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Jackie Schuld Art Therapy Blog

Misdiagnosed No More: A Late-Identified Autistic Interview

This is the 30th interview in my series Interviewing Late-Identified Autistics. Druxilla is a late-identified autistic. My questions are in bold and Druxilla's responses follow in regular typeface.

 

What name and pronouns do you use?

Druxilla or Lana D. are both fine to use. Pronouns are she/her.


How old were you when you learned you were autistic?

So, this year I will be 50 y/o. I suspected for a while, but it never really hit me until last year, when I was 49 y/o.


How did you learn you are autistic?

I suspected for a few years. I'm a psychologist, not practising, but during my studies I've written so much about autism amongst other things. I just never really applied it to myself because although I've had great access to all scientific journals and publications, and I'm extremely skilled at research, evaluation of research and writing scientific pieces, the articles mostly center on male autism, white background being predominant, with the typical stereotypes being prominent.


I was talking to my friend last year, and she asked me to evaluate her list of symptoms/issues that she always had, and to check if I could add/change anything, as she was thinking of approaching her GP for Autism assessment referral. I looked and thought, "Wow, it's like the list was describing myself, with some more bits to add." So, I helped her with few pointers and decided to conduct more thorough research of female autistic presentations.


A collage of our fur babies, our kitty family: from the top left (main pic) Maiden, a young, black long fur female (mummy's girl), top right Luna, short-haired tabby mix, daughter of Asha and sister of Orion, next down right, Neo, big black Maine Coon cross, brother to Kasper, next down right, Kasper, big black Maine Coon cross, middle bottom is Orion, beautiful long haired tabby, Bengal and Maine Coon cross, Luna's brother and Asha's son, bottom left is Asha, gorgeous Bengal tabby cross, Queenie of the house.

How did you decide whether to self-identify or diagnose?

I approached my GP last Summer, and got referred for an autism assessment and ADHD assessment. I've applied for both and believe I have both, amongst other things. I have just very recently started to self-identify as autistic and ADHD person, and learning more about myself. I live in the UK, and here the diagnosis is important in terms of getting any kind of help, as you need to prove that you have certain issues or conditions in order just to ask for help or accommodations and have any possible chance of getting the help. And I do need that, I've been misdiagnosed my whole life with other conditions.


How did you feel when you learned you were autistic?

I had very mixed emotions, mostly relief that I wasn't just imagining things or being difficult, or had behavioural issues, or psychopathology. I've felt anger that this has been missed, ridiculed, and not accepted in the past without a 'proof.' I've felt angry that so many opportunities passed me. My life might have been different had I known this sooner, not necessarily have I been diagnosed sooner, as this would have been even more hell for me that my childhood already was. I'm still working through the kinks, the grief at lost opportunities, and missed chances. I'm working out what to do with the rest of my life.


I also feel a deep and profound understanding of why my brain is the way that it is, and how being autistic affects my everyday life. I'm trying to work out how to be 'me' without masking, what does this mean for me, and how best I can use this to my advantage in life.


How do any of your identities (ex. gender, race, religion, sexuality, etc.) impact your late identification as autistic?

I'm not religious, although was brought up Catholic. I asked too many questions as a child. I'm a scientist and they just couldn't compete with that. I come from white background, but am not from UK originally, though I've never identified at all with my 'home' country.


Gender has definitely had an impact, as it's still fairly recent that females are getting autism diagnoses due to the bias and stigma in our society, lack of scientific research on the subject, etc. I'm heterosexual, however, still not entirely sure about how my sexuality is expressed or where it fits.


How did your friends and family respond when you told them you are autistic?

I don't have any family, they may or may not all be dead, I wouldn't really know. I've left my original home 30 years ago, and that was the last time we ever had any contact. It was just not worth it, we hated each other, and my family was horrible and abusive, good riddance! I really only have one friend now, never had many anyway, usually just one best friend who always got 'stollen' by another 'friend'. My good friend is very supportive, we always understood each other well, and now we discuss things and make accommodations for each other even with more ease, as we both understand where we are coming from. She's also autistic, with other neurodivergent traits.


My husband still struggles with this. He knows me very well. We've been together for over 11 years, and married last year, and he's usually very supportive of me, kind, helpful, loving and understanding. But because I struggle with expressing my needs, sometimes I have no clue what I want or need. He gets frustrated with me, as things are not the same as they were before I've realized I'm autistic. So, it's a learning curve for both of us.


Did you seek out therapy, coaching, or other forms of structured support for autism?

I've had lots of different forms of therapy in the past - most were pretty useless. It was always me who got myself out of a dark hole. I am very interested though now to seek either coaching or therapy, but it will have to be with someone who knows and specialises in autistic females. However, I'm awaiting my assessments which should happen within the next few months, which would allow me to apply for funding, as I can't afford these things privately.


How has learning you are autistic impacted your life?

At the moment it's still early days, it still feels weird/unfamiliar to me at times. However, I'm already happier and a lot more confident in myself and my abilities. I'm kinder to myself as I was always my worst critic. I allow myself space, time and forgiveness. I'm less pushy and negative of myself. I give myself grace more often. I'm learning more about myself and how things in my life impact me. I feel like I care about myself more, and I'm learning to express my needs and wishes. At the moment I'm still quite angry a lot of the time, and like I'm less tolerant, but that's because I'm learning to unmask and to live as me, which hasn't really happened before.


Your Current Life


How have you modified or adapted your life since learning you’re autistic?

At the moment it's definitely a lot more of no longer putting up with crap and bs! I ask for accommodations when needed, challenge discrimination and bias, and stand up more for myself and others. I'm trying to work with my brain and body as opposed to always fighting myself, and pushing myself to burnout. I'm letting go more, giving myself the time and space to process things. I'm feeling my emotions as opposed to always trying to burry them. I'm looking at ways to use my neurodivergent traits to my advantage to have a better, more fulfilled life.


A picture of our fur baby, now quite large, Ragdoll cross, ginger marbled tabby, Anubis Morpheus the First, who is the funniest of them all, enjoying sunshine on his widow shelf.

In what ways does being autistic enhance your life?

I love my special interests, and how I have the passion to learn everything there is to learn, and be able to explain it to others. I love how caring and passionate I am, and how honest I can be. I like how I know what I like and dislike, how I see and hear things that others don't. I like how I think logically, and how things make sense to me.


What are some of the challenges you face in being autistic?

I can't change how my brain operates. Things that work for neurotypical people, don't work for me. I may need more support than others, but I'm not always able to recognise that myself. Autism affects my being, my health, both physical and mental, as well as the stigma attached to being Autistic. Always having to prove myself, fight discrimination and ridicule, and having to prove that my needs are valid is difficult.


In what ways have you noticed you’re different from neurotypical people (behavior, preferences, communication styles, etc.)?

In many ways! Whilst I can do many things, and on the outside it may appear like I'm doing great, with no issues, most of my issues are ongoing internally, even I am not always aware of the internal processes going on. As I learned to mask and imitate the behaviours of others, and studying psychology and human behaviour in depth throughout my life, academically and otherwise, my behaviours usually appear similar to neurotypical people. You couldn't tell I'm autistic by just looking at me or observing me. I know what I like and don't like, and also can be very astute, social etc. I'm extremely good at observing and analysing people, and can often accurately predict what happens next, though this ability was far more pronounced in my early teens, than it is now.


Do you experience any other mental or physical differences (including disabilities, other neurodiversities, etc.) that impact you? How have these influenced your autistic journey?

Yes, I'm both autistic and ADHD. I also have dyslexia, dyspraxia (DCD), and was diagnosed with Bipolar II disorder 13 years ago, though I now do believe that the last one is misdiagnosis. I am looking at the possibility of overturning my diagnosis in due course. I also suffer with physical disabilities, chronic pain, chronic migraines, and few other issues affecting mobility. All these impact my daily life, but I'm still not certain of the ways they have influenced my autistic journey.


If you work, what do you do for work? How does your autistic identity impact your work?

I no longer work, my last job ended 4 years ago, and I haven't been able to work since due to numerous issues. I would like to start my own business, but it's just too much at the moment. I've had over 100 different jobs in my life, and they all ended the same.


Is there anyone else in your family who is neurodiverse, autistic, or otherwise?

I have no idea. My father could have been possibly autistic. My mother was diagnosed with bipolar, otherwise I have no clue, as we as family didn't get on, and I haven't kept in touch for the past 30 years, and won't be, so no idea if they're still alive or dead.


What helps you prevent or cope with moments of overwhelm?

It's early days still in my realisation that I'm autistic and ADHD, and I'm not sure I can prevent moments of overwhelm. For coping, often I need to remove myself from the situation. It doesn't necessarily prevent those, but it helps with reducing severity and length of the episode. Usually being well prepared in advance helps, having thought of all possible outcomes, and scenarios, but it's exhausting in itself.


What skills or strategies have helped you to work with your autistic mind?

Being kinder to myself, being honest with myself with regards to how I'm feeling, what my limits are, not just in general, but on the day, what are my non-negotiables, feeling better about not being perfect, asking for things that I need or want.


What accessibility/support have you sought since learning you’re autistic? What support do you wish was easier to access?

Not so much yet. However, I requested special assistance at the airport, as we are going away first time in 7 years, beginning of May this year. The holiday company were extremely helpful, so this will be my first time ever asking for something like this. If I'll manage to go to a concert again one day, I will ask for special assistance then as well. I wish we had more affordable/NHS funded support in terms of ND therapists/coaches as I would find that very useful.


How have you self-advocated for your needs?

At the moment I just tend to ask for things, but feels bit weird, and I'm never sure if they will provide it, argue with me, deny it or else. It can be more tricky with my partner or people who have known me for a while, as it's a surprise for them because I didn't ask for this before, and now I am. So they can be bit taken aback. I find it awkward trying to explain my needs, as I'm not used to asking for my needs to be met. I'm used to just not saying/asking for anything, as I know that I won't get it, well, I didn't in the past.


How does your autistic identity impact your friendships?

I always found it difficult making friends, and certainly couldn't keep any, for a longer term. I have masked well, at the detriment to my health, both physical and mental, and had several friends over the years, but have realised that they were not real friends. I had mainly situational acquaintances/drinking partners, and I've let go of most of them now. I have one friend now really, not best friend, but very good friend, we've known each other for over 20 years, she's also neurodivergent, awaiting her autism assessment. But we are not the closest, and we live far away, so we don't see each other often. I struggle to maintain contact if they are not in my life, and just forget to keep in touch.


How does your autistic identity impact your romantic relationships?

It's been very difficult for all my life. I now have a husband, got married last year, been together for over 11 years. It's challenging, as he struggles to understand my needs. I'm still the same person, but different somehow as I know advocate and speak up for myself more often. This is my most successful relationship to date, in the past I've had multiple partners, haven't really lived with anyone longer than few months and never really got on. They were all short lived.


What is your experience with medical systems? Are there ways you feel they can be improved for autistic individuals?

My experience with medical system full stop is mixed one. I wanted to be a surgeon pretty much all my life. I'm not going to do that now. I've worked in healthcare for many years, have extensive knowledge and experience in several fields, and my knowledge is sometimes superior to that of others on specific subjects. However, our NHS system is completely broken, and if I lived elsewhere, say Australia, New Zeland etc, I would by now be a surgeon. Things are just wrong, and not just in UK, starting with research or the lack of, especially with female population, stigmas surrounding autism, discrimination, misunderstandings, misdiagnoses, lack of support, guidance, access to affordable assessments in timely manner and so on.


Your Past


How did being an undiagnosed autistic child impact your childhood?

I was bullied, abused by my mother, abused and sexually assaulted by others, discriminated and picked on because of my differences. However, I'm glad that I wasn't diagnosed as a child, because it would have been even worse. I wish I knew then what I know now, and I wish I had a responsible adult I could confide in.


What ways did you camouflage or mask?

From very early age, around 3 y/o I noticed myself that I was different from others, both kids and adults, and that people didn't understand me. I started studying human behaviour, psychology, and medicine early on. My first year in primary school, when all my friends would check out children's books from the library, I would check out adult texts, psychology, medicine, human biology etc. If I couldn't check the book out, I'd sit in the library for hours, pouring over it. I learned from others about what acceptable behaviours look like, and began masking and imitating others as a child, whilst trying to learn all I can about humans. I'd change and adjust my tone of voice and volume, learn specific ways to speak, eat, walk, react to news, emotional reactions, manners etc.


How has your identification as autistic changed how you view your childhood or earlier periods of adulthood?

I hated my childhood and early adulthood years. I didn't like children then and I don't like them now. Now, I'm being kinder to myself, and I'm working still on forgiving myself as a young person. I'm working on being more understanding with people, though this doesn't always work. I still haven't forgiven my mother for the hell that she's put me through, regardless of knowing that she had her own struggles. I wish that things were different, that I was bought up in different, more understanding and loving family, that I didn't experience all that trauma and abuse, and that I was given more tools to learn life as a neurodivergent and autistic person, and having more opportunities. But, that's not going to change anything now. However, when I look back and remember myself as that little girl, I now feel compassion for her, and just want to hug her.


Talking to Others About Autism


How do you describe autism to people who are not familiar with it?

I haven't really had to do that much, as my contact with people is limited. I explain some to my husband, but haven't really discussed it with anyone else, apart from my friend and online. I just explain is as a difference in how my brain works, and may give examples to illustrate, like how given stimuli may present to neurotypical brain vs neurodivergent brain, and how it differs specifically for autistic brain, then again how it may be different still for me. I try to explain how it affects the autistic brain, and then try to relate it to a neurotypical brain, so that the neurotypical personal may understand it. I try not to get too technical, unless talking to a medical professional who may be able to understand the terminology that I'm using. I tend to ask first, what the person thinks autism is, and how it presents, then I take it from there.


What do you wish others knew about autism?

That it's not a disease, you can't catch it, you can't cure it, you don't get it through vaccines, or eating too many artificially enhanced sweets. It's nothing to be scared of. Ask the person first about how does it feel for them, and if they need any support. Don't just assume. Appreciate the differences, don't try to force autistic people to behave like neurotypical people.


What is your advice for someone who thinks they might be autistic?

It's OK, you are not broken, you are unique although you may share some traits with other people. Find out what it means for yourself, how this may impact your life, what support you may need, and find a way of living true to yourself. Your brain will thank you for it. If you think it may be beneficial for you to get diagnosed officially, whether because of support you may need, validation, insurance, disability etc, look into this. Read, research and learn all you can, so that you can make informed decisions about your life, work out your needs, and how you want to live your life in the best possible way.


Are there any resources (books, articles, videos, etc.) you would recommend for people who just learned they’re autistic?

I find many resources on Twitter and LinkedIn, and I follow quite a number of people there, who are either autistic, ADHD, or AuDHD. The book I have just started reading is: Unmasking Autism: The Power of Embracing Our Hidden Neurodiversity, by Dr Devon Price, love it so far.


I also just started reading: Different, Not Less: A neurodivergent's guide to embracing your true self and finding your happily ever after, by Chloé Hayden. I love this one, and I adore her, especially after watching her in the new series: Highbreak High on Netflix.


Are there any resources (books, articles, videos, etc.) you would recommend for people who are exploring if they might be autistic?

The first book mentioned above is good for this too. Also: Through Autistic Eyes by Nicky Collins, I follow Nicky on Twitter and LinkedIn, she's late diagnosed autistic, and her book is fantastic.

Are there any autistic characters in books, tv, or movies that accurately reflect autism? Which ones?

Yes, Quinni in Highbreak High 2022 series, love her and the series! Also loved the autistic character Stevie in Netflix movie: I Used to Be Famous. One of the best movies I ever watched! I do enjoy watching Young Sheldon and The Big Bang Theory, as they're both fun, and I can relate a lot to the autistic character Sheldon Cooper.


Are there any fictional autitistic characters that miss the mark on depicting autism? Can you give one example and explain why?

Not sure, I remember seeing Rain Man, with the autistic character Raymond, and I though it was quite extreme, and not necessarily how autistic people present.


Connecting with You


If someone would like to connect with you, how can they reach you?

Twitter would be best so far, as I use it the most for my AuDHD stuff. Find me under: @lana_dtx


I've also just opened an account on Instagram dedicated specifically to Autism/ADHD and being neurodivergent, find me under: the_ausomed_kitty


 

Post-Interview Note: Druxilla received an official diagnosis of autism a month after this interview. While she still sees self-diagnosis as valid, she will now be able to access relevant support and accommodations when needed.

 

Thank you for reading. I’m looking for more late identified autistics to complete interviews just like this one. I’ll send you the questions and you can complete them on your own time. Please email me at jackieschuldart@gmail.com if you are interested.

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