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Ciaran - Interview 26

Age at interview: 53
Brief Outline: Ciaran's son was diagnosed with autism eight years ago and also has epilepsy and dyspraxia. He is currently doing a course at a college of further education but Ciaran worries about what he will do next.
Background: Ciaran, a development manager, and his wife have a son aged 21 and daughter aged 18. Ethnic background/nationality: White Irish.

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Ciaran and his wife have two children; a son aged 21 and daughter aged 18.  Their son's autism was diagnosed at the age of 13 after the couple had many years of taking him for tests and feeling they were inadequate or overly anxious parents.  Neither Ciaran nor his wife knew about autism then and set about learning about it.  They wanted to get their son into an autism specific school and succeeded after going through an educational tribunal. 

Their son stayed at the school until he was 19 and is now in a special college for young people with autism and learning difficulties.  Ciaran is worried about what will happen after college in a year or so because he will not be ready for employment then.

Ciaran feels strongly that autism should be recognised as a stand alone condition with specialist services put in place.  He set up a support group with his wife to help other parents get through the barriers they may face.  Ciaran is now the full time Development Manager for the support group.

Their son, who also has epilepsy and dyspraxia, is obsessed with football.  He doesn’t like having to make a decision and is happy in his own company.

 

Ciaran describes how, for his son, everything is black or white.

Ciaran describes how, for his son, everything is black or white.

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That is the thing we don’t know at the moment, but it accounts for things like everything is taken literally. It is either black or it is white. They don’t understand things like sarcasm or reading between the lines, you know, the things that you develop, social skills or communication skills, without knowing you are developing them. Autistic children can’t do that. The brain doesn’t allow them to do that. So that is why they are always asking questions like, “Are you being serious?” You know, they don’t understand jokes or they pretend to, to be socially accepted, but don’t really understand. They read things, great reading skills, but don’t really understand what, no cognitive awareness of what they are actually reading and some of them have tremendous, highly developed skills in certain areas, like photographic memory, and they read, and like my son, anything he reads on football is locked in there for ever and he will recall it to minute detail. But if you send him upstairs to pick something up and he has forgotten by the time he gets upstairs what you sent him for. Short term memory is a big problem, but things of interest he has an enormous capacity for memory. But like I say basic living skills, he has very few.
 

Ciaran’s son “eats, drinks and sleeps football”.

Ciaran’s son “eats, drinks and sleeps football”.

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What does your son like, what sort of things does he like?
 
Well like a lot of autistic children especially Asperger's he has his rituals he has to go through and he has his obsessions and his big obsession is football. Luckily it is an acceptable one. Some children they have very odd obsessions which are not socially acceptable at all. It isolates themselves and their families even further. As I say luckily his is football. He just eats, drinks, sleeps football, nothing, no other interest in his life. He doesn’t read anything other football, he doesn’t watch anything on telly other than football, he doesn’t go anywhere other than football related. He doesn’t talk about anything other than football. It can become a bit a bit taxing sometimes but at least he does speak and converse but it is always on that subject.
 
So that is his main interest really, his only interest in life really. And when he is not doing that he is on his Play station and again it is football games on the Play station.
 
What things doesn’t he like?
 
He doesn’t like being put in a position where he has to make a decision or where he is being challenged or he has been asked to do something he is not may be totally happy with. That is when you get the anxiety and the frustration which can lead to the behavioural problems. He is happy in his own company. He has his own room which he retreats to on a regular basis and asks you to leave it if he doesn’t want you to be there. He is generally very happy as an individual, but he doesn’t really do anything and this is the problem how do we stretch him? How do we give him other interests in life that he can actually cope and manage with?
 

Ciaran thinks that budget restrictions on services can be an abuse of human rights.

Ciaran thinks that budget restrictions on services can be an abuse of human rights.

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And that is the biggest problem we struggle with as trying to persuade professionals who hold the purse strings what the real problems actually are and particularly when you are arguing over school placements, trying to get your child into an autistic specific education environment. These people who actually make the decisions don’t really understand the need for it, therefore, you know, will quite often just say no because it costs too much, and the fact is the earlier you put expert input into these children, the further you can pull them away from their autism, the more they will reach their full potential. They will be always be autistic but there is no reason why they should live in isolation without being stretched to their full potential and to me it is a human right to be able to do that. It is abuse of human rights not to deliver those kind of services, particularly when it is just based on budget restriction.
 
Why do you think there is such a lack of general awareness. Even amongst health professionals also the general public about autism?
 
Well when you think about it is only in recent times that it has actually been diagnosable and it is only really the last twenty years. I mean Asperger's syndrome was only really identified in the nineties, early nineties. Autism generally was just classed as a mental health problem or a learning disabilities problem and we still seem to have not got any further. On that issue, in terms of if you look at your local authorities the team that are responsible for those bodies are the learning disability team or the mental health team. There are no autism teams. That is the first thing we need to get round to. Build up our level of expertise within the professional bodies by seeing it classified as standard lone condition. 
 
You know, I will give an analogy, when you present yourself at A & E at hospital with say a cardiac problem you don’t expect to be seen by the ears, nose and throat specialist just because he happens to be on duty. Well that is what is happening now. We are having generalists providing services who are not experts in the field. So that is what we need to do. If there is a shortage of plumbers we try and develop more plumbing skills through the education system and NVQ system, don’t we? If there is a shortage of electricians we do the same there. But we know there is a shortage of autism specialisation but we don’t seem to be doing anything about it.
 

Ciaran thinks you need hands on experience to understand the issues.

Ciaran thinks you need hands on experience to understand the issues.

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Well I mean you can do… there is vast amounts of information on the web now in terms of just doing Google searches on autism, autism research, fast progress, key words. The National Autistic Society website is quite good and it is just developing all the time. So if anyone has got internet access there are no barriers to information on autism. But the problem you will have as a budding professional or a student is, unless you live with the condition 24/7 you don’t really understand the issues. So you can do as much academic research as you like, but unless you have actually had hands on you don’t really understand the issues.
 

Ciaran thinks autism is to do with pathways in the brain which are not communicating.

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Ciaran thinks autism is to do with pathways in the brain which are not communicating.

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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.
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