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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.

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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.

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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.

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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.

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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.

 

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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.

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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.

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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.

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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.

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A little rant.

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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.

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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.

 

 

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