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Carolann - Interview 36

Brief Outline: Carolann's daughter, Nita, was diagnosed with Asperger syndrome when she was 14. Nita has written a book about her experiences, had some unsuccessful experiences at university and is currently teaching herself Russian, Japanese, Spanish and Chinese.
Background: Carolann, a teacher, lives with her husband and daughter, Nita, who is 19 years old. Ethnic background/nationality: White British.

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Carolann, a teacher, and her husband, who is in the music business, have one daughter, Nita, aged 23.  Nita was born by emergency caesarean and Carolann thought straight away that something about her daughter was different.  Nita didn’t like to be cuddled or handled and Carolann took her to 23 doctors and health professionals over the years but was told that Nita was a wilful child and not to worry.

As she grew older, Nita did not interact with other children and was rarely asked to children’s parties or to play with other children.  When she went to secondary school, things got worse and Nita was badly bullied. Carolann moved her three times to different schools because of the bullying and Nita became hysterical about having to go into school. Eventually Carolann contacted Young Minds who suggested that Nita might have AS.  Carolann rang the National Autistic Society who gave her the number for a local specialist who assessed Nita;  this assessment enabled Carolann to get her GP to refer Nita for diagnosis when she was 14.

Carolann felt relief on getting the diagnosis, but school continued to be difficult because Nita did not get appropriate support.  She went to university but only briefly because she was bullied and, again, lacked appropriate support.  When she was 19, Nita discovered that she had a flair for languages and went to another university to learn Czech and Russian.  Again she got no appropriate support; she became very depressed and left after two months. 

Since leaving university, Nita has continued to learn Russian, Japanese, Spanish and Chinese, written a book called “Standing Down, Falling Up” (Lucky Duck Publishers, ISBN 1-873-94298-2) and given talks at conferences.  She writes music and enjoys watching alternative films. Carolann describes how Nita has learned some social rules and so can socialise with other people effectively, but this takes a lot of effort and exhausts Nita. She describes her daughter as intelligent, beautiful, articulate and funny, but "autism almost invalidates everything about her" as far as the outside world is concerned. 

Carolann has set up a support group called SAFE (Supporting Asperger Families in Essex) and does a lot of advocacy work.  She feels that the direction her life has taken has given her purpose and meaning.  She is optimistic that eventually people will recognise the valuable contribution people with AS can make to society.

 

Nita

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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.
 

Carolann visited over twenty professionals before her daughter was diagnosed with Asperger syndrome.

Carolann visited over twenty professionals before her daughter was diagnosed with Asperger syndrome.

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And I took her to the doctors and the usual check ups and no, nothing was wrong. She is just a normal baby. And then when she got to pre school age, I discovered that people weren’t making friends with her, she wasn’t mixing with others. She was on her own, dressing up like a princess with big high heels and wandering around the play group just being totally isolated in her own world and I tried to bring friends round and she would play with them for a little bit, not particularly interact, but I knew nothing about autism and I kept reading Penelope Leach books and Dr Spock and I was thinking, this isn’t right, something is not right. Nobody would say anything. She is perfectly all right there is nothing wrong with her.
 
And in the end I took her to somewhere in [town] where they said I should have parenting classes, because obviously it was me. I was a bad mother. And I had to leave her at this particular, I suppose it was kind of a playgroup and I remember coming back early and seeing her sitting on her own in the corner, weeping and weeping. And I thought I am not going to do that to her, you know, nobody was taking any notice of her, nobody was loving her, or caring for her and I thought I have had enough, that is it. So I took her out of that place immediately and we never went back again.
 
She went to a third secondary school - where ironically she actually was showing all the signs of what I later discovered was Asperger syndrome - but this time it was so bad and she was so terrified of going to school, by then when she approached the school gates and I was driving her, because she couldn’t go by public transport because she would get things thrown at her and she would get and stuff, she used to crouch on the floor, underneath by her seat on the floor and she begged me not to take her to school. She said, “No I can’t do it.” So in the end I didn’t. I told the head and the pastoral head of year and that she was absolutely terrified and she was actually being physically sick and the doctor put on her haloperidol which was not the right thing to do, but at least it calmed her down, so she looked ohh like a zombie for most of the time but at least it did calm, calm her down to an extent but it was the wrong thing for her.
 
And then I just started putting bits and pieces together. You know I phoned up Young Minds at this point - she was 14 at this point - and I described her problem with what I now know as social interaction deficits. She had difficulty making friends with people and she wasn’t popular and instantly this person from Mind said, “It sounds like she has got Asperger syndrome.” And I said, “What is that?” And then they described it to me and said, “Get onto the National Autistic Society.” So I spoke to the NAS and they described it absolutely what she had and I thought now I know, she is nearly 15, it has taken all these years going to, I think I counted up at one time it was 23 separate so called experts or professionals. Not one of them, not one of them had mentioned Asperger syndrome.
 

Carolann felt vindicated on receiving the diagnosis because she was not “mad, bad or sad” and...

Carolann felt vindicated on receiving the diagnosis because she was not “mad, bad or sad” and...

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When you got the diagnosis can you remember how you felt?

 

Oh relief. Vindication because I had been banging on for fourteen and a half years that there was something wrong. And everybody I spoke to, literally everybody, said, “No Mrs Jackson, there is nothing wrong with your daughter. It is you. You are a bad parent. You know, you are letting her have too much freedom, you are not giving her sufficient structure, you know, it is down to you.” So when I got that I thought yippee. I am vindicated. I am not mad, bad and sad and nor is she. And I remember feeling such a… I almost felt like leaping for joy and telling the world that my daughter, she had got a medical condition. She was not a loony, weirdo nutter, you know with a mental health condition. She was a child who had a medical condition, like deafness or blindness or whatever but it just happened to be Asperger's syndrome.
 
The irony of it was, that when I did, I think I said earlier on, when I did actually go back to the Child and Family Consultation Services and say she has got a diagnosis of Asperger's, they didn’t believe me. The first thing they said was, “Oh she can’t have because she is too clever. Only people with learning disabilities are Asperger's syndrome.” That was the level of understanding, about eight or nine years ago here. That was the level and that was generally thought to be the case. But then of course I was able at that point to get involved with the children with learning disabilities, the children with disabilities team. I had to push very, very hard for that. And the reason why that happened was because well something very bad happened to Nita and they took her on the team and then later on she was transferred to the Mental Health Team for Adults, where she is now. Although bless ‘em they are lovely people but they have had no training in Asperger's and they freely admit they don’t know how to deal with Asperger's people and even if they did, the services which they would hope to provide aren’t there, because there are no resources, no money.
 
So the sort of things which would be like befriending, social skills training, independent living skills training, supported employment, all those sort of things that other people do and take for granted or are available to learning disabled groups, academic learning disabled groups are not available for Asperger's, because they don’t fulfil the criteria. They are above the magic 70 IQ marker. Therefore they fall off the scale, you know, and I keep trying to say to everybody I can; “There is no link between intellectual ability and daily life performance. Absolutely none.” I mean as I said, she could write you an essay on you know the Influence of Postmodernism in the Twentieth Century on whatever, but she can’t cook herself a meal. She can’t, she is dyspractic, she can’t do up her shoelaces, you know she can’t see the health, the muck and mess she lives in and if she does see it, it doesn’t bother her. So basic things which someone with an IQ below 70 would be able to do, some things like that she just can’t do, despite an incredibly high intellect and it is getting those two sides of the coin together for people to understand this is what Asperger's is. It is intellectual flair with very, very low daily performance. So that is the answer to that way. I felt vindicated yes.
 

Carolann’s daughter runs out of “tricks, ploys and schemes” after a few hours in the company of...

Carolann’s daughter runs out of “tricks, ploys and schemes” after a few hours in the company of...

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I mean my daughter, Nita, will say to me, “How are you mum?” She won’t actually want to know really how I am and she is not particularly interested but she knows that is something that I like her to ask me. Or if I fall over and hurt myself or cut my finger, she will say, “Oh I am sorry, mum” because she has learnt that is the response. She doesn’t particularly feel it I don’t think. Or even particularly care if I have cut myself. But these are the cues that she has learnt to pick up from society. So she is really learning by some kind of observation not by osmosis, like we sort of pick it up as we go through our lives. They don’t do that. That bit of the brain that is to do with understanding those kind of things that go on in society is very faulty.
 
And she has become very adept but not adept enough to fool people for long. She says to me that when she is out in neurotypical or normal company, after about two hours, may be three hours, she has become utterly exhausted and all her ploys and tricks and schemes that she has worked out start to fall by the wayside, because she doesn’t have the energy.
 
Her brain, the intellectual part of her brain that makes these decisions is having to work so fast. Faster than you or I can ever understand. Here is a situation, I have twenty solutions, twenty things I could say, which one should I choose? And she is going through those twenty solutions, those twenty answers at the speed of lightning and picks one. If she is tired she may pick the wrong response and so that is when things start to fall apart and that is when people start to think, hang on, something is not quite right here. I can’t quite put my finger on it. I don’t know what it is but, I feel uncomfortable in this person’s presence. They are not like me. That is what others will say to her and then they back away and once they have backed away, they never return because people have made up their minds about her, which is why she leads a lonely life.
 

Carolann describes a typical day for Nita which involves listening to music, reading and exercising.

Carolann describes a typical day for Nita which involves listening to music, reading and exercising.

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How does she spend a typical day?
 
Right you have seen some of it here. Because she is not actually in a job, although she would like to be, she spends most of her time on the net. Studying. She is now studying Russian, Japanese, Spanish and Chinese all on her own, as well as writing her second book and she is also training... she would like to do something creative and she has taken a great interest in nails lately, so she is going to train to be a nail technician, sorry I have kind of got a bit weepy from the last one, sorry. She wants to train to be a nail technician which would give her an outlet for her creativity. She is a very good artist and musician. She plays music, she writes songs, she has made a record. She used to be a DJ when she was younger doing the decks and the mixing. So she has got lots and lots of creative ideas.
 
She is always busy with her ideas and when she is not doing that, she is watching alternative films, made hopefully in Japanese. She likes to watch Japanese films in the original language to try and get to learn more. She buys Russian films. Spanish. She has an enormous collection of DVDs, and things. She listens to music, she loves alternative music. She is just getting into, probably sort of romantic music, like Debussy and Ravel and that stuff. And she quite likes that kind of music. A lot of ethnic music. She also exercises a lot. She is very concerned about her weight and her health, so she spends at least an hour or two a day exercising. Talking to me. Speaking to people on, I don’t know what they do on the net. I haven’t got a clue. Message board is it? Or whatever I don’t know, those things, chat boards. And that is what she does and she goes out for a lesson in Japanese to London once a week and she is starting Open University in November to do Spanish. She would love to do Russian and Czech but they don’t exist, so she is doing Spanish and then we will just see where it goes. That is her life. Sleeping, eating, internet, walking, exercising. Yes.
 

Carolann talks about how she has developed purpose, meaning and confidence because Nita has...

Carolann talks about how she has developed purpose, meaning and confidence because Nita has...

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My working life has been greatly affected [sigh]. I used to work as I said in the music business and then I had my daughter and I used to run, before we knew she had Asperger syndrome, I did things from home I had a music group for pre school kids and a drama group and all sorts of stuff like that. And then when she got diagnosed with Asperger syndrome I become so focused on that and became so knowledgeable and become known as a useful resource of knowledge about the condition, that I was approached by lots of people to do talks and run courses, which I have done. We have run Asperger's courses at our local community centre. I now go round to talk to mental health teams, schools, colleges, social care, departments and to give talks about Asperger's raising awareness and of course I have got a teaching qualification so I also have a job working at [college] teaching Asperger's youngsters, well not youngsters, between 16 and 19, but they come in through the learning disability route because they have, they went to special school and got a statement and stuff, so that is the area that I teach, so if I hadn’t known about Asperger syndrome, if it hadn’t hit me all these parts of my life which I never knew I had the ability to do before, have come about simply because my daughter had Asperger's.
 
Otherwise what would I be doing now? I am too old to be in the music business. I would have left long ago. I would have been an old dear doddering around in a mini skirt and red hair. That wouldn’t have suited. So I don’t know where I would have been. Perhaps I would have just been married and pootling around in the garden, although knowing me, probably not. I would have got involved in something. I would have done something with my life. But Asperger's has given me purpose and meaning, confidence, value myself more because I know that I am valued by other people. So in that sense from the object of an intellectual point of view, it has been a positive for me.
 

Carolann describes how her friends from her ‘old life’ faded away because they had no point of...

Carolann describes how her friends from her ‘old life’ faded away because they had no point of...

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But it is quite lonely at times. But I do have people to talk to, I mean I am not sort of shut off from it, it is just sometimes I feel I would like a soul mate I could talk to. I did used to have one before my daughter was diagnosed, but one of the things that happened to me, may have happened to others that when you get involved in the world autism, all your friends from the old life fade away, because we have no point of contact. I mean, for instance, the worst that could happen to, I will call my friend Elizabeth, that is not her name, Elizabeth the worst that could happen to her daughter is if she has a row with her boyfriend and that is like the troughs of despair. Now if my daughter had a boyfriend to have a row with it would be wonderful. So the levels of anxiety and parental worry are at a much higher level with Asperger's, than with ordinary families and to try to convey that to people and of course Asperger's is all encompassing because it affects every single area of your life from cleaning the floor to going to bed at night, it is there the whole time. They don’t understand so a lot of Asperger's people, like me, find themselves isolated and quite lonely.
 

Carolann thinks parents should “push hard for a statement.. it will have an enormous influence on...

Carolann thinks parents should “push hard for a statement.. it will have an enormous influence on...

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But that was me pulling strings, the school certainly weren’t prepared and when I asked the school for a statement, I didn’t know what a statement was in those days, I mean I was so naïve. Had I known then what I know now, I would have pushed for it but I didn’t. Her statement would, had she had it, we only had about three months to run, before she actually technically left her secondary school and they persuaded me, went to tribunal and the tribunal said, “No she doesn’t need a statement.” I even got [doctor] from the [hospital] to come down to the tribunal. Even then they refused to give it to her. As I said, if I had known I would have pushed, even if it only lasted one day I would have pushed. But I didn’t know. So they persuaded me that it wasn’t worth it, blah, blah, blah. So we let it go. I know now that had she had that statement, it would have helped her in college. It would have helped her basically for the rest of her life, although technically the services supported, within the statement, finished at age 16. The implication of the fact that she had a statement would be with her for the rest of her life. So anybody out there if you are told by a school not to go for a statement, go for it, push hard, and get it, even if it only lasts for 24 hours, it will have an enormous influence on the rest of your child’s life.
 

Carolann describes how “the social times that other children love” terrified her daughter.

Carolann describes how “the social times that other children love” terrified her daughter.

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When she got the diagnosis the lady, the pastoral head who we spoke to, said, “Oh yes, I think I have had heard of that.” But she didn’t really know what she was dealing with. I gave her as much literature as I could at that time and informed most of my friends that my daughter had this condition. The school made absolutely no attempt whatsoever to change anything. The fact that she should actually have had some form of learning support to help her. Intellectually, you see, she was fine and that is the only level on which they based any need for support. If you are intellectually able that is it. And of course she was because she went on to go to university. But it was all the social and pastoral stuff. She needed to have support in the playground, break times, the social times that other kids love as you know are the times that Asperger's people find the most terrifying, horrendous and so anxiety provoking. She would, she told me, go and hide in a cupboard because she was frightened to go out with the other children, well they weren’t children, they were teenagers by then. Who would bully her unmercifully.
 
And I remember her saying to me, she would go from group to group asking if she could be with them and they would say, you know, “Piss off. Go away. We don’t want you.” And this happened every single time. She found no group that would accept her. And yet she looked like them, she had the same … she did have the same interests. She was interested in you know, popular culture, music, clothes, fashion, all the things that Asperger’s aren’t supposed to do they did. In fact the more girls you speak to the more you will find they are actually very interested in that kind of thing, a lot of them. They are not all, you know, wearing brogues and straight hair and kind of traditional, classic, sort of dork picture you get of boffs, she wasn’t like that at all. And the school did actually tell me that they were going to tell the whole of Nita’s class that she had Asperger's syndrome, with her not being there. And she was taken off somewhere and this happened and contrary to what all the books say, it actually got worse. It didn’t make it better, it made it worse. Then Nita started getting remarks like, “Well we knew you were strange, now we know you are.” So having the label of Asperger's did not help her at all.
 

Carolann talks about Nita’s experiences at university and how the social support was not provided...

Carolann talks about Nita’s experiences at university and how the social support was not provided...

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Then she tried for [name] University. That lasted I think two days. Because the learning support person they put in didn’t understand that she was needed at lunch times and break times and this is when this learning support decided to go off and do her own thing, so Nita was left vulnerable and she walked out of uni. I had to pick her up in the middle of the blinking A12. She was walking down the side of the road in tears and then she went to [name] University again to do a social work course. She got turned down for that. She didn’t pass the interview. As it happens it is a good thing because I don’t think Nita would have made a very good social worker, because she is too involved in her own particular difficulties.
 
Then she suddenly discovered at age 19, that she had a, 20 maybe, that she had a most wonderful flair for languages which came out of nowhere. She started learning Czech on her own and Russian, two of the most difficult languages you could possibly learn and eventually she decided that she wanted to do that for her life. So we got onto [university]. She went to [university] for an interview and did the whole interview in Czech, on her own. This is what she had learnt, she had learnt, apparently the Czech tutor there, said she had got herself up to A level Czech within six months on her own. So she has this wonderful facility. And she was also doing Russian. She was learning Russian then and she got in on the first, no problem, even though she didn’t technically have enough points, she got in on the interview.
 
Unfortunately [university] again, did not put in the support she needed, trained Asperger's support. She needed so many things, like the lecture notes written out for her or at least transcribed taped. She needed some, the very, very strong pastoral support but most of all, she needed the social support, someone who would get her an entrée into social groups and be able to facilitate her social communication. And I was told by [university], “Well we can’t make people like her. You can’t make people make like her, you can’t make people make friends with you.” And I said, “Yes, I understand that but, surely you can put her in… and have someone who can actually take her to these coffee groups and these lunch groups and she can just sit with them.” It never happened. And after six weeks, seven weeks may be of being totally isolated she was deeply, deeply depressed and by this time she was so stressed, her hair was actually falling out. You may have heard her mention a wig, she wears wigs now because she has lost about half her hair through stress. It is still going on now. And I had to take her out of [university]. In fact she left [university].
 
And I was really sad because adored the language. She adored everything she was learning but the social side was what totally let her down. You can imagine, you know that whole thing at university, getting to know people, going out and doing this and that. It is so much a part of the learning process. That was barred to her, from her. She didn’t have these choices. She was left on her own, wandering around campus, basically weeping. And that weeping just turned into anxiety, and then anxiety became fear, and then she became too fearful to go to lectures. So she stopped going. So the whole thing was compounded and the journey up to London was dreadful from home here, because she wouldn’t live in halls. Because she said, “If I live in halls or live in a flat I will be isolated. I will be lonely. And I will know that they are all going out down the pub. I won’t be asked and I will be left on my own and I will feel even more lonely.” And it is that aspect is awful… dragging loneliness.
 

Though Nita has written a book and Carolann is “so blinking proud of her”, she is not leading the...

Though Nita has written a book and Carolann is “so blinking proud of her”, she is not leading the...

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Anyway, so she left university and she is home with me now, as she was for many, many years previously. She has written a book, which has been published called “Standing Down, Falling Up”. She is working on her second one. She has done… she is a very good advocate for Asperger's because she has done TV work and radio work and she talks at conferences. So she is a very confident person. And that is what I am delighted and I am so blinking proud of her. But on the other hand that is not what she wants. She doesn’t want to be known as ‘the person with Asperger's syndrome who talks at conferences’. She wants to be known as Nita the girl who has a life, who has friends, who has relationships, who has a job, who will live independently, who will be able to drive, who will get a job. Those intangible things, those things which remain in the future for her is what she wants to be. But at the moment it is a very, very slow process.
 
And of course the irony of it is, if you are stuck at home and you don’t go out how are you going to meet people who are going to give you those things that you want? And going out into society, into the world, is just such a terrifying thing to do. Scary and risks you take especially as a girl with Asperger's, who doesn’t understand the way society works, and doesn’t understand the notion of intent. And the smiling faced stranger and all the classic things you think about. It is very terrifying to think that she could be a victim and taken advantage of. Her naivety and her gullibility often shine out.
 

Carolann explains why she has no involvement with the health service.

Carolann explains why she has no involvement with the health service.

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How have your interactions with health professionals been, how have they been since that period?
 
What interactions with health professionals? They don’t exist. There aren’t any. Who do I go to? Who knows about Asperger's in this county? Nobody. I go to me, because I know far more then any expert in this county. I have read. I have researched. I am extremely knowledgeable and if someone wants the answer people come to me. In fact it is ironic, there is a psychiatric unit here called [name], where they put a lot of Asperger's people unfortunately end up in there, or suspected Asperger's people. The consultant psychiatrist phoned me a few weeks ago to ask if I could recommend any form of treatment or anywhere I could send this person for diagnosis. I get mental health people phoning me up all the time. Social workers, teachers... I am an unpaid mum volunteer and they come to me! I actually go out and do talks to mental health teams about Asperger's syndrome because they really don’t understand what they are dealing with. So in terms of your original question health involvement, there is no involvement. There is nothing out there for Asperger's people at all. Plus she wouldn’t fit.
 
Again we come to this awful, you know thing, she is not learning disabled. She is not mentally ill. She is not physically disabled. She is autistic and there is no recognition of her form of autism in this county. So who would I go to? If she had broken her leg and had autism they would treat the leg, but not the autism. If she had bipolar disorder she might be lucky enough ha ha to get onto a mental health team but they would look at the bipolar disorder and not the autism. They can only deal with what they are presented with and autism is still such an unknown quantity, untrained people dealing with it. I mean I am sorry for them. I am not having a go at them, because they have not been given access to proper training, but the fact remains that there are no trained professionals. Therefore I have no involvment with the health service at all.
 

Carolann thinks eccentricity used to be praised but now everyone is expected to conform.

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Carolann thinks eccentricity used to be praised but now everyone is expected to conform.

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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.
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