Some children had difficulties recognising people’s faces. Parents described instances when their children did not recognise other children from their class when they were out, or even recognise their own parents at times. One mother described how:
“At the age of five and six, when we were walking into school, all his friends, not his friends, all the people who knew him would say, “Hi Joseph.” And he wouldn’t even hear them. And I would say, “Joseph, that person over there said hi, who is that?” And he said, “I don’t know.” Totally not interested. They were just not there in existence, yet if they offended him, he knew. He didn’t remember their names and he didn’t remember who they were.”
Mary-Anne, a full time carer, lives with her son who is 11 years old. Ethnic background/nationality: White other.
I, suppose, no the only one area about Asperger's syndrome, I think there again that we didn’t cover was you know people think that you can’t have a relationship with people with autism, a bond, but you can. And it is there and there is things that you notice when they are really little, like when Arthur was little it is only like when you get the diagnosis then you start to think back and you read about and you think, oh, oh yes I remember that. And that you wouldn’t take like, I can remember with Arthur, because he was always really difficult to take shopping I would like drop him off with my sister and then I would go shopping on a Saturday morning and then I would come back to fetch him and he wouldn’t ever come running up, hello, so nice to see you, you know, or missed you mummy or you know he would kind of stay back and I always used to think maybe he was cross with me because I had left him, but when I actually think back I think he actually wasn’t sure, because with Asperger's syndrome and the autism sometimes they have difficulty recognizing people’s faces and I think he just had to watch to see that it was me, because slowly then he would come up and start talking to me.
And interacting, not necessarily talking, but you know. And that and I never knew that that was a problem, and it was only when he went to the mainstream school he… about six months after he had been there, we would see kids from his class out of school and he wouldn’t recognize them. They would say, “Hello Arthur.” And he would go, “Now how do they know me?” And I would say, “Well that is Chloe from your class.” “Oh.” You know and those sort of things people don’t always tell you that those are things that you know, that … yes, facial recognition I think is quite a thing. And you don’t realise that and so it is kind of hard to explain that with strangers, you know, that they don’t recognize you because you are not wearing the same clothes or you are not in the same environment and but because of that it doesn’t mean that the child doesn’t like you, or doesn’t you know, bond with you or can’t, you know.
Age at interview:
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.
As he has grown, his difficulties with his physical side have been marked, because he won’t join in with things and that has sort of like isolated him and also because of his autism and his the way he communicates, not communicates, what am I trying to say … he doesn’t like, he likes people, he loves people. He wouldn’t see any difference between me and a complete stranger. If we went out he would sit on a bus and chat to anybody about anything and make them laugh but then again he would never look at someone’s face and sometimes he can be wary of people his own age. You know his peers. If he meets someone from school he wouldn’t want to speak to them or anything. He would hide behind me, but if it was a complete stranger and they were either younger or older, he would absolutely fine with them. It is quite strange really.
All the factors discussed so far meant that few of the children we heard about had many friendships. Some children had a group of friends they hung out with but most did not. One mother described how; “Sometimes he says his friends come and play with him, which means two boys come and play with him for maybe two minutes out of the whole day and the rest of the time I think he is on his own.” Another mother said her son has never really believed he was a child and could never understand the behaviour of other children.
Nuala, a software engineer, and her husband have a daughter aged 11 and a son aged 9. Ethnic background/nationality: White British
Does he have any friends?
Yes, some. Yes, if you ask him at the moment, he would probably list off about ten names [laugh] but at other times he will have no friends at all [laughs]. It is a bit of a moot point. He doesn’t, he doesn’t make friendships very easily and they can sometimes just suddenly disintegrate for quite small reasons so they are a bit fragile. But we work quite hard with him on having people home and how you play with friends and how you talk to them or let them talk to you, which is a really big stumbling block. And how you play games that maybe they want to play is another big stumbling block. So we are working on it and I think maybe one or two of those people are kind of friends that a nine year old would have.
A few of the children became very intense about a particular friendship and would become upset if the friend played with other children. Understanding how friendship works was difficult for some children and a few parents described how upset their children were when they began to notice that they were not included in other children’s games. One mother had the problem that other parents would not let their son play with her son - she did not know why.
Several parents talked about how hard their children tried to fit in with their peer group and this was also a common theme within our interviews with adults on the autism spectrum (see 'Feeling different'). Trying to make sense of information as well as having heightened sensory awareness could be very tiring for the children (see 'Fears, anxieties, sensory issues and meltdowns'). One mother described her son as running an ‘emulator’ spending every waking moment trying to fit in.
Carolann, a teacher, lives with her husband and daughter, Nita, who is 19 years old. Ethnic background/nationality: White British.
I mean my daughter, Nita, will say to me, “How are you mum?” She won’t actually want to know really how I am and she is not particularly interested but she knows that is something that I like her to ask me. Or if I fall over and hurt myself or cut my finger, she will say, “Oh I am sorry, mum” because she has learnt that is the response. She doesn’t particularly feel it I don’t think. Or even particularly care if I have cut myself. But these are the cues that she has learnt to pick up from society. So she is really learning by some kind of observation not by osmosis, like we sort of pick it up as we go through our lives. They don’t do that. That bit of the brain that is to do with understanding those kind of things that go on in society is very faulty.
And she has become very adept but not adept enough to fool people for long. She says to me that when she is out in neurotypical or normal company, after about two hours, may be three hours, she has become utterly exhausted and all her ploys and tricks and schemes that she has worked out start to fall by the wayside, because she doesn’t have the energy.
Her brain, the intellectual part of her brain that makes these decisions is having to work so fast. Faster than you or I can ever understand. Here is a situation, I have twenty solutions, twenty things I could say, which one should I choose? And she is going through those twenty solutions, those twenty answers at the speed of lightning and picks one. If she is tired she may pick the wrong response and so that is when things start to fall apart and that is when people start to think, hang on, something is not quite right here. I can’t quite put my finger on it. I don’t know what it is but, I feel uncomfortable in this person’s presence. They are not like me. That is what others will say to her and then they back away and once they have backed away, they never return because people have made up their minds about her, which is why she leads a lonely life.
While many of the children had difficulty communicating, some parents emphasised how loving their children were with family members; a characteristic not typically associated with autism. The children were described as “very loving, very kind and very clever” and “loyal”. One mother described her son as “surprisingly empathetic and surprisingly considerate” and another mother said that empathy was something the children could learn over time.
Barbara, a retired social worker, and her son, Howard, live together. Ethnic background/nationality: White British
Barbara' Things like that, like. Oh and I say to you, “I love you,” and he will say, “Yes, I love me too.”
Barbara' They say there are a lot of things that autistic people can’t, or can’t do, but they can learn it. Certain things that we can do you know, you know learn automatically, it comes to you automatically, it doesn’t with autistic children, but they can learn it because you have over learnt with a lot of things that you do. You know. He is marvellous. And as I say his sense of humour, well I don’t know where that comes from. I don’t know where that comes from. It is terrific.
However some parents said that their children were not loving. One mother, for example, said her six year old son with Asperger’s syndrome had “no compassion, no empathy with anybody” and some children also very much disliked being touched which was difficult for their parents.
Rachel, a former social worker, is now a full time carer and lives with her husband and two sons aged 9 and 6.
He loved needing someone to be close to him but he wouldn’t allow, he couldn’t allow you to touch him, it was like hugging a little board, he was so stiff all the time, and although he craved me to love him and hug him, he couldn’t actually physically stand me being close to him. So even when he was sick, he would sit like a board on my lap and play with my hair and that is as close he would allow me. I couldn’t put my arms round him. He couldn’t put his arms round me. He couldn’t face me or look me in the eye or anything like that. He was just stiff the whole time. So we got to the point where I would just massage his feet and he could stand that, but that is about all the physical contact he could stand when he was little. The last year or so he started hugging me, like arms round me proper hug, and he is nine now, so it is lovely. But it did take an awful long time before he could stand to do that and that was hard for him.