Late-Identified Autism Interview: The Neurotypical World Forced Me to be My Own Oppressor
This is my 10th interview in my series Interviewing Late-Identified Autistics. Jane McNeice is a late-identified autistic. My questions are in bold and Jane's responses follow in regular typeface.
How old were you when you learned you were autistic?
I self-identified at 44 and was diagnosed on 22nd June 2021 at age 45.
How did you learn you are autistic?
From a Facebook post by Sunshine Support CIC, which included less than 90 words. I knew immediately.
How did you decide whether to self-identify or diagnose?
There was no question. I pursued a diagnosis at the earliest opportunity. I had searched endlessly for my identity for 45 years and suffered not knowing – I started the process immediately and paid private – I had lost too much time already. I had previously been mis-diagnosed with Generalized Anxiety Disorder (GAD), Social Anxiety, and at one point paid to see a private psychiatrist because I thought I had Obsessive Compulsive Personality Disorder (OCPD). I did not receive a diagnosis of the latter, but its symptoms do largely mirror Autistic traits (just with a negative narrative for everything I am). Instead, the pre-existing diagnosis of GAD was re-affirmed, and the new diagnosis of social anxiety given. I am yet to find a psychiatrist who can tell me the specific difference between the two diagnoses of OCPD and Autistic Spectrum Condition. My personal view is few are knowledgeable enough on both conditions to answer that, and I personally believe OCPD needs to be removed as a diagnosis from DSM-V and ICD-11.
How did you feel when you learned you were autistic?
Totally and utterly life changed. I felt like someone had told me I was no longer diseased. I had an explanation for my entirety and everything that had happened to me in my life. It was an explanation that did not include ‘You are bad, wrong, do not belong, and do not deserve to exist.’
What is your gender? How do you feel this impacted your journey as an autistic individual?
I am female, I identify as female and want to be female. I also present the female Autistic phenotype, and traits often seen in Autistic girls and women. For example, I heavily socially mask and have done so since the age of 3. I have so many masks and have done this for so long, I even mask in my dreams! Because I present the female phenotype, I was missed for 45 years. I believe my being missed is wholly related to my being a female with Autism, and I see the ‘lost girls’ as an illustration of a generation of health inequalities in females with Autism.
How did any other of your identities (ex. race, religion, sexuality, etc.) impact your late identification as autistic?
I could now understand them through the lens of being Autistic. I actually notice for example that a lot of diagnosed (and undiagnosed) women are drawn to alternative religions such as spirituality, and I believe a lot of ‘lost girls,’ the undiagnosed Autistic females, could be found frequenting spiritualist churches. All my other identities e.g. motherhood have been shaped by my being Autistic. I sought solace in some of these other identities while searching for the primary one I was missing. I became a mother at 19, and my daughter became a mother at 16. She too was late diagnosed Autistic, two months after me at age 26…and my 8-year-old son 3 months after that. Three diagnoses in the last seven months of 2021! All were self or parent identified, not professional identified, and all now have a formal diagnosis.
How did your friends and family respond when you told them you are autistic?
Some reacted with disbelief. My mum for example. My late brother had ASC and a learning disability and was diagnosed at age 8. Since I presented so differently, my mum could not believe it and blamed herself for missing me. Some friends and family members haven’t responded at all. I don’t think they know whether to congratulate or commiserate me. I’ve also had the “but you don’t look Autistic” brigade.
Did you seek out therapy, coaching, or other forms of structured support for autism?
No, I have been lost for so long I have developed a lot of survival techniques (they go beyond coping mechanisms) already. However, on and off during my life I’ve needed therapy, and I’m not ruling out whether I could do with that at the moment. I struggle with September onwards in terms of my mood levels. If I feel I need it, I will seek it, and I know where to go. However, I would now be looking very specifically for a therapist who has supported Autistics and knows how to support Autistics. I’d also be looking towards a therapeutic intervention that is shown to be effective for Autistics, not CBT!
How has learning you are autistic impacted your life?
It has transformed it. I am now learning to live a more authentically Autistic life. This is difficult as I have lived not knowing for so long that I have internalised so many neurotypical ideals and ways of being that it is not so easy just to stop doing this. The neurotypical world forced me to be my own oppressor. Creating authenticity will be progressive for me. I am trying also to be me without apology, but again I am struggling. I literally do not know if I have the years left to put right the wrong that was being missed for so long.
How have you modified or adapted your life since learning you’re autistic?
Trying to protect my downtime and decompression time
Being open about disclosure
Writing my lived experience in ‘The Umbrella Picker’ and sharing a very personal and vulnerable account of my life, including abuse, mental illness, suicidal thoughts, and the positives of my brain type
Moved house to provide more space for myself and my Autistic son
Self-care has moved up the ranks to top priority, but I do still struggle with over-working. My work is one of my obsessions.
In what ways does being autistic enhance your life?
As yet it is maybe too early to say. The diagnosis allows me to accept and learn to love who I am. I could only ever do this once I had found out who I was, rather than the endless searching. My building of self-esteem could only really start from 22nd June 2021. I searched in the criminal fraternity for my identity for 5 years – I have a first-class honors degree in criminology. I searched in mental illness for 14 years – I have a successful mental health training company. Even my career is testimony to a life searching for myself, and trying to ease the suffering of others, because I know suffering. But I am highly determined – I am running the London Marathon for the second time on 2nd Oct. I can pattern spot 78% faster than my neurotypical counterparts, and my obsessive hyperfocus on topics I find of interest makes me very knowledgeable on them. Mental health is one for example, and I have made a career of it.
What are some topics or activities you’re passionate about?
Mental health, running, Autism, reading, travel, anything ethereal and spirituality.
What does a typical day look like for you?
I do not stop, one task to the next, with time management down to precision. One of my friends calls me ‘Jack Bower’ so I think this sums it up. I operate like a machine, but I do not want to. This is in part because I work in my field of obsession, and therefore I am successful in my field. My business is undeniably a product of my Autistic obsession in mental health.
If you work, what do you do for work?
I own www.mindmatterstraining.co.uk We deliver mental health, resilience, suicide prevention, and management training courses in mental health. We deliver both online and face-to-face, national and internationally, over 150 courses per year. As I type I am sitting in a hotel in Warwick ready to deliver Higher Education Mental Health First Aid to Warwick University tomorrow. A group of professors no less!
Is there anyone else in your family who is autistic?
My 72-year-old mum – undiagnosed but totally Autistic!
My late brother who died at 41 of bowel cancer – and which I indirectly relate to his being Autistic
My 26-year-old daughter
My 9-year-old son – both son and daughter have different fathers, so I am genetic link. My family highly illustrates genetics part in Autism
I have four grandchildren, all awaiting assessment for Autism!
Cousin twice removed diagnosed with Asperger Syndrome
Question over my husband and son-in-law too. We connect with our own kind do we not?
What are some of the challenges you face in being autistic?
Social masking and learning how not to
Sensory processing issues and hypersensitivity to light, noise, and cold
Struggles expressing how I feel verbally
Phenomenal gastric problems. I have to medicate with dihydrocodeine in social situations and to deliver my training courses
Relentless anxiety that never ever goes away. That is how I knew my anxiety disorder diagnoses were wrong, as my anxiety is not episodic. Anxiety disorders are episodic, which means they go away, even if an episode is years long. If my anxiety was a disorder, I have had a 46 year long and ongoing anxiety disorder, despite interventions of various kinds!
Obsessions that form part of my basic needs. I always say Maslow’s Hierarchy of Needs should be adapted for Autistics. Our obsessions feature at the bottom with basic needs. My daughter says my obsessions come before all else – she says this in the nicest possibly way 😊 but I totally understand what she means. The worst part? Living with the guilt of that.
I do not know how to relax. I do not switch off; I talk too much. I overshare. I am very self-critical.
Overwhelming guilt for all the above.
Suicidal thoughts on a frequent basis which I battle. I’m here to write this, so I have won the battles so far, but not the war.
Intense fear of conflict, which causes me to have suicidal thoughts.
Periods of Autistic burnout from over-doing things.
Food issues which may appear picky.
The list is endless…
What helps you prevent or cope with moments of overwhelm?
Reading, sleep, solitude, and running.
What skills or strategies have helped you to work with your autistic mind?
High levels of organisation, with lots of reminders
Ruling out unknowns and controlling things
How does your autistic identity impact your friendships?
I socially mask with friends, so I feel guilty for not being totally authentic. I do not always speak my mind for fear of offending or to avoid conflict. I am subservient and amenable. The person who ultimately suffers is me. Sometimes I feel like I’d be best alone and away from all people.
How does your autistic identity impact your romantic relationships?
I know that I talk about Autism a lot (we call it the ‘A’ bomb!), and this must really annoy my husband at times. I apologise for this. I will come across as self-obsessed at times, but it is because I was searching for so long. I have been twice divorced, and the relationships, age gaps, and breakdown of the relationships can also be explained now through my now diagnosis. I think my second husband was undiagnosed Autistic too, but I no longer have contact with him. He may come across my book. I cannot totally rule out my current husband being Autistic too, there are signs. He does not want to pursue this. It certainly helps us both to now know what we are working with.
What is your experience with medical systems? Are there ways you feel they can be improved for autistic individuals?
Definitely. People keep saying support is what is required, but I truly believe we are not yet passed completing the awareness phase, before we even think about acceptance and support. We have calculated that, collectively, myself and my children have been exposed to well over 100 health, social care, and educational professionals, and yet none ever said, “Do you think your challenges could be explained by you being Autistic?” “Do you think your child could be Autistic?”
How did being an undiagnosed autistic child impact your childhood?
It left me thinking that everything I was, was something bad, unlovable, and unaccepted. I masked to hide all this and to fit in, and I do it very well, but the feelings were still there. I was also sexually abused by another child, and I think, had it been known I was Autistic; I may have been protected more.
What ways did you camouflage or mask?
I socially mask with everyone except my husband and children. I have different masks, and when at social gatherings of people, I mask amongst (with different masks) sometimes I don’t know which mask to wear.
How has your identification as autistic changed how you view your childhood or earlier periods of adulthood?
Knowing I was an Autistic rather than Allistic child has absolved me of so many situations where I thought everything I was must be bad. It explains the times I felt out of place and uncomfortable, the times I felt tired and why, the things I enjoyed, and the things I didn’t. The suspected Dyscalculia alongside my Autism diagnosis explains why I over-achieved in all academic areas, except math’s where I have a GCSE grade E. I now realise I have been battling other things that just were not known at the time. It legitimizes my struggles, rather than makes me feel a fraud, which has often been the case.
How did being an undiagnosed autistic impact romantic relationships?
I had no explanation for my behaviors. I was not offered the compassion that might have been given were my relationship partners to have known. Instead, I was seen as routinized, and my ex often called me “Sue” in mockery of me being like my mum about routines. Mum and I both now know we are Autistic, and our routines are our obsessions. Around the time of our split, my ex-husband told me I was self-absorbed. If I had known what I know now, I could have said “Yes, because I am trying desperately to work out what is wrong, and I can only do that by turning myself over and inside out. Give me another 12 years and I will tell you why!” This is one of the many reasons he could do with stumbling across my book. He too is Autistic, but he does not know.
Talking to Others About Autism
How do you describe autism to people who are not familiar with it?
I have a different brain type. It is different, not wrong, and I live in a world not built for my brain type. Instead, it was built by, and for, people with the majority brain type. Living in that world is hard, I suffer, but I suffered most during the part of my life when I did not know I had a different brain type. I am Autistic. I do not have Autism, suffer from Autism, and I’m not on a spectrum. My being Autistic has some Au-some features, but make no mistake, the difficulties are greater than the awesome. Some days if you offered me a miracle cure, I would take it, and for my children and grandchildren. Other days I’m okay with it. It is dictated by how much of a challenging time I am having. Then I usually rant about how I was missed for too long and how awareness amongst professionals needs to change.
What do you wish others knew about autism?
How damn hard it is to live with. We are not making it up, we are not overreacting, or over dramatising, we are being honest. And for what its worth, you will always get an honest response from Autistics.
What is your advice for someone who thinks they might be autistic?
I would say, get a diagnosis, but I hold back from doing so because I must remember that for me it was important because of my frame of reference, but for others it might not be. I try not to advise others, but rather empower them to decide for themselves. My advice may not be right for them. My best solution may not be their best solution.
Are there any resources (books, articles, videos, etc.) you would recommend for people who just learned they’re autistic?
My book 😊 ‘The Umbrella Picker’, but there are plenty of others worth a read too. My view would be read widely around the subject matter, understand it, and you will understand you. Connections will be made.
Are there any resources (books, articles, videos, etc.) you would recommend for people who are exploring if they might be autistic?
As above, perhaps even more so if they are exploring, as my book will solidify their belief. I have written my lived experience in a way that if you were a ‘Lost Girl’ you would likely self-identify from it.
Are there any autistic characters in books, tv, or movies that accurately reflect autism? Which ones?
Shaun Murphy in ‘The Good Doctor’ but do keep in mind that he has Savant Syndrome. The show also tackles stigma which I believe makes the story more complete.
If someone would like to connect with you, how can they reach you?
email@example.com or firstname.lastname@example.org
Do you have any works, websites, or other creative ventures you would like to share with others? (please provide links)
My business www.mindmatterstraining.co.uk and my blog https://www.mindmatterstraining.co.uk/mental-health-blog/
My author website (nearly launched). This is the development page https://combinestudio.dev/umbrella-picker/
Thank you for reading. If you are a late-identified autistic, I would love to have you participate in this series. Please email me at email@example.com if you are interested.