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Harriet - Interview 42

Brief Outline: Harriet was diagnosed with high functioning autism when she was 39 years old. She has aspects of her life which she finds difficult like changes in routine, sensory sensitivities and a dislike of social interaction.
Background: Harriet, a classroom assistant, lives with her children.

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Harriet, a classroom assistant, was diagnosed with high functioning autism when she was 39. She describes feeling happy and sad when she found out; sad because she would never be part of the world she had spent so long trying to fit in and happy because she could stop trying so hard. She describes how she has always known she was not like other people and has had a difficult life in many ways; experiencing self harm, bulimia/anorexia and suicide attempts.
 
Harriet realised she may have autism after attending a training course to support children with AS. The people running the course commented on some of her responses and when she went back to school she was told that the staff at the school were convinced that she was ‘on the autistic spectrum quite noticeably’. Harriet went to her GP who referred her to a specialist who diagnosed her with high functioning autism.
 
She thinks her life would have been easier if she had been diagnosed at a much earlier age. She had difficult experiences at school and at home when she was growing up and has experienced abusive relationships. She feels comfortable with computers and likes science which gives her puzzles to solve, driving and playing tennis. She is doing an OU degree in science which is a safe place for her and enjoys her allotment which is “peaceful and beautiful with frogs, toads and foxes.” Her four children have been very supportive and helped her with aspects of life she finds difficult.
 
Harriet describes how she has difficulties staying still, communicating verbally, remembering instructions, obsession and fixations, stimming, changes in routine, textures, sound and light sensitivity, doing more than one task at a time, eating food and textures. For example, non uniform days are very difficult at school because first, the routine has changed and second, she finds the different colours confusing.
 
Harriet would like people “to listen to each other and see the person inside and accept each other for how they are, not what they wish them to be.” As she says; “Accept I move and feel and think differently but I am not stupid – I can show you beauty and peace and make you smile – I can do things differently and find answers that make life easier.”

 
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Harriet went on a course about Asperger syndrome when the trainers commented on her responses...

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The reason I entered the diagnostic system was that when my youngest started nursery school I helped out with reading because one of the teachers I had known for a long time asked me to hear children read. I trusted her and she made me feel safe. My eldest said it would be a good idea for me to do.
 

Anyway I heard children read and because I look at things how I do I was given children with problems to help and explain things to (still unaware I was Asperger's). I was then asked to support, one to one, a child with Asperger’s.

 

As part of this the school asked me to go on some Asperger courses so I could support the child and on these courses I was very confused why they said some of the things I think are normal were not how they saw things, I would go back to school and talk to the head and teacher I trusted who would ask me what I thought of the courses. Then on one I was so far away from how others operated (this course was run by Asperger trained and daily working with people) that they commented without thought - I think they were surprised at my responses. I went back to school and told the head who talked to me and the outcome was 'the staff in the school were convinced that I was on the autistic spectrum quite noticeably' and she added that she hoped I would see some traits in the courses she was sending me on.
 
I thought about it for a few days and then she asked me if I had ever thought about getting tested so that maybe I would not feel so confused and scared. So I went to my GP whose husband happened to have an interest in autism (I did not know that) and she looked at my medical history (she was a new partner in the practice) and said in her opinion there was a very high probability I was on the spectrum and that getting a formal diagnosis, in her opinion would help me and open up access to help for my self harm and that people would then understand I found communication hard. I stim under stress and can never look at someone when I talk to them and often wriggle etc) and would not assume I was mentally unstable.
 
 
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Had Harriet been diagnosed as a child, she wouldn't have felt that she was 'a bad and horrid and...

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Would it have helped you to be diagnosed much earlier in life?

 

Yes very much... I still feel I am bad and that I should try harder, do better, be good so that I don't get things wrong and that it is me being deliberately bad (as I was told for much of my life and punished for) this causes me so much fear and stress. I see now how much is done educationally for autism disorders and if it had been available when I was younger and I had been diagnosed it would have helped. (I did not learn to read till late and communication was very difficult at school so I was a target for bullies - I would spend all the time that I was not in class in the toilet and when I got older about 8 started to get into bulimia because they would force me to eat food that I did not like the texture of or muddled it up - before then was in different schools who did fussy eaters.
 
When I was in a later school they had school 'house' dining rooms and if for some reason you did not find a seat in your house you went to another house's dining room – so if anyone asked I said that is what I had done - no one ever checked.
 
My parents were always cross with me I tried so hard to follow the rules but I would get close to being good then the rules would seem to change... I am very rule based and things have to follow the rules or I get very confused. I always got the report ‘she could do better, she should concentrate and not daydream she should try to make friends and not be by herself’... again I would be punished for these things at home.
 
If I had known earlier then maybe someone would have helped to explain the rules and how to manage if they changed... I still do not manage and self harm and wander in and out of bulimia/anorexia though I have been given the rule that I must be a certain number on my mass so that helps because I have to follow the rule. I have also been given the rule that I can have a certain amount of self harm but there are things I must not do and I must say when but then getting an appointment is difficult because when I am to tell her sometimes she is not there so that breaks the rule but then they help me. Then keeping to the rules becomes very tiring and that sometimes causes overload and things get muddled - it would have been good to know earlier that I am not a bad and horrid and evil person.
 
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Harriet won't do 'social mixing' unless she is forced and avoids situations with more than three...

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I do not communicate with other aspies that I am aware of - all humans face to face bring their problems with communication and my dislike of using voice and I don't do social mixing unless absolutely forced eg work, but I never go in the staff room or social stuff or rooms with more than about 3 adults in - too much to process and they move randomly and say things I do not understand like 'how are you' or 'did you have a good weekend' .
 
I have read about other autistic spectrum people because of work and interest - it was interesting to see some things I do they also did like body movements and flapping hands etc. I began to see how school saw I was autistic. They are all very clever though and very good at communicating with others something I am not - I think the lady who designed crushersTemple Grandin,  is closer in communication skills to me as she can talk about business but not anything else and she likes things like hard pressure like me - in fact she is more how I am.
 
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Harriet describes the pleasure she gets from technology, science, driving, tennis and her allotment.

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Technology is good - computers are my voice - I have built a computer – I try to
make them work when they break at school and the printers etc and I have
done computer clubs. I like the photocopier and will be called out of class
when it goes wrong to mend it because I understand it and other technology
things. I see what an object can do rather than hear the name of the object
so I use an object to do what I want it to do - they say I 'think outside
the box' for example there are lots of different uses for a peg (a
pinching/holding device) than holding washing. I am often surprised how
people do not see how to make life efficient by using objects to help them
and if I say use this they say they did not think of using it like that!
 
I am nosey so science is good for me - it tells me how things work and is
elegant - it also gives puzzles to solve. All my children are science minded
- they appreciate the beauty of the world, the movement of the clouds, the
feel of rain, the frog hopping in the allotment, the sound of the wind in
the trees or sea hitting the sand, smooth stones and so on ......... The
processes of moving your finger, getting the print on the screen, a car to
move - all those processes that have to work in harmony to achieve the
desired outcome and then to find out where the process went wrong when it
does not work..... it is good
 
I am doing an OU degree at the moment - science - and it is amazing and is
keeping me safe at the moment - a constant that keeps me grounded when
everything else is changing and frightening. My allotment is good - peaceful
and beautiful with frogs, toads, fox, - I have a grassy area which I mow and
beds of veg that I share with the wildlife (only as much as I say - I plant
more than I need so we can share but if they get greedy then I cover the
food!) as it is their home I am cultivating for me - I have big trees that
were there before I got there and it screens me from the other allotments so
it could be anywhere. The children from school come and visit in the summer
to see the pond and guess the veg and even the most disruptive child is calm
and understands that they are a guest of the wildlife and so am I.
 
I play tennis which is good and I like driving as it is so mathematical and
elegant thinking of all the processes to make a car work. I am good at
driving I am told. My spatial awareness when driving is good but when I am
walking it is not so good.
 
I do not go out socially - or visit other's houses. I have one person who
visits occasionally maybe once a month and that is that and when they are
here I do not know what to say and wish they would go because I feel unsafe.
Computer is good I am safe. I like the OU because communication is by computer ad it is the only place where I can be me and not have to hide my difficulties and I am me - it is safe.

 
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Harriet describes the rules and routines she needs are like a narrow straight line she walks...

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Yesterday someone asked me at work what happens when the rules /routine is disrupted (this week at work has been very bad) and I said it was like the rules/routine are a narrow straight line I walk on (like the one where you have to walk heel to toe on). I have to concentrate so I do not wobble or fall off but the rules/routine help me not to fall off (like a rope to hold on to). When the rules/routine is changed even a very little (say a different order or room or even changing the lesson around eg literacy instead of numeracy) then I wobble and the rope has gone.
 
If it is a very little change and with the right person to support the wobble will last until I can get back to the routine/rules or find an old rule to cover it (It may have happened before so I will use that rule). If it is a bigger or unexpected change (I usually have been given time to prepare for the change which means I can make the new routine to follow so it is less fearful) then the wobble is a trip and I fall off the line and into a revolving door (like in an office building) and I just go spinning round and round (my balance goes and I am very clumsy - coordination is gone and I end up bruised) then I am told what to do by different people and it is like they push me out of one revolving door and into another and another and another so I am so disorientated and confused and processing of information is very hard.
 
There is just black space everywhere and all my reference points are gone. This is when I will self harm - from fear and to create a reference point, a comfort, something to stop the spinning and give direction - but then it brings with it its own problems.
 
I cannot manage when people change their operating systems, for example on a day where it is non uniform day (they don't dress the same and the different colours confuse me and recognising them is harder - they also behave differently) or for the mainly female staff if males come into school, we had builders, the females behave differently - laugh louder and move differently etc so I have to try and learn them again - on teacher who I work with I did not even recognise when she changed her clothes for a 60's theme and people kept having to tell me who she was. I work 20 hours which is the maximum I can cope with noise wise, processing wise etc - by the end of the week I am very, very tired. I have been there paid for about 6 years but was there voluntarily before that.
 
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Harriet enjoys her work as a classroom assistant and the children accept her for who she is.

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School were very supportive through this and they try to work round what I find hard - I work very well with children who find school hard both socially and academically and the children work well with me - they accept me for me and even reception do too - there was music time where they do head shoulders knees and toes and I cannot listen, process and then action quick enough and then I get very confused and it all falls apart - anyway one 4 year old girl took it on herself to stand next to me to help me every lesson and she was really pleased if I could get past two instructions but she knew I was not pretending I could not do it and did not think less of me because of it. I think the children and I work as a partnership - I know some things and they help me with the other things.
 
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Harriet talks about taking an overdose and self harming during her adolescence.

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My relationship with parents was bad, violent and unkind. If my mother thought I was not being good she would give me her valium to make me what she wanted but I never got it right - I took an overdose and stuff but she sorted overdose and was even more cross. I went to school one time in my teens with visible slashes on my wrists because I was so scared and confused but no one said anything (teachers or pupils) and neither did my mother.
 
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For Harriet's children she was just their Mum. Her diagnosis didn't come till they had grown up.

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When did you find out (how old were you?) and what did your family think about it?

 

I was about 39 I think - I am not quite sure - My parents were dead by then but my children were not too bothered as it did not make any difference to them as they had grown up knowing me as me. The eldest knew that there were things I did not do but he sort of told me what to do and when and when he left home for uni there was another child who took over the role. When I spoke to the eldest a little while ago I think he had thought about it more and he was very surprised about the things I find very hard but when I said well that is why you did x and x he said he just did them because it seemed natural and not out of the ordinary - he always was and still is (even though he is many miles away) very protective without being dictatorial - we can argue and then laugh and he still likes doing 'silly things' like water fights and climbing rocks and scrabbling up hills and things like that just to see the view and we both love computers and science and care about the beauty in the environment like the clouds moving across the sky or a dragon fly colours.
 
Though now looking back (he said) he could see where he covered for me but at the time he was not aware of it. The child/children who help me now have far more idea of where I need help because now it has a name I can say 'help I cannot do that' like shopping, people at school, strange places etc.... before it would have to be ‘oh I can't carry things’, you have to be there, you can read a map and so on.
 
I spent my life being so frightened that someone would find out and take the children away from me because I was a bad mother because I was relying on them so much - I thought that at any moment they would be a knock on the door. But I am very scared when they leave as I will then be on my own - I have never been on my own. It has been parents-from their house to husband and children - then children and me.

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