Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

My childhood

with 6 comments

I’ll start at the beginning.

I was born two weeks prematurely. My mum had a difficult birth. She was on gas and air and had no control of what was happening to her and was left a bit traumatised, especially after they kept taking me away without telling her. My mum is quite emotional and gets upset easily.

Reaction #1: She describes me as a fussy feeder because I refused milk often and I would only feed every four hours, so she was worried about my weight. I had colic. Colic is defined as lengthy, repeated periods of crying. Apparently I had to be held down in the cot or I wouldn’t sleep. These are traits regularly reported in food chemical sensitive babies. Colic has been linked to problems later in life like ADHD and IBS. That isn’t very surprising really, since they’re all genetic food chemical sensitivity problems. Apart from the colic, my mum describes me as a ‘good’ and ‘quiet’ baby. At least, I am described as ‘good’ in comparison to my hyperactive younger sister who screamed the house down every night.

Reaction #2: My very first memory is of sitting on the front doorstep with my mum and eating some chocolates with her out of a tin. I wanted some more, but my mum said they were gone. There then transpired a misunderstanding between Mum and me in which I thought she said there were more in the kitchen cupboard. I leaped up and raced into the kitchen. I couldn’t reach the cupboard as I was too small, and I couldn’t climb on the unit. So I turned around to run back out of the kitchen and I ran straight through the plate glass door that divided the kitchen and living room. This is in the era before safety glass. I cut up my face. I still have a scar just above my eyelid where I was cut by glass, and I was very lucky not to lose an eye. My mum was beside herself. She couldn’t understand why I did it, she thought it was very strange as I was always such a careful, quiet little girl and my recklessness had been very out of character.

Reaction #3: I have a few other flashbulb memories from under the age of three. In all of them I am anxious or distressed because I have seen something or met someone new. My second memory is of playing with brightly coloured play-dough at the nursery across the road. I started bawling my eyes out and had to be fetched home. I wonder whether the brightly coloured additives in the plasticine affected me as they affect other food chemical sensitive children.

Being left at playschool always made me cry. I felt like a misfit from the first day I went to nursery school. I was quite tearful and introverted, and I found it hard to get on with the other children. This is nothing compared to my little sister, who spent most of nursery school screaming to go home to mum! After we moved to Nottingham, on my first day at the new playschool I remember the other children being told off for climbing up the slide. In spite of hearing this very specific instruction I ignored it because I thought it didn’t apply to me. I pretended to be a cat. I didn’t talk to any of the other children. I remember many occasions when I heard instructions but didn’t think they applied to me because I wasn’t a part of the group.

I didn’t settle in school properly either and cried and cried. I found the transition hard. My mum was pregnant with my sister at the time and various relatives had to take over responsibility for me because she was quite ill. I felt very frightened. I was frightened of the other children and the teacher, who wasn’t very nice. One of my first days at school was spent colouring in a picture of a woman. I coloured the entire picture in black. The teacher told me off because I hadn’t been given permission to colour in. I was so upset all of the time that I was eventually sent off to my grandparents in Derbyshire for a while. I don’t know what I had been eating at home but I don’t think my mum was doing the cooking as she was ill in bed for a lot of the time. My grandparents were both ex-teachers and cooked all of their own food from scratch and ate in a very traditional, old fashioned way. I must have eaten home made custard every day of the week. Apparently I was an angel all week, and my parents were really peeved about that!

I was addicted to Ribena blackcurrant cordial. I used to suck my thumb, so I went around everywhere with a bright purple thumb! I was a very, very fussy eater. I hated all vegetables. I hated foods that squeaked in my mouth or hurt my mouth when I chewed them. I hated fizzy drinks because they literally hurt my tongue. I hated strong flavours. Pies, fish, and chips all made me physically gag. I largely lived on mashed potato, lamb chops, and breakfast cereal. I would only eat the yolks of eggs and not the whites. I hated sandwiches. I loved plain sugary breakfast cereals like Rice Krispies with whole milk. I hated skimmed milk. I hated fruit. My mum spent a long time negotiating with me over food. My lunch was usually a very mild cheese sandwich or a marmite sandwich and a jam sandwich. My mum would cut the crusts off the sandwiches, but the bread would always have a hard edge where she had cut the crust close to the edge, so I would eat around the crusts anyway. Finding these remains in my lunchbox caused me to get told off, so I would try to break them up into a massive plate of crumbs or throw them under the table. One of the dinner ladies found me out and told the headmaster, who told my mum. I was distraught, because I just couldn’t bring myself to eat this awful food, it made me feel physically sick. I did most things very slowly and deliberately that it gave me the nickname ‘slow coach’ which really upset me. I ate so slowly that I frequently overstayed the lunch period and that got me into even more trouble. I would spin my meal out because I found food so disgusting. My mum was quite worried because I was underweight.

I had lots of problems with clothes. I couldn’t stand wool because it itched. I couldn’t stand lace, and I insisted on having labels cut out of clothes. I was ‘allergic’ to everything and had constant post nasal drip. I had asthma. One day at school I complained I felt ill and couldn’t breathe, so the teachers called my mum. When she got to the school she found I was having a full blown asthma attack, but in those days they were still so rare the teachers didn’t know what was wrong.

This was all in spite of eating a fairly good diet. We didn’t eat ready meals. Breakfast was cereal and whole milk. Lunch was sandwiches, a mini chocolate bar and some crisps. I drank a lot of whole milk. Tea was usually meat, potatoes and vegetables. I usually left the vegetables. The only thing we did that was really wrong was use margarine instead of butter. I didn’t eat any additives on a daily basis with perhaps the exception of some in the margarine. My diet wasn’t vitamin deficient.

I got a lot of earaches. I did catch chicken pox. I was often ill, sometimes seriously. I had several very nasty ear infections that made my ears hurt so much that I cried. My best friend had a perfect attendance record for every year which won her a prize. I couldn’t even imagine that. I seemed to be off ill at least once every term. There was no sudden ‘downturn’ in my development at the critical age of two! I was ill and different from birth.

I didn’t have a refrigerator mother. I was breast fed. My mum loved both my sister and I and spent a great deal of time stimulating us and teaching us in childhood. As I grew older, I found that my mum had problems understanding and getting on with me, because I was very stand-offish and ‘aloof’. Of course, I know I was not ‘aloof’ or ‘lacking in empathy’, I just didn’t like to be touched as it tickled. It hurt emotionally to be touched, and I didn’t really like interacting with people because I was afraid of social situations.

I was extremely shy and timid. I was afraid of boys and never spoke to them or made friends with them. I had a small group of girl friends and a best friend, who I stuck to like superglue though I never spoke much. I was already using her as a social crutch.

When I was seven, I was reading out loud to the teacher, and she suggested that I needed to go down a level. I was very bad at reading out loud because I was quite shaky and nervous. I stumbled and stammered, and I didn’t know how to pronounce some words even though I understood the meaning. Sometimes, because I was bad at catching nonverbal cues, I would just stop because I didn’t know whether I was supposed to continue. Although I was sent down a reading level at school, at home I was reading the full, unedited version of J.R.R. Tolkien’s The Lord of the Rings.

A year later they noticed I was behind in maths. They discovered that the reason I was behind in maths was that no one had ever taught me to add up properly in my head, and I was still counting on my fingers. I wasn’t good at maths, all the way through school. Sometimes I lagged behind for weeks because a basic rule hadn’t been explained to me. I dreaded maths. I would finish one long, boring worksheet of long division and go for a next worksheet hoping for something different, and I would be confronted with the same thing again.

After our teacher told us about germs I became an obsessive hand washer. I always washed my hands thoroughly with soap after using the toilet. I hated the sensation of having anything sticky or greasy on my hands, so I would wash them. I would splash the taps to clean them too. If ever I was in a situation where I couldn’t wash my hands, I would become very anxious. I still wash my hands far too much. I can’t stand the feeling of grease or dirt on them, or the faintest smell, even that left by coins.

At home, I had a variety of interesting stims. I had little rituals and ways of doing things. I always ate in the same ritualised way. I don’t know what my parents thought of my behaviour, but they didn’t seem to recognise it as unusual. I loved to climb on the climbing frame in the back garden. It was round with four ladders. I would climb onto the bottom rung and jump off. Then I would climb on to the next to bottom rung and jump off. Then the third rung and jump off. This would go on until I got all the way to the top and jumped off. Then I would move on to the next ladder and do the same. The climbing frame had horizontal bars. I would loop over them. I had to loop over them all, one after the other, always five or ten times. If I was in the middle of the climbing frame on the swing, if I touched the ground with one hand, I had to touch the ground ten times with that hand, then ten times with the other hand. If my mum or dad called me inside half way through this compulsion, I had to finish it, no matter how much trouble I got into. My sister shared this trait with me, though hers was not nearly so extreme – she just seemed to have to keep her ground touching even – one on each hand. She also had a habit of repeating things that were said to her under her breath. By this time she was thoroughly hyperactive and most days wired up on coca-cola.

I became a target for bullies quite early on. I didn’t understand why they always zeroed in on me. It was always the same. I had no problems with the girls in my year, but the lowest performing, most aggressive little boys always saw me as a target for abuse. I was called a witch. I had a very bad year with a strict teacher who shouted a lot. He terrified me. I had to sit at a table with some intimidating classmates. Every day I dreaded going to school. Everyone seemed to be in on a secret I didn’t know. I finally asked my mum how babies were made – something it took me days to pluck up the courage to do – I went bright crimson just asking the question. I was so embarrassed. But at least I realised what all of my classmates had been talking about.

Sometimes I felt like my friends weren’t really my friends and I was the butt of jokes behind my back. They once tried to arrange for me to be the new best friend of an unpleasant little girl with bad breath to try and get rid of me. The problem was, though we had been best friends since we were very small, my friend was very popular, and I wasn’t popular at all.

I understand now that I was bullied because I didn’t know how to dissipate aggression. When other kids are bullied they will make like they don’t care and make a joke, sometimes at their own expense, as if to say “yeah, I’m an idiot and you’re the boss,” or they’ll find some way of changing the subject. When I was bullied I responded with defiance or confusion and showed that I was hurt. I was labelled ‘a snob’. Bullying is all about the social pecking order, and I didn’t know I was supposed to submit and be small, and be friendly to these morons who were being horrible to me.


Written by alienrobotgirl

11 October, 2007 at 7:57 pm

Posted in My History

6 Responses

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  1. So sorry to hear you were bullied.


    13 October, 2007 at 10:50 am

  2. I think it’s a fairly normal part of growing up as an aspie. 🙂

    Alien Robot Girl

    13 October, 2007 at 2:34 pm

  3. Hello I came across your blog on my quest for looking at fairy pictures..My daughter has Aspergers she is 18 at Christmas..she sounds so like you..thank you for giving me a bit of insight into how she might be sound like a very determined lady I wish you well your pictures are beautiful..very talented!..just like my daughter! Regards Maggie


    16 October, 2007 at 10:16 am

  4. Thank you Maggie!

    Alien Robot Girl

    16 October, 2007 at 2:09 pm

  5. Just wanted to let you know that I appreciate your blog, and all the information it has on it, very much. Sometimes I read it with tears in my eyes because it explains so well why I feel a certain way (or did when I was a child). Other people always seem(ed) to be less complicated…


    21 October, 2007 at 7:43 am

  6. Aww bless you, thank you Alexandra!

    Alien Robot Girl

    22 October, 2007 at 10:03 am

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