. He would feed for a couple of minutes, go to sleep and then wake up and scream for two or three hours.”
Christine has two adopted children, the oldest, Brian, is 30 years old. She lives with Brian and Alice, her daughter's child. Ethnic background/nationality: White British.
Now I look back he has never cried. Never cried. He was always pleasant and the social worker who went to see Brian when he was in hospital before I got him, she said, when she went in and he was only a few weeks old, he always smiled. But as I said I have never seen any tears with Brian. He just does not cry.
When... he didn’t crawl. Occasionally he would roll, maybe four times, all this time he used to roll, but he never crawled and he was about eighteen months old before he walked. And he didn’t speak very well. He didn’t say full words. He used to say a bit of a word and then we applied to have a second child. I got [daughter] when Brian was only two. But he must have spent two or three months just saying the word two. Whatever you said to him, he would say “two”. Whether he meant he was two, or there was of them I don’t know. But I didn’t think there was anything wrong because I was so… I think looking back, you know you look back, it is very easy to look back isn’t it and say, “Well, looking back and looking at [name], she is completely different.” You know I would see that, but even then I sort of, I took him, we moved house and we moved into [city] and we sort of he got to the age of three, just over three and he still was not speaking clearly. Saying half a word.
Several parents we spoke to remarked that their children did not play with other children or join in activities such as song time at playgroups or nursery. A typical comment was “all the kids would be playing and he would be at the other end of the garden.” Some of the children found playing with other children difficult because they wanted to play by specific rules and could not be flexible (see
‘Communication; understandings’). Other parents described their children as loners; and many of these enjoyed being outside and loved nature and animals (see ‘Activities’).