While there is no evidence to suggest a link between autism and birth complications, a few of the parents we talked to described complications during birth or their babies were born prematurely and they thought that this had something to do with their children’s autism.
Christine, a full time carer, lives with her partner and her son aged 27 and daughter aged 12. Ethnic background/nationality: White British.
What sort of things did you first think were sort of different?
I think as soon as she was, well a couple of days after she was born really. Well I had a feeling even before that, before she was born, because she was very quiet. When I had me son he used to kick a lot and you would feel him moving quite a lot. I mean he was kicking your ribs and you would be winded actually and have to sit down and Elisabeth didn’t move and I used to think, I sometimes used to worry in case something had happened to her and I didn’t know she was a she at the time. Well I had a feeling because of me bump, because you see you have different bumps and I started to get really worried near the end until she started, like sometimes like I got the impression that she was constricted in some way, because you used to feel a hand pushing at the side there.
And it was, like to me, it as like she was trying to get out. Do you know what I mean? It sounds stupid but… and I would think ‘oh I wonder if she, you know if the baby is all right’ because that was the first time I really felt anything definite. All the time I was worried she wasn’t moving and things. But I think well if I go to the doctors and he will say oh don’t be silly, you know, because you never feel the turning or anything like that.
Some children demonstrated other signs of stereotypical ‘autistic’ behaviour such as lining up cars, hand flapping, watching the same DVD over and over again or being very drawn to buttons, lights or electronic equipment.
Rachel, a former social worker, is now a full time carer and lives with her husband and two sons aged 9 and 6.
Tom, for instance, was a horrendous birth, a really, really difficult birth and then he slept after that for months and months and then one day at about three months he woke up and that was it; sleep patterns were out the window. He fed nicely but he was just a very stressed, restless baby. Right from an early age, his sleep patterns were disturbed. He was scared of things. For instance, we would go to my mothers and they have got an old farmhouse and they have got old beams and as a baby he used to sit there screaming of the beams, because he was scared of the beams. So from a very early age he was fearful of things and very anxious, a very anxious child.
He, let me think. He wouldn’t… his crawling and his motor skills weren’t great either. He couldn’t catch a ball and he couldn’t crawl properly. I had to take him to one of these classes to help him crawl. He wouldn’t do any arts and crafts but all he would do was playdough and we would get this playdough and these little animals and we would make the animal stamps out of the playdough and then he would scrape the faces off. And he would do that for hours. My husband can’t look at playdough any more because that is what he would do - scratch the animal faces off these little animals - and he would do that for hours and hours and sometimes we would think he was some sort of genius because he knew his alphabet at two and a half and he had encyclopaedic knowledge of Thomas the Tank Engine and the Telly Tubbies and then it moved on to dinosaurs and at three, three and a half he knew every dinosaur there was, which period they fitted into, Jurassic or Triassic or whichever period they fitted into. He knew everything about dinosaurs and we thought he is brilliant and that is why he finds things so difficult.
Several children became distressed or very frustrated regularly and would have temper tantrums or lash out unexpectedly, which parents found difficult to manage (see ‘Fears, anxieties, sensory issues and meltdowns’). Another characteristic of the autism spectrum is advanced skills in areas such as maths or science and a few parents described how their children were brilliant at jigsaw puzzles and maths from an early age. One boy had advanced reading skills from a very early age and was eventually diagnosed with hyperlexia* in association with autism.
Jane, a Senior Lecturer (Neonatal and Child) Nursing, lives with her son aged 14 and daughter aged 9. Ethnic background/nationality: White British.
And one day, I thought he is really working things out and I had two bowls of, two little dishes, and in one I put orange slices and in the other I put Maltesers. And I sat with him and I gave him the orange slices and I kept the Maltesers for me and he looks at the Maltesers and he looks at me and he looks at his orange slices and his little head is doing this. And he said, “Let’s share.” I was so impressed so we shared and then he was counting the pieces and he was only two and he was going, “One for me, one for you.” And he was actually counting. And he could count and he was counting in twos before he was three and he was reading by himself and at school he was, while other children were doing numbers, when he was four, while the children were doing number bonds to ten, they had a caterpillar. The caterpillar ate, the caterpillar had eaten nine leaves and he ate one more and that made ten. Well Joseph’s caterpillar ate 999 leaves and ate five more and came out with a 104. A 1004 and at the age of four it is quite amusing. So yes we knew we had got a very different child but so far he was conforming.
Age at interview:
Tony, a market manager, and Alison, a dinner lady, have two children; Fiona aged 13 and Nathan aged 10.
Tony' Yes. It wasn’t anything specific that stuck in my mind. It was just he didn’t seem to be developing. There was a little lad over the road, who was probably about nine months older then Nathan, who seemed to be miles ahead of him developmentally, you know in a development sense. And then we got Nathan, who seemed a bit a small. He just didn’t seem to be … it wasn’t just speech. I mean the big thing would be, you would notice his speech but there were other things as well. You know he wasn’t, he wasn’t doing the things that kids of that age you would expect. He wasn’t taking an interested in ….
Alison' He used to get very frustrated with things. Didn’t he?
Tony' Yes. Yes. He did, quite a lot.
Alison' When he was a bit older. A little bit older and obviously he wasn’t speaking when he should have been speaking at that age, maybe even at about three when he really should have been speaking and he wasn’t and when we were going up to the Family Support Centre do you remember, he had a permanent bruise on his forehead.
Tony' yes he did.
Alison' And a permanent lump on the back of his head.
Tony' Where he would smack himself.
Alison' He would stand where you are now and run all the way down and just run into the patio door and smack his head on the patio door and then throw himself on the floor and bash his head on the back of the floor. And he would lie on the floor bashing his head on the floor and I took him to the doctors because it frit me to death. I thought God what is he doing to the inside of his head. And the doctor was saying, you know, the skull is a lot, lot harder than you think and don’t worry. He might be bashing himself about but he is not going to do too much damage. I used to think, I hope you are right.
Tony' Yes, it didn’t look like it at the time.
Alison' I used to think people must think I am a terrible mother you know. You know, I am sort of like there is this kid with a permanent bruise on his head and he is screaming and shouting and I am not doing anything about it. You know because people just look at you and think oh a badly behaved child. What a terrible parent. And you are thinking …
Tony' Hm. Yes. You get some strange looks out of people don’t you but…
Alison' …I would like to see you cope with this.
Age at interview:
Joy, a library assistant, and her husband have one son, aged 13. Ethnic background/nationality: White British
It was really from I would say… eighteen months to two that things were starting to happen that made you think there is something not quite right here but then you kept convincing yourself that maybe you were just being ridiculous, but the first really, really significant event was taking him on a train for a very short journey and him saying, complaining about this noise that I couldn’t hear and becoming very, very distressed and so distressed in fact that when we got off somebody came over to me and asked if he was all right and I was so worked up that I didn’t take him home on the train. I remember taking him home on the bus because I couldn’t face the same thing happening.
It was things like he became extremely distressed when you vacuumed. If he saw the vacuum he was upset. It was things like that and the fact that it couldn’t be a game, it really was, he really was upset. It was things like taking him into public loos and if anybody turned the hand drier on he went berserk because the noise must have hurt his ears, but you just don’t know what is the matter, you are distressed because they are distressed. So there was a lot of difficulty after that whenever I sort of wanted to go anywhere I would always be thinking would something like that happen.
You know when I think about it now, our lives became quite difficult. We had his hearing tested [laughs]. It seems bizarre now. I didn’t ever think there was anything wrong with it but that is all the health visitor could offer. Because I’m presenting this picture of this child that is giving behaviours like that but at the same time he was very precocious. He spoke not long, his first words not long after his first birthday and by the time he was eighteen months I have a list somewhere which has a vocabulary of sort of 75 or more words. Not small words either and he was very distinct in his speech. He didn’t ever, you might not have understand what he meant but you never could have said that his speech was indistinct, that you could hear the words you might not as I say understand what he meant, but there was none of the sort of pretend words that children often give to objects. They call something, something else, and he spoke in sentences, well in paragraphs really.
He read early and he taught himself. He was very nosy. He was a very nosy baby. He always wanted to look at mechanisms. He was fascinated by buttons and lights coming on and things. So a lot of, I think education professionals tended to pick on that first and then after they had had him in their class for a while it was obvious that he had social difficulties which I was becoming more aware of as well. From the time he was at play group, that he couldn’t let other children play because he wanted to be in charge of the game. And as well he wanted to apply things like rules of railways for instance had to be applied to the game. There wasn’t a flexibility. So whereas other children were moving on to play with each other, he didn’t do that. It wasn’t that he was disinterested I don’t think in being social, it was that he didn’t now how to do it. And so a lot of anxieties began to display themselves, especially when change and so forth had to happen.
Food, allergies and fixations
Some of the children had digestive problems and had constant diarrhoea and projectile vomiting as babies. There is no evidence to suggest a link between food allergies or intolerances, hyperactive behaviour and autism, but some parents thought these might be related (see ‘Medical and dietary interventions’). A dislike or inability to eat solid food or only eat particular types of food was another indication for some parents. They worried about the children’s nutrition as some children only ate crisps and biscuits or drank unusually large amounts of juice. One mother was surprised when her second child ate more than chicken nuggets and chips because she was so used to cooking the same meal for her older son three times a day (see ‘Eating and sleeping’).
Rosie, a retired nurse and artist, lives with her partner and youngest son Sam. She has four children aged 29,27,26 and 14. Ethnic background/nationality: White British.
And no one said anything about his milestones. They were all reached. He was walking and he was about thirteen months old and everything was fine, you know. And it wasn’t until he was about three I guess when things started to happen for him and we noticed that things weren’t quite right. He used to have this fixation of eating things. He used to eat anything, absolutely anything. He used to eat food, he was not very good at eating food, even when he was little, he always makes a horrendous mess, but most children do when they are little, you know. But he would eat anything else. Anything that was lying around;he would chew his clothes to pieces,he would eat metal and if there was anything… One incident, he got into the dining room and there were some glasses on the table, you know just wine glasses and he started to eat it. So of course we had to go up the hospital and he had glass in his mouth and it was quite upsetting because the doctor said I wasn’t a very good mother to let my child eat glass and they couldn’t understand why he would want to eat glass, you know.
And another occasion was we were washing up and he was standing on the chair helping me and he suddenly drunk loads of washing up liquid and that was quite funny because every time he opened his mouth, great big bubbles came out, you know, and my other children thought it was really, really funny, but obviously we didn’t know if it was serious so we had to have another visit to the hospital [chuckle] and there were endless visits to the hospital because of his eating. Everything you know had to be put away, like, you couldn’t leave anything in the bath or soap or anything.
A few of the children had poor attention spans and some parents initially thought that their children had Attention Deficit Hyperactive Disorder (ADHD) (see ‘Information’). One mother said her son “had no attention span at all, no attention to detail and was a bit of an airhead” while another said her son became extremely hyper” every time they went somewhere new. Several children also had difficulties sleeping or an apparent lack of need for sleep (see ‘Eating and sleeping’).
Some parents were sure that there was something different about their children from a very early age. They could not put their finger on it, but felt that there was something unusual about their baby’s expressions or that their children seemed “old for their age”. As one father said;
“From the very first day he was born we could see there was something different. It looked as though he had been there before. That is the only way I can explain it. He came out and he looked around as if saying, “Oh yes, I have seen that. Boring.” He just… and there was something in his eyes that was just different. And I thought, he seems to know it all, he just seemed to know it all.”
Jeanine, a local authority employee, lives with her daughter aged 11 and son aged 8. Ethnic background/nationality: White British.
Age at interview:
John, a civil servant, and Lynne, a teacher, have two sons aged 28 and 32. Ethnic background/nationality: Welsh.
What sort of things was it about his behaviour that …
Well when he was very small there were lots of things that made us very anxious. He was slow in developing speech. He had very, very odd behaviours, such as doing the opposite to what you would expect. So when it was cold he would take off rather than put on clothes. One particular instance I remember was when it was snowing, he actually took all his clothes and ran out into the snow which was quite upsetting for me. Another thing he would do when he was quite young, was he would get the wrong emotion, so that if he fell he would laugh or if somebody hurt themselves he would laugh and he seemed to do the opposite one, he didn’t seem to know which emotion to use. I remember one time he fell and right flat on his face and he had an awful state, you know, nose bleed, terrible, and he just kind of got up as though nothing had happened and that was very, very scary. He would also do things like have screaming fits for a long, long time, you know, may be a couple of hours, something like that and those were really nasty times I remember.
Age at interview:
Christine, a full time carer, lives with her partner and her son aged 27 and daughter aged 12. Ethnic background/nationality: White British.
You know, she had this look even from when she was a tiny baby. I got the impression that she thought you were really stupid. It was the look she gave you as if to say you are just so pathetic. Do you know it is awful strange, even from when she was about six or seven months, like she had this play mat and it had animal noises on and like she didn’t like you holding her hand or she didn’t like you picking her up or anything and I would have her hand and I would push it onto this sheep sound and it would be ‘baaa’ like that and she would look as if to say, “Now isn’t that stupid. Why on earth are you doing that?”
And I would look at her and I thought she is looking at me as if I am really thick you know, and I am going, “Ooh this makes a lovely sheep noise.” And I would go to grab her hand and she would try and pull away from you, you know. And I would say, “Well look.” And I would press and I would go, “Oh it is a sheep.” She would go as if to say “Oh you are really sick. Why are you enjoying that?” See what I mean? But it was like all canny, do you know what I mean as if they knew things you didn’t, which you shouldn’t have off but yet other things they didn’t do. See what I mean? But it was always like that as if everything was too much trouble for her. Even like if I tried to show her how to crawl, I would be crawling on the floor and she would go and look and me like as I was really daft.
And I would try and pull her up on her knees and her arms, but it was like she didn’t seem to have any strength in her forearms. So like she would go to one side and sort of go on her back and she would just lie there, she wouldn’t even try and get up. She would just lie there but she would look at me as if to say, “Why on earth are you making me do this? It is so silly.” You know, like, as if she just didn’t want to do anything and like because it seemed more harder for her to use four limbs in then it was two which should be the other way round. It is easier to crawl then it is to walk, with her it was easier for her to walk, because she was only used to the two limbs.
I know it sounds daft but when I started like leaning her against chairs and stuff and she just dropped a couple of times and I thought ‘oh’, you know, ‘she is not going to like this’, but because she didn’t cry, you know, you used to feel sorry for her in case she was hurt and you wouldn’t really know. And she seemed to pick it up really quick but then I realised maybe later that she didn’t really have any fear of things as most babies would and they would start to cry if they fell. But it was only massive, like a week or so and she started to walk all on her own, which I was really surprised. But she never crawled or anything up to the twelve months and I thought well if she is not going to crawl or anything, or even shuffle or even try and move she has got to have some mobility. So that was the idea of trying to get her to sort of walk.
Age at interview:
Karen, a full time carer, lives with her two daughters aged 14 and 12. Ethnic background/nationality: White British
Okay it was just a general growing realisation that there was just something different, not wrong, just different. That she wasn’t invited to things the way of other children were. She didn’t seem to have as many friends as some of the other children were, she wasn’t invited back to people’s houses, she didn’t seem to be particularly bothered about inviting anybody back to our house. And then during my divorce from my ex husband her behaviour just became very, very difficult, and I had a lot of problems around child care. She didn’t want to either go to child carer’s or have anybody come to the house. She just wanted to be with me which caused problems for going to work and things. And it was just a steady sort of growing feeling that there was just something not quite right and because I have got a younger child than Nicole, who behaved very differently, who was very sociable, was invited to peoples houses, coped with changes in circumstance quite easily.
You know the big sort of telling thing when things really started to become apparent was when we moved from London to the Midlands and Nicole had you know a big change, you know change of area, change of school, I had a nanny, I employed a nanny and my younger daughter was to coin a phrase was like you know, it was like a duck to water. Okay I am at a new school, these are new children. I am going to make some friends and I am just going to get on with it. Whereas with Nicole there was just problems from every quarter, you know, my nanny was experiencing problems, the school were experiencing problems. At home her behaviour was becoming more and more difficult to manage, it was just everywhere I turned there just seemed to be difficulties with her behaviour and that was when you know I started going in for meetings with the school and we were actually referred to family counselling because the school felt as a single parent the school felt that because I was a single parent that the problem was actually the way I was dealing with Nicole, the way that perhaps I wasn’t providing sufficient discipline.
While many parents recounted early signs, some noticed signs only after the children were diagnosed and had not concerned parents at the time. As one mother said, “We thought that he was just a normal, very active, inquisitive little boy, you know, that was a little bit different, a bit of a loner.”