Mike - Interview 22
Age at interview: 55
Brief Outline: Mike's youngest son, Andrew, was diagnosed with autism when he was three years old. He moved to a specialist residential school a year ago, after spending a year excluded from school because of challenging behaviour.
Background: Mike, an insurance broker, and his wife have four children aged 28, 27, 18 and 14. Ethnic background/nationality: White British
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Mike and his wife have four children. When their youngest son, Andrew, was three years old he stopped talking. After getting his hearing checked, Andrew was seen by a psychiatrist who diagnosed autism. At the age of 4½ Andrew went to a special needs school for two years and then the local special needs school until two years ago when he began to develop challenging behaviour and was excluded from school. After nearly a year at home, Mike found a new residential school for children with autism and Andrew started there. He has been there for the past year and has made tremendous progress .
The family's life has changed over the years. They did not go out as much as they might have done because of the difficulties associated with the lack of visibility of autism as a condition or disorder. Mike thinks impact of autism on families is poorly understood, particularly because it is a lifetime condition. He is strongly in favour of person centre planning and would like to see joined up services. Mike is heavily involved in local support group and acts as an advocate on behalf of other parents. He views this involvement with the group as a positive development in his life and one he thoroughly enjoys.
Andrew is a cheerful boy who is happy with his own company. He enjoys stacking things like poker chips and playing with paint, playdough and water.
Andrew
Andrew
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But he is a happy child, for an autistic child he laughs a lot, you know, he smiles a lot. Do you know everybody comments on it. He is a really good looking boy, you know what I mean. So everybody says it is a pity he is autistic because you would take him home to your daughters you know, but he is a sort of a… as you now autism has degrees. Some kids are morose, some of them don’t want to be bothered you know. He is quite personable, you know, he is all right with company, he is all right with people around him you know and except for his little behavioural spats which nobody can, you can’t see them coming, they just happen. Like he could be smiling one minute and go for you the next so that is the difficult bit. But over all I would say for an autistic child he is fairly happy you know. So….
Mikes family has tried to go out and do normal family things but they have had to adapt...
Mikes family has tried to go out and do normal family things but they have had to adapt...
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Well basically because it is a complete, it is not like a child who was Down's or is in a wheelchair and he can’t walk because it is sort of easy to, well particularly a child in a wheelchair, you know they are going to need a wheelchair and they have got to be looked after that way, but when a child is autistic it is a completely different condition to those others because it is a social and a communication thing as well. It completely, it changes your life because you have got to adapt everything because for instance, my son looks normal, he is not in a wheelchair, so if I went to Asda with a child in a wheelchair people would look sympathetically, oh a child in a wheelchair. Or if they see a Down's child they can visibly tell there is something wrong with them. With an autistic child they look normal. It is just a behaviour thing.
They look perfectly normal and then they go in and they will throw all the beans, or they look like they are naughty children but they are not really. So it is things like that, you have got to adapt your life everywhere. You know. I think what it is for us as a family we used to go out a lot. We sort of stopped going out a lot. You feel like you don’t want to. …It is an embarrassment, you think, “Am I going to get embarrassed here?” But then you think, you have got to overcome that. That is what you have got to overcome, because the child has got to have a normal life. So we just tried to include him like in our normal family things, you know, but there would be certain things you couldn’t do, i.e. we couldn’t go to the pictures because he didn’t like the cinema. He doesn’t like the dark and so he would disrupt it totally so we would end up having to try and get someone to babysit him while we went to the pictures. So it is things like that. You know it does hurt, you have just got to adapt your life and then fit the child into it. That is what you have got to do you know, so that is what you have got to do, so that is what we found.
Mike thinks that having a child with autism is a good birth control method.
Mike thinks that having a child with autism is a good birth control method.
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He is good at sleeping. He would go to sleep at about 10 of a night. He goes to bed. He might not go to sleep for about half an hour. He sleeps on his own. He used to sleep with us. That was another problem; he wouldn’t sleep on his own so he slept in our bed. And if he slept in our bed I didn’t sleep in my own bed for about two years, you know, very good for the… what is it called? You wouldn’t have many kids if you had a lot of autistic kids, because birth control, it is a good birth control method. But no he sleeps on his own now. And he is in a nappy of a night, but he doesn’t wear them of a day. He is okay. That is actually the one word he says clearly, toilet. He can say it. It sounds like I have just said it, toilet. You know exactly and he goes himself and he is okay. He goes to the toilet. But he does have a nappy of a night which occasionally if he wets himself it wakes it him up and then… but he is good and he will go back to sleep and he will sleep until about half seven, eight o’clock. So he is not one of these kids who wakes up in the night, all night. He is pretty good. I can’t complain there.
Mike talks about what his son enjoys doing and how he prefers to play on his own.
Mike talks about what his son enjoys doing and how he prefers to play on his own.
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He just plays actually in his own company. He has got things like he stacks things. We bought him a load of poker chips, you know the poker chip, and they are different colours, poker chips, well he would stack them in a different. He doesn’t just stack them, he would stack all the black ones and all the red ones and all the blue ones. So he understands the difference in colours and he does that with anything. He separates the colours and he just plays with them. And he is very tactile, he likes things like play dough. And paint, he likes paint. He likes putting his hand in the paint, but sand, he loves sand, and he loves water.
Most autistic kids love water but he amuses himself. He doesn’t actually want you to play with him – ever, you know, so even, you can play with him a bit with a ball but he just gets bored, he throws it to you once or twice and then he walks away and just does his own thing. So where you are trying to play with him, we realise now, if he does want to, he will come to you which is very rare. So he plays on his own. He plays just… but he is happy and he just does that. And he eats a lot till we hide the food [laughs] but he does eat a lot. He can eat an adult portion of a meal, no problem.
Mike describes how you cant relax in your own home because his son is on the go all the time.
Mike describes how you cant relax in your own home because his son is on the go all the time.
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It doesn’t matter how much you love your children, if you are working all day, and you go in of a night. You know, I’ve helped my children, well I have got two daughters who have got degrees, so I have helped them you know. Whatever the subject they have done but there comes a stage where you have got to rest. You have got to switch off but with an autistic child they don’t switch off.
So that is where professionals don’t realise because they are not living with it you see they don’t live with the problem. Once that child comes through the door at 4 o’clock until they go to sleep at 10 o’clock they are on the go for six hours and so you are just, there is absolutely no, you can’t say, “Johnny go and do your homework. Johnny go and look at a video.” They don’t. They might not want to play with you, but they will be in the room and you can’t relax and you can’t do anything else because they are there, even to the extent where you can’t do like domestic chores. You couldn’t paint a door with someone like that, because they would just go and put their hand on it. Sometimes you can’t even cut the grass because they don’t like the sound of the lawnmower, which my son didn’t. My wife couldn’t use the hoover when he was in the house because he hated the hoover, so she had to cram everything into the day when he wasn’t there.
So that sort of tires you out. It is sort of completely, you can’t relax in your own home, that is the … So when we looked at it, we knew he was, and the aggressive behaviour that the sort of 24/7 structure, because where he is now there is a team of 12 people. So there is always somebody looking after him and they are only looking after him for six or seven hours. That is it and then they go home to another life. Well we had him 24/7 when he was at home from Friday to Monday, we had him all the time there was no respite. We had him all the time so not easy you know.
Mikes daughter used to go to a friends house to do her homework and couldnt bring friends home...
Mikes daughter used to go to a friends house to do her homework and couldnt bring friends home...
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Well it is like sort of trying to through your children in a sense, you just that when they were young, when he was younger, when he was born, he just did the normal things. You now you went out for the day to Blackpool and went to the pleasure beach, went down on the beach, went to the funfair, great you know. But as he got older and he started the behaviour it affected them in the sense that my eldest daughter used to go to a friend’s to do her homework. She wouldn’t do it at home. Now when she left, because she is 29, she is 15 years older than him. So when she had gone there were only three of us left, three children. His elder brother had been brilliant with him. Now he is 27 today. It is his birthday today. But I don’t know whether our [name], my son, has stayed with us deliberately to sort of help look after him.
Do you know, he is not really, he has never brought a girl to my house, ever. He has always had girlfriends but he has never brought one back to my house and I think it is things like that. Like my other daughter she didn’t like bringing her friends in case Andrew attacked them. So it is things like that. We had very few visitors - that is one of the major things, you know, people don’t come to your house because of him. Other kids you can go to their houses, like to Ciaran’s house. [Name] is not going to attack you. He is okay. But Andrew is different, he is just a different aspect of that autism. So that is the major thing I think. It does affect your family life that people don’t, you don’t bring them to your house you know and so, but my kids are great. Every one who knows them says they are credit to me you know. So they are fairly happy in that sense. Even though they have got… they love Andrew. I mean they go and visit him all the time you know, so it is not like, oh now we have got rid of him, we can have a …. They have not gone ballistic. They are still doing the same the same things they did, except he is not there now. There is a more relaxed atmosphere in the house. Well there is bound to be [laughs].
Mike describes his son's residential school.
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Mike describes his son's residential school.
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So we fought and fought for about... Andrew was at home for nearly twelve months but last October Ciaran and I know all the local schools but we were informed about a new one called [school] in [town], which is near [town] and we went up to visit it, and it is an absolutely … it is just designed for severely autistic kids; brand new school with no pupils. And Andrew starting going in October of last year. He now lives fifty two weeks residential up there. He lives in [village] which is three miles away from the school in a large four bedroomed detached house and he has a room and a living room of his own and he is coming on quite well. His behaviour is considerably improved to the extent that he has only had two outbursts since last October, when he used to have them on a daily basis, more than once a day.
Mikes son has made astounding progress at a residential school for children on the autism...
Mikes son has made astounding progress at a residential school for children on the autism...
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To be honest although he is severely autistic he does have an intelligence which everybody comments on including the school where he is now. He has only been there since October so that is six months and they are astounded, that is their own words at the progress he has made in six months, in so much that, to give you example, before that he would never sit for more than about two or three minutes, if that. You know, he would sit down and then he would be up and he would be making a noise and whatever. Well they have now got him sitting and he does independent work which is just him sitting at a work station. He has a classroom to himself, but he is sat for over two hours without moving, which is, that is absolutely…. He would never do that at home. Never, you know. So the methods the school are bringing into his life have really sort of brought him on.
Mikes support group organises a week in Pontins each year for over 100 people.
Mikes support group organises a week in Pontins each year for over 100 people.
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Within 15 months we became a charity which is virtually unheard of from a little support group. We actually got charitable status. But I think we just immersed ourselves in everything. Went to every meeting, you know, of anything, to see well what is there out there and we have evolved now and we are now a company limited by guarantee. We have changed our status you know and so we have got lots of project, we have got lots of … we have had lots of grants, money, to support the group because our group does a lot of, we do a lot of things. We are not just... Do you want to talk about that?
We have got about sixty families registered. They don’t always come at once. Which if you come tonight they won’t all be there and some families have more than one child with autism. Sometimes their parents come on their own. Our group is unique in that, inasmuch as it supports the whole family. It is a support group for the parents, for the siblings and for the special needs child and for the extended family, so grandma is involved, or auntie Jean they come along and they are part of our group. So, so and then we provide activities, like tonight, this is the Council’s own building and they let us have it. But we go out. We go out to swim. We pay for everything. The parents don’t pay for anything. It is all raised by donations and grants that we raise ourselves.
We go on a holiday for a weekend and there is 105 people coming. It is all paid for, coach, it is Pontins we go to in Lytham St Anne’s by Blackpool. It is all paid for. Coaches there, we hire a coach for the weekend, we have activities when we are there. We go to the zoo. You know we just go to lots of different things. It is all paid. We have about 12 outings a year and we pay for everything. We will go to Chester Zoo. Now it is about nine quid each to get into Chester Zoo and we take about 90 people, so it is a lot of money. They have got to provide their own lunch but certain things we go to we provide food, you know, we have Christmas parties. We provide all the food activities. Trampolining, swimming. We do everything, so… but it is a way.. the parents can come out and talk to each other about… in a sense it is like the gripes isn’t it. You can say well, “Its been terrible month. He has been terrible this week or he has been okay.”
But it also helps them because we can pass on, the networkings there you know, we can talk about, we have helped a lot of our families to get Disability Living Allowance, Carers Allowance, because they didn’t realise they could get it you know. You know we had one lady who worked in Asda, and we actually got her, she worked four nights a week but that took her over the threshold of getting Carers Allowance. So we said, “If you give up two nights a week. You will actually end up having more money because you will get the Carers Allowance and the DLA.” So she is actually not working four nights a week any more, she is only working two nights. So that is better for her and she is better off. So that is being a financial advisor that does help, you know, well it does, because you can tell about tax. That is what it is all about. And I didn’t get any money for that. It was all free.
Mike describes how you have to make out like hes the Tasmanian devil, you have to make out hes...
Mike describes how you have to make out like hes the Tasmanian devil, you have to make out hes...
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You talked about him growing older and puberty. Were you offered any support when he behaviour became challenging?
I suppose I better be totally honest and say that we did get a bit more support than what we had previously because it is a bit like, this will be the same with any Council or any authority in the country, when a child is okay they don’t need to do anything do you, they are okay, they are not a problem. The minute they become a problem then you have to then intervene and that is what happened with Andrew. He developed this challenging behaviour so the social worker came on the scene so there was like a little bit more respite offered you know. I mean I am only talking about like four hours a fortnight they would take him out and you had four hours to yourself, you know, to do something. Things like that.
But that is the main, I think that is the main bugbear for parents of autistic children is respite support because you do need, you have got to a have a rest from him, you know, I am not asking like, Andrew needs constant support. Other kids who are Asperger's can have a conversation with you, you will (probably?) see them afterwards, and probably interview them and they will chat to you and you think some people say what is wrong with him, but you know that there is something because their behaviour does display itself later on. But no, we got a bit more support but you have to fight for it, you know, you have to make out like he is the Tasmanian devil, the child, you have got make out he is awful and because otherwise you won’t anywhere. You won’t get the support you need, you know and that is just for a little three or four hours a week you know, so … yes. I have got to be honest we did get a more support but it is nothing to start putting on the front page of The Times, you know so….
Mike has changed in the way he interacts with health professionals and makes a plea for...
Mike has changed in the way he interacts with health professionals and makes a plea for...
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So when I first went in you could be intimidated and a lot of parents are intimidated because the professionals talk in professional language, lots of acronyms. I always stop people. I mean we have got an acronym for our Autistic Support group which is nice HAFS, HAFS rolls off the tongue, but that doesn’t mean nothing to anybody else who doesn’t know us. So I always stop people. I have learned that. If anybody uses an acronym I say, “What does that mean?” Because I understand it is to speed up the conversation, you can talk in acronyms if you are all professional. But if there is a parent there who doesn’t understand and is not used to all that kind of language, I say, “Can you speak in simple English, words of one or two syllables?” Because you have got to because I think they try, I think at first some of them do try and they do overawe you, over power you with all this language and so you end up going in. They talk about your son or daughter and you come out and you are just absolutely bemused. You don’t know what has gone on, you know.
That doesn’t ever happen to me now. It never happens I make sure. Both of us here, probably me and him, but they know not to try and kid us basically you know. We want the thing in simple.
So my dealings with professionals, at first I found that they did sort of talk down to me a bit you know, we are the professionals. I always open my conversation with people like yourself who have letters after their name, you know, you know, I have got them, but it doesn’t make any … I always walk in and say, “We are in this meeting now. We are talking about my son who is autistic and I am the professional in this room, not you. I am the professional regarding my son.” And that usually takes the wind out of their sails, which I think … But not everyone is like me. No some people are quite shy and reticent and wouldn’t feel comfortable to be able to stand up for themselves.
So that is why they have advocates so … me and him are the advocates for all our parents. We always go to every meeting with every professional body, with their permission so that they don’t get blinded by science. They always sort of seem to, once either of us walk into the room the professionals have to take on a different approach. We know they do, because we know how they talk to them when we are not there, when we have not been there and how they talk when we are there; completely different approach. So for professionals and I think if this is going out to professionals please talk to parents in simple English. Try and explain to them simply what the problem is and what you want to try and do to resolve it and try and not use big language because they don’t understand it. You know they are professionals like you. It is not their forte you know. So that is my plea to professionals.
Mike describes why he thinks the MMR injection caused his sons autism.
Mike describes why he thinks the MMR injection caused his sons autism.
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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.