Each time I see a little girl
Of five or six or seven
I can’t resist a joyous urge
To smile and say
Thank heaven for little girls
For little girls get
Bigger every day
Thank heaven for little girls
They grow up in
The most delightful way.
Those little eyes
So helpless and appealing
When they were flashing
Send you crashing
Through the ceiling
Thank heaven…!
From the musical Gigi (Maurice Chevalier)
Hi there!
Opps! So much for the bite sized pieces these blogs are turning into something of War and Peace proportions ! In fact, I was up the entire night until 7am writing it. This sometimes happens when I’m in my zone. Time goes out the window I forget to eat, drink, take breaks, sleep and now I’m probably at risk of developing DVT from sitting in a cramped position too long. I’m worrying about that now and Googling it. That and heart coronaries from blood clots and lack of circulation. Just as well I work in the evenings and don’t have to get up in the mornings if I don’t want to. I’m sorry, but sometimes when I start writing I can’t stop, so please bear with me and take all the breaks you need to. In the last blog I talked a bit about ASC , how it affects people and I started to tell you a bit about my childhood. In this blog I’ll tell you where I’ve got up to in the diagnostic process and more stuff from childhood.
My middle name should be “Procrastination”. I wrote the last blog nearly a year ago and just didn’t get round to posting it until recently. I’ve also done the same with my ASC referral. I started to suspect I was on the spectrum about 3 years ago when I helped a male friend of mine get a diagnosis. I saw traits in him that were similar to me and looked into it further by reading about how it affects women. I read “Aspergirls” by Rudy Simone and underlined the points that were resonating in bright pink marker but soon abandoned the marker after I noticed I was highlighting just about every page in the book. I read more books and saw a couple of programmes on TV about autism in women. I’ve also in recent years met up with my friend from school who was just as eccentric as me. In fact, I don’t know how I would have survived school without her. I wouldn’t have had any friends. We kept in touch after primary school when we both went to different schools but when she moved home a few years later we lost touch and only saw each other briefly in our 20’s until meeting again recently in our 40’s. She invited my husband and me over for dinner one New Year’s Eve and I got talking about autism and she nearly dropped the dish she was serving from because she said she too had wondered if she was on the spectrum. It’s not surprising really as birds of a feather and ASC folk flock together! I chewed the issue over for a couple more years because being naturally obsessed with getting to the truth about things I wanted to be absolutely sure I was doing the right thing by going for an assessment. Also, there was the fact that I didn’t want to get yet another diagnosis that wasn’t believed by anyone..even by multiple GPs! By that I mean when I was about 28 I was diagnosed with Attention Deficit Disorder (which I’ve learned is very often present with autism). Personally I think the diagnosing psychiatrist was spot on. I have had problems with inconsistency of attention, chronic disorganisation, procrastination etc. etc .all my life but no one believed the diagnosis. I tried to explain to my then partner and my family but they either laughed it off or just didn’t get it . I tried to explain it to doctors but they just dismissed it too.
So maybe you can understand my reticence at first about asking for a referral. Plus I felt I had to do my homework and find out everything I could about ASC first. That brings me to last year when I was in the financial position to go private. Both my parents passed away a year apart from each other and I thought I’d put some of the money I was left towards getting an assessment at the Lorna Wing Centre in Essex UK. I wanted to go there because they specialise in assessing women and in particular women with co morbid conditions such as anxiety and depression. I thought going private would maybe give a more of an accurate diagnosis that an NHS assessment (which I consider to be a bit of a postcode lottery in terms of which centres in the UK have the most up to date diagnostic methods for assessing women). Privately it was going to cost around £3000 and you would have thought that if I had the cash I would have booked an appointment immediately and gone for it and got all my answers to questions that have been plaguing me for years but no. Instead I blow £2000 of the £3000 on a premium saxophone I don’t really need. As you do. (Damn that “Buy Now” button on eBay!) But music is my intense interest. I play and teach the saxophone among other instruments and am particularly obsessed with this brand of saxophone. OK I’ll name it it’s Selmer. I spent £2000 on a spare second hand Selmer. I already have a Selmer but decided I wanted a spare one for teaching. Utter madness really but not if you are utterly loopy about saxophones and music in general I suppose.
So I spend another year procrastinating with two figurative parrots on each shoulder one saying “Don’t be daft you don’t have ASC!” and the other saying “You are sooooooooo on the spectrum, just look at the evidence” and the arguing between these two sides of my mind is driving me nuts. The childhood friend I mentioned above has just got her positive ASC results from an NHS consultation (in another part of the UK to me) only last week so it’s given me a kick up the bum to do something about this. I found out there is an ASC adult referral centre (NHS) in my area which takes self referrals so I filled out the application form and also a pre screening form called an AQ-10 and hand delivered it to the centre on Sunday. You can look up the AQ 10 (autism quotient) on line. I got 9/10 .
Update – I phoned the NHS assessment centre to find out how long the waiting list is. They wouldnt tell me and could only say it was “significant”. I then found a private assessor through watching Sarah Henderickx (autism expert) lectures on You Tube. They charge about half the price of the Lorna Wing Centre. So next month after saving a little I will pay the deposit and because their waiting list is about 12 weeks I can save up the rest in the meantime. I’m just getting a bit impatient now and would rather be a little skint for a while with some answers than not. 12 weeks is still considerably shorter than some NHS waiting lists.
Another update as I’m procrastinating so much its taking me months to write this blog – I’ve decided to sell the spare Selmer saxophone!!!!!! I have a pupil who is interested in buying it after it’s had a service. The sax is at the menders so as soon as I’ve sold it I’m booking an appointment with the private centre. I’m guessing I wont be seen now until the New Year.
The problem with my assessment is I wont be able to bring along someone from my childhood who remembers my development. I have brothers but they’re not good with this sort of thing. In fact I spoke to one of them about it recently who reckons I’m just having a mid life crisis! I wish it were that easy! It just so happens in truth that the advancements in recognising and diagnosing autism in women coincides with my middle age thank you big brother! If only they had known about this when I were a teenager when things were very difficult for me maybe my life would have turned out very differently. So what was I like as a child? Daydreamy, in a world of my own, a character, eccentric. Pretty much the same as I am now! The problem with getting a diagnosis so late in life is I’m looking at my childhood now with an autistic bias and in danger of false positives or “positive bias” in the diagnostic process and that worries me a bit as I want the diagnosis either way to be as accurate as it possibly can.
Putting the “autistic glasses” on for now here are some things from childhood which could be clues. From a very young age I would rock and flap my hands whenever I was excited. My Dad thought this was hilarious and my brothers teased me for it so I think I stopped it after a while. I was highly sensitive and cried a lot and suffered from a lot of stomach aches and I remember trips to the doctor about my stomach issues. I have a particular memory of being on the doctors couch being examined and screaming the surgery down because I don’t like him touching me. I remember a similar experience screaming the house down at 9 or 10 years old when told that the doctor was coming over to examine me at home. I’d had a bad fall in the school playground the day before and had a scar all down my nose. I had a Brownie meeting that evening and I still went. They were having an Easter bonnet competition and I didn’t want to miss out. I can still remember parading around with a huge bonnet on my head with everyone asking me what had happened to my face. I must have been in some sort of delayed shock because when I got home that evening I sat down on the bed, lost control of my bowels and pooped everywhere. Sorry for too much info there! The next day I was kept off school and the doctor was called but I went into hysterical screaming at the thought of it.
It’s one thing to think that people don’t like you. It’s another to think your parents don’t like you either. When I was about 9 years old I found what turned out to be my Dad’s attempt at writing his memoirs. On the first page he’d written “I have three sons and one very wet daughter”. Cheers Dad. Not very helpful. But maybe he was right though. He wasn’t the only one ever to use that word to describe me. As an adult I wonder now what was the “wetness” he and others saw in me and I think it was probably the taking myself a little too seriously, the hyper sensitivity and crying at everything and the fact that I wasn’t particularly confident or brave. Later on Dad refered to me as a “wilting violet” when I had a nervous breakdown at age just 21. Again, not very helpful. I’m not referring to dear Father with this next statement (he had his issues and I love and forgive him) but now at the age of 50 having met many different personalities in my life I can proudly and honestly say I would rather be a wilting violet than an obnoxious opionionated arsehole.
As for sensory issues, I didn’t like certain fabrics because I didn’t like the way they felt against my skin and things like the feel of unvarnished wood in my hand would make my skin crawl the same as someone running finger nails down a blackboard. The memory of holding a wooden spoon in my hand makes me cringe even now. Oddly enough and quite ashamedly I can report that I hated the feel of my Mum’s hands.They were cold and boney and always felt really dry like an unvarnished wooden spoon and her long nails would sometimes catch on me. I also found the sound of her voice very grating. My Mum had a very strong Northern Irish almost Belfast accent which is known to be a little harsh sounding. But add this to the fact that my Mum worked as a geriatric nurse and had become accustomed to raising her voice for the hard of hearing so much so that the volume control in her brain eventually didn’t switch itself off. Sorry Mum love you dearly you know I do but you had a hyper sensitive possibly autistic spectrum child who probably didn’t show you enough love, affection and empathy due to sensory issues and confusion. Talking of lack of empathy I’m not sure how much empathy a kid should have. Kids tend to be a little egotistical and self centred generally speaking but I remember (with much shame) at age 11 trying to persuade my mother to leave her hospital bed (she’d just had a hysterectomy) and come shopping with me to buy a pair of new gym knickers for school. The reason being the ones she had already bought me were ridiculously big and baggy and would fit a baby elephant and I couldn’t deal with the taunts and humiliation of wearing them any more at my new nightmare secondary school. Not a good enough reason to drag my poor mother out of hospital I know now and I’m ashamed. So what was I? A horrid kid? A normal self involved 11 year old? Or a kid struggling to understand the feelings of others?
I was and still am the same with certain foods and their taste and texture for example I can’t stand and have an almost phobic reaction to foods that are a combination of cold slimey and savoury. Even cottage cheese makes me nervous! I hate food smears on plates and the smell of left overs on plates makes me gag. I think thats why I hate washing up so much. I still do it though (I had to growing up in a busy family home) and even had a job washing up in a nursing home as a teenager to earn cash at weekends but the smell of dirty plates has sometimes made me retch in a nearby bin. As for sound sensitivity I remember when listening to music from a very early age I could reproduce melodies I heard either with my voice or on my recorder, I could decipher the different parts that were being played by an orchestra by the different sections and when my brother was doing his piano practise I would sit next to him and correct the wrong notes. So I’d found my vocation as a music teacher very early on but only took it up as a serious career in my forties. Some sounds though would send me into a fit of crying and screaming. I remember my Mum used to play a record with nursery rhymes on it and I used to ask her to take it off before it got to Humpty Dumpty. Thats because when Humpty fell off the wall it made a really terrible sound in my ears. It wasn’t that I had concern for Humpty it was the sound itself. It filled my entire being like some giant monster was about to devour me or the world was about to come crashing down. This one sound utterly terrified me .
I worried a lot when I was a child too. After seeing a public information film which starred the Grim Reaper informing children not to play near water I was convinced he was hiding in my wardrobe and checked it every night before going to sleep. Even to this day I cannot sleep in a room on my own with a shut wardrobe. I had lots of worry phases as a child. That was my Grim Reaper phase which I suppose isn’t a phase as I still have it today but there was also a phase about being scared that burglars would break into the house and get me in the night.
I worried too about having to go to the doctors surgery (whether a trip was due or not) because it seemed whenever I went it was thoroughly unpleasant with either needles or hands poking into me-horrible! Anxieties concerning one thing or another have plagued me all my life. I think I used to wet the bed until fairly late in years too and I hated the feel of the rubber sheet under me.
I remember having a day out in Macclesfield with my family and we looked around some shops. One of them was a bric a brac kind of shop and it really stank. Mum thought it was maybe cat wee but I remember I found the smell of this shop utterly repugnant. Mum bought a gravy boat and some plates from the shop and I remember I wouldn’t eat off the plates or have gravy from the boat for years even though Mum kept reminding me they had all been thoroughly washed. All I could think of was that dreadful smell.
I absolutely hated crowded places too. Our local market was a nightmare for me as a child not just because of the crowds but I remember I hated the smells too. I would dread Mum bringing me along to the market and would cry. The word Agoraphobia translates exactly as “fear of the marketplace”. In later years I was to suffer terrible bouts of agoraphobia. Did this have its roots in childhood for me? Or roots in autism and its difficulties with the brain processing incoming information? I remember thoroughly embarrassing my mother at one particular peopley event like a fete at my brother’s school because I had started moaning and crying. I remember her saying something on the lines of “There’s Mrs so and so over there and she can see you making all this fuss. She will think you haven’t grown up at all in all this time!” I think I was a bit older at that stage and should have known better . Was I just a little overstimulated? I don’t know. My Mum always said I hated crowds anyway.
Looking at old photos and cine film for autism clues in my childhood I find one particular shot of me and my family on holiday in Wales age 6 or 7. I can very vaguely remember the holiday and being in the cafe where the photo is taken but I don’t know why on earth I’m crying because I have this massive Knickerbocker Glory right in front of me topped with cream. I mean what child in their right mind would cry under these circumstances??? My Mum is looking into the camera angrily with her legendary “Death Stare” and I wonder if I’m crying because she’s bickering with Dad. I don’t know. A formal school photo taken of me in my class at the age of about 5 shows all the pupils looking at the camera except me with my hand to my face fidgetting. Cine footage of me about age 7 my Mum and Dad and some friends of the family show me crying (I think though this was because the friends daughter was allowed to go on a ride that I wasn’t.) There’s the stone lion photos I talked about in the last blog. Basically when I was a kid I treated any four legged thing either animate or inanimate as though it were a horse. Its not really evidence on it’s own I know and I havent seen all the photos or footage but I do remember being like the kid in the film Parenthood starring Steve Martin who’s concerned about his son but can’t put his finger on what on earth is wrong with his over sensitive child. My Dad used to say to my Mum just lke Steve Martin’s character in the film “Theres something wrong with that girl”.
I mentioned something earlier about autistic people taking things very literally. I think I got some words and phrases but not others. One example of this is song lyrics. I’ve never been able to understand them. Firstly and this is a sensory thing I’ve always found it difficult to decipher the lyrics from the music and thats probably because I have this difficulty with picking out the words someone is saying when there is background noise. But there’s also a syntax element to it. A perfect example of this is a hit I loved in the 70s called Heart of Glass by Blondie. The first verse goes something like…
“Once I had a love and it was a gas
Soon turned out had a heart of glass
Seemed like the real thing, only to find
Mucho mistrust, love’s gone behind
Once I had a love and it was divine
Soon found out I was losing my mind
It seemed like the real thing but I was so blind
Mucho mistrust, love’s gone behind”
Now as a 9 year old child I couldn’t quite make out all the words but from the ones I could I thought the song was about the intricate art of glass blowing! I thought the lady had some gas and made some glass with it and out of that glass she made some nice glass hearts. Maybe this is normal for 9 year olds but I’m finding that with some songs from the 70s and 80s I’m only working out and understanding the lyrics now 40 years on! Of course I totally missed that the song is about love going wrong and being fragile but I would still argue that glass isn’t particularly fragile so that lyric is not accurate. In fact if it was made out of triple glazed glass it would be very strong indeed and actually strictly speaking no one could have a heart made out of glass anyway because it’s too rigid a material to pump and I know some artificial hearts now are made out of plastic I think I saw it on Holby City or Casualty and glass would be too heavy a material…
You see what I mean? You see why I’m going for an assessment?
By the way Heart of Spider Web would have been much more accurate a lyric. I did think “Heart of Eggshell” but I bet some eggs are tough like Ostrich eggs for example.
There’s also another song I heard from the 70s the other day and I’ve only just understood the lyrics. It’s Dreadlock Holiday by 10cc. It’s basically a song about a man who goes to Jamaica on holiday, gets mugged and then goes back to his hotel room to smoke weed. The lyric of the choruses goes something like:
“I don’t like cricket. Oh no. I love it” and “I don’t like reggae. Oh no. I love it” the last verse being “Don’t like Jamaica. Oh no. I love it”. Now I thought as a kid that this was a song about a man who can’t make his mind up what he likes because one minute he’s saying he dosn’t like cricket then he says he loves it. How can you love something that you’ve just said you didn’t like? It’s contradictory . It’s taken me 40 years to realise that he’s actually not being contradictory and is saying to LIKE something is one thing but to LOVE it is to like it even more, like Simon Cowell saying to a contestant on X Factor “I didn’t like your act I loved your act.”
Confusion. Confusion.
Remember in my last blog I mentioned that autism affects a person in terms of managing people, change and sensory issues. The above covers sensory issues I suppose of early life. As for change I can’t remember how I reacted to change. Not until about the age of eleven when I changed to secondary school and I found that very traumatic as do a lot of children I think especially when they are like I was the only one transitioning to a particular school.
As for social I made 2 friends at nursery school who went on to be my primary school friends. One was the friend I mentioned above whom I’m friends with now and the other was a very shy girl a school year younger than me who I bossed about and dominated a bit I think in retrospect. The great thing about nursery or primary is your social skills don’t have to be that developed yet and I found two girls who were are eccentric as me to play with so I wasn’t lonely at school thank God. I did get invited to other kids parties to start with but thinking back the invitations stopped probably around the age of about 7 or 8 years old. I remember being invited to one party and getting very bored and asking if I could watch Dr Who. It bothered me very much that I was missing it. The person’s Mum informed me that you don’t watch TV at someone’s birthday party. So thats probably why the invites may have stopped. I probably displayed similarly rude behaviour at other parties. Actually I remember being invited to a party where a group of us went to the theatre to see the musical Gigi. I usually love trips to the theatre but on this occasion I got really bored and was led astray by a naughty girl sitting next to me and giggled and messed about for the whole of the performance spoiling it for those sitting near us to the extent that the lady sitting behind me complained to me and I ignored her and carried on regardless. Yup the invitations stopped right there I remember now.
Play with my two friends was extremely repetitive ie playing “horses” at every single break time. The rare occasions we did do anything different I remember reenacting things I’d seen on the TV a lot and I always felt I had to be the “director” of the event ensuring that scenes for example from a Monty Python or Two Ronnies or Spike Milligan sketch were re-enacted perfectly as per script with no deviation. From a very young age I developed what appeared to be anyway quite a sophisticated sense of humour. While my classmates could laugh at a puppet show visiting the school I would laugh at the absurdity and surreal humour of Monty Python. Even though I didn’t understand some of the meanings of the words used I loved the sound of the words. The same went for Milligan. My brother gave me a copy of the soundtrack to “The Life of Brian” film which I played until it wore out. I learned the script off by heart and could recite it word perfect from any point from a very young age. We would also re-enact silly TV adverts leaving the dinner ladies baffled at our absurd behaviour.
Although I’ve never liked slapstick I’ve always loved Laurel and Hardy. They can be slapstick but I think they do it in such a sophisticated way! I remember seeing their film Way Out West. A song from the film made it into the top 40 in the 70’s and L&H did a little dance routine to go with the song. I remember pulling one poor little boy called Sebastian about the playground trying to re-enact at least some of this dance routine (I’m not good with learning dance routines) but was confused that he absolutely no idea what I was trying to do. Instead of telling him what we were about to do I just grabbed him and assumed he would know I was doing the L&H dance. He walked away and I as usual was left confused.
I think it was around the age of about 6 or 7 that I really began to feel different. My classmates seemed to learn things quicker than me and paid attention better. I thought the other girls in the class were prettier than me too and always looked neat and tidy whereas I was scruffy. They were girlier and hung about in girly groups doing girly stuff like skipping. They had lovely white teeth because they didn’t forget to brush and clean freckly faces. They were bright and good at everything they did including PE. They didn’t laugh at the same things as me or my two friends and they told me I was smelly and when we did country dancing they seemed to always know what to do next.
The story of my life. Life for me is like one great big country dancing class and everyone else knows the steps and the rules and I haven’t a clue. I’m just bumbling along or messing about with an equally quirky friend. I used humour or what I thought was humour to try and make friends and it would work for a while until people tired of it or I couldn’t keep it up. I’ve since learned you need so much more to sustain friendship and thats taken years to realise. Even now if I make a joke or a witty remark and someone laughs I wonder why they don’t necessarily want to be my friend. I have this crazy notion that if I can make someone laugh they will always like me no matter what.
I hated PE so much at school. Maybe I should have got up an hour earlier each day so I could hate it some more. At age 6 we had to do it in our knickers and vest and it felt just wrong. I remember bawling my eyes out one particular PE lesson because in my knickers I hated the way my legs looked. I was a slim child but thought I was fat and everyone could see this awful extra fat on me. I cried and cried and wouldn’t participate and the teacher got very angry with me. I couldn’t tell her what was wrong. I don’t even think I knew what was wrong. I had a similar “meltdown” age 12 in PE too. I hated PE so much, it made me feel really embarrassed of my arkward body.
I’ve never been very good really at doing things that involve moving my body in a co -ordinated fashion. As a kid I couldn’t follow a dance routine, hit or catch balls and I’d drop or knock things over. I couldn’t ride a bike or swim until the age of 11 either. As an adult I’ve self diagnosed as dyspraxic. I drop and smash ipads and phones, been through more crockery than a Greek restaurant and I can’t drive despite having had hundreds and hundreds of lessons and getting 100 percent in the theory test. One instructor took to drink and one had a heart attack after just one lesson with me! In my 30s I had a job in a psychiatric hospital as an auxiliary nurse and was sent on a course in control and restraint techniques. I worked at a private hospital so there was rarely any trouble of the physical kind. Our patients were “too posh to punch” but I was sent on the course probably as a formality. I scored high in the theory test and even came top of the class but when it came to the practical the instructor said I was the worst person he had ever taught and that I’d come very close to failing.
I tried ballet dancing but like so many things in my life I liked the idea of it more than the reality. I loved the prettiness of it, the tutus, tiaras and would play Tchaikovsky’s Nutcracker Suite over and over but I had all the co-ordination and elegance of a newborn baby giraffe with four left feet. If I was left on my own to just prance about like a loon I was ok but give me a set of dance moves and I was completely lost. Later as an adult someone talked me into going to a Street Dance class and I remember even then fighting back tears and trying not to have a crying meltdown in public as I just couldnt follow what was happening. As a child I tried 2 different dance schools but gave up and got fixated on horses instead.
Autistic people love to categorise things and although I didn’t line up my toys in rows or put my Sindy dresses in colour co-ordinated piles I did do things such as marking songs on Top of The Pops from “un” to “douze” points like the Eurovision Song Contest. I would get piece of A4 paper, draw columns and head each one with the titles Band, Song Name, Comments, Points. I get real comfort in categorising so you’d probably think I was probably a neat clean freak too. But you’d be very wrong. Categorising for me is order amongst the complete chaos in my mind. I was and still am a complete scatter brain and couldn’t organise a very happy party in a beer making establishment. My house looks like one of those houses you see in TV shows about hoarders and it’s not that I’m a hoarder or in denial about hoarding. Sure, I can throw stuff out it’s just that I’m completely overwhelmed as regards to organising stuff and I’ve read that some people on the spectrum aren’t the typical autistic neat- obsessed you see. They’re just like me, struggling and living in what I can only describe as utter squalor. I’m not proud of it and it’s a major cause of stress in my life.
Talking of order amongst the chaos I think thats why I later studied Maths to degree level even though I am a pure artsy person with no aptitude for Maths whatsoever. No aptitude just a strong interest and a need for order and to find the right answer. I find Maths very comforting in that there is always a right answer. Maths has a real beauty to it and I can look at a mathematical proof the way I would look at a painting or sculpture by one of the great masters. When I left school I got a diploma in Engineering and because I wanted to work as a sound engineer decided to do a joint honours degree in Electronic Engineering and Music. Sounds like a fun degree arseing about in a recording studio all day but it was far from that. It was basically two degrees, one in Music and one in Electronics and as Electronic Engineering is basically applied engineering mathematics it was like doing a Maths degree too. Very complicated stuff I can tell you modelling filters for example with advanced Fourier analysis and Laplace Transforms and don’t even get me started on Semiconductor Theory with the 300 plus equations we had to learn for finals. Is that yawning I can hear? Sorry I’ll move on as I’m off topic.
Often as a kid I didn’t know when I’d made a social faux pas. Stories of what I had said and did came out later. Perhaps one of the worst examples of this was when I was about 10 and maybe at an age when I should have known better? I was at a very posh summer fete in the grounds of the grand home of the local Conservative Party MP. We’re talking strawberries and cream and string quartets and local dignatrys. I was helping my Mum with the bric a brac stall and someone introduces me to the MP. Mum thought I was doing well as I shook his hand and smiled. Finally she could have a daughter she was proud of.. but then I opened my mouth to speak. I remember the fete but not this incident. I learned about this some years later. I learned that I had told the MP very matter of factly “My Dad says the Conservative Party murder people in Northern Ireland”. I was brought up in a Catholic Irish family and my Dad was always very vocal about his nationalist beliefs. Thing is, whatever my Dad said I took it as fact and I didn’t see anything wrong in talking about “facts”.
So at ten years old I’m that weird scruffy kid in baggy britches who says stupid things. I’m clumsy and gauche and awkward and local girls make fun of me because I’m still playing with dolls and toys and they call me ugly. I’m wearing big brown NHS glasses and my light brown straggly thin hair is always pulled back into a pony tail. I don’t know anything about fashion or hair styles so I don’t realise that having a fringe (or bangs as they say in the US) will cover up my massive forehead which is big enough to land a 747 jet on. I try to befriend Jane the girl who lives opposite me when I see her jumping over canes in her front yard. She like me likes horses and is doing a sort of make believe show jumping thing with the canes. I join in and I think I’ve made a soul mate. I’m very lonely because we moved to a different town when I was about 7 but didn’t change schools so my friends don’t live near. She is about a school year older than me and at first we get on. I tell her about my Sindy dolls and all the horsey equipment I have for her. She says she has a show jumper doll and horse but dosn’t play with them as such. She shows it to me and its posed by her bedside and looks like its just there as an ornament. We hang out together for perhaps a few weeks but from my adult perspective now I can see that she thought I was too immature to play with. She would constantly poke fun at me and things didn’t end well. That was the pattern when I met girls of a similar age to me even into my teenage years and beyond into university. Initially they’d be nice to me but would go off me very quickly possibly because they saw me as immature.
Even at age 10 I was so lonely I had imaginary friends and one of them was called Helen. She “lived” in one of the huge houses next to the park. Like an idiot I told Jane about this friend trying to prove to her that I had friends and she didn’t believe me. She demanded that I show her where Helen lived so we walked up to the house and made excuses why we couldn’t go in. She wasn’t buying it though I was rumbled very quickly and felt very embarrassed and idiotic. It’s said that autistic people can’t lie and thats true to an extent. In a lot of situations in my life though being too truthful has got me into trouble or tied me up in tight mental knots but as a child it was like my fantasy worlds with my imaginary pony Peanut and my imaginary friends were very real.
Things came to a head when one day Jane came over to my house and after a while I couldn’t find her. I was prone to soiling/peeing my knickers even at this late stage of childhood and I had done so that afternoon. So I went up to my bedroom sat on the floor, took off the soiled knickers and changed them but to my horror Jane had seen it all as she was hiding under the bed watching me. She laughed until she went a shade of puce and couldn’t believe someone my age could poo/pee their pants. I was mortified. But to make matters worse my Mum decided to have a go at me in front of Jane that same afternoon about something I can’t remember now but it felt like the two of them were ganging up on me. I remember just crying and crying that day until my chest hurt. Jane and I didn’t see each other any more after that other than when I joined her Guiding unit and eventually left because she and her friends would make fun of me there. Then there was the incident in which Mum thought it was Jane’s birthday so she made me go over to her house to deliver a card. Jane answered the door and was very puzzled. Her birthday was not for another six months! I bet she got plenty of mileage out of that one down at the Guiding unit!
Talking of the Guiding Association this was an endless source of frustration for me. Although I was lonely at home I didn’t want to join neccessarily for the social element. I wanted badges and lots of them. I sometimes saw other guides and brownies with badges all down their arms and I felt so jealous. I wanted the badges in their attractive array of colours and designs but I also wanted the recognition of skills that come with the badges such as music making, cooking, nature watching etc. School made me feel such a dunce so I thought guiding badges could make feel like I could achieve something. Problem was the Brownie unit I went to hadn’t done any badges for a long time and I didn’t stay with the Girl Guides long enough due to Jane and her cronies bullying me. I tried to join a different unit but was told they “didn’t like the new girl”. It’s a shame really the Guiding Association could have been the making of me in terms of getting out and about on camps and earning awards but I just couldn’t fit in wherever I went. I suppose it didn’t help when I went to my first Guide Camp in Wigan and when we were introduced to guides from other units I shook hands and went into my Eric Morecambe routine. Years later age 16 when trying to find a boyfriend but also in the hope of earning badges I joined the Venture Scouts. It wasn’t a very active unit and was more of a social club. That was ok for at 16 I was getting on with boys as friends so much better than girls anyway. To this day I still prefer the company of men for friends. I find they are much more straight forward to deal with. No badges were earned at Scouts but I did manage to “pull” at the Christmas party and get a boyfriend. Guiding Association null points. Scouting Movement douze point!
I remember after Jane’s last visit and “Knickergate” feeling that the incident and my Mum’s attitude that day simply reinforced my feelings of being separate from others. That other people were better, other people were more important, other people were more intelligent and that I was not enough.
Shame..embarrassment..confusion…anger (mostly at myself). I can name what I was probably was feeling then now but then I’m not sure I could have told you how I was feeling. I didn’t ever talk to anyone about it much apart from one particular occasion which was in retrospect my first encounter with a “head doctor”. I was about 10 when one evening my parents had invited a group of friends over to the house. One of these people was my brothers friends Mum and I got talking to her. Some autistic kids don’t handle house guests very well but I welcomed adults in particular because I enjoyed adult company and when people came to the house it put my parents in an uncharacteristically good mood. Usually they argued and shouted at each other constantly so having people over was a time I could actually enjoy some peace and learn a few things too. This particular evening I was in for a treat when I met Mrs Nelson because…wait for it…Mrs Nelson was a child psychologist! Of course i didn’t know then what that was but when she described her job to me I was utterly fascinated and made a bee line to our chaise lounge for an impromptu “therapy session” during which I told her that teachers think I’m thick and stupid, and I’m ugly and teachers give all the pretty girls in the class more attention. I think someone once did a Phd thesis on the phenomenon of teachers sometimes giving most of their attention to the more attractive looking pupils. Anyway it’s something I noticed even as a child because I liked to study people. I didn’t understand people and I didn’t know how best to communicate with them so I watched them.
And that has sometimes got me into trouble. People are fascinating to look at and observe. I try and kid myself even now that if someone isn’t looking at me they don’t know I am looking at them. Then there are the occasions when I don’t actually register that I’m staring. Autistic people sometimes can’t do eye contact. Eye contact does make me feel extremely uncomfortable at times and it feels like the persons eyes are burning into me like lasers. At other times however I give too much eye contact and thats usually when the Eye Contact Police in my brain have nipped out for a kebab. Its like the monitoring system for these supposedly automatic functions sometimes switches off and I give people either too much or too little eye contact. Sure, sometimes I can do eye contact very well and I’ve developed strategies for it ( ie by looking in one eye only for example) other times I’ve got into trouble about it. Like the time the MD of a radio station I was working for thought I was coming on to him when I was alone talking to him in his office and he made some remark to the effect almost telling me off. Sooooo embarrassing. I didn’t fancy him at all!
It was about the age of 10 that I got a huge crush on a girl in my class. She was just everything I wanted to be really. i.e very pretty and popular with both pupils and teachers alike, very bright and a really nice kind person with it. Beautiful inside and out.I knew she was out of my league in terms of us being friends so I never pestered her to be my friend I was just content with worshipping her. I used to watch two comedians on the TV called Little and Large and one of these guys used to call the other “Supersonic” so that was my nickname for her. “Hello Supersonic” I’d say and she would laugh her bright eyed and perfect white teeth laugh no matter how many times I said it and reply nicely “Hello Annie”and I was happy with that.
Ok…the only time it ever got just a bit creepy and stalkerish was when I would present her each week with an ever increasing in size medal made out of milk bottle tops and a ribbon.
Hmmm…..
But she would accept these sour smelling trinkets with such grace and a smile and that was as far as it ever got. Smiles and crusty milky medals.
Perhaps I should explain here that I got the idea from Little and Large. At the end of every show Little would stand on a plinth and Large would present him with a medal. Every week the medal got larger and larger so I followed suit with the bottle tops. Poor girl though, I have to feel for her now and give her some uncharacteristic autistic empathy. I used to present her with said medal in front of the others who sat at our table in the classroom not thinking for one minute they might react to this or that she would in any way be embarrassed. All I was focused on was my adoration. Autistic crush or weirdo junior stalker? I’m not sure what was going on here really.
So that brings us up to or round about me leaving primary school and don’t get me even started on that outdated and almost eugenic practise of the 11 plus that was in operation and still is in the borough I lived in. It was just another way for me to feel rejected and stupid. For those of you who don’t know the 11 plus is an exam which some 11 year old take in the UK to determine which school you go to after primary school. In my day (and I say this because secondary schools are now so much better than they were in my opinion) if you passed you went to a grammar school and got the best education you could get without having to pay private school fees. If you failed you got shuffled off to a Secondary Modern school and got a pretty terrible education because it was thought that there was no point in trying to educate “non academic” kids.
Talking of school but back on the issue of autism one of the things they look at in an autism assessment is how you played as a child. i.e. Did you mostly play on your own or with other children? Were you good at pretend games etc . Some of these questions I know will be hard to answer now as my childhood was so long ago. All I remember is this:
At school I played with my two equally weird friends. We played mostly at horses and sometimes re-enacting daft TV commercials and shows. I seem to remember it was all pretty repetitive though to the extent that even my odd friends asked if we could do something different one day. I think I was a bit put out. “Different??? You want to do something DIFFERENT???”At home I played on my own for most of the time unless one of the said friends came over. Then it was playing with the Sindy dolls. Can’t remember how much of this was imaginative play but what I do know is that it had to be based on reality like Sindy was a real person maybe re-enacting real life situations. I don’t think I would have been to happy if one of my friends had painted her Sindy green and tried to start an “Alien Sindy” or “Zombie Sindy” storyline. Imaginative though it would have been for her to do this I think it would have been met with first a laugh at the shock of seeing a green faced Sindy and then maybe I would say something like “But there’s no such thing as aliens/zombies”. I think I would also have felt that my friend was maybe deliberatly sabortaging the play. I’ll talk more about imagination in later blogs as lack of imagination can be one of the signs of autism. That said there are plenty of autistics who are obsessed with fantasy fiction and worlds like Star Trek and Lord of the Rings. I can totally understand that because it’s extremely stressful for an autistic person to live in a neurotypical world therefore they need that escape into fantasy.Have to say as I write this I’m somewhat confused about the issue of imagination and me. I’ve always thought I was a very imaginative person but I’m actually very polarised on this issue. On the one hand I’m a real life Walter Mitty character and always have been. I’m a chronic day dreamer and imagine myself or should I say another version of myself in a variety of roles. In my daydreams for example I have been a heart surgeon, brain surgeon, detective, MP, rock star, famous author and a myriad of others. Sometimes I can get really lost in a fantasy working out various situations in it that I have to remind myself it’s fantasy! Fans like me of the popular TV show Big Bang Theory will know that the Aspergian character Sheldon often does this too i.e putting himself into a crazy, very over the top imaginary situation then tying himself up in knots trying to think of solutions within this situation. Maybe it’s an Aspie thing. I don’t know but I do this all the time.
So I was talking about imagination and the fact that I’m a chronic daydreamer. I also love Lord of The Rings, Harry Potter etc. I love books but I don’t read enough simply because I have issues with concentration and other things which I think could be linked with dyslexia and ASC (Dyslexia runs in the family) such as understanding semantics and visual problems with the words moving on the page. I also love to watch films or go to the theatre to see a play but often have to ask the person with me about whats going on and working out characters intentions. If I don’t ask I just sit there in a frustrated silence feeling very stupid, confused and frustrated.
I’ve always had an interest in creative writing too and have had several abortive efforts in writing a novel. Maybe it’s like the ballet in that I like the idea of writing a novel more than the reality. It’s a massive undertaking and involves a lot of organising your thoughts which I find difficult and to make characters believable you have to really get inside their minds and that for me is a real struggle. A boss once told me that I seem to have difficulty seeing things from another person’s perspective. This is sometimes an autistic trait but I find creative writing helps me with this by forcing me to think out of my box. That said the novel still sits in my MacBook unfinished.
So what I’m slowly learning is that I am imaginative but with certain limitations. When I’m reading a book I find it hard to imagine what the characters look like and the scenery they are surrounded by. Tolkien describes the landscape a lot in the Rings which totally went over my head so I’m glad that I could watch the films to help with this. I read the entire trilogy though as I’m determined not to give in to dyslexia and very often there are things covered in a book that aren’t in a film version. The same goes for the Harry Potter books and films.
I have no children unfortunately. We weren’t able to have them which is heart breaking . I didn’t grow up with younger siblings either so my only experience with children is with my nephews and nieces and the music students I teach. I remember playing with my brothers kids and feeling really anxious (I hid it) because I was finding it difficult to do imaginary play. However get a game out like Monopoly or Pictionary and I’m as happy as Larry. I think thats because the games have rules and there’s an order to it. It’s the same with the music teaching in that there’s an agenda, a set curriculum, a timescale and I can make it fun within a set of rules. There is one family I go to in particular who have become very good friends with and after lesson time we play games and it’s a hoot! I even suggested the idea we should do a games tournament of boys against girls with a little trophy at the end for the winning team.
Girls are naturally good with kids right? Wrong! I’m ok if there’s a structure but failing that I haven’t a clue. I remember at the age of 16 I was with my American cousin and she was playing with two other cousins who were twin babies/toddlers. It was just us in the room and I remember feeling so incompetant. My cousin just seemed to know automatically what to do with these babies, hugging and kissing them and playing physical games but I just didn’t have a clue how to join in. I was struggling to establish a rapport with her as well as the babies. If I picked one up I would try a game like Peek a Boo but I thought “How long do I do this?” “When do I move onto something else?” “Are they liking this?” ‘What do I do now?” . Was it just lack of experience as I thought it could be at the time? Or was it my inability to play freely with imagination like someone with autism? Remember, as a kid play for me was repetitive and reenacting TV or film scripts had to be done accurately. I think if someone had suggested to me in the playground when reenacting the stoning scene from the Life of Brian film that we should include a Fairy Princess or a Unicorn into it I would have put them straight that there were no Fairy Princesses or Unicorns in ancient Judea. I’m still like that now with children (although I don’t reenact Python with them) I struggle to play pretend but can play games with rules and I can teach because there’s a structure to a lesson.
The next blog will be all about the hell of starting secondary school and teenage years (starts to tic nervously and stare catatonically at the screen).
Thank you so much for reading and congratulations for getting this far. The giant Toblerone chunks will indeed need surgical removal (see blog no 1).
All the best,
Annie
Baggy Trousers 