Parents of children on the Autism Spectrum
The children
Alex and David
Alex and David
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They are wonderful. They are brilliant. They are just my boys. I mean Alex and David function so very well that people generally don’t know that they have got anything... After about two or three visits they would see that there was something but they couldn’t quite work out what it is. I mean we have visual prompts around the house. They have got a list that I keep on their computer, so before they are allowed to sit at their computer, they have got to go through their job list. And David tells everyone about all these terrible jobs that he has, you know, and they say, oh when he went to CFCS. “I have to do my jobs.” And I am sure they were thinking, she’s got them working as slaves, you know. And they would say, “Well what are the jobs David?” “I have to wash my face and my teeth.” And all these things, so they know what they have to do and there’s all these visual prompts that they function at a very high level. David the more stimulated, he is a bit of a whirling dervish really.
So you have to sort of pull him right back down. But with homeopathic remedies and things, he is okay and he is in a very controlled environment. I mean as soon as he has an audience, David, he becomes a bit of an actor. So you would see it with David more than you would see it with Alex, Alex is just a cool dude and very laid back and he is okay.
Josh
Josh
Sex: Male
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Helen' [pause] er huh. I don’t know. I kind of just, he is Josh.
Jason' Hm.
Helen' He is who he is, you know. You take him as you find him. If you don’t like it get out of his life.
Jason' But he’s….
Helen' But he’s highly intelligent so don’t treat him like a fool. He will hold a conversation with you if he likes you and so long as it is something he wants to talk about
Jason' It is very tricky to…
Helen' Yes that one is isn’t it. He’s… he is funny, he can be really funny.
Jason' Hm.
Helen' And he has quite an ironic sense of humour. Truly hasn’t he? He has got quite a good sense of humour.
Jason' Yes.
Helen' But in the next breath he can’t cope with what I would call across the road humour. You know most of them sit and have a snigger at… but that is completely over his head. He has quite an evil sense of humour. Probably the opposite end of the humour to my, not particularly evil, but he’s… no I don’t know.
Jason' Hm.
Helen' I don’t know. We have struggled haven’t we to try and discuss this with the family.
Jason' He is energetic. Verbose. Quite quiet really in his own…
Helen' When?
Jason' Well he is. He is noisy but he is very, he is not… it is not the same sort of noise as…
Helen' As a normal child.
Jason' Any normal child his age.
Helen' His is incessant chatter.
Jason' And it could be about anything. Anything! He will reel off out of the middle of nowhere. He will just reel off an advert that he has seen on the telly, but it could be weeks ago and you sort of thing, well where did that come from?
Helen' We get this one at the moment. Adverts are his forte at the moment. If something goes wrong in the kitchen, “Oh well, you need blah blah blah blah blah.” My tin opener was playing up the other day and there one that you put on top and it goes round on its own or something. I have seen the advert once or twice and he just reels it verbatim. And he is just like where did that come from…? I don’t know… Josh… that would be a tricky one. I don’t know. You kind of accept him as he is, you know, he is our son but …
Jason' He goes off in all directions.
Helen' Hm. Yes, he is…. No, I couldn’t describe him. He is too complex to describe. In any case I throw him in room with people and let him get on with it [laughs].
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….
Jonathan
Jonathan
Sex: Male
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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].
Arthur
Arthur
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Okay. Well Arthur is 11 now and he is very full on [laughs]. He wants to be busy all the time. He is not a child who would just sit and read a book or would just you know. He kind of… it is like his mind is working overtime all the time but he is very self involved. My sister says he is selfish, very ego, egocentric as they say in the autistic spectrum books. Although when you point out to him that you know, “Oh you know what you have said, you know, that is horrible.” He will go, “Oh I am sorry, I am sorry.” And you know, “I didn’t mean it. I am just joking.” You know. He kind of, he has a… oh how can I explain it. Yes, he wants to be more like, he is quite funny, like on the autism, National Autistic Society thing, their newsletter. There was another one in this last one, about a research study about the mechanisms of personal memory of children with high functioning autism or Asperger's syndrome. So I said to him, I said, “Oh Arthur there is study about…” and I read it to him. And he goes, “My autism is not high functioning. I have control over it,” [laughs] because he didn’t quite get it that you know, high functioning autism is a set thing to Asperger's. You know, it was kind of like that must mean that autism has got control of you if its high functioning, you know.
He likes to… Arthur likes to think, he is very, I don’t know how do you explain it. He is not arrogant but he thinks he is very capable and he knows a lot, like he is very knowledgeable and that because I think I was always worried about his self esteem because I think often, you see, I think that is one of the things, with Tourette’s syndrome and the tics and twitches, if they have got it on their own without the Asperger's syndrome I think they can become very socially aware and conscious of their movements and their habits and everything, but having Asperger's syndrome as well, it kind of, in they don’t have that awareness which can be a blessing in a way, because as I say a lot of children with just Tourette’s, people with Tourette’s syndrome can be very prone to depression because they are so self conscious.
Well with Arthur having the Asperger's syndrome as well, which I didn’t know about, but I have always tried to kind of boost his self esteem because it is something that I never wanted, I was always worried that he would have a complex about his difficulties, but it is quite hard getting that balance right, because I think it is kind of gone the other way now [laughs]. And I think it’s a good thing to a degree, as long as I hope this is never a point, where it is like, he discovers you know, that he thinks otherwise, but he is like he wants a girlfriend, you know, he probably wouldn’t want me to tell you this [laughs]. So I said to him, “Well are there any girls at your school?” You know it is kind of like an 11 year old boy normally wouldn’t go to their mum and say, “Oh mum, I want a girlfriend.” You know, but with Asperger’s as it is they kind of do tell you everything [laughs]. He says he wants a girlfriend. So I said to him, “Oh are there any girls at your school?” “No there is only two girls. Don’t like them.”
Nathan
Nathan
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Alison' He is healthy. He is well. He is the most loving little kid that you could possibly want.
Tony' When he wants to be yes. He can be a pain in the neck.
Alison' He was then but he is a lot, lot better now.
Tony' When he kicks you in the shins and calls you horrible names then yes, he is great isn’t he. Yes. Terrific [laughs].
Alison' He has his moments yes [laughs].
Tony' Yes, about three a day normally.
Alison' Yes, but he is going through this phase at the moment with me about how much he loves me. Because every night I put him to bed and I then say “Goodnight. God Bless. Love you.” And as I am walking off he will go, “Love you more.” And I go, “No, you don’t. I love you morer.” “No I love you morer. I love you two and a half million.” And I say, “Well I love you two point seven six one four million.” “No but I love you twenty three two point seven six million then.” And it just goes on and on and on. And oh it is his big thing at the minute about how much he loves me all the time which is quite nice really. After all the time he used to tell me he hated me. Now all of a sudden he loves me you know.
Tony' He still tells you he hates you when he is told to do something he doesn’t want to do. When he can’t have a chocolate biscuit because it’s five minutes before dinner.
Alison' He has got this thing, because they do a merit system at school. They are doing merits for doing good things at school so if I do anything wrong or if Tony does anything wrong, or Fiona or whatever, and he well wrong in his eyes that he doesn’t agree with, that because we have said no he can’t have something, then right that is it you are losing a merit. That is it we have lost a merit haven’t we? We are in trouble.
Tony' Yes. Try not to be disappointed. We get on with life.
Alison' Oh well never mind. I will have to lose my merit. Never mind. You know. Bless him.
Tony' Yes. Bless him.
Joseph and Adam
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Joseph and Adam
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For someone who hasn’t met Joseph I would say he is, he is very, I suppose for want of a better phrase, he is in your face, he is big, he is boisterous, he is loud, he is noisy, you know when he is about. He is like a bit of a whirlwind. He will whiz into a room sort of ‘rah rah rah rah rah rah’ and then whiz out and then five seconds later he will come back. He is very active for a rather strapping lad. But also he has got the most fantastic sense of humour as well and he really is just one of the funniest little boys you could ever imagine.
He has got perfect comic timing. He is also quite an intense little character as well. He is very deep. You can tell he is really deep in thought and he does tick a lot of things over in his head before he comes out and says something but then at the same time what he says can be so funny but he is trying to make you laugh and he is, I don’t know, he just loves interaction. He loves his drawings and he loves showing you what he is drawing because that helps. He is sort of thinking well look I am obviously going to have to draw it because she doesn’t understand what I am saying do you. And then once he has drawn it he is happy to sit down with you and talk about it and things. But he is a really happy little boy.
He is also very emotional. We do have some behavioural issues he can be quite destructive as well when he really wants to lose his temper. I mean we have been through, well three beds during the summer holidays that were destroyed by him bouncing around on them. We have had the bathroom flooded a couple of times and had to have a new ceiling put up in the kitchen. Just generally he will charge around and he will rip up things. Like if we have we have got unopened letters and things like that, he will rip them, he will rip books up.
Oh Adam is. He is like a big flitty fireball that just goes around. He really, really loves people being around doesn’t like wearing clothes in the house at all. It is all I can do, most of the time he just wears swimming trunks which he likes. And he is very much looking forward to … if Joseph has got sort of a tee shirt and pants on then Adam will wear his swimming trunks. If Joseph for a second takes his pants off then Adam instantly does as well. He copies Joseph everything even to the point of lifting Joseph’s tee shirt up to see if he has got anything on underneath. He is really quite bubbly.
He is almost like Tigger from Winnie the Pooh. He doesn’t ever stop moving. He is always bouncing up and down. He is quite noisy, although he doesn’t speak at all. But he has got his very own way of communicating. If he wants a drink he will just go and get a cup, and it is milk or something from fridge or if he wants maybe one of his rice krispie bars or something he will come and bring me the keys to the cupboard. So I know exactly what he wants.
Other people are getting the hang of what he wants as well. So he is sort of getting a bit more confident. And he has just started doing his ‘dee dee dee’ talk which is great. He is totally the opposite to Joseph in a way. They are very, very different characters. Adam is very fussy with his food, whereas Joseph will eat anything from, I don’t know little car tyres to raw chicken breast and things like that. Adam is literally chicken nuggets and chips for dinner. May be some peas and ketchup and that is it. He eats chicken nuggets for breakfast but he will eat bread and butter and a packet of crisps for lunch and that is his diet basically. He lives on soya milk and very rarely drinks anything else. He will drink squash if he has really got to, but it has got to be orange. His diet is very, very limited. But he actually seems to
Louis and Georgia
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Louis and Georgia
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Anything. Things off the telly, films, anything. If he sees a DVD even if it is one of mine, he wants it on [laughs]. But he is starting now to show an interest in his … in our computer. He likes to go on the children’s websites and play on the games and he just… for a long time we were having to play the game because his fine motor skills weren’t too great with the mouse but now he has started to make the connection that that will move most things on the screen. So he is enjoying that.
Georgia would probably want to be in the garden. Naked [laughs]. She is a real nature girl. She is just…She likes her toys. A lot of the toys around here are hers. She likes sort of little figures and animals, especially animals. And she will do the autistic thing of lining them all up and having a little flap at them. But her favourite thing is, she would love a dog. Her favourite thing when we go anywhere and there is a dog, she just goes mental. She just loves animals. We went to a birthday party recently and there was loads of kids there and she just completely ignored all the children and was running round the garden with the dog, you know, and no fear at all. She is quite, in their face, you know it would have to be a real soft dog. But she loves going to the park, you know outside.
They both really love swimming. We take them to the local pool once a week and they love that. They both love going to like Kentucky Fried Chicken. McDonalds. And they can see them for like miles along the motor way. They can see one from a ten mile distance, see the M and that is. We have to find one. So … but yes. I am trying to think of anything else really.
Georgia plays. Georgia plays quite well with things, little intricate things. But she plays alone. She doesn’t play with other children. If I have got other people here she shows no interest in them at all really. Whereas Louis if he had a little friend here would follow them round and he gets quite upset when they have to leave. So he is more a people, he is more social whereas Georgia is more you know more withdrawn, but you know still has interests you know [laughs].
Charlie
Charlie
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How would you describe Charlie to me?
Oh he is very funny. He has got an unbelievable sense of humour. He really is quite funny. He likes trying to make himself laugh. He likes to make other people laugh. If he can make you laugh then you know he has scored one. He is very much into his Sponge Bob. He is very much into planes right now, it used to be cars, now it is planes. So very animated and because he is very flexible because of the … as well, he is incredibly animated. He will dance. He is constantly on the move. I mean even if he is sitting there tired watching TV he is still moving something. He is very much into his numbers.
He loves his big brother to the point where we are trying to separate them. I mean for years they have been sleeping in a double bed. I have got bunk beds. I have got bunk beds. The bottom bed is slightly larger. At one point Charlie got into the bottom with Jack and from that point it has never gone. They are still together. Now Jack is like sort of pressed against the wall at eight years old going okay I have had enough of my brother. And Charlie, we’ll get him into the top and then in the morning some how he is down the bottom again. So we are working on it. We are getting there.
But I mean he adores his big brother. He adores his father. He is very much a boy. And he is going through things right now where he likes fairy wands and he likes crowns but also tiara type things. But they are girl things now mummy so you know, I am not really supposed to like them. Well as far as I am concerned honey you can like what want. You know. This is a child that was painting my toe nails when he was four years old. You know, and painting his arms, as far as I am concerned you’re a kid, what ever you want to do. If you want… so he has been buying me fairy wands now which I have to hold me my room, but you know let me borrow every once in a while. He is funny because that is when the Asperger's I think comes in, where he thinks in very black and white. I am a boy and I have to be like this and I am like no you don’t. You can be anything you want. You know.
Peter
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Peter
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Vikki' I think he is also very honest. He is almost like a Jack Dee sense of humour and I think my parents have got a similar sense of humour. So he was sitting in Grandad’s chair. So you can imagine you have got Granny’s chair and Grandad’s chair. And he is sat down there and Grandad came in and said, “Peter what are you doing sitting on my chair.” And he looked and, “Eating a banana. What do you think I am doing?” So it is that, we see it as humour but in fact it is well come on you know I am eating a banana, I am sitting in your chair, so why on earth are you asking me this. It is embarrassing humour isn’t it?
Nick' He comes up with the most amazing puns doesn’t he as well?
Vikki' Oh yes. He has learnt how to tell puns.
Nick' Yes. Some of them are quite funny. He is very loving. He, what else? He will be sitting there and he will be sitting there eating some sweets or something and he is quite happy and doesn’t expect anything in return.
Nita
Nita
Sex: Female
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Okay. I say my first thought was that she is a real character. She has got great personality. She is funny in a very dry, dry sort of sense. She is... her physical attributes; she is so pretty, she is slim, she is gorgeous, she wears modern clothes. She is intellectually capable. She is very interested in the world and she can debate and talk about things on a very serious level. Small talk is something which they can’t do and she doesn’t do that so our conversations tend to be about ideas or things. And of course, apart from that, as most Asperger's, parents with Asperger's people will know, they are generally speaking emotionally way behind their peers, so you are talking Nita 23, think 16 and sometimes think 12 because there is such a loving, gentle, tender, core to her nature, that most people never see. And I know it is there and that is when I think to myself, this notion that Asperger's don’t have this ability to empathise or sympathise is actually something which isn’t true. It is there but it needs to be brought out in very specific particular circumstances.
This love and care for others, especially animals because animals don’t answer you back and bully you, that whole thing about loving and tenderness is there but it needs to be brought out as I said before in the right circumstances. So that gives me hope that somewhere along the line she may be able to transfer those loving tender feelings to a human being. She is capable of that and I just feel incredibly loving and protective towards her. I know this sounds silly because she is, you know, now in her early twenties, but I have seen the horrible rocky road she has had to travel and I think any parent would feel that about their child, who they know has been so hurt and you love them so dearly. I think she is smashing.
Joshua
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Joshua
Sex: Female
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Can you describe Joshua?
Right he’s, he can be a very loving little boy. You know I think it is a myth that autistic children don’t know how to love. That is not true. You know he will come up and he will want a cuddle but it is difficult, because you never know exactly what sort of mood he is going to be in. I said earlier on that he is starting to be able to manage a few more things like helping with the washing machine. He also knows how to do things like put the microwave on, which is great but then if you happen to do it and he is around he can get very, very upset because he wants to do it. So he is quite a controlling person. And if things aren’t you know, how he wants them, he can get upset, he can you know, that is when you might get the hitting or whatever. Or he might just be inconsolable you know, just lie on the floor crying and it is then very difficult to bring him out of that. So it is always first thing in the morning if he has got to be somewhere at a certain time, there is always that bit of anxiety in my head thinking oh you know, is it going to run smoothly or not. And you can just never tell. So yes, he does like to control things.
Jonas
Jonas
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How would you describe your son to me as I haven’t met him?
Lovely when he is asleep [laughs]. He is one to one perfect. He should have been an only child that could have had parents that could have given him 24 hours, because we have done the parental course of sitting down and playing with him. So you know we do half an hour play or an hour play of whatever he wants us to do, but he wants it 24 hours a day. And that is the difference between a neuro-typical child who would be quite happy to then go off and do some colouring or watch the TV, he can’t watch any video, he can’t keep still long enough. So that is where the computer comes in. So you know, he … because of the ADHD he is not very scared of doing dangerous things, so that is why he is very good at trampoline. When he throws himself on the trampoline, he throws himself very well, whereas his friends are still sort of a bit worried about it. So he is becoming extremely good at that.
He is extremely good at maths. He is extremely good at anything you do for the first time, he is extremely good at. What is difficult is finding something that he will then want to, you know, carry out with us, or be happy, just smiling would be quite nice. And in fact he has got positive chips you know and tokens for smiling because he doesn’t do it very often. So just being a little bit happier would be nice and integrating with us. The way I would describe him is that he is a body in the house that is quite happy if you leave him to it but doesn’t particularly want to be part of the house and that is very hard I think as a family that is very hard.
Joseph
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Joseph
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How do you describe him?
He is a lovely smiley little boy. When he is a nice little boy he is wonderful and you wouldn’t change him for the world, even some of the autistic traits. But then there is the other – it is very much a Jekyll and Hyde situation. He can be happy one minute and then all of a sudden it is like switching the light on and he can be a monster. And you never stop loving him even when he is having those tantrums and on a good day you will cope but there are times when it is extremely difficult and you do your best. But no, in his own way he is a happy little boy, but he wishes that he wasn’t autistic. And he would tell you that.
Robert
Robert
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How would you describe him because I haven’t met him?
Right. Robert is a lovely boy. He is generally speaking he is fairly quiet keeps pretty much himself to himself really he has got a lovely smile. He has got a great giggle when he starts laughing and he can be quite enthusiastic about things. And he is pretty good, because he will more or less give lots of different things a try. The educational psychologist suggested that he tried horse riding to improve his coordination and his balance and he has been doing that since January with his sister and he never looks totally comfortable on the horse he never looks totally sure, but he has never said that he doesn’t want to go. He has continued on with it. He says very little after the lessons, but then later on in the day he will say things like, whichever different horse he has been on, so he will talk a bit about them and things like that.
He goes to cubs. He never says he doesn’t want to go. He goes, what he can’t handle is when it is in a different venue. That freaks him out completely. If he has got to go to a different place he will just refuse then. Like if he is going to a church for a church service for cubs, he won’t handle that necessarily, but within his routines and within…yes, he is a great lad, he is lovely, and he is very, very special to me and I just think the world of him, I just adore, him he is lovely. He is quite loving he will come up he wants cuddles a lot of the time he is very. He is very loyal to his sister and loves his sister even though he belts her sometimes.
But when you see the size of him and the size of her you would find quite surprising, but he is just a lovely, lovely boy and he has got so much potential and he is just really, really canny and really cute and he loves tigers as well. He is just great and he certainly brings a different dimension to the family and he brings he brings sometimes a lot of frustration and he is difficult to keep to a schedule because he has no concept of time, but I have learnt so much more about the natural world through him than I ever would have done otherwise and he is just great and I wouldn’t be without him.
Tom and Matthew
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Tom and Matthew
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I mean, I wouldn’t swap them for anything because I just think having them is wonderful. I mean they are really sweet boys. You get more love and affection and consideration from them. You know, if they know you are upset and they can tell by my voice, Tom will say, “You have got that tired voice mummy, are you going to shout in a minute.” “Well I might do.” Or, “I can tell you are tired mummy, if I could get up and do that ironing for you I would to make it easier.”
And he is such a sweet boy, you know. They are just very loving and they are very kind and they are clever and they are just lovely boys. They are really sweet. They have got their odd little ways of doing things but that just makes them all the more endearing so… I just think they are lovely. I wouldn’t swap them [laughs].
After the surgery, Robert can pick up the sounds when he's playing music much better than before...
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After the surgery, Robert can pick up the sounds when he's playing music much better than before...
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He’s… well I think he is lovely but he is my son. He’s he is as bright as a button. He is incredibly engaging. He is very… unusual. He has the most amazing imagination. But he is odd, there is no doubt. He is very… he gets on very well with adults, and most adults find him very endearing. He… he loves to talk. He will talk till the cows come home. And he can be very entertaining. He can be incomprehensible. He doesn’t, he doesn’t follow the normal rules of conversation. So he doesn’t, realise that other people have to follow what you are saying [laughs]. So he tends to leap into the conversation and just jump in and start telling you something. And if you are lucky you can stop him long enough to find out what it is he was talking about in the first place [laughs].
But being his mum, I have got the advantage, I can usually guess because I know much more about him that most. But an awful lot of people haven’t a clue [laugh]. We just have this voice going on. …And other children can sometimes get really fed up, I can tell you. But he is very I mean he is a very keen child, he loves things like history and he is always fascinated by stories. And he is very interested in his school studies. He comes back very excited to tell me all the things that have gone on. And I think he has more of a, a sort of a thrill for that sort of thing, than most other kids I have seen to be honest. He will, given enough encouragement really put everything he has got into studying or finding out about things. He is very keen.
So he is a real joy to be with when he is in a good mood. And I think that is what most people see now. I think he is a child who is very, very earnest and very, very talkative and very funny too. He clowns a lot and loves making jokes. So I think most people see that as he gets older. That is how I see him.
Having given a taste of what the children are like, we discuss in more detail the experiences of the parents we interviewed. These include how the children were diagnosed, experiences of going out, the activities the children enjoy or dislike and how parents view their children’s future.
Last reviewed July 2017
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