Registered general Nurse (UK)
Forget everything you think you know about autism. It is a wonderful, positive, kaleidoscope of neurological differences that should be
celebrated and cherished
An introduction to li’l ol’ me.
I am Nessy (short for Vanessa). I am 50 years old and diagnosed autistic four years ago. I am a proud mother to two wonderfully diverse adult autistic children and wife to an incredible autistic man. I’m also mum to ten (probably autistic) adorable but very naughty cats. I’m granny to a cat and a bunny and friend or guardian to any animal that crosses my path. I am very settled with my husband here in Belgium, where I have lived for the past 12 years. I’ve also lived in Basel, Switzerland and have been an expat for around 14 years since we left the UK for my husband’s job. The day I was diagnosed - and I remember it like it was yesterday - was the most profound and incredible day of my life, and my diagnosis allowed me to complete the last piece of a very complicated jigsaw. This is my story leading up to and beyond that day.
I have a story to tell and I am passionate that the bad experiences that my family and myself have had to endure are not repeated in others, and for the world to wake up to what we wonderful autistic girls and women can offer, given a fair chance.
My physical and mental health challenges.
I have a number of conditions including Hypermobile Ehlers-Danlos Syndrome (hEDS), Chronic Fatigue Syndrome/ Post Viral Fatigue Syndrome (CFS), ADHD, depression and anxiety. I talk more about these later as well as how researching the hEDS led me to the realisation that I could be autistic. Both my children also have hEDS and ADHD.
In recent years, my hEDS has progressed to the point where it substantially affects everyday life and I need to use an electric wheelchair. EDS is a rare, hereditary disorder of the connective tissue in the body. Bodies are made of connective tissue - it’s like the glue that holds them together - which explains the vast range of symptoms that we Edsers can suffer from. Here are just a few: gut problems, severe headaches, eye problems, joint instability including subluxations and dislocations, damaged and ruptured tendons and ligaments, pain, difficulty sleeping due to the pain and subluxations, severe fatigue and brain fog, neurological problems, incontinence, hernias, prolapses, poor wound healing and unusual scarring, blood pressure and cardiac problems, poor muscle tone, allergies and intolerances, mast cell problems, immune dysfunction, fibromyalgia…and the list goes on. It has also contributed to very painful and permanent scarring and damage from a vaginal repair operation that I had for prolapses, and which in retrospect I really should not have had done. EDS does however have some small advantages - it makes me look younger than I am and gives me soft, velvety skin and fewer wrinkles. Silver linings and all that.
The dreaded hormones.
I also have a number of hormone disorders to add to the fun mix, one of which is Addison’s Disease and this also curses my daughter and husband. This means we don’t make adrenal hormones and need to take steroids to live. In times of illness or extreme stress or crisis we have to have steroid injections. Many of my symptoms have been exacerbated over my lifetime by the stress, anxiety and trauma of not knowing I was autistic and trying to fit into a neurotypical world. As you can probably imagine, my chronic illnesses compound the difficulties I experience from being autistic and vice versa. It’s a complicated way of living!
Female hormones in particular have been a large and dramatic part of my life since the age of 14. They haven’t played nicely with my autism at all. I always had really, really bad painful and heavy periods and at some point in my young years developed endometriosis which became extensive and led to a pelvic cavity full of abdominal adhesions. However, neither conditions were diagnosed until I went to a private gynaecologist here in Belgium in my 40s, who specialised in endometriosis. All of these issues are infinitely better now following two surgeries for the endometriosis and adhesions and to have my uterus and ovaries removed and I am grateful to this doctor for greatly improving the quality of this area of my life.
Hormone issues can be a big problem for many autistic women (and those with ADHD and other neurodiverse conditions) and I wish we were allowed to have far more say over this area of our bodies. Fluctuating hormones alone cause havoc to those of us who have a need to control our bodies as much as possible, and too often the common suggested solution is to take a contraceptive pill or have a coil fitted which can make our issues far, far worse. We deserve more say and autonomy over this part of our own bodies.
I do now have a wonderful hormone doctor who treats me like the woman I am - an intelligent woman who happens to have better insight into her own unique body than anyone else in the world. This doctor works with me and we discuss options before I have the ultimate say over any treatment that I accept. She also allows me, under her medical guidance of course, to find the doses of bio-identical replacement hormones that suit me. This alone has made my life so much easier and more bearable and she has gone a long way to improve my rock-bottom respect of medical professionals. I only wish all doctors were the same.
Why I love my autistic self.
Autism has brought about many challenges for me but I would not be without it. I wouldn’t let anyone take it from me for a million pounds. It makes me who I am and I am a good person. Autism has made me the sensitive, empathetic, patient, hardworking, enquiring, philosophising, deep thinking, open minded, creative, fun-loving, compassionate and determined woman that I have become. My emotions are deep and intense. I have very strong morals and integrity. I can’t cheat and one of the most uncomfortable feelings for me is when I am wrongly accused of something. I will feel my blood rise and boil and the passion for justice that this stirs in me is fierce. Too much to bear sometimes.
This reminds me of two events in particular, when I was teenager. On each occasion, another girl accused me of something that I knew was false. It was usually something someone else had told the girl that I had said or done (as girls do) and had made the girl dislike me afterwards. To this day, silly though it sounds, I yearn to tell those girls that what they were told was not true and that they were mistaken. Whenever an injustice has been done, big or small, I get a very strong sense of needing to correct it. However, I also despise conflict and can’t argue well so I probably internalise a lot of feelings that other people wouldn’t need to.
I am a watcher of people. I love to please and I hate lies. I like to follow rules (although only when they make sense to me). I am a very independent thinker, I think outside the box and I often see things in a different way to the societal norm. I’m not generally affected by advertising or mind manipulation in its many forms and happy and proud not to be on Facebook. I am a free spirit, who hates to be confined by societal constraints and pointless norms. I’m very intuitive and although I can’t always explain my reasons for knowing something, I am mostly correct in that intuition. It’s a bit like maths exams. Do you remember when you had to show your ‘workings’ as well as the answers? That’s my problem, I have the correct answers but I can’t show you how I got there.
I’m very creative when I want to be. In times when my brain can switch off it can come up with the most amazing things. When brushing my teeth or standing in the shower, I will often have a slew of ideas popping in to my head and need to get them down on paper quickly. As I lie waiting for sleep to come my way, I can write whole chapters of books in my head or poems and song lyrics, and I may process information from conversations made several days before. Whatever I do, I attack it with 200% and for some interests I have become a self taught semi-expert.
I am somewhat a perfectionist and believe in doing something to the very best of my ability. For me, there is no such thing as a quick project or a simple project or doing something by halves, even if I want to! I go deep into things and with a lot of detail. I always look at one of my creations after I have finished it and really can’t believe that it was me that did it! I have arranged three special themed parties in recent years and what I managed to do still astounds me. I begin planning at least a year in advance and every detail is astonishing. I will go all out on the project and the end result will be something that the participants will remember for years and will guarantee that they leave with smiles on their faces. I am really proud of achievements like this and although they take a lot out of me, I know that it’s my autistic mind that makes them possible.
I also seem to be able to teach myself anything I really want to. (At least, for as long as it interests me!) My intense interests come and go - sometimes lasting for years, sometimes only a few months. Some I go back to, some remain for ever and some just fizzle out to make room for a new intense interest. I will have several books and magazines on the go at a time - usually a fantasy book as well as a book or two about autism.
I don’t think I can possibly live long enough to experience everything that I would like to. I will also find ways to do things that I otherwise can’t or shouldn’t be able to do. My dad would do this also and my mum always said, “Where there’s a will, there’s a way”. I have a great deal of tenacity and always seek to right wrongs where I find them. I am always protective of the underdog. I’m stubborn and fiercely independent too. Should this be in the ‘downsides to my autism’ section? Nah, I see it as positive. Mostly!
I do tend to take over multiple areas of my house with my many interests though, much to my family’s frustration! It’s a bit of a shame that I can’t live as freely in this respect as I would like as I love to have multiple go-to areas to choose from - like a smorgasbord of hobbies. One of my big and long term hobbies is crafting, of one kind or another. I have a lovely pink craft room, full of ‘stuff’ all colour co-ordinated and in its proper compartment. In fact, in times of stress or when I have long periods of not feeling up to crafting itself, I will spend hours instead, organising the room or just looking at my collection of bits and pieces. This gives me much joy and comfort.
I also feel a certain amount of guilt though, because sometimes I buy items with the best of intentions, only to get sidelined into a different project leaving bought items that never actually get used. But strangely, I just like having them. Not in a hoarding kind of way, but in a collecting way.
Some more of my many interests over the years include keyboard and guitar playing, gardening, studying and then teaching English as a foreign language, card making and scrapbooking, studying German, Dutch and French languages, medical research, nutritional studies and other health related research and singing / song writing. I have performed both alone at Brands Hatch and in a small band. We really weren’t very good though I’m afraid to say. I could sing but due to my (then undiagnosed) muscle problems, my voice didn’t hold power for very long at all. Yet more interests include autism (of course!) and neurodiversity research. Oh, and cats. You would have thought that having ten cats would be an indicator of autism and written into in the DSM-5, wouldn’t you?
I’m a bit of a glass-half-full-Pollyanna kind of person - the complete opposite to my husband and we often have positivity-negativity battles over things. Neither of us win as we are both set in our thinking patterns. I also pride myself on trying to better myself continually. I don’t mean in terms of status or money or anything like that, but in terms of being the best person I can be. I can be very fixed in my views but I really try hard to see other viewpoints and try to work out what makes people behave in certain ways. And if I’ve got a bad habit or bad thought pattern I always try to change that to a more positive one. It’s a work in progress!
I am musical and have a good ear for pitch, harmonies and rhythm. However, I struggle to remember words to songs or even comprehend them when I am listening. My musical brain takes over and I can repeat back a tune to you after listening just once. As for the words, however - I just hum them or make them up! I also have a constant juke box playing in my head. I am never without my little friend Mr Earworm. This rather irritating and cheeky little chap ensures that wherever I am and whatever I am doing, there is almost always an accompanying soundtrack to my daily life (often on continuous replay), from the minute I wake to the second I fall asleep.
I am also extremely proud of the fact that I am loyal and a good keeper of secrets. However, I don’t forgive or forget easily and find it very hard to forgive people I trusted if they turn that back against me. Once that trust is broken it is almost impossible to get back. I hate gossip and bitchiness and struggle to have anything in common with allistic women most of the time. This is one of the key factors that has prevented me from being part of a group of girls or women. Something that no longer bothers me at all, but as a teenager and young woman, desperate to ‘fit in’ this was clearly a struggle.
I love pink. Love, love, luurve pink! And pastel colours. But always pink. Since our diagnoses, my husband I gave ourselves ‘permission’ to have separate bedrooms. This has been a revelation. Why didn’t we do it the day our children left home? I do need a whole double bed to myself anyway due to my hEDS and all the pillows and soft things I need to keep me comfortable and prevent shoulders popping out. I also need darkness and silence - two things you don’t get when your husband is a world-beating snoring champion and likes to read on his phone into the early hours. (However, I must confess, my snoring abilities are rapidly catching up!) We are fortunate to have the space in our house and now our bedrooms are completely different. Mine is all pink and fluffy and his is all …well…weird. But we love this and it has made a huge difference to both of us having our own individual space.
I love to wear colour co-ordinated clothes and accessories (not always pink) and people have often commented on this. I don’t like expensive labels but I love to have new clothes to choose from. It is all about the colour and comfort for me. I like clothes shopping on my own too but I can’t bear shop assistants hovering around me giving me advice. I know what I like and what suits me so I’m in and out of the shop in as little time as possible. Online shopping is even better!
A little word about stimming - and I’m putting it here in the more ‘positive’ section because it is something that feels positive to me when I do it. In order to help me relax, self-regulate or concentrate I have a few, not too obvious stims such as hair twirling, rubbing a nice scented hand cream into my hands and nails whilst massaging my fingers; digging my nails into the sides of my finger nails and wiggling my toes. I am also a fidget, but this is worse these days as I am never comfortable! Other stims I like to do but don’t often feel free to are clicking pens on and off, drumming my nails, rocking, bouncing, hand flapping, making noises with my lips, and playing with my toes. Yep, that last one isn’t popular at all.
My autistic challenges.
There are some aspects of my autism that I find really difficult to deal with. For example, I am painfully sensitive to other people’s emotions and moods and I can’t bear to see animals or vulnerable people harmed in any way. I struggle to watch the news at it affects me too intensely and I simply can’t cope with the emotions it causes. I am a highly sensitive person in general and take things to heart way too much. I cry at the silliest and most inappropriate things, such as the wedding of a complete stranger. I’m even sensitive to my own tears! Crying gives me really sore eyes and nasty headaches.
I am able to hyper-focus on one thing if I am really into it (such as writing this!) but in doing so I often forget to eat, drink or perform other daily activities. (Hmm, perhaps that noise coming from my tummy right now is hunger?) I cannot switch tasks and interrupting one of my long hyper-focusing sessions is not a good idea. It will result in the appearance of the snappy turtle. These times are when I am at my most creative and I simply loose too much if they are interrupted in any way.
I am rubbish at maths by the way! Just thought I’d mention that. But even basic calculations which would normally be simple for me, become impossible tasks when I’m under even the slightest hint of pressure, such as someone simply waiting for me to answer. There are many myths about autism in general that need to be binned. I’m not a savant, I don’t have a special ability, I can make eye contact (even though I can’t concentrate when I do and really prefer not to) and I can function in society, albeit at great cost to my health and sanity. I am intelligent but I do not have a high IQ or even a basic memory for names and facts. I do not have a superpower!
I am a big kid at heart with a child-like sense of humour and since my diagnosis this side of me has been able to come through more and more. I get enormous pleasure from the simple things in life such as a flower, a bee, a drop of rain, a Disney movie or a puppet show. My sense of humour is a bit unusual. I can sit, neutral-faced through sit-coms and comedy shows while those around me are splitting their sides laughing. But the tables are turned when we watch ventriloquist acts with animals and toys, or a funny animation.
I find it highly amusing to draw faces on fruit to later be discovered by an unsuspecting family member. Or leave a toy peeping out from behind the pots and pans, or hanging from a lampshade. I can make children laugh easily with my exaggerated expressions, puppet toys and silly voices. These things tickle me. I recently went to Disneyland Paris, where I was allowed to be a total wide-eyed kid for a whole four days. I was even allowed to buy and play with a bubble gun. Woohoo! My, how I’ve gone up in the world!
Like many on the spectrum I need far more downtime and alone time than allistic people. On the up side of this though, I am very happy to spend time in my own company. Lockdown for me was an anxious time in many ways and very emotional because I could see others suffering and the world was in such a bad place. But it was also pretty easy for me personally (and my husband) to stay at home for all those weeks. It meant I could avoid face-to-face contact and do my own thing. Not difficult things for me at all.
Social interaction is exhausting for me for many reasons, not least due to having to constantly mask and monitor my own tone and responses and organise my thoughts, whilst at the same time assessing the other persons expressions and meaning. This comes about as naturally to me as streaking naked through a football match. I’m poor at getting my point across verbally, even when I am semi-expert in that subject. Many times I simply end up not speaking at all. I would find it easier if I could write my answers down first, in bullet point format and then reply! I’m envious of people who can just string a cohesive sentence together with ease and never get lost if someone interrupts them mid speech. It’s a skill that amazes me.
I have also noticed that I find it much easier to listen when I have my eyes closed or am doing something repetitive such as stimming, knitting (not a favourite hobby unfortunately), colouring or playing a non-demanding game on my phone. Two way conversations are very difficult. I am a good listener, mainly because I am such a poor talker! If I talk I forget the main point of the story or I miss bits out, or get lost mid sentence. It’s exhausting. But ask me to talk to an audience who can’t talk back and be able to prepare my notes before hand - that’s a doddle! The same applies to performing. I’m not the extrovert that my performing and acting abilities lead others to believe. In fact I am very much an introvert.
One other strange aspect of my autism is delayed processing. Sometimes I don’t process conversations immediately but rather several hours or even days or months later. I recall one lunch with a friend. She was quite a talkative friend and she cracked a joke about something. In my effort to try and keep up with the conversation and not lose track of what I was saying, I missed her joke. She said it again a little later and I missed it again. I must have seemed rather rude or odd. But the reason I know I missed the joke isn’t because she told me. It’s because I processed that part of the conversation several days later, when my brain had the space to do so.
I’m really not a fan of groups of women. Did I already mention that? I find a lot of women bitchy and two-faced and judgemental and really not fun at all! On the whole I’ve found autistic women to be much less so and we seem to just get each other. Over the years since finding out I am autistic, I have successfully managed to cut ties with ‘friends’ who are less understanding and accepting of my true personality and nature. I now only have a few truly close friends who are all either autistic or have some neurodiverse traits which I am able to connect with. And many of my good friends are just plain querky like myself - you know who you are ;-)
I can’t bear small talk and formal dinners are an absolute no-no! I shiver at that thought. I have, like most people, been forced into these situations in the past and have taught myself many strategies in order to cope. These include: finding pets or young children to entertain, doing the washing up, checking out the garden, spending a lot of time in the bathroom, turning the conversation more to my liking (cats), asking lots of questions as people seem to like talking about themselves, even if it bores me half to death, or the all time favourite - high quality acting. I can be a pretty good actress when I need to and, through necessity, have had lots of practice. In recent years I have been able to divert the conversation towards my (limited but exciting) acting experience which has been very helpful on several occasions.
Fun evenings playing board games or other activities are more my thing. None of that Trivial Pursuit malarkey though thank you! At quizzes I will be the one who gets the most obscure questions right causing everyone to stop and stare at me with amazement. Need someone to name all of Santa’s reindeer? I’m ya gal! Need to name the colours of snooker balls in the order they must be potted? I know that one as I happen to know the chorus to the 80s Chas & Dave song, Snooker Loopy. It will also be me who knows that random fact about a wild animal or aspect of nature that no-one else has ever heard of. I’m rather good at designing my own quizzes for people which tend to be a whole lot of fun! One of my less useful talents is coming up with a song for every situation. Whatever you talk about, I’ll have a song for that, much to my family’s long suffering annoyance.
My brain’s processing is slow and clunky. It doesn’t fire on all four cylinders. Imagine your computer’s fan whirring away loudly and at top speed trying desperately to cool the processor down, which is struggling with all the tasks and open windows it is currently having to deal with. This is my brain at the best of times.
One thing that my family find quite amusing about me is that I get celebrities muddled. For example, back in the 90s when Blur and Oasis were at the height of their popularity, I could listen to their songs and not know which were which. I could tell them apart if I could see them, but otherwise I always got the songs and bands muddled up. The same thing happened later with Evanescence and Anastasia. Completely different to each other in many ways and yet because I had started listening to their albums at the same time, I got them muddled up and still do to this day. The same applies to actors - Julia Roberts and Sandra Bullock. How can I confuse them, you ask??? It happens all the time and is always sure to raise a giggle in our family. It’s as if, when I was introduced to two people, the wires in my brain got crossed and from then on, both people were inseparable as difficult identities. Very weird!
My auditory processing is especially poor and this affects my everyday comprehension of speech. I wear hearing aids to help me recognise speech in noisy environments. Background noise is always foreground noise for me and in groups of more than one or two people I struggle to follow the conversation and know when to interject. I detest phone calls and much prefer to use emails and phone messaging. These allow me much needed processing time.
This problem greatly effects my attempts to learn foreign languages. Even in my own language I would like the world to speak slower and with pauses between each sentence for processing time, so in a foreign language I really, really struggle. I have spent much time contemplating why I struggle so much in listening tests in my language classes. Once diagnosed I was able to see that the methods they were using simply didn’t work for me at all.
For example, we would be expected to watch a short video clip of a news article or similar. We would get 2 or 3 opportunities to watch and listen and at the same time write down the answers to a series of questions. Despite my good results in written tests, I never did well at these listening tests. I can see several reasons why:
Firstly, there were the distractions from the other people in the class, the noises, the smells, the light or lack of light, other nearby classrooms, road noise, buzzy lights, coughing, pens scratching, people breathing, children outside… Then there were other distractions on the videos themselves. There were often subtitles in a different language - these would distract me. Fun things happening in the videos would distract me. Oh look, a cute, ginger cat in the background. Ahhh. What a pretty pink coat that lady is wearing…what beautiful scenery…SO many distractions.
Another problem would be that watching the video and listening at the same time would conflict for attention in my brain so I found closing my eyes and just listening easier. But then I would miss the answers that were purely visual. (I know, who designs these things?)
The next problem was writing the answers, or even just making notes at the same time. Again, there was a conflict of interests in my brain and it simply couldn’t do both. Remember, my processor chip is a few generations behind other people’s. The advice for this problem was to just watch the video and write afterwards. Unfortunately this didn’t help me as my working memory forgot anything I did manage to learn from listening, the second I picked up my pen. It would have been more helpful to play a short clip then pause the video, allowing time to answer the question relevant to that clip before moving on.
The third problem was the order of the questions. Sometimes they followed the order of the necessary scenes in the video. And sometimes they didn’t. This would completely break me. I could read the questions through before watching the video, but I wouldn’t remember them. As the video progressed, I had to read the other questions before I got to the relevant one, by which time I’d forgotten the answer. I often felt that the tests were actually a test of our memories and patience, rather than language itself.
And the final problem, bearing in mind that all these issues are on top of the difficulty of trying to understand the language in the first place, was the pressure. There was a time limit - pressure. It was a test - pressure. We were only going to get 2-3 chances at getting the answers - pressure. Stress and pressure = brain shutdown.
My poor memory for things that others remember easily is a big frustration. I am ashamed to admit that I don’t even remember important milestone dates and times for my children, stories I’ve learned about my relatives or their geneology. I do, however, recall details that are, more often than not, useless. If ever I was a witness to a crime scene I’d be useless at describing the perpetrators faces, hair, clothes or anything else. These challenges are embarrassing and difficult to cover up and it’s hard not to beat myself up about them or to tell myself to ‘try harder’.
I struggle with recognising faces. I could sit with someone every week in a language class yet not recognise them in the street - especially if their usual hairstyle had changed. Watching films is always interesting as I won’t remember who the characters are. If there are several male roles introduced for example I will confuse them all and spend the entire film asking my husband if that man is the protagonist, the father, the boyfriend or whoever. He will now patiently repeat who they are several times for me, as well as answering my question, “have I seen this film before?”
My working memory is very poor and often makes me seem far less intelligent than I actually am. (If only I could have a euro for the number of times people have expressed surprise when they suddenly become aware of my intelligence or knowledge.) If someone asks me to write down a number for example, unless I have a pen and paper ready to go and in hand, I will forget what was said before it makes it to the paper. If the pen is ‘off’ or has a cap on it, the action of clicking the pen ‘on’ or removing that cap will interrupt my processing enough to forget what I was going to write. Most frustrating! Imagine then, how difficult it becomes when someone interrupts a conversation or action. I need to start again from the beginning and in a conversation, whatever I was saying is lost.
I am a real home loving person. My home is my sanctuary. I need ten therapy cats because one isn’t enough, right? When I’m not home I find ways to comfort myself and lower my anxieties. My wheelchair and adapted car both have names and I talk to them as if they were friends when I need to. My cars have always had names and become my best friends in times of stress. (Such as being stuck in my little Fiat 500 in the middle of a muddy field in the rain!)
We have a healthy collection of cuddly toys peering down on us from around the house, all named and part of this crazy family. These things give me comfort and joy. Wherever I go now I keep my sensory and comfort equipment with me at all times - noise cancelling headphones, miniature soft toy, scented tissues, natural lip salve, water, phone charger, hand gel (pre-Corona), sun glasses, moist toilet tissues, (yes, these ARE essential), list of important phone numbers, soft scarf, pain killers and drugs and a few other personal comfort items.
I get very anxious and stressed when plans change. I plan to the nth degree including anything and everything that could possibly go wrong. I need to be in control of myself and things around me. If a bus or a train unexpectedly changes the route or breaks down, I find this very distressing and difficult to deal with and I will no longer be able to think clearly and rationally. I remember a flight being cancelled once when I was on my own and we all had to get off the plane and be herded into a hall for some hours. This was horrendous for me and I really just wanted to curl up in a corner in a ball until it was all sorted out.
I also need to know exactly where I will be able to park before I go anywhere and I will always use a satellite navigation device when driving or in the wheelchair, to prevent anxiousness or disorientation. In fact I usually have two systems! One is a back up should the first one fail. Belgium is renowned for its diversions. The signs are bright orange and always fill me with dread as even Mrs SatNav can’t help me out with these. Often there will be more than one of the dreaded orange pointers, with one diversion pointing to another and all will usually involve a long, convoluted route which is bound to get me lost. This is when talking to my car really kicks in.
Public transport and crowded public places are difficult as I find them overwhelming, disorientating and very tiring. They are also full of smells and horrid lighting that steal all my brain functions. I prefer to drive but will only use car parks that are easy to navigate and that I know well. I get anxious in new and unknown car parks and places. For example, if I go to town I will always park at the most accessible, simple car park that I am used to - very easy car parks that I know well, where all floors are a simple square or rectangular shape and have a lift. I know my way around them and they are well lit. If I can’t park easily close to the place I need to go, I simply won’t go!
This reminds me of a term I coined whilst trying to navigate one particular car park. It was pre diagnosis and I was well known for my poor skills in noticing signs, even important ones. (With the exception of the orange diversion ones!) I could never see the sign I wanted to - be it the exit sign or the floor level sign, toilet sign or lift. The more signs there are, the more I just can’t see the one I need. It’s as if all the signs are shouting at my brain at the same time, telling me to notice them, “Look at me! Look at me!”. As a result I notice none of them. I called this sign-blindness. It was meant to be tongue in cheek but I honestly now think it should be a real thing!
I, like many autistic folk, am sensitive to various materials. I’m most comfortable wearing pyjamas all day. I detest corduroy (with a vengeance) as well as some velvet textures. All my clothes, towels and bedding have to be of a particular texture and I’m even fussy over different types of fleece material. I can’t bear tight or restrictive clothes, wrinkles in socks or clothes labels. Socks also get kicked off at the end of the day to free my toes. Don’t get me started on underwear!
Artificial lighting tires me out very quickly. I need lots of natural light to see and paradoxically, I am also sensitive to sunlight. Supermarkets are horrific places with all the bad lighting, smells and noise and people…Ugh. I do love bright, glittery, colourful lights such as fireworks and laser shows and when I win the lottery I will be creating a blackout room filled with such treasures!
I’m extremely sensitive to noise too. Motorbikes, lorries, dogs barking, helicopters and screaming children hurt me and make me want to run away and hide. Those awful hand dryers in public toilets are p.a.i.n.f.u.l. Unwanted noise drains my batteries quickly. I use noise cancelling headphones over my hearing aids which does help a lot.
I’m also very sensitive to smells. My husband says I have the nose of an elephant! Smells irritate my brain and compete for my attention, just like all my sensory sensitivities do. I never go through the perfume section of a store and if someone wears a perfume or aftershave that I don’t like or is simply too strong (i.e. more than one molecule), I will not be able to concentrate. I may also get a headache or feel nauseas. Smells in public places are a big deterrent and why, oh why, some bright spark thought that installing stinky air fresheners that spray when you go into a public toilet were a good idea, I will never know. My husband is under strict household laws relating to his aftershave brand and quantity and it’s really rather limited for the poor chap. As for travelling together in the car - best not use any at all if you would like a peaceful and complaints-free journey.
To the outsider, my organisational skills are fabulous! Want a themed party that goes completely over-the-top in every way and is as imaginative as the best fantasy film? I’m ya girl! Want to go on a trip and need everything organised down to the minutest of details? That’s a job for Nessy. Need someone to keep on top of four household members’ medical appointments, medication lists, weekly tablet dispensers, symptom tracking, prescription ordering, supplies and stock levels? Piece of cake.
Yet it isn’t really a piece of cake. In order to do these things I need lists of lists of lists. Lists everywhere - by my bed, in the shower, in the kitchen, the bathroom, the garden shed and everywhere in between. Files of lists, coloured pens and sticky notes galore. This is how I do all these things so well. It doesn’t really come easily and naturally, but I’m good at it because I’ve had to be.
Many people would think I’m over the top in the way I do things, the time I spend doing them and the detail I put into them, but many others have enjoyed the fruits of my labours and are often in awe at what I can achieve. As am I! One word of warning about sticky notes and cats - we have one or two cats who are particularly partial to the tantalising taste of the glue on sticky notes. So much so that one whole sticky note could actually be ingested in a few brief seconds. There goes my important, not-to-be-forgotten, never-to-be-seen-again list.
My biggest frustration of all is that I suffer severe brain fog, frequent headaches and constant chronic fatigue. These are the banes of my life. This is due to a combination of my autism and other physical conditions. The most frustrating experiences are those that stop me being able to remember the facts and information I spend so much time learning. By rights, I should be a walking encyclopaedia, ready for a spot on Mastermind. I should be able to quote all the reams of research I have read and with all the hard study I’ve put into learning languages I should be fluent in both French and Dutch by now. I should have a degree in biochemistry and cats. Definitely cats. This disabling and annoying problem has been the bane of my life since my early 20s and sadly affects my quality of life considerably. However, those who know me well are able to appreciate my efforts and knowledge, even if I can’t always put it into words.
My story - the early years.
As I child I was super active - born with ever-ready batteries! I would dance and perform acrobatics anywhere and everywhere. In a desperate bid to use up some of that energy and save the household furniture, my parents sent me to dance classes. It was a toss up between that and gymnastics but the gymnastics came into good use in the school holidays when dancing was off. A friend of the family donated an old double mattress for me to jump and somersault on in the garden to expend yet more energy and I think that was a godsend for my mum for the times when she couldn’t take me to the beach to play on the trampolines there. I had an enviable collection of active toys to expend still more energy on, from stilts and space hoppers to hoops and majorette sticks but what I enjoyed most was creating dance and gymnastic routines in our beautiful garden surrounded by my parent’s roses.
Even though I was actually a shy and quiet child to anyone who didn’t know me, I was also a natural performer, right from a very young age. I loved entertaining people and being on stage and would happily tap dance for elderly people on the peer at the coast where I grew up. Dancing became my life - ballet, tap, character, modern and national - I took classes most evenings after school and all day at weekends. I loved to choreograph dances too and won several awards for my choreography. During this time, my life - and by default, those of my parents and brother - was largely taken up by classes, shows & competitions and I loved it.
When at home I was a loner, but very happy in my own little world. This also helped me to survive our dysfunctional family life to some degree. My parents were never in love and spent the best part of 18 years hating each other so it wasn’t a happy home. I would spend hours either in my small and very pink bedroom ( I blame my parents for my pink obsession) or sitting in my tent in the garden. I loved reading and escaping into the fantastical world books could offer me and was reading independently at a very early age. Enid Blyton, Blackberry Farm and Ladybird books were what I loved to read over and over and was a member of the Young Ornithologists Club for a while. I still adore nature and wildlife to this day and Chris Packham, who came out as autistic soon after me, is one of my biggest idols.
My love of music developed from an early age as I was given an electric Bontempi keyboard which I taught myself to play, by ear only, to a basic level. It had little black and white buttons on the left hand side which, when pressed, played a single chord. Chords are made up of two or three separate notes - and by pressing these buttons I could then work out by ear which notes were making up that chord and would teach myself, by ear alone, to play them on the keyboard keys. As I loved Christmas songs and had a little book of the words, I taught myself to play these and added the chords that sounded right. I turned out to be quite naturally talented in this respect as well as in rhythm and wish I had had also learned to play the keyboard or piano properly. Despite not doing so, these instruments always relax me enormously and to this day I find it hard not to walk past a piano without playing my very basic arpeggio version of Streets of London.
I was also able to teach myself songs on the guitar following a few lessons at primary school. I later tried to learn the clarinet (I wanted to learn the flute but it wasn’t an option) but I absolutely hated the feel and sound of the reed in my mouth. To this day that thought makes me squirm. That was clearly one of many strong sensitivities that I had - alongside the squeaky teeth sound of a girl who sat next to me in assembly. Whenever she spoke or sang it was like scraping nails down a chalkboard for me. No one else seemed to mind but I would have given anything to have moved to the other side of the hall. Speaking of assemblies, I also couldn’t bear the feel of the sheets of paper we had the words to the songs printed on, although I adored the melodies of those songs and hymns - something I still enjoy to this day despite not having any interest in their religious meanings.
My other main interest as a child was dolls. Oh, how I adored my dolls and teddies. They were my best friends. My cuddly companions were a huge part of my life and they enjoyed their own gymnastics and dance classes, restaurants, tea parties and hospitals, to name but a few! They wanted for nothing! Everything was always pretty detailed, from the miniature plasticine food for the restaurant to the nursing notes at the ends of my dolls’ beds. When my mum had to take me shopping or anywhere else, I wouldn’t walk anywhere unless I was allowed to take my doll’s pram or pushchair with me. My huge baby doll Susie had her very own wardrobe of clothes, nappies and accessories. Susie would enjoy bracing trips to the beach with me and a ‘swim’ in the cold English Channel. I could have happily continued to play with my dolls well past the age that other girls had lost interest in such games.
My mum used to say that I could never be bored and I was always very happy in my own company. I would invent games, make realistic libraries and club membership cards - mainly for my dolls as I couldn’t seem to keep friends interested. Looking back, I think I probably came across as rather bossy and controlling. I had little common interests with other kids of my age either and ‘hanging out’ or talking about things I wasn’t interested in was really very boring. I also knew from a young age that I wanted to either be a nurse or an actress and ended up doing a bit of both.
I remember being very homesick as a child on the rare occasion I had to leave the safety of home. I still feel that now actually. I don’t like staying in other people’s homes. I guess it is the familiarity I miss, but I would rather stay in a hotel on my own. Neither do I really like having other people stay in my home. Even if I love them or they are close friends, I just don’t like it. I don’t really have the words to explain why this is. It’s just how I am.
I am certain now that my dad was most definitely autistic, although it wasn’t until I was diagnosed late in life that this finally became apparent and he was never actually diagnosed. Until my diagnosis I could never really explain to people how difficult it was in our home. My dad’s behaviour was an ever present stressor. There was no description that ever seemed to fit. All we could ever say was that he was ‘difficult to live with’ had a ‘very short temper’ when in fact, he could be utterly foul to live with, much of the time. Unless people lived with us they could never really understand the difficulties this caused our family and in particular my mum.
Living with Dad was like living on the edge of a cliff, trying not to slip over. He had very little patience and would blow up over the smallest things. One of the most traumatic experiences of my childhood was when my dad would “help” me with my maths homework. He would buy these workbooks from WHSmith and the books were called Maths at Work. I wasn’t as quick at maths as he would like and his frustration would always end up with him shouting in my face calling me stupid and thick. I know that my Dad would regret this terribly after and I know now that it was just pure autistic frustration. This would boil over often in everyday life.
Another example I can remember is when Dad would be watching the news. He would sit tensed up, on the edge of the sofa, his brow furrowed and his eyes screwed up in deep concentration. No one was allowed to cough, sneeze, interrupt or even breath too loudly as he would loose his temper. He was clearly struggling to listen to the TV and trying to block out the background noise of his family home.
My dad had incredible skills too. He was an incredibly intelligent, well read, loving, caring, deep thinking, talented and hard working man. He was able to teach himself anything he put his mind to. He was brilliant with his hands, he wrote magnificent poetry and limericks. He had a wicked sense of humour. He taught himself many things including Russian. He started up the first trades union at his workplace and was very politically active, even running for local councillor once. Like me, he had a very strong moral compass and was the first to offer to help those less fortunate than himself.
Dad needed routine and structure and for everything to be in its place. He grew prize winning flowers and vegetables, which were protected and perfected as only an autistic person can. He won many first places for these and alongside my mum kept a very well stocked vegetable garden to compliment the best roses and flowers in the street. He had an allotment too and I guess that is where he found his much needed solitude.
My dad loved me deeply and that was always very apparent. He encouraged me in whatever I did, especially my love of books, dance and music. But being undiagnosed autistic bought a huge toll to our family life and I believe also to his personal life and health.
There is a strong possibility that my mum was also autistic. I see many signs in her now, looking back with the knowledge that autism in females often presents so differently to males, but I will never be sure. There have also been other members of my family who I now strongly suspect to be on the spectrum too.
At primary school I was a pretty good student. I was liked by the teachers and loved to please and do well. My reports did often comment on me being either too quiet and not asking enough questions, or being too chatty. I do know that I never achieved what I felt I should be able to and that something was always hindering my processing and memory. I would prefer to go to lunchtime clubs rather than play outside with the other kids and I developed a very close bond with my last primary school teacher, Mr Lorimar. He seemed to sense the good and the sensitivity in me and really appreciated my musical talents. I was always acutely aware of who the popular girls were, even from a young age. And it was never me. But I don’t think it actually bothered me too much.
The move from primary to secondary education.
At the age of 11, I took - and failed - my 11+ exam. This was a critical selection exam which involved a lot of stupid (in my opinion) IQ type questions which I was rubbish at. I failed, so my first secondary school was a secondary modern school rather than a grammar school, which was where you could go if you passed this exam. This would have limited my later exam options, but I was very fortunate to be one of only two girls to get moved to the grammar school at the age of 12. I was bullied most at the secondary modern school where I seemed to stick out like a sore thumb. Grammar school gave me a little relief from this to some extent but I was still seen as a jolly good opportunity for the bullies there.
At the age of 12-14, like many spectrum girls, I began to find life much, much more difficult. I couldn’t hide in my sheltered world of dolls, books and fantasy any more. School became harder. I always had to work harder to remember anything I learned and there was so much to learn. Social rules became a problem. Girls were scary, bitchy, two-faced, gossipy things with unspoken rules and strange obsessions about things I didn’t understand. This was a new club that I had to be a member of yet never understood the rules of membership. Life as an emerging adult brought with it so much pressure and uncertainty.
I never felt comfortable with other popular girls of my age. Instead I found more solace with the other “oddballs” at school. I hated boys with a vengeance too though, until my teens when everything changed. My best friend at secondary school was a boy. He probably isn’t aware but he was a large part of what kept me going at school and the mix tapes we shared gave me moments of comfort at home too. I didn’t have to try to be something I wasn’t or try to follow unspoken rules with him. He made maths classes bearable and we had great fun in cookery classes together. We still keep in touch to this day but he is the only school friend I do keep in touch with.
I was also acutely aware at this time of how unhappy my home life was for my parents and brother. It had never been a happy home and this became more and more painfully obvious as I grew out of the safety of my childhood.
It was also around this time that I first noticed signs of problems with my physical health. My muscles were not keeping or developing their strength as they should have been and this was becoming obvious to me as I had always been one of the top performers in my dance school. I was also ashamed and embarrassed at every new sign of puberty and I became less and less confident in my dancing life. Regrettably, at the age of 14 I gave it all up as I wasn’t enjoying it anymore and I had so many other things to struggle with. School, girls, boys, home life, periods, life… Oh, the woes of teenage life.
I was still a hardworking and keen student at secondary school but I seemed to have to use far more effort and energy to keep up than my peers did. Despite my apparent intellectual ability, under the surface I was paddling at top speed to keep up all the time. This is exhausting and takes a huge toll on you as the school years pass. I studied very, very hard for my O’ levels and had to revise far more than my peers in order to retain the information I needed to. One memory from this time is of me playing the same 3 pop songs over and over again on my record player during this time between study sessions to help me through. Too Good to Be Forgotten by Amazulu, Run Wild by Barbara Streisand and one other, that I have momentarily forgotten! As a result, I managed to get 9 GCSE O’ Levels, which was pretty incredible in those days and was purely a result of hard work and determination - one of my top autism skills! My more intelligent friends fared less well on the whole.
I was teased and bullied at all stages of school until around 15 or 16 when I discovered that I was getting along very well with the boys in my year and that this was somehow saving me from the worst effects of the girls. With girls I preferred to have only one best friend and would be devastated when she would want to be close friends with another girl. I was told I looked “snobbish”, despite being anything but and until the age of 14 I was always out of fashion, clothes wise and I didn’t have a clue about pop culture the way other girls did. It was at this point in my life that I really noticed a difference between me and my peers. I felt different but had no idea why or how. I just didn’t seem to fit in.
Off into the big wide world.
At the tender age of 16 I was ready to be Miss Independent and leave home. By this point my parents were waiting until I was 18 to get a divorce so I felt I had little to lose. I was always rather an independent little thing and despite my poor social skills and other difficulties I was very mature in many ways. I’d had enough of school and chose to continue learning social care at college instead, where I also gained a tenth O’level in sociology.
I was living in and looking after a family member’s house so rent wasn’t a problem to begin with but in order to earn money for living I worked as a cleaner at the weekends. This was all much to the wonder of my college peers who were all still living at home and financially dependent on their families and this actually gave me some sort of elevated social status amongst the girls! I think I was considered a sort of trendy rebel as a result, which made the year at college a lot easier for me than school had been.
After leaving home I was somewhat vulnerable and as an autistic girl developing into a woman this didn’t go unnoticed in the male population that I came into contact with. Looking back, I am amazed that I didn’t get into even more dangerous situations because I was so incredibly naive and just didn’t pick up the signs that I should have done. I landed myself in some very tricky situations over the years and was taken advantage of on several occasions. This, I believe, is one of the most important reasons girls need to be diagnosed at an early age and prepared better for the world we live in.
After one year of the two year college course I got a full time job in an elderly residential home where my lifelong wish to be a nurse was rekindled and at the age of 17, I began my training to become a Registered General Nurse.
I was a good nurse - hardworking, sensitive, caring and empathetic. The patients were always very grateful and happy with my work but I would often get into conflict with the other nurses and senior doctors, for sticking up and advocating for my patients. Consultants would have a habit of standing at the end of the patient’s bed and talking at them. The patients would feel intimidated by this and as a result not say anything at all, despite wanting to. So I would advocate for them, which was part of my job. However, consultants don’t like this so much and it wasn’t really appreciated by the team. I was probably seen as breaking rank, but I really didn’t care. The patient came first as far as I was concerned.
Downhill into my 20s.
My undiagnosed autism continued to make life difficult well into my adult working life.
After a few years of working it became clear that although I was good at the work, I wasn’t so good at the interactions with the other staff on my ward. That was the difficult part for me. Working as a team and towing the line, when often I didn’t agree with it because it wasn’t what was good for my patients. In those days a lot of bureaucracy and paperwork was creeping in to hospitals and senior nurses were more managers than carers. I was a carer through and through and I had little time, patience or energy for bureaucracy or for the social dynamics of the other staff.
This job was also detrimental to my health in so many ways. It really caused the beginning of the end of my health as I knew it at this time. Not just because of the ward dynamics but the work was mentally and physically extremely stressful. There were never enough staff to allow us to provide proper nursing care. Budgets were always being cut and corners had to be cut also. This meant people made mistakes and care wasn’t given to the standard it should have been and that I wanted it to be. The more caring and diligent nurses were the ones who left or got sick from burn-out. The ones who were less so were not so affected and often tended to be the less sensitive and caring among us.
By 1995, I could keep up no more. I was done. Physically and mentally. After the birth of our second child in 1993, I couldn’t cope with working full time anymore so I went back to work as a bank nurse. This is like agency nursing except you were the hospital’s own staff and so paid the same basic wage as all hospital staff. But we needed more money as my husband was also a nurse. - a career not known for its high salaries. I decided to do a childcare course in the evenings and began to do a little childminding during the week - a job I could combine with looking after our two children. At the weekends when my husband was at home to look after them, I would work nights in intensive care.
In 1995 I came down with Glandular Fever (Mononucleosis). I didn’t know at the time so carried on working despite feeling absolutely horrific. It was difficult to replace staff who went off sick and I always felt loyal to my job. I remember one night I was feeling really ill so was given a very easy patient to watch. All I had to do really was sit and observe for most of the night with little actual care being necessary. I sat in the chair wrapped up in blankets feeling so ill that I wanted to get into that bed with the patient. I don’t know how I got through that night but I didn’t work again after that.
The virus went on and on and 6 months later I was still very unwell with horrific pain all over my body and I could barely function. I was diagnosed with Myalgic Encephalomylitis (ME) also now known as CFS Chronic Fatigue Syndrome (CFS) or Post Viral Fatigue Syndrome. Telling me to pace my life and go easy on myself, the doctor explained that I should recover in time. Incidentally, this is very similar to what we are now calling Long Covid. Reader beware.
This was the darkest period of my life. It is even painful to write about now. I had two young children to care for and life was really difficult. The CFS didn’t go away. At times I was in so much pain and felt so ill that I felt poisoned. I couldn’t think clearly and slept a lot of the time. For a while I remember my routine being very limited. I would sleep until midday whilst my husband would drop the children off at school and nursery, whilst I slept until very late morning. Then I would get up and collect my daughter from nursery. We would have lunch and then in the afternoon we would lay down on the sofa together to watch a film - more often than not she chose Dumbo! As we snuggled together I would sleep again until an alarm woke me to go and collect our son from school. I would then eagerly await the time again when I could go back to bed and it would all be the same the next day.
It wasn’t always like this, thank goodness - there were periods where I was less affected, but it never went away. ME, as it was known then, or the badly nicknamed ‘Yuppie Flu’, had a hugely negative stigma about it and there was no one outside the four of us who could understand. I kept it very well hidden, even from the rest of my family. It was during these dark times, however, that some of my best creativity came out. I began writing songs and playing the backing tracks on my (updated) keyboard. Later, I even made a CD singing and playing my own songs as well as some covers of my favourite songs of the time. It wasn’t really fit for the pop charts I admit, but I treasure it still as it was such a huge achievement for me, especially under the circumstances and I’m very proud of it.
As the years passed and I had some better periods of health between the relapses, I was able to work small jobs that would fit in around my health and my family. Here again my autistic tenacity, determination and creativity were showing themselves. Between 1995 and the present day I have done the following jobs in order to keep a little money coming in to contribute to the family finances: babysitting, singing, dance and theatre teaching, cleaning, dog walking and pet sitting, buying and selling on eBay and at boot fairs, supermarket checkout assistant, making and selling bespoke cards, school dinner lady and ESL teaching. And of course finally, throughout it all I have been a mum, wife and home organiser. These were the most difficult jobs I’ve ever done!
When I could no longer do one job, I found something else I could do. And barring my health problems I do believe I could honestly have turned my hand to anything I wanted to, in order to make some money for my family. This is one of my autistic skills and one that I am very proud of. I also believe that I could not have stuck to one career my whole life. Nor could I have ever again held down a full time, or perhaps even part time, job. I need too much recovery time. I am depleted by having to navigate people-ey dynamics and if I use all my available energy and brain power on my job, I have nothing left to give to anything or anyone else. This is all a recipe for mental and physical breakdown. I think that for me some kind of burn out was inevitable and in some ways my illness did me a small favour.
As an adult, I was still very comfortable on stage, performing to an audience, but the backstage dramas and socialising were torture for me. Speaking of which, before my autism diagnosis I could never understand why I didn’t fit into theatre groups and other clubs run predominantly by non-autistic people. I was once a member of a theatre group, run especially for underprivileged children, including some children with Down Syndrome. You would have thought that this would be my kind of place wouldn’t you? Well it wasn’t. I was bullied terribly by the ‘adults’ - sometimes even just before I went on stage to perform a solo. My daughter, who was around 9 at that time, also suffered the wrath of these so-called caring people and at that time was clearly showing autistic traits herself.
My talents and enthusiasm simply sparked jealousy and misunderstanding. I was too nice and too kind for this group and sadly, due to the behaviour of several of the ‘ruling’ adults I was forced out. (Do I sound a teensy bit bitter at all?) I was devastated by this at the time as many of the children I had worked with were blossoming and growing in confidence under my guidance and the group itself was a wonderful thing. This was my first big experience of being on the outside and not knowing why since I had left school and it was such a bad experience that I would never do it again.
The actress in me. (A little diversion and an autistic anecdote).
I mentioned at the beginning that have been an extra in two films. The first was a rather mundane experience for the film Populaire and basically involved five days of sitting/lying around on a floor with little food and toilets that didn’t work. Interspersed were the actual acting bits which involved sitting in a theatre clapping and cheering for hours on end, surrounded by cigarette smoke for authenticity. Not at all glamorous! That was that - ticked off my bucket list, I vowed not to repeat the extra experience.
But, a year or two later, I was invited to be an extra in a Nicole Kidman film called Grace of Monaco. (The film was actually very dull I’m afraid, but I was in one scene so worth a peek!) How could I possibly refuse? It was much less demanding than the other film and would only be a couple of days filming. I was chosen to act briefly with Nicole and prior to the filming we had a brief chat about Brussels and the Christmas markets.
This was of course something I’m super proud of and makes me smile every time I think about it. It also reminds me of a little anecdote about my autistic family that was rather telling in retrospect. My husband picked me up at the tube station after the day I’d acted with Nicole and of course I was just bursting at the seams to tell him all about it. My husband in turn had had a rather less exciting day doing everything at home, working and having to look after one of our kittens at that time who was very unwell and needed syringe feeding. When I had got the call to do the extra work it was last minute so involved a quick tutorial on how to syringe feed a very unwilling little bundle of teeth and claws in order to keep her alive.
So he picked me up and I blurted out my exciting news. Unfortunately, his autistically overloaded brain couldn’t process or really empathise with my excitement at that time so the whole reveal fell very flat indeed. It wasn’t much better when I told my teenage children. The most they could muster was, “That’s great mum! Cool.”
I had more luck with some friends and family but it really stands out how we each process things at different times. I was in the middle of a wonderfully exciting event and the thrill was seeping through my pores, but my husband and children couldn’t sense that or really understand my emotion… until they saw the film a couple of years later. This was a whole different experience as we saw it at the cinema, at which time my husband got very over-excited, calling out, “That’s my wife!” and dropping his popcorn everywhere. Only then did it sink in and I could finally share that proud and happy experience with him. Since then he doesn’t miss an opportunity to tell people about my great ‘fame’.
A little side note here is that autistic people can and often do process things differently. I too have the most unusual reactions to some things. I don’t feel sad when I know I should and I feel sad and cry when I really shouldn’t. I can be very pragmatic at times of major life events and only later experience the grief that I should have felt before. Fortunately my amateur acting skills are pretty good and come in most useful.
Back to the time line.
In 2005 my husband moved to a new job - one in which he was very fortunate to have private medical cover. Up to this point, my medical care had been woefully lacking. I had really been left to my own devices to do whatever I could to help myself. At this point in time I had developed other problems with my health and there were many unanswered questions that were festering, not just for me but for the children. It was around this time that the children and myself were also diagnosed with ADHD. Also privately, as there were simply no reliable services available to us in our area.
With the availability of the internet around this time I was now able to do my own research. When I become interested in something I can research to my heart’s content. For hours and hours if necessary. My nursing background helps and my open mindedness and need for truth and honesty were also assets in my searches for information. I am not easily led in terms of my enquiring mind and I love to read around subjects until a full and impartial conclusion has been found based on all evidence available to me.
Taking my questions and ideas to a doctor weren’t options for several reasons. Firstly I was a woman. And… a woman with ME/CFS no less. Those alone ring alarm bells for doctors who automatically assume you are either depressed, hysterical, menopausal or a hypochondriac and that’s how I was treated for a large portion of my adult life after getting sick.
My research eventually led me to a Professor Rodney Graham, who was a specialist in connective tissue disorders and with the help of our private health care at that time, I took myself and the children along to see him. Professor Graham is one of the most kindest and knowledgeable doctors I have ever met. Without his knowledge and the funds to be able to see him I do not like to think where we would be today. He diagnosed the Ehlers-Danlos Syndrome Type III (hEDS) for me and for both the children.
My diagnosis of hEDS explained the reasons for the majority of problems I had been experiencing since I was 14. The condition alone can cause chronic fatigue and fibromyalgia symptoms so my problems were all ready starting to make sense, so we were able to leave that appointment armed with new knowledge that would help us to take care of ourselves and understand all the complications that we experience.
It is interesting to note that it appears that hEDS occurs far more than it should in the autistic population. So much so that amongst the small group of friends I have in Belgium with autism and/or ADHD, more than half of them also have hEDS or a similar disorder.
Since that insightful year, I have lived in two different countries and I have learnt a lot of other things about myself. It was like assembling a very clear jigsaw of all my lifetime’s mental, neurological, hormonal and other physical symptoms and their causes. The pieces of the jigsaw were now fitting nicely together after so long of having huge gaps and I could at last see the full picture coming together. There was, however, a large piece still missing.
The final Puzzle Piece
There are periods in life where there is often a deterioration of hEDS symptoms. These are around puberty, in your 20s and in your 40s. In my late 40s, sure enough my problems were intensifying. 2016 was a big year for me. I was 46 years old yet this was when my life truly began. When I found out who I am. When I finally learned to accept myself. This was when I found my club - my tribe.
It was August and I was enjoying the peace and quiet of my garden in my favourite place - my swing chair. It’s shaped like an egg and the gentle bouncing or swinging motions it makes are extremely soothing. That sunny day, I was researching my muscle problems and EDS on my tablet.
During my research Autism kept popping up. I ignored this to begin with but it was persistent. My particular muscle issues seemed to be a common thing in autistic children. As I continued researching, EDS kept appearing too. Lots of coincidences it seemed. But my interest was now piqued. The more I looked, the more these things kept showing up.
But then, a new strand popped into view. Autism in females and Ehlers-Danlos Syndrome - very, very interesting indeed! Before I knew it, I was reading about myself on that screen. These autistic women were describing ME. The more I read, the more I knew this was me. I knew these women were telling my own story. Almost word for word.
Like most people, my only point of reference at this point was Rain Man, the film. I thought all autistic people were male and severely learning disabled or savants. Ashamed as I am to say that, I know I am not alone because that is how autism has been portrayed in the media. My children and I had, however, often noted ‘autism signs’ in my husband but no one had ever taken that further. So this new knowledge I was acquiring was really quite incredible. Women and girls can be autistic too? And they don’t usually present in the same way as males? And autistic people are not all learning disabled or ‘obviously autistic’ ? Woah!
I read and I read and this became my new special interest. I actually knew by the end of that day, deep down inside that I was on the spectrum. I knew in my very core. And it excited me and filled me with absolute wonder. But my conscious brain said to keep researching and not jump to any conclusions.
Over the next few weeks it was all I could think about. I went through autism questionnaires and list after list of female autistic traits and I showed them to my husband and children. I also suspected very highly at this point that our daughter was on the spectrum but I knew that she wouldn’t take it well if I suggested it. So I showed her the lists I had found and asked her thoughts. She agreed with me that they were talking about me as if they knew me, but she also said that much of it applied to her too. Aha! My sneaky plan worked! We laugh about this now.
I went on and on about it like a dog chasing a bone, until I finally found somewhere to get an assessment. This in itself was no mean feat as I soon realised that as much as I now knew about the differences between male and female autistic people, the professionals didn’t. It was clear that finding someone knowledgeable in the field was going to create its own challenges.
Eventually though, I did find someone in the UK called Sarah Hendrickx. I duly filled in the multiple questionnaires, gathered my family’s opinions and comments, collected old school reports and other relevant childhood information and wrote as much about my life as I could remember. Finally it was time for the three hour assessment.
I remember it like it was yesterday. I sat on my bed like a child waiting for Christmas. The assessment was done over Skype and as my assessor called me and the Skype ring tone started my heart was in my mouth. At the beginning she said to me, “Now it may be the case that you have some autistic traits and not autism.” I understood that, I explained, but I would eat my own socks if I was wrong.
Being someone that doesn’t generally talk a lot, I managed to fill those three hours talking about myself very easily. Sarah was wonderful at her job and carefully and professionally teased out the information she needed to make her assessment and at the end of the three hours I sat with bated breath, awaiting her verdict. I had no doubts really but I was also terrified that I may have been wrong. In which case I think I would have been utterly devastated because I finally thought I knew myself at this point and to be told that I was wrong would have been unbelievably distressing.
She smiled at me and said that without a doubt she had concluded from all the evidence and my assessment that…I was….most definitely….without a doubt…autistic. On the spectrum. So called ‘high functioning’ Aspergers. Neither of us liked the term ‘high functioning’ but I also knew what she meant by it.
I could have kissed her. I wanted to hug her. I cried. I flapped. I bounced on the bed. After I’d closed the laptop I skipped (as best I can with hEDS) around the house like a child saying “I’m an Aspie, I’m an Aspie!” I had the biggest grin on my face and I was just in heaven. That was the best day of my life. Truly.
I had finally found my place in the world. I now knew why I had always felt different. There was a reason for all my weirdness. In fact I wasn’t weird at all! Just neurologically different. I wasn’t broken. I’d found my club. My tribe. I felt liberated, alive, special and unique. And totally normal, in the Aspie world anyway! I had been given permission to be me and above all I felt validated.
I was so incredibly proud and happy and I wanted to tell the world. I did continuously bore the pants of my husband, children and a few long suffering friends for several weeks (or maybe even months) about autism in females and especially, all about me! Sarah did warn me to be cautious about who I told and that the diagnosis would be a rollercoaster of emotions. I heeded that but I was overwhelmingly relieved and happy. I began to reframe my whole life - making sense of the past 46 years. I accepted my quirky self and forgave myself for all the things I couldn’t or struggled to do. I finally understood myself.
My family were actually amazed that they hadn’t seen it before! Suddenly it was as obvious to them as the nose on my face. Our son was the next to be diagnosed and again, none of us could work out how it hadn’t been diagnosed before. How had no one picked up on his very obvious autistic traits before? Armed with this knowledge, he was able to reframe his life, get the help he needed at university and eventually find a job that appreciated his autistic qualities.
The next to walk down Autism Alley was our daughter. A little more reluctant, and like our son, she was initially, frightened of the stigma that this diagnosis could bring and yet at the same time keen to know for sure. Everything fitted in place for her and I was angry for a long time that our children had been treated the way they had been, especially at school. She began a new and long journey of finding her peace with the diagnosis and it was a long time before she was able to escape the prison of mental health services and start living her life. Especially here in Belgium which, sadly, is even more behind the times in terms of autism awareness than the UK is.
Finally, amidst a family of autistic people, my husband stood up and said, “Well I guess I should go for an assessment then.” He was last to get his Aspie badge and out of all of us, it was the least surprising.
Since my diagnosis I have indeed been on a bit of a rollercoaster of emotions. I would have preferred to have had some post diagnosis support to help me work through these feelings, but it simply wasn’t available, or was ridiculously priced. There were bouts of feeling extremely sad, grieving for what could have been different had I known earlier and much reframing of my entire life up to that point.
There were periods of anger, denial and all the feelings one goes through after a bereavement. After all, in a way, I was losing something I had grown used to for 46 years. What if things had been different? Would I have avoided so many mistakes? How much easier would life have been? Would I have got so sick so young? Would I have been a better mother and wife? Would my children have been diagnosed and spared all that trauma and damage? How could life have been easier for us all if my dad had been diagnosed when he was young? The questions poured in to the processing centre for a long time and of course, many are useless ‘what ifs’ because even if we had all been diagnosed earlier, the understanding and support would still not have been there in those times.
There have also been times when I have questioned my actual diagnosis. Am I really autistic? Do I really deserve this diagnosis? AM I really any different to anyone else in the world? But these thoughts don’t last for long as I soon come back to reality and realise how utterly autistic I actually am. And then I smile to myself. It is a happy feeling for me. This is all a process which we need to go through. It is that important and life changing a diagnosis. The more I read and learn, the more obvious it becomes and I am over the moon that the final piece of my personal jigsaw puzzle is now in place. I am complete.
The downside to telling friends and family of course was the inevitable, “But you don’t look autistic? It must only be mild. But only boys get that, don’t they? Aren’t we all a little bit autistic?”. Here it was, the invalidation. The insults really, but of course, I do understand completely where these words were coming from. They come from a lack of education and awareness about autism, that I too once experienced myself. A misconception and a Rain Man perspective. They are meant to be words of comfort and acceptance. At times like this I try very hard to remain calm and understand that these words are usually just misplaced but well-meaning and I will gently and consistently educate my friends about autism in women.
Sarah also warned me about some possible negative and even sinister reactions that could potentially occur when revealing my diagnosis and one only has to pay attention to the media to see examples of this. I have never directly discussed my diagnosis with members of my extended family and other acquaintances, but I don’t hide it either. It’s not that I’m ashamed at all (as I think my story has made clear) but I know how some people would respond and it wouldn’t be healthy for me. I know that the comments and ensuing discussions would be painfully invalidating, upsetting and bad for my blood pressure! A bit like trying to defend myself in court. In the words of a great song from a great musical (The Greatest Showman)…This is Me.
The need for earlier & better diagnosis of autism in females.
I am passionate about raising awareness of autism and in particular about the need for girls to be diagnosed at an early age and better understood. I have fared better than some growing up without a diagnosis in a world set up for allistic (non-autistic) people. But tragically the same cannot be said for my own children. They were not diagnosed until their mid 20s and by then a whole lifetime of damage had been done. They were misunderstood, mis-diagnosed, demonised, traumatised, abused, excluded, and badly damaged. They went as far off the rails as they could possibly go. They were let down by society big time and not least by the education system that was supposed to nurture and support them. This must stop and will only do so by awareness and education.
Girls begin to gain much more awareness of their place in ‘Girldom’ around the age of secondary school and it is then that social difficulties can really take off and ruin self-esteem and relationships. Autistic girls who are not diagnosed will have to undergo very painful lessons and will not understand why they don’t seem to be able to work out the rules of the Girl Club. Worse still, they may be ostracised, bullied and excluded at this delicate time of their lives. Teachers in secondary school may not understand their needs and the girl will be labelled as aberrant, lazy, oppositional, shy, not achieving their potential and all those negative stereotypes that so many of us on this website know only too well from firsthand experience.
Families will try to encourage ‘normal’ behaviours and rules, as my husband and I did with our own children, and despite the child’s best efforts to conform, if they are neuro-atypical, further assaults to self-esteem, confidence and mental health will begin to build up and compound each other. When a girl isn’t accepted as the person she is, by her teachers and peers, at home, at her after school clubs and in society in general, the only way forward is mental ill-health and a lifetime of difficulties at university, college, work and life in general, and of course, ultimately, adult relationships.
Recent research is showing up a much higher rate of undiagnosed autism in anorexic girls and I believe that this may just be the tip of the iceberg. If a girl reaches adulthood ‘broken’ by these negative life experiences, she may already be well on her way on a downward spiral of poor health. As life goes on it gets harder and harder to navigate. The common trajectory for women in particular, who are autistic but were not diagnosed pre-adulthood, is to be diagnosed with at least one mental disorder - and more often than not, a personality disorder.
This one label alone - Borderline Personality Disorder - can be devastating and a death toll to the woman’s future life and career. Many psychiatrists don’t want to work with these women. It carries a terrible stigma and women are accused of being manipulative. The main ‘treatment’ is horrific drugs that cause massive weight gain, tiredness, hypersomnia and other side effects. More modern treatments, such as dialectical behavioural therapy, are not yet widely available, and the problems are similar for many mental health disorders. This is not a diagnosis that should be taken so lightly and so easily dolled out after a short tick box exercise and ten minutes of chatting with the patient.
Depression and generalised anxiety are also common by this stage and what follows is a long list of psychiatric misdiagnoses and mistreatment. Once in the hands of psychiatrists, many of whom are still tragically far behind in understanding and diagnosing autism in females, many women begin to collect diagnoses of bi-polar, borderline, or psychoses. Or all of the above. Often, autism isn’t thought about, raised, suspected or considered. If the woman brings up the subject their questions are often dismissed because they can make eye contact or are too intelligent and the myth that autism only exists in boys is still pervasive amongst medical professionals.
Instead of exploring the possibility of autism, these vulnerable women are given one brain altering drug after another, often reacting very badly to even low doses, whilst not seeing their quality of life improve one bit. More commonly, life actually deteriorates. Many autistic women don’t have a smidgin of a psychiatric disorder. Some are suffering psychiatric symptoms purely due to not being understood as well as the everyday trauma they are experiencing from their undiagnosed autism.
Of course, there are women who do genuinely have psychiatric conditions or have these conditions alongside autism. But there is still an urgent need to understand not only the differences but the different way autistic people can react to psychiatric medications and treatments. Even some talking therapies can be detrimental to us in certain circumstances.There is a great urgency for this to change. Practitioners in all fields need to educate themselves about autism in women to stop these vulnerable women wrongly being put on the psychiatric conveyer belt of doom. If the lay person can do it then why can’t professionals whose job it is to do so?
It’s worth highlighting here another negative effect that all this mislabelling, misbelieving and misdiagnosing has on us - Trauma. Trauma is bad for autistic people and for me my overriding experience of doctors since leaving home is just that - trauma. Doctors = trauma =anxiety = more vulnerability and bad experiences = more trauma and so on. Many women I know, myself included, suffer severe anxiety and stress from medical appointments, that create traumatic, bad-for-health experiences that stay with us and effect us greatly for the rest of our lives. And don’t even get me started on the hospital experience!
I so want all of this to change and as quickly as possible. It pains me to read about the same tragic mistakes affecting other families and other girls and women. Whenever I can, I use my experience and passion of all things autism to raise awareness to anyone who will listen, and that is why I am writing so much of my story here. I feel fortunate to have been diagnosed in this exciting time of the neurodiversity movement and with so much more information available to women than ever before. It’s an exciting time to be an autistic woman or girl, I think.
The good news, and it is wonderfully good news, is that with diagnosis, support where needed, education of families and teachers and of society in general, these young girls can lead the life they deserve. They can be genuinely happy and healthy. They can be accepted and celebrated as normal in their own neuro-atypical way, loved for their quirks and differences, their talents and pure wonderfulness. Allowed to blossom and to find work that suits them and to ultimately participate in fulfilling, loving relationships if they choose them.
A little rant.
I feel that there is a lot wrong with the current neurotypical paradigm of autism. Terms such as ‘severe or mild’, ‘high or low functioning’ are, in my view very misleading and harmful and perhaps some better autism vocabulary needs to be invented by autistic people themselves. Many of us are able to hide our difficulties very well but it doesn’t mean that they aren’t severe. Professionals don’t equate the extra effort we have to make all the time with being disabled by our autism. We are often not as obvious as our male counterparts so are easily dismissed. No one can see behind our masks and determine how we are actually managing. No one can quantify the level of energy and effort it is taking to maintain that mask. Sometimes I am able to maintain my mask better than others and often I simply won’t go out as I just don’t have the energy to keep up my ‘mask maintenance’.
I have personally seen how this has affected some women who are close to me. They can appear totally neurotypical and ‘functional’ yet once in the safety of their own home they are tortured individuals, having severe meltdowns as a response to this facade, pulling out their eyelashes and cutting themselves in a desperate attempt to calm, regulate and regain control over themselves. Their physical and mental health suffers immeasurably and trying to keep up the neurotypical mask leads to untold suffering, severe hidden anxiety, depression and even suicide. These are so-called ‘high functioning’ and ‘mildly affected’ autistic women. These labels are invalidating and even dangerous. When the resulting trauma and meltdowns are witnessed by unknowledgeable medical professionals, teachers, partners, friends, family, society…we are labelled borderline, bi-polar, psychotic, spoilt or manipulative and given mind altering and life altering drugs as a result.
My Final Thoughts on Autism
I worry for my future and that of my children. I worry about not having people to advocate for me or for them, when we need it. I worry about losing control of everything that keeps me comfortable and regulated. I worry about where the general mindset of autism is going - in the wrong direction, just as it did for Down Syndrome. I worry about talk of ‘fixing’ and ‘curing’ autistic people. But I also see much light to hold on to.
I do not feel that autism is a disorder. It’s a difference and it has its challenges. It may produce ‘disordered’ neurotypical behaviour on Planet Typical, but in Neurodiverse Land it’s perfectly normal behaviour. It is disabling in a neurotypically defined and favoured world. It may be accompanied by intellectual difficulties, behavioural challenges and other co-morbidities as well as mental health problems or anything else that all humans experience. But I am not disordered and I am not wrong or broken. I am neurodiverse. Just as neurotypical humans and neurodiverse in their own way. I am happy with my autism. It makes me who I am and you couldn’t take it from me for a million pounds. Here are two of my favourite quotes:
[So-called] Mild autism doesn’t mean one experiences autism mildly… It means YOU experience their autism mildly. You may not know how hard they’ve had to work to get to the level they are,” Adam Walton.
“If you’ve met one person with autism, you’ve met one person with autism,” Dr Stephen Shore.