(Here for my resource list…? You can skip to the end of this post).
I am a grown up autistic woman. I am not supposed to exist.
When you think autism you probably think boys. Or children. It’s okay, most people do.
But grown ass woman – not so much.
In fact even though I am right here, you probably don’t believe in me.
Sure I’m a bit weird, a bit intense, anxious as hell, shit at small talk… I’m too much of this, and not enough of that. I can be strangely literal, and a bit boring as I drone on about something that fascinates me. I’m pretty black and white in my thinking and if you’ve changed our appointment I will be seeming pretty fucking stressed and agitated.
But I’m here, and having a conversation with you – so I can talk.
I’m even looking in your direction, but probably not looking you in the eye. I’m not rocking in a corner, or banging my head off a wall (not today, not in front of you). I’m unable to remember my own telephone number with confidence, let alone memorise a telephone directory. Trainspotting is most definitely not my thing. So obvs… NOT your autistic poster boy.
Soz and all that.
Fuck. I even have a sense of humour and a post graduate degree. I appear somehow to have sustained a happy 20 year relationship and be halfway through raising three kids. I write books and make art (though look closer and you’ll notice my art is full of repetitive patterns and objects carefully sorted by size and colour and lined up to make patterns…look closer and you’ll see the books are about my specialist interests and about me, and are very thoroughly researched by someone who obviously has a passion for data mining.)
I also somehow manage to run a business – I am not one of the 87% of unemployed autistics… because I have the “privilege” (fuck you, Educational Psychologist woman) of employing myself (along with all the incredible risks that go with it… sick pay, what’s that? Unemployment benefit… pension…holiday pay??? Oh yes, as you say, privilege!) and therefore setting working conditions… and being in charge of picking my working colleagues that allow me to function… most of the time.
But autistic… no! Step away from the label, woman, stop trying to get attention for yourself.
(BTW who suddenly made YOU a psychiatrist… or an expert on me… ? But I digress!)
You see, because my brain differences are invisible… that tends to make me and my very real struggles invisible too.
The problem is I don’t LOOK autistic.
Whatever that is.
Or rather I don’t look how people EXPECT autistic to be. Even though, chances are you have at least one closet autistic adult in your family, a couple in your church or office or at the school gate. That is the law of numbers. Between 1 in 36 and 1 in 64 now, depending on who you believe.
But we have hidden in plain sight most of our lives. Odd children. Weird adults. Struggling in private. Functioning in intermittent bursts, before disappearing unnoticed.
I don’t SHOW you autistic. I am a chameleon, it is one of the reasons I have survived so well. But hiding from the bullies also means being able to hide from most professionals. The rest of the time I lie low and struggle to function “normally”. Or at all.
Which is how you can slip under the radar for nearly four decades.
That and autistic girls outside of institutions didn’t exist in the 80s.
Nowadays the figures range from 1.33:1 to 16:1. The average and most regularly reported estimate is a ratio of 4:1 autistic boys and men to autistic girls and women. Back then it was far higher.
As I said: unicorn.
And yet, here I am. Farting rainbows… and being invisible.
But also wayyyyyy too demanding and weird. Go figure.
The problem with not LOOKING how people expect a cardboard cut-out autistic to look is … you have to identify yourself.
In public.
To strangers.
Again and again.
And when you do, you get the double weird look.
The first one, because you’re acting weird and they don’t know why. And it kind of freaks them out a bit. Cos, like, just be normal woman!
The second is, having excruciatingly outed yourself in a highly-stressed state, you get the look of disbelief – YOU’RE not autistic!
And so, I ordered myself a JAM card – free jam not being one of the perks of autism unfortunately (my two favourites are nectarine and sweet geranium, and loganberry – just so you can keep me in supplies until our Government understands the real needs of autistic women!!) JAM standing for Just A Minute. The idea being that you hand it to the not-so-friendly shop assistant, the impatient bus driver, the scary nurse and they turn it over, read the back that says – Just a Minute please, I’m autistic.
But I’m far too scared to use it. Because my anxiety tells me that what will happen is that they’ll take it, read it, look at me, decide it’s not mine… and look over my shoulder for the autistic boy I’ve just mugged.
Shit, sorry, not supposed to have a sense of humour… anyways…
So I’m going to be exhibiting my art and selling my books at an all autistic conference here in Cork, on 24th of February. I’m excited and nervous. In a room of autistic folk the relief is that no one is going to be doubting my belonging.
But sharing about my participation to the outside world… it’s still… like I’m trying to get the disabled parking space from the proper disableds…
I’m not.
Let me reassure you: being autistic doesn’t entitle you to good parking spaces.
Or anything else for that matter… without a massive fucking fight.
And a long fucking wait.
Don’t get me wrong – I am so, so glad I got my diagnosis, exactly a year ago now. Sure I’ve wondered sometimes if maybe he was being nice, giving me the Aspergers label (like, seriously, who actually wants to get a label to feel special? not me, my entire aim in life has been to be normal.) But multiple generations diagnosed the same way now by different folks… umm, that makes any armchair doubter officially wrong.
Anyway, the psychologist who diagnosed me advised me: don’t rush it, Lucy, it takes about a year to integrate this information. And it has. Almost to the second. It has been a massive year of reprocessing who I am, how I am, why I am as I am. And doing this across the generations too.
It also happened in the hardest year of my life. But from that my book Medicine Woman was born, whose presence is helping so many other women. I would never do that year again. I don’t have to do it again. But it was worth it. Beyond measure.
I am going into this year with a degree of self-understanding, and the dearly appreciated understanding of those around me, that has been absent all my life. I no longer have to invest all my energy into trying to pass as normal. Which is such a relief.
I am as I am.
I don’t want your pity. I don’t want to be treated as any less intelligent or creative or generally fabulous than I am. I am not suddenly different.
But I do, as my closest folks know, need allowances made in high-stress situations that lead to anxiety, overwhelm and meltdown: new situations, social situations with new folks, dealings with professionals, airport security, hospitals, shop counters… so that I can access these services and live a full life.
It’s unlikely that you will see me at many drinks parties, loud pubs, large concerts…unless all the stars are aligned and my anxiety is at zero. But engage with me on my work, on books and art and words and facts and colours, come play a board game with me or cards, come cook with me or make a spiral and you’ll see me as I am.
I need you to know, in case you are wondering, that there is no advantage out in the world to this label, except from other Aspies, and the occasional enlightened professional, or kind human who has a relative and knows the story.
To the rest of the world, I am a unicorn.
And as you may be aware, services for unicorns are limited.
But things are changing, slowly. Unicorns, you see, do exist. My daughter was right all along.
Until now we have been named and defined from the outside, we have been talked about, not talked to, we have been observed and fixed, medicalised and medicated. Our deficits have been the main focus… not the fact that we are living in a world that simply was not built for us, or even with our needs in mind.
But things are changing – we are advocating for ourselves, resourcing our communities, coming out of the neurological closet.
We are organising conferences, writing books, making changes in classrooms and airports and hospitals that actually benefit everyone. We are using our spidey senses, our superpowers of empathy, our love of data and patterns, of colour and words. And we’re being the change we want to see.
Last night I went to the opening of Stuart Neilson’s exhibition Creating Autism, a fascinating exploration of autistic vision through the harnessing of technology… including some beautiful spirals. The Opening was a real who’s who of the autism world in Cork. It’s on for the whole month, so do pop in and take a look. Stuart’s work will also be at the @ausomecorkconference on 24th February. As will one of my spirals made of buttons. I’ve had some of my spirals printed onto gorgeous thick card, so they’ll be available there and the rest will go up onto our webshop.
I was really heartened to hear there that our local hospital, CUH is currently undergoing a process to become the first Austism Friendly hospital in Ireland – as someone who is terrified of hospitals, but has to go regularly with one of my children, I can’t tell you how wonderful this is.
The compere for the night was from Aspect, Ireland’s only adult autistic people’s service – again only in Cork. He shared that it was a pilot project, set up on 2006, and supposed to roll out across the country. And then austerity hit. I am on their year-long wait list.
Two of the biggest experts in the country are based here. As are two of the main autism conferences. And a fabulous Cork Women’s Asperger’s Group, founded and run by a passionate Aspie, to give a place of support for other women who are in the process of discovering their autism, and a safe place to gather.
And yesterday I went to the Youth Health Service with one of my kids – again the only one of its kind in Ireland – whilst my husband took another to Cope – the main charity that does the Government’s work in dealing with children and families on the autism spectrum. To say they are overwhelmed and under resourced is an understatement.
I am so grateful for all these allies, these folks dedicating their lives to making our experience easier.
For most of my life I longed for people to understand, to believe me, to believe in me. Not just celebrate the glitter and leave me alone in the darkness. With the understanding that the Autism Spectrum title identifies, I can finally be believed.
This is what diagnosis has brought me.
I can finally learn what it feels like to be myself in the world. Rather than an apology in a world where I do not belong.
At long last I believe in myself. In my own rightness. After a lifetime of believing I was innately wrong.
And more than anything else, that is what matters.
The final part of this very long post is a book list, one I have collated from the books I have found most useful. My job is and always has been a book medicine woman – I read a lot for personal and professional reasons – my life is built of books, and I have a dedicated Amazon delivery driver ;).
I am regularly approached, since “coming out” by women who are at the beginning of this journey, wanting books to help them. So here, at long last, is the list I promised many of you, including the lady who approached me at the exhibition last night, who came to say how meaningful my words had been – fuelled by anxiety and adrenaline, spoken shakily into a microphone – a less ranty version of the above.
There’s a lot of resources here… one clue that you might be an Aspie is that you’ll tumble down this rabbithole of information and devour it all… and still be hungry for more!
LIST OF RESOURCES
Am I maybe, possibly autistic? Good places to start your journey…
Online checklists
Females with Aspergers checklist by Samantha Craft
AspienWoman checklist by Tania Marshall
Online Aspergers “quiz” based on the Cambridge ASD test
Commonly connected/ co-morbid conditions – Google is your friend!:
Anxiety
Depression
Ehlers Danlos Syndrome (especially hypermobility type)
Sensory Processing issues
Auditory Processing Disorder
Misophonia
OCD
ADHD
Dyslexia/ Dysgraphia
PTSD
Chronic Fatigue and Autistic Burnout
Executive Function – understanding this core issue at the heart of many ND struggles – Musings of an Aspie*
Books
#actuallyautistic authors marked with an *
Odd Girl Out: an autistic woman in a neurotypical world – Laura James* written by an established UK journalist, diagnosed in mid-life.
Divergent Mind – Jenara Nerenberg* – groundbreaking book exploring what neurodivergence is and the strengths and gifts it brings. (I contributed to this.)
I am AspienWoman and I Am Aspien Girl – both by Tania Marshall* – quotes and images from autistic women and girls about their strengths and struggles…a light introduction…great checklist at the back for those wondering if they are on the spectrum (check list also available online – see above.)
I Think I Might Be Autistic: a guide to Autism Spectrum diagnosis and self-discovery – Cynthia Kim*
Women and Girls with Autism Spectrum Disorder – Sarah Hendrickx*
Aspergirls: empowering females with Asperger Syndrome – Rudy Simone* reflections of women and girls struggles in all areas, by place: school, home, university etc with first person contributions from a large number of women and girls on the spectrum.
Medicine Woman: reclaiming the soul of healing – Lucy H. Pearce*
She of the She – Lucy H Pearce* exploring the call of the sea from many perspectives, including my personal autistic journey.
Reframe Your Thinking Around Autism – Holly Bridges*
Autistic Zebra, a fellow Aspie bookworm has an incredible list of 30 books here all by autistic authors, that she read 30 in a month, last year, to celebrate autism month.
The Electricity of Every Living Thing and Wintering – both by Katherine May* – first person reflections on life, motherhood, mental health and nature through a philosophical autistic mind.
Diary of a Young Naturalist – Dara McNulty* award winning nature diary through the eyes of an autistic teen.
PDA by PDAers – find out what this demand avoidant subtype of autism looks and feels like first hand via discussions and reflections from adult PDAers
Books about the autistic experience that are worth their weight in gold
The Nine Degrees of Autism A range of NT and autistic contributors*
Cornflakes for Dinner – Aidan Comerford – A father’s perspective of having non-verbal autistic daughters
The Autism Spectrum and Depression – Nick Dubin*
Asperger Syndrome and Anxiety: a guide to successful stress management – Nick Dubin*
NeuroTribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently – Steve Silberman
(Hot off the press and on my to-read list)
Spectrum Women: Walking to the Beat of Autism – Barb Cook and Dr Michelle Garnett. Foreword by Lisa Morgan. *
Camoflage: the hidden lives of autistic women
The Pattern Seekers – Simon Baron Cohen
Sensory Processing and High Sensitivity
The Highly Sensitive Person: how to thrive when the world overwhelms you – Elaine N. Aron. Useful for those who perhaps don’t fully click with the autism label/diagnosis, or as a step on the path to self understanding
Too Bright, Too Loud, Too Tight, Too Fast – Sharon Heller
Quiet: The Power of Introverts in a World That Can’t Stop Talking – Susan Cain… and Quiet Power for teens. Useful for those who perhaps don’t fully click with the autism label/diagnosis, but are quiet/introverted
Geek Girl series – Holly Smale* – about an autistic girl…author only diagnosed herself after having written this bestselling series based on her own teens.
Aspergers, Autism and PDA in girls
I am Aspien Girl – Tania Marshall*
The Girl with the Curly Hair *
Pathological Demand Avoidance Syndrome: My Daughter is not Naughty – for those dealing with demand avoidance, violent and controlling behaviour rooted in anxiety…paints a very real picture of what PDA is from a lived perspective.
General books on parenting and supporting your AS child – ungendered
The Autism Discussion Page – Bill Nason – blue and green books
Different like Me: My book of autism heroes
Publishers – Jessica Kingsley Publishers are the leaders in the field.
The Curly Hair Project *– a great resource for understanding neurodiversity in both girls and boys.
Courses
Holly Bridges – fabulous therapeutic approaches for parents, therapists and autistic adults – highly recommend her courses.
Online Resources
As I am – Irish autistic charity started by an autistic man, centres the experience and voices of autistic people in their advocacy, leads many community education and accessibility projects.
Struggle Care* – excellent support, tools, techniques and tips for self care and household tasks for neurodivergent folks who struggle.
Neurodivergent_Insights* – fabulous resources for further understanding and supporting ND folks, from an ND therapist…also check out her excellent downloadable free resources
The Lost Girls Project – www.thelostgirlsproject.com
Articles and blogs
Understanding autistic shutdown and the nervous system
Living with Rejection Sensitive Dysphoria
A really useful article by an autistic woman on autistic burn out, regression and fluidity
Reticulating Spline Theory – Luna Lindsey* an autistic version of the Spoon Theory of chronic illness
Autistic brains, melatonin and DMT
ADDitude Magazine – excellent online magazine reporting current research and best practice for ADD/ADHD
Autism: why are we still not spotting the girls? Times Educational Supplement, January 2019.
Thousands of women and girls going undiagnosed due to gender bias – The Guardian, September 2018
Women Excel at Hiding Autism – Science Nordic
Beyond the Talk: What Else Autistic Girls Need to Know about Puberty – Musings of an Aspie*
Autistic Women and Girls – Amaze.au
Autistic Women and Nonbinary Network
Having Autism Made me a Better Mother – interview with Laura James
When mum and daughter are both on the autism spectrum – ABC.au
Cork Woman Changing the Face of Autism – interview with Evaleen Whelton, organsier of the Ausome conference.
A Voice Unleashed – entire blog on women and autism, approaching and accepting diagnosis
Suddenly it all makes sense – My blog post after my diagnosis
Untangling the ties between autism and obsessive-compulsive disorder – Spectrum News
My Favourite Women’s Autism Facebook Pages
Jenara Nerenberg and the Neurodiversity Project
You Know You’re Autistic When…
Not a woman…but a leading voice on the PDA experience… Harry Thompson PDA Extraordinaire
Facebook Groups
The SEND VCB project – (parent support and resources group for parents of children with additional needs who are expressing violent and controlling behaviour. Run by Yvonne Newbold OBE a parent who has experienced years of VCB and now mentors and supports other parents. She offers extremely affordable online and in person seminars that I would highly recommend).
The Autism Comedy Club – one of the best geeky humour groups…and where you can safely ask folks to explain jokes you don’t get
Neurodiversity Newstand – ND research and articles
How 2 EntrepreNeuro – group for ND entrepreneurs
In Real Life – Cork/ Ireland
Ausome Conference, Cork
As I Am conference – Dublin
Creating Autism exhibition
Podcasts
Square Peg podcast – excellent podcast dedicated to interviews with female and non binary autists – covers all aspects from diagnosis to supports in education, through disability and creativity
Interviews about autism, neurodivergence and high sensitivity
Finding Safety, Acceptance and Belonging as a Neurodivergent Woman on Unlock Your Magic
The Intuition Conversations – intuition, creative authority and neurodivergence.
The Menstruality Podcast – how to thrive as a neurodivergent cycle-aware changemaker in a linear world.
Square Peg Podcast: women’s health, intergenerational autism and giving language to the autistic experience
The Secret Witch Show – How to reclaim the magic of our sensitivity
Primal Happiness talking ND with the ND presenter
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