A-Z

Daniel - Interview 7

Brief Outline: Daniel's son, Jonathan, was diagnosed with autism in association with hyperlexia when he was aged 4. Daniel has home-schooled his son for the past four years.
Background: Daniel, a full time carer is separated from his wife and lives with his son, aged 13. Ethnic background/ethnicity: White British

More about me...

Daniel is separated from his wife and lives with his son, Jonathan, who is 13 years old.  Jonathan was diagnosed with autism in association with hyperlexia when he was four years old.  Both parents felt that there was something different about their son from the moment he was born.  Jonathan had a different kind of awareness about him and very early demonstrated a remarkable reading ability.

Their concerns were ignored until Jonathan started school where his unusual behaviour and advanced intelligence in some areas was noticed. Their GP sent Jonathan to see one of the top experts on childhood development and they received the diagnosis. 

Autism in association with hyperlexia is a rare condition and one that is very difficult to people to understand because the advanced speech masks the autistic traits.  This made finding an appropriate school difficult and the family moved to a different area once they found a school that could offer Jonathan the appropriate support. 

The statementing process was also difficult because of the lack of understanding about the condition and the school failed to meet Jonathan’s needs.  Within four years, Jonathon’s behaviour had deteriorated markedly and he was distressed and unhappy.  The strain on the family led to Daniel and his wife separating.  Daniel removed Jonathan from school and has homeschooled him for the past four years.

Daniel has devised a flexible set of therapies to help Jonathan overcome his experience of school and regain his self esteem.  This includes teaching some of the national curriculum but also a lot of physical exercise, activities to help him develop his independence and so on.

Jonathan now attends a karate class, sings in a local choir, has taken part in a BBC spelling competition and been involved in amateur dramatic.  These activities have been successful although there has been a lot of work rehearsing the situations in advance to enable Jonathan to participate. 

Daniel feels strongly that the education system fails children like Jonathan because of its inflexibility and lack of engagement with difference.  For him, one to one support with the child is crucial. 

 

Jonathan

SHOW TEXT VERSION
PRINT TRANSCRIPT
You asked what he was like. Just wonderful [laughs]. You know he has got such wonderful little ways about him. You know he is absolutely gorgeous. Living with Jonathan is an absolute delight. That is, an unbelievable experience I would never want to miss, ever. You know if I had to go through life without an autistic son, that would be really hard to choose, because he is wonderful. He is a superb human being. The worry is that society will not accept him as he is and he will not have a part in society. That is the worry. That is the only reason that I don’t want him to be exactly as he is. But he is a superb human being and he is wonderful to be with.
 
The bit that is difficult for us as a family, the bit that makes it a strain, such an incredible strain, is the fact that he, and therefore he and I, have to face society with those differences that society just doesn’t understand. That makes it hard. But being the way he is as such is absolutely wonderful, incredible little thing he is [laughs].
 

Daniel thinks the education system simply lower the age level when teaching children with autism.

Daniel thinks the education system simply lower the age level when teaching children with autism.

SHOW TEXT VERSION
PRINT TRANSCRIPT
In fact that is one of the great complaints I have about the way autism is dealt with and any mental condition like that, it must be the only kind of condition where the cure is national curriculum. The intended cure is the national curriculum. There is no treatment. There is nothing any one does. There is no. Sorry I will rephrase that. There is something that can be done. There is lots that can be done but there is nothing that the state is prepared to do, other than administer the national curricular. They simply lower the age. There is nothing else they do. If you are ten years old and you are autistic. Well we will teach you the national curriculum but we will treat you like a 3 year old. And they do the little tick boxes. Done French, yes. Done English, yes. Done history, yes. Done anything for the child. No. But that isn’t in the tick box, so it doesn’t matter and it is completely, it is completely ridiculous. A total waste of time, money, and everything and it is nothing to do with money. It is to do with caring about the children.
 
You need a certain amount of money to run a school I suppose but people with autism need, they need training, therapy, help in understanding their condition, strategies for coping. When they go to school I don’t think they even tell the children they’ve got a condition. They don’t say, “Look you have got autism. This is what it means. This is what we need to do.” They don’t even tell them that. They just say, “You have got to colour that in.” And if your disability gives you a spatial awareness problem that means you can’t colour things in, then, “Oh he is refusing to colour it in. Right I will pin him to the floor. We have got a refuser.” That is the way they deal with. But they don’t say to the child. “You have got autism. Part of your particular form of autism is a spatial awareness problem. Let’s see if we can do some special training to help develop this.” They don’t do that. It is just treat them like normal child though at lower level. And if they can’t do it you punish them. That is not the way it should be.
 

Daniel says there is no such condition as ‘special needs’ and teaching children with autism need...

Daniel says there is no such condition as ‘special needs’ and teaching children with autism need...

SHOW TEXT VERSION
PRINT TRANSCRIPT
Teachers don’t know – special needs teachers. That is the other thing. Special needs teachers, okay. “I can look after your son, I am special needs trained.” And you say to them, “Excuse me there is no such condition. There is no such condition. No one was ever diagnosed as having special needs. You cannot be special needs trained and be able to deal with hyperlexia. Are you hyperlexia trained?” “What is that? I have never heard of it. But I am special needs trained so I will understand every thing.” They don’t. There isn’t a condition you think forget this idea that special needs was a condition.
 
In fact that phrase was invented, I mentioned early on, Mary Warnock she invented the phrase ‘special needs’ and she said it wasn’t meant to mean that. It was meant to mean that everyone had individual needs, not that there was a group of people that all had the same condition that was called ‘special needs’ and we will have people that were trained to deal with that condition. If they could rid of all this special needs and start listening to the individuals they could do it a lot more cheaply.
 
I did a radio interview recently and they asked me that question about, something about money, and I said, “Well the effect that I have had on Jonathan is absolutely unbelievable. He has made so much progress. I have not heard of any other autistic person making as much progress as Jonathan has. I am not saying there aren’t any. I have not heard of any because I have dedicated my life for the last four years to working on him and thinking about what autistic people need, and I have made immense progress” and I told them on the radio, I said, “We have done all this in poverty.” And I think the question was, “Wouldn’t it be incredibly expensive, or prohibitively expensive to meet the needs of individual children?” I said, “I have done it in poverty. It is about getting it right for the child. It is not about how much money you spend.” And I think that is a crucial issue, very crucial.
 

Daniel describes how he felt when Jonathan was diagnosed.

Daniel describes how he felt when Jonathan was diagnosed.

SHOW TEXT VERSION
PRINT TRANSCRIPT
And can you remember how you felt at that point?
 
Oh. It is not, when you get the diagnosis it is not such a shock, because you know that there is something wrong in a big way. You know what your son is like. You wouldn’t have been there if you didn’t know what he was like. In fact since his birth we have spent arguing with people there is something different about our son so to be told there is something different on the one hand it is actually a relief you know at last somebody has said, “Yes you have not been making this up just because you are proud. There is something different about your son.” So it was a great relief. And all the people that say, “Oh you are just proud.” You can then say, you know, “Told you so,” that sort of thing. So it is a relief.
 
But on the other hand it also comes as a shock, a complete shock. It is like you have gone from fighting to get people to believe to suddenly having to face up to the reality. And I think it is like a bereavement, it is just like a bereavement. It hurts. You know I think I was crying every day, whenever I was in my car, never in front of people, I was on my own surrounded by metal. I just cracked up every day for must have been near, or nearly a year and I still break down in tears every now and then if I stop to think about the reality of my son’s life and what may or may not lie ahead for him,  as well as the hell that it has caused our lives. You know, that alone is enough, but that is nothing compared to what my son’s life might be like. And I still, when I get a moment alone, which is not very often, because I am with my son all the time, occasionally he goes with his mum somewhere and when she takes him off I just crack up quite often. You know just cry. I know it sounds stupid but the stress and strain you are under is so immense and you are fighting society as well. I mean that doesn’t help.
 

Daniel rehearses situations with Jonathan to enable him to take part in activities.

Text only
Read below

Daniel rehearses situations with Jonathan to enable him to take part in activities.

HIDE TEXT
PRINT TRANSCRIPT
But they are all rehearsed situations, like the choir and the karate. They are situations that are rehearsed which is why it is easy for him to be part of it and to start with I had to be there, to see what’s going on, and then if something happens in the choir or the karate that takes maybe one minute to happen, all the other kids there, it goes past them and they have understood it, I have to come home and work for hours on that one minute to get him to understand it. So we do hours and hours of work at home for every little bit of moment that he spends in the choir or the karate or wherever else he may be and then he goes back and he has achieved a little bit and eventually he has got a repertoire of understanding through me teaching him at home which can only be achieved if I observe the classes, that is another issue, people don’t like you observing. “Sorry no parents allowed.” And you have to explain that this is a bit different, this situation. And they don’t understand it, but in the places where I have been able to observe I have been able to help so they are rehearsed situations and it gets to the point where I can then leave him.
 
It takes a long, long, long time like a couple of years or so of rehearsing and I can then leave him and he knows what to do and he can adapt to the small changes that are happening and feels comfortable and so on and he knows all the routines and stuff and that is fine then. But the ultimate goal is to get him into situations where I haven’t trained him for prior. If he meets a situation he hasn’t been trained for, he just can’t deal with it and of course life is full of them.
 

Daniel discusses how Jonathan will be included in activities but it is difficult for people to...

Daniel discusses how Jonathan will be included in activities but it is difficult for people to...

SHOW TEXT VERSION
PRINT TRANSCRIPT
It is not, like you can imagine to some extent what it is like to be blind, you can shut your eyes. I know it is not the same, it’s like rich people trying to imagine what it is like to be poor by not buying a new suit that week [laughs]. They know they can still come back to spending their money the next week. And it doesn’t really tell them what it is like to be poor, but it gives them a little bit of an idea. In the same way that shutting your eyes gives you a little bit of an idea what it is like to be blind. It is not, because you can always open them, you know as soon as you have to, you can open them if you need to and you have got that choice, but you can’t even do that with autism. No one can imagine what it is like in my view. Maybe somebody can I don’t know but I live with it all the time and I can’t imagine what it is like. All I can do is try to analyse my son and how his mind is working as best I can and try to see how I can match up his mind with the way his mind has to be if he is to be part of society and try to somehow get the two to meet because I am also trying to engineer society to some extent through campaigning and stuff, but I am never going to get anywhere with that. It might have a small influence if lots of people like me do it, I suppose over the years that is how things change.
 
But no one can imagine what it is like. So they welcome him but they have got no idea and they treat him like he is normal and you know, they even say to me “Don’t worry. We won’t treat him any different from any different from anyone else.” And they mean well by that and I think, no actually you have got to, you have got to. For example if you are talking to a group of children, you don’t just talk to a group of children, you have to mention the name of the one with autism or he doesn’t realise that he is part of the group. It’s just little things like that that you need to do that are different. You know, “Now kids and whatever your name is.” And they went ‘oh me as well’ and they realise they are part of it. So you have to treat them differently. It is only a small way, but people mean well but he is still not accepted as an autistic child among them. He is accepted as a child whose autism they will ignore among them.
 

Daniel describes how people constantly tell you how to look after your child.

Daniel describes how people constantly tell you how to look after your child.

SHOW TEXT VERSION
PRINT TRANSCRIPT
And one side of this I haven’t mentioned, I have only mentioned the diagnosis and the school and the authorities and keeping him at home, but the other side of it is people generally. Because you have got a mix everywhere you go, everything your son does, everything you do with him, it has got to be different. It can never be the same as anybody else with their child. It has got to be different and because it is a totally invisible condition, and because in the case of our son, he can actually speak perfectly well. He speaks oddly but no one thinks of that in any way other that personality but it is not, it is disability. It’s his brain, it’s working in a different way. He speaks from searching his memory rather than from generating speech. You know, live, it is all wheels going round and piecing together what he has heard other people saying and he speaks like that and it is very robotic.
 
But he does speak and nobody can see the problem. They can see that he is a bit odd, but what they also see and I have seen this from so many other parents with autistic children, they also see that you are treating your child differently and they put two and two together. Of course he is odd, that parent is treating him differently. So you are constantly getting people telling you how to look after your child, telling you, you are doing it wrong. You know like it was when he was first born, you are constantly getting it. And you can say, “Well actually he is severely handicapped.” “Oh yes, where is his wheelchair?” And they just don’t believe it because there is no wheelchair, no callipers, no white stick, no dark glasses or ear piece, there is no anything. He is not deformed in any way. He looks, in fact the only comment we get is that he is incredibly handsome and very healthy and he speaks but you have to treat him differently.
 

Daniel feels has to constantly tell people about autism because they think he is bringing his son...

Daniel feels has to constantly tell people about autism because they think he is bringing his son...

SHOW TEXT VERSION
PRINT TRANSCRIPT
Or the fact that he can’t socialise, they think it is because you haven’t let him mix with a large group of children. “Let him go and play football with the kids.” He can’t play football, he will just get beaten up and bullied. He won’t be able to play football with kids in the park. He can’t do that. But people think that he hasn’t got a handicap, all he has got is a parent that doesn’t know how to bring him up. And it is the old MSBP Munchausen’s Syndrome by proxy which has now been discredited. But the authorities still use it, they now call it emotional abuse but they mean Munchausen’s Syndrome by proxy but they are not allowed to use that word any more because it doesn’t exist apparently. But inadvertently and without knowing that they’re doing it at all, almost everyone you meet is accusing you of MSBP, it doesn’t matter what you do. “He is only like that because you are doing this wrong.” You know, and this is something I hear that is common among everyone I have spoken to anyway, the parents with autistic children, that you have to confront that all the time. You are constantly telling people, “Actually my son is autistic.” 
 
And then you have then got the next problem. They have heard the word, they don’t know what it means. So then you have to explain what autism is. It is such an incredibly complex condition that even the so called experts haven’t got the first idea what it really means to be autistic, or to have autism. They can list criteria for diagnosis but they haven’t got a clue what it is to have it, or to live with it.
 

Jonathan has made substantial progress since Daniel started to home-school him.

Jonathan has made substantial progress since Daniel started to home-school him.

SHOW TEXT VERSION
PRINT TRANSCRIPT
He is now doing his third karate belt and he sings in a local choir. They do lots of concerts and he has got music exams from playing piano and recorder and theory as well. And he has won lots of medals. His exams are all with distinction and he has done lots of music festivals and he has won medals at those. And he has even performed in a play with a local theatre group you know on stage in the theatre with a paying audience. You know, he didn’t have a lead role, he was just part of the sort of background thing, but he managed to do that, and this is a child… he plays badminton now, plays badminton and you couldn’t even throw a ball at him before. This is all because I have done training and therapy not just national curriculum.
 
And his abilities are coming out. I am working on his abilities as well as his disabilities, working on both. In the school they ignore both disabilities and abilities. They ignore the lot. They just concentrate on tick boxes for national curriculum. But he has achieved such a lot, such an amazing amount, so I am hoping that one day he may be able to have some degree of independence. He still hasn’t got any independence. Although he has achieved a lot, he is still incredibly severely handicapped. He couldn’t go out on his own for example. He couldn’t look after himself at all.
Previous Page
Next Page