Late-Identified Autism Interview: My Own Life Felt Like Walking a Tightrope
This is the 19th interview in my series Interviewing Late-Identified Autistics. Charlotte, is a late-identified autistic. My questions are in bold and Charlotte's responses follow in regular typeface.
How did you learn you are autistic?
Whilst I was bringing up my stepson Dominic. We fought a long battle to get his diagnosis, which stirred a suspicion within me that never went away, triggering the start of obsessive research into undiagnosed female traits.
How did you decide whether to self-identify or diagnose?
I did push for the diagnosis as I had no choice - mostly to try and eradicate the numerous incorrect, detrimental mental health diagnoses I had been labelled with and judged by, over a period of 25 years plus.
How did you feel when you learned you were autistic?
I was devastated. I felt sick, alone and a deep sense of bubbling, uncontrollable grief. The biggest kick in the teeth for me was the psychiatrist that immediately said “I thought this was what you wanted?” I was angry. It took all my strength not to retort that the ‘Kubler-Ross’ grief cycle (psychiatrists model) was naturally playing out! I had been diagnosed with ADHD/ADD quite a few years before, which was no surprise at all. In honesty, I still have days where I doubt the ASD diagnosis, as PTSD (complex) can present nearly identical traits. It appears the more layers of trauma I unravel and process, the less neurodiverse traits I show. I hope to write more on this subject in the near future.
What is your gender? How do you feel this impacted your journey as an autistic individual?
Female. I feel being female prolonged diagnosis due to the DSM-V criteria being very male orientated. The emerging evidence is showing that the extent of female masking can be devastating for mental health and also prevent diagnosis, making this already difficult time a battle for many females. Sadly, the DSM-V (and ICD-11) are currently the main diagnostic tools used by medical professionals. In my opinion they have pretty archaic criteria when it comes to females.
How did any other of your identities (ex. race, religion, sexuality, etc.) impact your late identification as autistic?
I am a white British heterosexual woman. I was born a Christian and now choose to explore and study many other religions. I believe the only factor that contributed to late identification is my gender.
How did your friends and family respond when you told them you are autistic?
At the time there was an apparent strong element of shame and obvious tension surrounding autism within the complex familial dynamics. Some of my friends were vocal, openly disagreeing with the diagnosis, whereas others seemed sympathetic and almost sad. In honesty, the wide range of responses confused & isolated me further, in terms of positive steps towards a stable identity. To this day it still feels very ‘unspoken’, as though there's an invisible cloak of shame present. I can only conclude that perhaps some people don’t agree with the diagnosis, which is fair enough.
Did you seek out therapy, coaching, or other forms of structured support for autism?
Yes! I was in a very raw state and needed support to process and accept this life changing news. I was put on a NHS waiting list which was over 4 years long. Sadly, at the time I had strong & frequent suicidal thoughts and feelings, but at the time I wasn’t in a position to fund support myself. This was a very dark time in my life.
How has learning you are autistic impacted your life?
It has helped me to understand and unpick my patterns of behaviour in terms of what relationships I attract, my difficulties in group dynamics and frequent bullying patterns I have attracted and experienced. It explains how my brain works differently and why I can see patterns in everything. It explains my levels of vibrancy, expression, enthusiasm and excitement, which are completely natural for me, with the right tribe.
Your Current Life
How have you modified or adapted your life since learning you’re autistic? I have a lot more awareness of my shortcomings/challenges and I suppose I don’t try as hard to ‘fit in’ to suit others. I’m much more tuned in to my nervous system and which people or situations are prone to cause overwhelm or meltdown. I definitely honour my self care a lot more and I’ve had to learn unusual or innovative solutions to prevent these tricky situations. This is an ongoing and sometimes painful daily battle, with little compassion or allowance from society - interestingly, more so from those with the knowledge that I have the autism diagnosis. It appears that children are allowed to display autistic traits, but if adults do, shame on them! There are very few people I can be my ‘true’ self with which makes me deeply sad. I have to choose my tribe carefully.
In what ways does being autistic enhance your life?
I am told by those that know me very well (in an energetic capacity) that I have an incredibly deep level of genuine empathy, to the point that I can literally ‘feel others' emotional pain strongly. Although this is not the case if I’m in sensory overload (quite the opposite!). These traits sadly aren't as apparent within my family dynamics, therefore some may be surprised to read this. The feedback I get from my Shamanism work shows that my sensitivity allows my work and healing to become exquisitely raw and allows clients to experience very deep healing, with no judgement. I don’t follow the crowd. I am definitely not a sheep. I’m a curious soul and question everything. As a result I’m continuously learning and developing my inner self, for me this is like receiving oxygen. It brings me pure joy and I often lose track of time whilst emerged in these ‘obsessions’.
What are some topics or activities you’re passionate about?
Traditional Chinese Medicine & Acupuncture
Dru Yoga/Dru Dance
Altered States of Consciousness/Psychedelics
Vedic Astrology (Jyotish)
If you work, what do you do for work?
I’m a Dru Yoga/Qi gong teacher and have just completed a full time TCM (Traditional Chinese Medicine) & Acupuncture BSc degree. I am an advocate for MIND, a Shamanic Energy Healer and practice ongoing study in the Shamanic & Internal Arts, including initiations living in the woods and other courses/trainings. I am soon starting a MSc in Consciousness, Spirituality and Transpersonal Psychology.
Is there anyone else in your family who is autistic?
Yes, quite a few nephews have been diagnosed and some who are undiagnosed have traits. In my humble opinion some of the adults are neurodiverse. For some, this has been met by either laughter or strong denial. I’ve accepted it’s not part of my journey to persuade or educate people with these traits. Some of them are so beautiful and unique, I really see them. But, in a society where autism is seen as lack, hence the word ‘disorder’, people can be fiercely defensive. I do hope the word disorder in ASD will soon be abolished. (It’s apparently in process).
What are some of the challenges you face in being autistic?
People who talk continuously in very long sentences, with no pauses (especially fast!). This can never be a two way conversation for me as my brain cannot process and in turn interact, due to the sensory overload - it shuts down like a computer. But worse is when I explain more than once and this pattern continues (usually companies on the phone). Most ‘accidentally’ cut me off. It becomes hurtful, over a lifetime.
Most of my challenges lie in busy places like supermarkets (all the beeping noises and strangers in such close proximity), restaurants with high ceilings or no soft furnishings, basically anywhere with multiple and/or cross noises. The only exception is when I am drinking alcohol, which isn’t that common nowadays - then noise and sensory overwhelm is numbed by the alcohol and not too much of a problem.
I have frequently experienced and can still suffer from burnout. I have learned when my self-care and nutrition needs to be stepped up a level, the space and recovery time I need to ‘depeople’, and the landing and processing time I crave between activities/work commitments/social events.
A challenge that never seems to lessen is rejection and disdain from society. Assumptions of dramatism, overacting and demands, are actually in very stark contrast to the reality of: a super delicate nervous system, the request to not be in sensory ‘hell’ and assertion that has taken many years of therapy, training and much courage to voice!
What helps you prevent or cope with moments of overwhelm?
Nature. Prayer. Breathing Techniques. Peace & Quiet. My Dogs. Music. My Drum. Dru Yoga. Trance Dance. Qi gong. Meditation. Gym. Regular self-care on a daily basis (includes McTimoney Chiro/Acupuncture/Ayurvedic & Chinese herbs).
What skills or strategies have helped you to work with your autistic mind?
I believe it’s helpful to embrace our beauty and differences, no matter what they are, or how small. We all have unique gifts to offer our communities and the world. For me, I feel it’s wise to be mindful of my limitations, but also not to focus or dwell on them. I try to focus on the things I can grow and expand, the things I excel at, the things that really energise my soul. And indeed the tribe that recognise and genuinely encourage these parts of me.
I have had to form very strong boundaries to prevent people taking advantage of my kind nature, which in my younger life caused continual burnout. I’m a different person to that of ten years ago, but I would say that the boundary work is ongoing as I am presented with new challenges on a regular basis, especially in business.
What is your experience with medical systems?
Overall sadly not great. The last time I had a medical appointment in hospital I was very suddenly and firmly grabbed by a nurse and when I responded negatively as an auto-response, I was treated in a derogatory manner and then ignored. I have also had some great experiences where I have kindly been offered a quieter place to wait. On the whole, I would say most of the negative issues I have experienced are around others personal boundaries: respect for personal space and permission to touch.
Are there ways you feel they can be improved for autistic individuals? Absolutely. To be “Autism informed” and “Trauma informed,” as most autistic people have experienced trauma from living in a neurotypical world (simplified, to show respect and non-judgment). It's not rocket science. Also what I feel is massively needed is open conversations around autism. I’ve actually heard people lower their voice when they say the word autism. When will this shame be eradicated? If people were held more accountable by their family, friends, colleagues then they may be kinder, more patient and more accepting of autism. I can see progress in the past ten years, so whilst the changing world is slowly being shaped in a positive way, there is still a gaping hole screaming out to be filled with rich and honest conversations, understanding, acceptance and diverse social integration.
Please don’t try & change me. I like me. Don’t try & change my habits, words, behaviours or the way I do things - just because you believe your way is ‘correct’. By trying to make these adjustments you are rejecting the very core of me, and therein lies the societal problem that further stagnates the battle of equality for human consciousness. We aren't here long. Start small, start local!
How did being an undiagnosed autistic child impact your childhood?
The non- diagnosis of ADD or ASD meant that my needs couldn’t be met by teachers or caregivers (not through neglect, but through societal and generational non-recognition), resulting in child development trauma inevitably followed by PTSD diagnosed at 17 years old, which detrimentally affects my daily life and relationships today, as is now Complex PTSD. Picking apart and unravelling which parts are neuro-diversity and which are trauma is an ongoing and complex work in progress which I’m open to and very intrigued by. It has grown into a great interest of mine, it totally fascinates me what we as humans believe we can change and what we actually can change! Hence, my interest in powerful transformative Shamanic initiations and ceremonies or other altered states of consciousness that are transformative to the psyche.
What ways did you camouflage or mask?
It wouldn’t have entered my awareness at the time that I was masking or copying others to fit in. I just assumed everyone else had the same experience as me, having nothing to compare with. But I did always wonder why others seemed to effortlessly flow through life, whilst my own life felt like walking a tightrope. I was mostly unable to sort my tangled thoughts into coherent speech which made any logical sense, so I withdrew into myself. Sadly my innocence, exuberance, enthusiasm and lust for life was quashed and gradually squeezed out of me. It was replaced with abuse, bullying, addictions, trauma, social isolation, severe depression and anxiety. I am very lucky to have survived this dark period, which included masking my severe anxiety with excessive alcohol, drugs, suicide attempts and complete isolation. This self-perpetuating cycle of further addiction and self hatred caused me to become disconnected from myself, others and from the land, from nature. It’s taken many many years of ‘undoing’ and unraveling to challenge and burn away the ‘stories’ I thought were real and to reveal the essence of who I truly am. The wildness of my Shamanic work and ceremony helps me greatly to connect back to my true self. I call it ‘the remembering’.
How has your identification as autistic changed how you view your childhood or earlier periods of adulthood?
It has allowed me to understand why I spent a lot of time alone as a child, many hours upon hours in nature and be completely content. I used to make potions, perfumes and be enthralled with insects and building dens, wigwams, climbing trees. It was like a world playground and my most natural and free state of being.
The happiest memories of childhood were in nature, outdoors, swimming or dancing. Anything I felt ‘unrestricted and free’. I’ve never been a big fan of big groups, although I can be a little show off at times! It has to be with the right group of people though, with whom I feel very comfortable. People see flashes of it when I teach Yoga sometimes as I am in my element of freedom.
I remember I could never hide my feelings or face! Social events at the wrong time were like hell for me, that forcedness and fakery just made every cell in my body cringe and crawl with incongruence. I remember strongly feeling energy from a super early age, good and bad. If there was a bad atmosphere I could sniff it out from ten miles away and it would suck me in, consuming me like a vortex. The energy in church was beautiful and at times it really moved me. I always had a nagging gut ache with the mismatch between the teachings and the way adults treated each other or behaved. To me it was a paradox one step too far, one that I could never accept. In hindsight, I think this is why I partially rejected religion (especially Christianity) so young.
Talking to Others About Autism
How do you describe autism to people who are not familiar with it?
If you’ve met one person with autism then you’ve met one person with autism! A video I once watched on YouTube really stuck with me, simply explaining autism as either ‘too much’ or ‘too little’ of traits, behaviours or emotion. After years of watching thousands of similar videos this one had a resonance that satisfied my ‘pattern’ brain and applied to every person I know that has autism. It still does, to this day. I appreciate it's a total over-simplification, but the simplicity and accuracy spoke to me.
What do you wish others knew about autism?
Please know your wall of silence not only promotes further shame and lack of acknowledgement, but in turn screams rejection for all those who are neurodiverse. Not just me, but every single child or adult. Let's talk. Ask me questions, make conversation, but above all be kind. No human should ever have to experience the painful reality of neurodiversity being the ‘elephant in the room’. I respectfully ask to be validated for me and accepted as part of society, as you are. I’m diving into a deep well of pain to write this and showing huge vulnerability and bravery. Please don’t speak ‘at me’ incessantly with no pauses and expect me to have an intelligent and fruitful conversation, it has to be a two way thing. Finally, if you choose to suddenly poke, shove or push me unexpectedly, know that you may receive a spontaneous involuntary response.
What is your advice for someone who thinks they might be autistic? Carefully weigh up the pros and cons of a diagnosis. Talk this through with a few trusted people who you know will not exercise judgment. Please bear in mind that family sometimes can’t see you as anything other than ‘Charlotte’ or ‘Jane’ so they may not be the best people to ask. I had ‘reassuring’ advice from family members saying ‘of course not, don’t be ridiculous’ which clarifies the societal perception of lack and that neurodiversity is mostly negative. Caring and well intended of course, but not particularly helpful within the bigger picture of acceptance and my inner clarity.
Why do you want the diagnosis? Consider what would be the main benefit of your diagnosis. How would your life improve? Do you have support in place for the aftermath? Finally listen to your gut intuition - always.
Are there any resources (books, articles, videos, etc.) you would recommend for people who are exploring if they might be autistic?
I think the best place to get honest, up to date, raw stories and experiences from real people is Medium or other blogs. Anything that doesn't have a power, money or government spin or agenda.
Are there any autistic characters in books, tv, or movies that accurately reflect autism? Which ones?
I have to say that most portrayed are male and very obviously autistic, which only represents a tiny percentage. It’s a start of course, a step up from Rainman. I saw a video on You Tube where a guy had to date four girls and then figure out which one has autism. Guess what, they all did! Imagine programmes like that on mainstream tv, now that would make people sit up and take more notice.
Christine Mcguiness and Melanie Sykes are the only people I feel that have ever accurately represented female autism. Purely because it’s not blatantly obvious, as can often be the case in reality. They are attractive, successful business women but have their struggles as documented on tv. I admire Christine, her vulnerability shown on tv will have touched the hearts of millions and given millions more permission to be themselves, flaws and all. Go Christine!
Connecting with You
If someone would like to connect with you, how can they reach you?
Do you have any works, websites, or other creative ventures you would like to share with others?
I’m really not a big social media fan, although my various plans for collaboration for wellness workshops, day retreats and community projects will no doubt reluctantly drag me kicking & screaming onto social media eventually!
Thank you for reading. It’s my goal to reach 100 interviews. If you are a late-identified autistic, I would love for you to participate in this series. Please email me at email@example.com if you are interested.