Kirsten lives with her three children aged 9, 7 and 4. Ethnic background/nationality: White Scottish
Oh [laughs]. That’s quite a question. Definitely biomedical things. There are definite links there to the sensory things, to allergies. Again these couple of mums that I am particularly friendly with, we have brainstormed and discussed, we would like to do a wee survey locally amongst mums to see what we can find out. There is definitely genetics and it is definite because you can look back to other members of the family and see traits. And people who maybe 30, 40 years ago should have got a diagnosis, now they would. So there is that line definitely, biomedical. Andrews has never had any jabs but that is because my sister and had horrific allergic reactions to jabs when we were younger, particularly the rubella jab we were very ill after that.
So I made a decision and the doctors backed me up and now that they are back in the town, this is where my sister and I grew up anyway, the doctors are absolutely okay with that because they saw the reaction that we had but one of my friends is absolutely convinced that her wee boy was okay till he had it. And whether it has then triggered all the biomedical things, but Andrew definitely had the biomedical things from birth. He definitely had a digestive problems, sleep problems, although at one point looking back on old video tapes at one point he did have a few words. About a year he did have a few words, but by the time he was two and he was diagnosed he had none. So I can see why people say there is regression.
And as a baby the reason they didn’t… they weren’t terribly concerned - the health visitor and the GP - when he was a baby was, he was advanced. He walked quicker, he sat up quicker, he moved quicker, he could do things, he could do jigsaws, he could do shape sorters, like in two seconds, so he appeared advanced. So I can see where the regression thing comes in. Why people definitely feel that because their child seemed clever, bright, alert, advanced and then whoosh, come eighteen months two everything goes backwards and I think with some children it is, the jabs are just thing that just trips them over the edge.
Whether it sets up an allergy thing. I used to be a member of Allergy Induced Autism. They now don’t exist any more but there is definitely an allergy link and there is a big family history on my side of side of the family of allergies, asthma, migraines, skin allergies, reactions to foods. So that is definitely, definitely part of it. It is almost as if with Andrew all these things sort of fit and then sometimes I wonder why was it him and not the girls? And somebody said maybe it is something going back to his birth and who knows. Who knows because he was blue when he was born and he had to get oxygen straight away and the girls didn’t. Was it stress related? There was a lot of family stress at the time and I was on crutches with Andrew as well, but then I was on crutches with Hannah and she is okay. It is really very hard to pinpoint what is the exact but I can see why some of the charities have a jigsaw as logo because it is almost like all these pieces. I don’t think there is any one thing.
We did some hair tests with Andrew three years ago now and where some children with autism it is high levels of mercury or aluminium, he had high levels of tin, which that took a bit of working out but when Andrew was born we were in brand new house and the copper pipes had tin solder and a lot of it. The plumbing work wasn’t terribly well done, that is how we can remember because we remember my Dad inspecting the work and thinking they have made a right mess of this. And they had used a lot of tin solder on the copper pipes. So maybe because then as a baby he was exposed to that. Rachel was already old enough and then we moved from that house before Hannah was born. Maybe
Some parents said they had no idea about cause at all and others said they did not care; their emphasis was on helping their children. As one mother said:
“Me personally? I have got no idea. I have got no idea at all. All I can say is that all my children are very individual. I just see Sam as my son and don’t see him as anything else. I know he has got lots of disabilities but I don’t see him as a disabled child."
Nick, a design engineer, and Vikki, a teacher, have two sons aged 10 and 8. Ethnic background/nationality: White British.
I don’t think I would want there to be a single cause, because that is when you start attributing blame. And he is, who is he is, he will always be who is he is. And I would rather work with them, than track back and to say was it something I ate? Was it something I did? Was it, is it genetic, is it something I didn’t do? I kind of don’t live my life in hindsight because there is no purpose to that. He is who he is and we have to move forward on that. Now if research helps future generations that is fine but I am not going to beat myself up over something that has happened, because as I say we can’t go back. If there was a pill he could take and that would transform him that is fine, but I think from what I can gather it is possibly neurological so he is who he is now and nothing can be done to make him a normal 9 year old child.
Another mother said:
“Well I realised very quickly after I had the diagnosis for Joe, I didn’t care what caused it. I didn’t care at all. All I cared about was how was I going to get through the next day? How was he going to be the most he could be? And I thought he is clever he is not going to waste it”.
For other parents, understanding cause was important.
Jeanine, a local authority employee, lives with her daughter aged 11 and son aged 8. Ethnic background/nationality: White British.
I have thought long and hard about the causes of autism and I have read a lot about it. I think the causes are maybe quite complex. I think, I mean I did everything I could possibly have done right in my pregnancy. I don’t drink. I have never smoked. I have never drank since I was 18. I ate very healthily when I was pregnant, if a bit too much. And I can’t say that I didn’t do anything different in my pregnancy with him then I did with my daughter. They were both 7lb 10 ozs [laughs] though my son was born a little bit early, only about eleven days I didn’t do anything different I didn’t feel him move around as much as my daughter but that might have been to do with the position of the placenta because it was at the front rather than at the back.
It is not surprising she turned into a very good swimmer because she had plenty of practice before she was born, she was very, very active. Robert was not very active and that did worry me a bit when I was pregnant because I couldn’t understand why I wasn’t feeling this baby as much as the previous one, but then he stays pretty much, stays pretty still in bed whereas she is all over the place, so may be it is just different children. The birth was easier, my daughter put me through days upon days of torture with the birth and I had a much more straight forward birth with him. I think there is a genetic link, there may be some sort of environment link. They were both born in Yorkshire there was no difference around that. I was taking antibiotics just before I was pregnant with him. I don’t know whether that was a factor, I had had a chest infection and I was struggling to get over it, whether that played a part, I don’t know whether that was a factor in it but I think there is probably some sort of genetic link there. I can’t say for definite but I think there is some type of genetic link.
They were both, my children were breast fed, my daughter till she was nearly two, Robert until he was two and a quarter because he had eczema as a baby he had hardly any cow’s milk at all. He had soya milk and soya yoghurts and things like that when he was a baby and it was only when he was getting towards three that I started letting him have a bit of ice cream with his sister and a bit of like, he used to like Babybels because he liked to unwrap them, so when he was sort of two and half, three, I started letting him have a bit of stuff like that. Not very much because I didn’t want the eczema to come back, but because I had it more or less under control with the allergenics cream I just sort of thought oh well I will just let him have a little bit and see what happens, but the autism aggression started kicking in when he was about three.
Whether that has got any links to dairy products, I just really don’t know but he has been brought up vegetarian, although he does eat fish. He is picky and fussy now in some respects with his food. But when he was a baby he wasn’t and really he has always been quite a healthy boy. He has obviously had colds and he has had, you know, chicken pox and things like that. I wouldn’t let him have the MMR. I was ironically, I was determined he wouldn’t have the MMR because I was worried about autism and then low and behold he has autism so I don’t understand that one [laughs]. And I read all the information from Jabs and all the vaccination campaign groups, I read all of that, I wouldn’t let him have the MMR, his sister didn’t have the booster but he did have the baby vaccines when he was like six eight weeks old. I don’t know whether that played a factor. But I just don’t know. His sister had the MMR and she is neurotypical. I don’t understand it. I wish I did understand it.
Many parents talked about genetic causes and described how their children were on the autism spectrum as a result of a “genetic clash” or how they could identify other family members who had “spectrumy traits”. Some parents were on the spectrum themselves or felt that one or other of their parents were on the spectrum. One mother said,
“I don’t know how much of this is in me or not, but I mean I know that I hate being in groups of people or going to parties with people I don’t know and all the rest”.
Tracy, a school assistant, and her husband have one daughter aged 19. Ethnic background/nationality: White British.
My... for a long time I was veering towards the MMR but now I am not so sure. I think there might be a little bit of that still lurking in my brain, but I think it is genetic. And my own opinion and I am not a scientist, is that genes and chromosomes mix that shouldn’t mix. You have got me and Andy and what I am saying is I think our genes and our chromosomes are not compatible and as a result of that is autism, ADHD, whatever disability. Like chemistry, you put certain compounds together whoosh. So I think the same theory with genes and chromosomes and stuff. That is what I really do believe and then if that is true or something alone them lines is true, then there is no, we have got no control over that because how would we know.
And then if I go back to the MMR theory which I have still got a little percentage in my head is the same thing. That you are given all these chemicals and jabs and then in certain peoples bodies they have a reaction that might not happen in somebody else’s body thus is autism, ADHD, whatever you want to call, this is the reaction of chemicals mixing together. They are saying not, but I have got a little bit of about 10% of me thinks that is a possibility but the majority is genetic I think, genes and chromosomes that don’t mix.
Age at interview:
Mary-Anne, a full time carer, lives with her son who is 11 years old. Ethnic background/nationality: White other.
I think, well it is probably genetic. I think for both of them. I don’t think there is a specific cause. Yes I don’t know, but I think research points to genetics and I would say that, I would say it probably is because in our family we haven’t… on my mother’s side I have found out since, because my parents separated when I was young, so I don’t really know my mother’s side of the family a lot. But, but I have found out, because I do know her now, you know, but she has got uncles and things that had tics and twitches and undiagnosed disabilities and things like that. So there is a genetic link. And then I know that the members of my family don’t necessarily have full blown Tourette’s or full blown Asperger's or autism or anything but they definitely have traits which are very consistent.
Like a member of the family who doesn’t really need to socialise, you know, or have little habits that you don’t notice, you know, that you can remember someone saying to you once, “Oh why does he always do that?” And you think oh yes, I suppose he does [laughs]. You know things there. And then you notice things in yourself I suppose. I mean I can remember little things like I always used to feel like I had a headache and then used to rub here and then the headache would be gone. But clearly you can’t have a headache around there and its gone, but you know when you are a teenager and that you don’t think about that but when I … you know so there are odd little things that I do and I think I fiddle with my face a lot anyway and you know. Yes, I think it is genetic.
Age at interview:
Joy, a library assistant, and her husband have one son, aged 13. Ethnic background/nationality: White British
Well I certainly feel that there is a strong genetic component. That is speaking personally. You know you read about families where they say you know that they can’t find any evidence. I think there is not just one thing, I am convinced that there are a lot of things just come together and obviously you know maybe in the future you know when two people form a relationship you know you may be to sort of do some DNA testing and say well if you two have a baby you have got a high chance of having an autistic one. In the same way that they now can say you know your child is likely to have muscular dystrophy or whatever.
Like I say I am very convinced there is a genetic component but I am sure that there are other things, I mean, I wouldn’t like to give you any labels you know, but I am, I just don’t think there is one thing, there might be things that are more significant but I couldn’t say that I, I don’t dismiss anything, well I do, sort of somebody will come out and say so and so about autism and I think rubbish. But no, there’s genetics, there’s the environment, you know, maybe even the sort of diet we’re eating these days, who knows? I just want to see, like with any, I’m not going to call it a disease, condition, whatever, I just want to see people looking down microscopes and having well funded research to find out why.
On the other hand, I don’t know. Maybe its going to get that we can cross the t’s and dot the I’s and then life’s got to have an element of risk so maybe we’ll know too much and then we’ll have people saying ‘oh I can’t do this because this will happen if I do that.’ If when I met my husband somebody said to me ‘your child will be autistic’ would it have made any difference because I don’t know. I really don’t know.
Age at interview:
Karen, a full time carer, lives with her two daughters aged 14 and 12. Ethnic background/nationality: White British
What do you think causes Asperger's syndrome.
I definitely think there is a genetic influence. My ex husband’s behaviour is quite rigid, is one way of putting it. He doesn’t like any alterations to any arrangements. If we arrange to meet at such and such a time at such and such a place then I have to be there. I have had phone calls when I have been travelling on the train from here down to [town] to meet him, saying “You are late, hurry up and get here”, and I have said “But I am on the train. I can’t make the train driver drive any faster.” And he gets quite aggressive if things change.
My grandmother was apparently a very difficult character. I’m you know, I could read by the age of three, as I say I was a telecommunications engineer, so I have obviously got that kind of you know, brain. I am left handed, Nicole is left handed. So I think there has been a combination of factors. You know, I had a very good pregnancy. I was very well, very healthy. You know did all the right things so I don’t think there was any impact there.
She was born with Asperger's. I mean when she was born I had quite a long labour and when she was born the midwife who wrapped her up in a blanket, said, “Oh she has just given me a filthy look.” She said, “This one has been here before.” And she was. She was a very intense baby. She frowned a lot and she stared a lot and she wasn’t I mean my younger daughter, [sister], was really giggly and smiley and laughed a lot, whereas Nicole was a lot more serious. A lot more intense.
We stuck coloured dots on the side of her Moses basket because she just used to lay staring at the side of her Moses bases, so we thought we would give her something to look at so we stuck these coloured spots on the side of the basket. She was definitely born with Asperger's syndrome. You know she is an aspy through and through and I definitely think there is a genetic component to it.
A few parents linked autism to the working of the brain and talked about miswiring.
Ciaran, a development manager, and his wife have a son aged 21 and daughter aged 18. Ethnic background/nationality: White Irish.
The research that has been done to date has been very, very small and research is building up these days and there is more and more going on, particularly in the States. I think it will be possible, some time in the future, to actually isolate what part of the brain is the problem. It is to do with pathways which are not communicating. Your normal typical brain will allow you to use different parts of your brain at once. Most autistic brains can’t do that. So that is one of the reasons why the communication breaks down within the brain. But it is getting to the reason behind that to see if there is ever a chance of some kind of cure at the end of day.
A couple of parents felt very strongly that their children’s autism had been caused by the Measles Mumps and Rubella vaccination.
Mike, an insurance broker, and his wife have four children aged 28, 27, 18 and 14. Ethnic background/nationality: White British
Well I have a personal vendetta, in as much that I actually blame the MMR needle for his condition because he was probably, he was the quickest of my four children to walk and crawl. He actually walked before he was one. All my other kids were one plus. So in terms of development he was probably the quickest of the four. So there was no worries there. He was okay. But then when he got to about two and a half he had the initial MMR and then you get a booster. And when he had the booster that is when it sort of seemed to stop. He was a normal, smiley, happy kid. Mummy, daddy, cat, dog, blue, green. He could actually work the video. My wife can’t work the video now but he could do it when he was two so he was quite sort of advanced. But then it just sort of slowly. You have got to live with the child, but you can see your own child not … taking up sweets, you know, instead of asking for a drink.
He just stopped. He just stopped. He just put the glass, and I thought he was just being a bit lazy. So it was sort of between two and a half and three we noticed it.
Most parents mentioned the MMR vaccination and a few thought that it could have been a trigger that had somehow triggered their children’s autism. Several parents had not let their children have the vaccination, or had separate vaccinations, so they dismissed it as a factor. For more information on experiences about the MMR vaccination see our Immunisation website.
A few parents talked about how they thought autism was a more visible condition now because of the pace of contemporary life.
Liz, 45, lives with her husband, a chicken farmer, and two of her three sons. Ethnic background/nationality: White British.
Well one of the things that came up in our last course and also in the Asperger's seminar is I don’t think there is lots of people and children with this condition coming up you know on a daily basis. I think, what it is, is 40 years ago, life was a lot simpler and they are finding you know that a child that was quite inventive you know, they would be the ones who in the 1890s there was probably quite a lot of Asperger's inventors. You know they would have the time and the man would be at home inventing his thing, the woman would be in charge of the home and, you know, school was very much your desk, your books, on your desk you didn’t have to change everywhere, everything all the stimuli that you get a nowadays.
I think they are finding now that it is actually of that disorganisation, too much choice, too much going on all the time that it is so much bombardment of information and what these children have, is they actually have a slower processing. So you know you are bombarding all this sort of stuff, flashing lights, noise, big classrooms, all that sort of stuff and they are not able to process the information quick enough and therefore they then go into meltdown and it is why they prefer to be in a classroom that is you know six or seven students or they prefer to be taught at home. Or they prefer to be on their own because it is quiet, it is more orderly and they are finding that this is one of the things and I do believe that that is a very big contributor.
I am sure that probably all the interventions that we have in everything is probably not helping, but I think up to now there isn’t really any evidence that bad diet causes Asperger's. I mean I am sure that some children are probably allergic to certain things and they get worse with certain products but I do think that it’s a combination of everything but the worse thing is the noise, the flashing lights, the… you know even watching a cartoon nowadays. I remember the first cartoon that was really quick was Roger Rabbit. That first scene of Roger Rabbit and I went to the cinema to see it and I remember feeling I couldn’t cope with the pace of the images that were really being bombarded in and from that year onwards they started doing a lot of things that are very quick, very quick, very quick, and I think the brain is just not coping with it.
And where our children are in front of computers, in front of the telly you know doing very fast and quick things and noisy things all of the time, with these particular children it is just aggravating it and that is why it is showing up more and also our roles, you know our roles now, women work or they, you know, it is more, it is not as defined as before. So I think it is a change of culture and a change of these like that. That is my opinion. I could be completely wrong but….
Carolann, a teacher, lives with her husband and daughter, Nita, who is 19 years old. Ethnic background/nationality: White British.
I mean they are blinking human beings, she has got a wonderful personality, she has got intelligence, she is articulate, she is funny, she is all those things, but she is autistic and it is that last little bit that almost invalidates everything else as far as the outside world concerned which I get very steamed up about. I get very defensive and very angry. And also I am saying to myself well why should she have to be like everybody else, you clones out there? You know you regimented team of people. She shouldn’t have to and you know we live in such a rotten society. If she was a child of the fifties or the forties, she would be accepted. Eccentricity was praised, you know, that kind of ability to see a totally different point of view or you know step outside the box, whatever that phrase is. They would be valued for their new eyes. Nowadays in the kind of society where everybody is supposed to be the same, we are supposed to like the same things, wear the same thing, she stands out like a sore thumb and people don’t like that.
Most parents talked about a combination of possible factors and things which may have triggered their children’s autism. In addition to the above, other factors discussed included the environment, allergies, difficult birth and mercury.