In the last 18 months I have shared my story of late diagnosis Autism anywhere and everywhere someone will listen, and I fully intend to continue doing so.
Last Friday I was reminded precisely why I need to keep bleating on and shouting about girls with Autism. I went to view a school for children with special educational needs. The school was specifically for children who are Autistic. My son is diagnosed Autistic and struggling with the social and emotional demands of mainstream education, hence viewing the school.
We were shown around the premises and talked about their provisions for Autistic children.
Whether the school is indeed right for our son’s needs, we are yet to decide, and even if it is, there are no guarantees that a place can be secured.
I was also visiting the school with my daughter as she was exploring it as an option for one of my grandchildren (yes, I have grandchildren in the same age range as my two youngest children, you are not misreading things, and I am old enough). Out of the visit, one thing stayed with me, however, a comment…
“How many children are in the school?” “Oh, we have about 100, but only 12 are girls.” Only 12 are girls! As a late diagnosed Autistic diagnosed at age 45, I really should not be shocked by this, but I am the product of the 1980’s when it was believed that only boys could be Autistic. Twelve out of one hundred is the product of 2023 not 1980! It seems that in forty-five years, we have made very little progress in understanding Autism in girls (and those who identify as female).
I do not believe for a moment that twelve out of one hundred exists in that school because of an absence of Autism in girls in South Yorkshire where I live, it is simply more evidence that we still do not have sufficient
Autism awareness to spot the signs and traits in girls. Even more frustrating, it is not too difficult to learn them. There are more than enough females, and late diagnosis stories available to illustrate how we present, and how we presented as children. The information is out there and not difficult for professionals and lay people to find.
27th March to 2nd April 2023 is World Autism Acceptance Week. Yes, Autistic people do need acceptance, and support, but as yet we are most definitely not in a place where we can overlook awareness.
I will stop raising awareness when I hear numbers that reflect a better understanding of girls with Autism, and when I see it realised in everyday situations such as enrolment at special educational needs schools.
When people encourage me to be myself, not to Autistic mask, or as one Autistic said to me after my diagnosis at age 45 “Just don’t mask!” they make it totally about me, and totally my responsibility, but it’s not just about me, and it never was.
I have Autistic masked my being Autistic for 47 years. I started masking at the age of 3.
What is Autistic masking?
Autistic masking is mimicking Allistic (non-Autistic people) behaviour to fit in, or to hide in plain sight, camouflaging. It is never an illusion for me, but rather an illusion for others. I always know I am different. Some Autistics will become very adept at it, to the extent that it plays its own part in them being missed altogether, or late diagnosed, as was my own experience. These may well be the Autistic people who hear “But you don’t look Autistic”. We do not have just one ‘other’ mask, we may well have several. Masking operates at a deep level. In my experience, it is so automatic and unconscious that I am known to do it in my dreams. It is now a central feature of the person I am and have become. To some extent, we become the masks we wear, but I find that my masks are also intrinsically linked to my values, so at times, having felt the pressure to wear a mask that does not fit with my values – a dirty mask – I will quickly remove myself from the people with whom I am masking so I can remove it. Autistics who mask to survive must be careful of the company they keep.
What do we mimic?
I have been known to mimic anything and everything, someone’s mannerisms, clothing, handwriting, the way they speak (I pick up accents very easily, as do many Autistics), the way someone dances, walks, talks, phrases they use, interests they have, choices (good and bad), anything.
Why do Autistics mask?
Autistic masking is not a coping mechanism, it is a survival strategy. We use it to survive in a community with the rest of the ‘social herd’. It helps us to stay alive. However, Autistic masking comes at its own cost… When we have been overloaded with situations where we need to mask we will be totally and utterly exhausted. It is one of the reasons I need a lot of solitude – to decompress and unmask – it takes a great deal of self-control to mask, and self-control takes energy, so my tolerance levels or as I like to call them ‘control stocks’ for other things can become low e.g. tolerance for noise, impatience, temperature. If I am forced to switch masks quickly, or I am forced to mask in a situation I wasn’t expecting e.g. I bump into someone I know at the supermarket, I don’t always have the energy to mask. Having to don a mask quickly has a cognitive whip-lash effect on me. Ultimately, Autistic masking over a long period of time increases the likelihood of illness and suicidality in those who use it to survive. It is dangerous. I have recognised that my co-morbid anxiety which started at the age of 3 did so because this was when I started pre-school and needed to start masking to survive as an Autistic in and amongst a predominantly Allistic herd. The chronic gastrointestinal problems which followed did so as the Autistic masking had to step up to meet the social demands of adolescence. The day I get to wake up without these illnesses is the day I do not need to mask to survive. I describe my anxiety as living with a permanent sense that I am about to fall down stairs, and it never goes away. Both conditions are cyclic, constantly feeding one another.
The motivation for me to start Autistic masking came about because I recognised my own social deficits early on, at the age of 3, and because the Allistic tribe quickly showed me that it is was not acceptable or safe for me to be my authentic Autistic self. It wasn’t safe in 1978 when I was three, and it’s still not safe now. Autistics are often viewed as weird and different (in negative ways), criticised, rejected, and treated negatively in the forms of bullying, control, coercion, discrimination, and other forms of direct and indirect abuse. I witness this happening to other unmasked Autistics, and it becomes an additional warning that it is still not safe to unmask. Experiences such as this happen when we do Autistic mask, but can be more frequent and worse when we don’t. So, if I am to remove my masks, and be totally authentic, I need to know it’s safe for me to do so, and as I see it, 46 years on, it is still not safe to do so. I have simply learned to play the game of life for an Autistic person.
I am likely to be able to unmask when I can believe wholeheartedly that I will be accepted, supported, and not rejected for who I really am, and until that day arrives (or I am able not to care about those things) then I don’t see how I can unmask. Not only do I have to change, but society must change also. If we want Autistics to unmask, society needs to take responsibility for its ill treatment of Autistic people and make it safe for us to be ourselves.
Autistics ask for the same acceptance as any other minority group e.g. LGBTQ+ and BAME, amongst others (and yes, there is much work to be done there too), but for the Autistic community we have further to go. You would never hear the phrase “If you have met one black person, you have met one black person”, yet we regularly hear the equivalent statement said about Autistic people. This shouldn’t need to be said, but society is so lacking in understanding of Autistic people that such statements are still needed.
Most people are much more themselves when they feel safe to be themselves. One of the very challenges is that I make it very convenient for society by masking my Autism. I adapt therefore you don’t have too. Why would Allistic people challenge a status quo that serves them so well and doesn’t compromise their existence?
If someone is hiding their identity or true self, there is a reason for it, and the reason may not just be them.
The very fact that you are ‘considering’ you may be autistic means you’ve worked a lot of it out already. That is a big step, huge in fact! So maybe my words will only solidify what you already know.
Tips can be tricky, why? Because all Autistics are individually very different, but nevertheless we share a lot of common traits. Firstly, for a diagnosis of Autism, we all must meet criteria relating to the Triad of Impairment: a clinically diagnosable degree of difficulty in social communication, social interaction, and social imagination, or as the eminent Dr Lorna Wing once said “It is all social, social, social” to which I concur. Everything about our struggles is to do with ‘social’.
Have you ever had the sense that you do not belong in this world, that you are an observer rather than participant? That is the story for so many undiagnosed Autistics, and furthermore, many of us are left feeling we are wrong, bad, and unworthy because we do not ‘fit in’.
I should firstly share that one of my own Autistic talents is I can pattern spot 78% faster than my neurotypical counterparts on test, so I have an eye for patterns across my fellow diagnosed and undiagnosed Autistics, and I have a ‘Neuroscope’ for spotting my people. Many of the traits don’t in fact require that level of sophistication, but here are a few things I’ve identified from the literature, my work in mental health, and my exposure and pattern spotting of those who are undiagnosed Autistic:
- We get diagnosed (sometimes incorrectly, sometimes correctly) with anxiety disorders of the social kind e.g., Social Anxiety aka Social Phobia, and often Agoraphobia.
- We normalise high achievement, strive for perfection, and nothing less… in a desperate and often futile attempt to prove we are worthy and to trick even ourselves into believing we are neurotypical when we are not.
- We have a diffuse sense of self, never quite feeling in our bodies, or totally grounded.
- We suffer with a whole range of co-existing health conditions e.g., mental illness, gastric problems and often receive an IBS diagnosis, hypermobility, amongst others.
- We never ever feel we ‘fit in’ no matter how hard we try.
- We live life totally exhausted all the time, and this is multiplied for those of us who socially mask (mimicking neurotypicals to fit in), and the exhaustion will not come from work or tasks, it is instead people that exhaust us (regardless of whether the interaction is positive, negative, or in between).
- We are a total contradiction in most things, this will confuse others, and makes us second question ourselves.
- We often struggle to maintain long-term relationships and have difficulties with conflict resolution.
- We have been victim to at least one bully or narcissist in our lifetime, and in some cases will have been abused due to our vulnerability.
- We have sensory issues and challenges with food, and for some of us will be diagnosed with an Eating Disorder (sometimes incorrectly, sometimes correctly).
- We have special interests, we hyper-focus, and we can really shine in these areas. My work is one of my special interests, though I prefer the use of the term ‘obsession’ as this is more the reality.
We have a quirky sense of humour, that some will ‘get’, and others won’t, other neurodivergents will ‘get us’ most. For example, my daughter (who is also Autistic) recently shared a story with me of an online post where one Autistic person shared that all Autistics have ‘T-Rex’ arms. I pondered this for a moment, then proceeded to give my daughter several examples of all the times I had noticed this in myself. After each example she affirmed “Yes, T-Rex arms!” For us this was probably the most amusing Autistic sign yet, and one which might only be spotted by another Autistic with an eye of the detail that everyone else misses. We have T-Rex arms *and it still makes me laugh out loud now*
So, tips, signs, self-identifying…My personal view is how much you will search for your identity comes down to the following three things:
Your IQ + your level of suffering and/or mental illness + how much you want to ‘fit it’ and feel you don’t, and how much you socially mask to compensate for this. I score highly on all three, which explains my endless search… I searched for five years in crime and criminology and have a first-class honours degree to show for that search. I searched in mental illness; I have a successful mental health training business to show for that search. One day I’d like to test my theory empirically, and women are my interest group. The above factors relate to the female phenotype (presentation) of Autism, and perhaps less so the more well-known male phenotype. I do not love train timetables and trains, but I do have a pristine and varied collection of luxury handbags, shoes, and jewellery. We are the same, yet we are different.
Jane McNeice’s new book, The Umbrella Picker, illustrates the struggles of living for 45 years as undiagnosed Autistic and being misdiagnosed with mental illness.
Fact: Not knowing you’re neurodivergent and receiving late diagnosis of autism statistically increases the likelihood of mental illness in adults.
Solution: Identification and early diagnosis gives earlier support and happier people (and can save the NHS £s)
The Umbrella Picker tells the story of how Jane finally found her neurological truth after being a ‘lost girl’ for four and a half decades. After a long and relentless journey of searching for answers, the hand of fate finally revealed to her what she had waited a lifetime for.
Jane explores what it was like growing up as an undiagnosed neurodivergent in a neurotypical world. She shares her honest account of some of her differences including: feeling ugly, lost, lonely, and unlovable as a child, socially masking to fit in and being unable to express how she felt without knowing why.
Finally, having found the truth to her suffering, Jane is no longer lost, and having found her own, unique way, Jane has written the book she wished was available to her 30 years earlier.
If you are feeling lost to yourself, this heartfelt and compelling book may answer your unanswered questions and help you to finally find yourself as you connect with the traits illustrated.
Praise for The Umbrella Picker
“The fact that you have been so open and honest about your life journey is so inspirational to Autistic women.” – Helen Pass, another ‘Lost Girl’ found
“Jane does not shy away from addressing her own mental health experiences, her fears and feelings of isolation. The reader is left feeling Jane has truly peeled away masking layers to portray her true self through her writing.”
–
Manar Matusiak from Living Autism
“This book has been written with so much sensitivity, insight and wisdom. It comes from a place of truth, generosity and compassion which will most certainly help other lost girls to know themselves.” – Alyson McGregor from Altogether Better
About Jane McNeice
Jane McNeice is a wife, mother, grandmother, and business owner from South Yorkshire. Jane’s debut book is ‘The Umbrella Picker’ which documents her life living undiagnosed Autistic and the related struggles and challenges therein. Jane was diagnosed Autistic at the age of forty-five, two months later her 26-year-old daughter was also diagnosed, followed three months later by her 8-year-old son in December 2022.
Three diagnoses in seven months, and none would have been discovered were it not for their own self-identification. Jane has written the book she wishes someone had written for her 30 years earlier, a book that shares the lived experience of being undiagnosed Autistic, a ‘Lost Girl’.
She authored her book ‘The Umbrella Picker’ with the intention of helping other ‘Lost Girls’ to self-identify, because ‘Lost Girl’ experiences are often a mirror to one another. Forty-five years is too long a wait to learn who you are – your identity.
She was lost for 45 years!
A Lost Girl’s journey to self-identity and finding her neurological truth
On Tuesday 16th August, Jane McNeice, will publish her debut book, a memoir about living for 45 years as undiagnosed Autistic.
From a survey of 750,000 people, Cambridge University established that 87,000 people met the cut off criteria for Autism, illustrating societal numbers of 11.6% Autistic, much higher than the 1.57 actually diagnosed. There are more lost Autistics than found.
Many undiagnosed Autistics are suffering, and their presentation is within mental health services, substance misuse services, and the criminal justice system.
Females are often known to socially mask and hide in plain sight presenting as neurotypical. “I have socially masked so much, and for so long, I even socially mask in my dreams.”
Estimates suggest between 4-23% of people with eating disorder are Autistic. Why are we not screening those with eating disorders for Autism?
Autism is illustrated to be highly genetic, why are we not screening the parents of Autistic children? Two of my diagnosed Autistic children share different fathers, I am the common denominator that illustrates a genetic link.
Myself and my daughter self-identified, then identified Autistic traits in our children. We are now diagnosed, one child is diagnosed, the others are waiting for assessment. Over the years 90+ health care and educational professionals have observed my daughter and me, NONE identified we were Autistic. Knowledge is shockingly poor!
I can pattern spot 78% faster than my neurotypical counterparts, and I can spot other Autistic people, with my very reliable (but not empirical) post-diagnosis neuroscopic ability which I refer to as my Neuroscope!
Why do we need to found? To ease our pain and suffering! To find our identity. You cannot build self-esteem without knowing who you are. Self-identification is a psychological intervention that transforms lives!
The Umbrella Picker tells the true story of a woman who felt lost for 45 years. After a long and relentless journey of searching for answers, the hand of
fate finally revealed to her what she had waited a lifetime for.
The answer was life changing. She is no longer lost, and having found her own, unique way, Jane has written the (brutally honest!) book she wished was available to her years earlier.
If you are feeling lost to yourself, this heartfelt and compelling book may answer your unanswered questions and help you to finally find yourself.
“The fact that you have been so open and honest about your life journey is so inspirational to Autistic women.”
Helen Pass, another ‘Lost Girl’ found
“Jane does not shy away from addressing her own mental health experiences, her fears and feelings of isolation. The reader is left feeling Jane has truly peeled away masking layers to portray her true self through her writing.”
Manar Matusiak from Living Autism, who trained me to be an Autism Champion
The Umbrella Picker will be available on Amazon paperback and Amazon Kindle from 16th August, with an introductory launch day price of £9.99 paperback and £2.99 Kindle. Full price £12.99 paperback, £5.99 Kindle
Order here
Whether I finish the 26.2 miles on 2nd October will come down to two things, whether I’ve physically trained enough, and whether I am mentally strong enough.
And so the battle begins, with my body and my brain:
Water infections because the training makes me ‘run down’ (no pun intended)
Lost, loose, and bruised toe nails
Blisters on toe ends
A sore undercarriage and boobs
Aching limbs
Constant hunger and fridge picking
Constantly trying out different sportswear and medical dressings for least friction best fit
Post training exhaustion and need for sleep
But the most challenging battle…
A brain that tells me I can’t do this, I’m too tired
A brain that is wondering where exactly I will get water stops and how I will cope with the lack of familiarity of the route
A brain that keeps asking what if I eat too much or too little on the morning
A brain that keeps asking whether I am I training enough (especially during the last two weeks as I am on holiday so have dropped the distances to 10k every two days)
A brain that keeps asking, have I done everything I need l so I am permitted to run on the day
A brain that is asking what will happen if public transport goes on strike and I can’t get there with plan A (…and will people support plan B?)
A brain that is making me feel guilty for leaving my kids with others so I can run
A brain that keeps asking what I will do if I can’t get my number and running pack
A brain that keeps asking how I will cope if I meltdown in front of all those people
A brain that is frightened of all those people
A brain that affirms my feeling alone and lack of support through very little sponsorship, and is trying so hard to remind itself of the tough financial times people are in
A brain that keeps telling me NO
But that very same brain does that to me with most things in life. It tells me “I cannot” “should not” and “should do”, but what it doesn’t bargain for is one key element to my armour…
With my Autistic brain came something that would help me fight back, something that would overcome my lack of confidence and ability to cope with unknowns, and that was ‘determination’ – the stuff of grit – the thing that makes the impossible possible.
I don’t know whether I will run all the way, walk a bit, or crawl, but what I am damn sure of, is I WILL cross that finish line, come hell or high water, and it will be my determination that makes it so, the same determination that has helped me cope through life not knowing I was Autistic for the first 45 years.
I simply hold myself to one thing “I WILL cross the finish line” because the cause is enough #autism
If you’d like to support my crossing of the finish line, you can do so here. I thank you in advance 💞 https://www.justgiving.com/fundraising/jane-mcneice1
#TeamAutism #actuallyautistic #ASD #lostgirl #latediagnosis #latediagnosed #neurodivergent
This is the 7 year old girl who felt lost, lonely, ugly, and unlovable. She doesn’t yet know she will wait another 38 years to find the reason for those feelings…
At the age of 45 she will find the answer to her ‘Why?’ She will learn that she is different, but not wrong. She will learn that she experiences the world in a different way, through a different brain type, and has different needs which must be met if she is to stay well. Needs that won’t be met up until that point. She will learn she is actually Autistic.
On 16th August, my book, which documents my experience of living for 45 years undiagnosed Autistic, as a ‘Lost Girl’, will be published. I wrote my lived experience with one intention, to help other ‘Lost Girls’ (and boys) to find themselves, to self-identify, and to find the answer to their ‘why’. We are so often mirrors to one another, my reflection is yours. I share my story because, when we live a life lost, we suffer, some more so than others, and tragically, some will die as a result of that suffering. Self-identification, and for those that choose it, subsequent clinical diagnosis, can be life-changing. We no longer feel so lost and unloveable, and we feel less lonely because we find our tribe, our people. It can make surviving in a world not created by us, for us, or with us, survivable.
I have written the book I so desperately wish someone had written for me 30 years ago, and I am able to write it because I know the pain of not knowing who you are and searching a lifetime for the answer to your ‘Why?’ I have been emancipated from my chains. I now turn to help others become free from theirs…
Available on Amazon in paperback and Amazon Kindle e-book from 16th August 2022. Audio book to follow.
On 3rd October 2021 I’m running the ‘virtual’ London Marathon for the National Autistic Society and today is my ‘Coming Out’ day…
On 22nd June 2021 I was diagnosed Autistic after 45 years of searching for answers to unfathomable questions and being mis-diagnosed with Anxiety disorders. I AM anxious, all of the time in fact, but that’s because I am Autistic not because I am mentally ill per se. Today I am owning My Autism, and the Awesome that it also provides . I don’t need you to believe in the Awesome, I just need to.
To those who I could never express how I felt to or who I walked away from because of that, who’s name I forgot, or who thought I was quiet or aloof, or to those I interrupted when I tried to guess when to speak in a room full of people, these are just a few of the many parts of my Autism. Please try to understand that I’ve been a square peg in a round hole all my life.
As a neurodiverse person in a neurotypical world I was discriminated against from day one because society expects everyone to be neurotypical, I am not. I socially mask pretty much all of the time in order to fit in, and with most people in my life, and I have various masks (…so if you’re thinking, she doesn’t look autistic, well yes that’s because I’ve spent the last 45 years crafting the art of masking – I’m a chameleon and I’m good at it, mostly). I have to work incredibly hard to do the job I do as a trainer and running my own company, but my own suffering is what drives me to help others through my work.
Today I’m removing the mask to reveal the real me, and publicly in writing, because writing is what I find easiest and where I can express myself, and because masking is totally exhausting! Sadly masking is also a strong predictor of suicide in Autistics, it is dangerous. I personally cannot run and mask at the same time so I am running solo on 3rd October and will do the Marathon virtually, all 26.2 miles of it!
I’m doing this for me as part of my acceptance of being Autistic, but also to raise awareness of Autism in girls and women in the hope that we stop missing girls who are autistic because they are well behaved and quiet at school and because they are high achievers or successful. They are often successful because of the awesome side of their Autism. If you know or support girls with relentless anxiety (or depression) please stop to question whether there is more to this person than you or they yet know, or whether the professionals have failed to find the fundamental issue. I found my own answer months earlier from a social media post describing girls with Autism, I knew immediately. It wasn’t a clinical professional who found the answer, it was me, though it still required a clinical professional to medically diagnose it. It should never have taken 45 difficult years.
My other hope in raising awareness is to discourage comments like “we’re all a bit autistic” or “well, we’re all on the spectrum somewhere.” Only if 99% are at zero autism and 1% full. Such statements, often well intended, take my own and other neurodiverse people’s experiences and re-group us as neurotypical, which we are clinically proven (to the required level) not to be, and many of us have fought tirelessly to prove that and to find the truth to our suffering. It’s like saying we’re all a bit pregnant when someone is feeling nauseous and a bit bloated. Such statements invalidate 45 years of painful searching, daily anxiety, chronic IBS, and invalidate each and every time I’ve felt that life is not worth living. If you believe such statements as your truth keep it for you, or maybe research it and see if it is in fact true rather than something you’ve heard along the way. For me it does more harm than good to my experience, but I cannot express that to you directly when you say it because of how my Autism effects me.
If you’d like to help me on 3rd October, and all the other #lostgirls of my generation, you might like to support my fundraising for the National Autistic Society, and we all thank you in advance for your generosity 💖 #nomorelostgirls #autism https://www.justgiving.com/fundraising/Jane-McNeice
I often come across Autistic people that prefer the company of animals over people, and the presumption that all Autistic people are animal lovers. I am not. Or at least if I am, there’s a huge barrier getting in the way. I cannot love animals in the way that I’d like to because they frighten me. I find them unpredictable, especially dogs!
About three months ago I was out running and an ‘off the leash’ dog chased me jumping up and barking at me. The owner could not get control of the dog. I said “I’m Autistic and I’m frightened of dogs” but he didn’t seem to comprehend. He eventually took control of the dog and I ran off, went into immediate Autistic meltdown, and cried all the way home while feeling unable to breathe.
Two weeks after that my husband announced one Saturday night that ‘WE’ were getting a dog the following Monday afternoon. I was devastated! It made me feel depressed, and all I could think was ‘my husband could have lived without a dog, I could not live WITH one.’ A dog would compromise my very existence. I resisted, resented, voiced my concerns, gave every practical reason that it was a stupid thing to do, and lost the campaign. Never once did I utter the words “It’s the dog or me?” because I still live with the ‘Lost Girl’ insecurities that the dog would be chosen, not me. Many Autistic people will relate to that, perhaps more so the late diagnosed like myself.
So, the dog arrived… I dragged my heels at the office on the Monday not wanting to leave and go home, and for the succeeding weeks pretended the dog did not even exist.
Over the last 10 weeks I have slowly, but not fully, come to terms with Chester’s presence. He is teaching me about him, and he is teaching me about me.
He’s taught me how much I need my Autistic obsessions/SPINS to survive and that one of the reasons I struggle with him is that he compromises my ability to partake in them. He sabotages my obsessions, and conspires against my decompression moments.
But… we are slowly reaching an acceptance of one another, finding a way of living together. Emotionally I’m still working on a connection, but practically we are getting there. In the last two weeks he has become my new running buddy. He can’t yet do the half marathons as he’s too young, but he runs the first 5 miles with me, and his dad meets us and takes him home while I do the rest. We have a companionship kind of relationship.
Chester and I share many characteristics. We both have off the charts determination. He could easily run further but is too young at the moment for the longer distances. His fire red coat is as red as the fire in my belly for positive change for Autistic people, and he too is constantly restless, and always hungry!
As for my husband, well, he’s still in the blooming dog house!!!! 😂
