Autism Interview #191: Lucy McCombe on Self Diagnosis and Navigating Multiple Diagnoses

Lucy McCombe is an advocate from Australia with experience navigating multiple diagnoses as she searches for something that feels right. McCombe blogs at A Mythical Creature on a variety of topics related to autism advocacy and autism acceptance. This week she shared her experience pursuing an autism diagnosis, autistic burnout, and self-advocacy.

How did you become aware of your Autistic identity?

I can’t actually remember the moment that was the turning point–if it was my mum showing me something or I was watching a documentary with her, but I remember years ago when I was in my mid-to-late 20s watching something about females with autism and these girls and women of different ages talking about things that no one else had talked about, and it just unlocked something inside my mind! Even things I was sure were normal human behaviours or things that they were struggling with or even just feeling exhausted or stressed when talking to people. From there it was looking up autistic people’s symptoms and stories, then looking at not only traits that are common, but also these lesser-known symptoms and traits, and it felt like you found the answers to the universe.

The funny thing is I’m constantly finding similarities between other autistic people – especially around my age – so it’s a continual journey of discovery.

Your blog mentions that you have been diagnosed with “everything under the sun” except the one you need. Can you explain? What has it been like seeking a diagnosis?

Trying to get a diagnosis has been the most frustrating part because I’m not what they expect autism to be; I’m not a young boy flapping my hands and lining objects up in my preferential order. The most painful moment was after I had seen a psychiatrist and psychologist with my mum, and the former said to me “you could have autism, but I can’t diagnose you, I can’t do anything.” And I just quietly cried as I tried to rationalise in my head that he just wasn’t qualified, but he didn’t point me in the right direction either. It was like talking to the wall. Then looking over at my mum who was just devastated for me. I was tired at that point, and she knew it. She kept telling me I don’t need one; I knew I was autistic and so did she, and she’d always be there for me. So I stopped actively looking for an official diagnosis and went on.

I had been diagnosed with Generalised Anxiety Disorder and Major Depressive Disorder before I was 20 with a possible diagnosis of OCD thrown in too. The thing about getting older is you start to think about if these are causes or symptoms of something much bigger, and that has been part of the overall frustration of getting a diagnosis; general practitioners, psychiatrists and psychologists go straight for the depression and anxiety, but stop at that, in my experience. I’ve gone back to wanting a diagnosis in the last couple of years purely for my own vindication and the possible help you get from an official diagnosis. I’d be lying if I didn’t say it’s to shove in deniers’ faces! The typical person lumps autistic self-diagnosis in with other self-diagnosers, not realising that an adult with possible autism has done masters degree-like research into the subject.

You’ve written about autistic burnout. What can you or others around you do to prevent burnout and recognize your early signs/triggers?

Leave me alone! Leave me alone for as long as I need and don’t ask me for answers to decisions, because even asking what I want to eat and if I want to go somewhere is not an easy thing to answer! I’m still trying to find what my signs and triggers are, especially because I’m still in the middle of a burnout, but I know when I can’t concentrate on anything or I’m too exhausted to do something simple, I can’t answer simple questions or even reply in more than a sound or even forget to reply to someone because I did it in my head instead of my mouth, I know I’m at the crest of a burnout period.

In what ways have you had to self advocate in school or the workplace?

I’m actually possibly going back to study soon in a field I really like, so my interests will be aligned with other people, but I’ve always been pretty honest when it comes to my health, even when I was a teenager and finding out about autism traits in girls. I thought being honest was the best policy.

I had a drama teacher/faculty head all through high school who knew about my mental illness, so when I was in a period of depression, she identified it and was so understanding and compassionate. She kind of reinforced to me that if you give people a ‘heads up,’ it can help you when you need it most. The hardest place has been in the workplace, especially because it’s a social and fast-paced environment, filled with lights and sounds, and if you’re in hospitality and retail, you find out very fast it’s you vs. workplace. I’ve been in mostly retail environments to the detriment of myself. Autistic people and retail is oil and water!

Since identifying my autism though, I haven’t had a job, but I know looking back at my work history, retail is not for me; it’s not an atmosphere that helped me, so I know I can’t go back.

Experience has told me to play to your strengths, be honest with yourself, and genuinely work hard–that’s all you can do–and then when you hit your personal limit, you must stop. Don’t fall for the “put 110% in;” it’s stupid, it’ll ruin you. Put in the 100%, then put your foot down. Be your own cheerleader and your own bouncer.

What advice do you have for others navigating complex medical conditions, multiple diagnoses who are trying to advocate for their social, emotional, physical health?

Reflect on yourself, or if you love a good mystery, be your own investigator; gather evidence, look at research, find other people’s stories online. Tumblr and Twitter have been fantastic for me to see other people’s point-of-view. Explore your potential, your limits, your strengths. While other people’s lives journey down a road, you might be on a hike, and the hike is going up hills and going in circles, with dead-ends. It could be long, and it could take you down a completely different path. You’re going to wonder why you’re still going when you could easily jump off the side. Keep going, keep going out of sheer stubbornness, sheer spite. Give yourself those moments to cry, to get angry and rant, but when it’s out, remember to get back to it. You deserve answers, it’s your time, it’s your money, you’re the one hiking up and down, you’re the one fighting. If you’ve lost years or whole decades to illness or conditions, you’re allowed to mourn, you’re allowed to feel like you missed out, but no matter what, just be stubborn. Keep going.

What do people misunderstand about you?

Where do I begin! I think the biggest misunderstanding is that I can appear ‘normal’ or ‘typical’ then recess or have small things trip me up. I can plan a budget for myself, but still don’t understand how to pay rent or utilities. I can talk to someone about a certain movie I liked, then need to go and recharge for the rest of the day. I have quick reflexes, but I can’t drive a car. I can chill out at the beach, then suddenly need to be home for my two-hour video game playing ritual.

What do you find easier as an adult (or post autism self-diagnosis) than as a child or teenager?

I think almost everything is easier, but comprehending subjects or imagining things are the biggest. I can understand why others might see a flow from one idea to another, or reading a book – something I never did outside the classroom as a kid – I can visualise things a bit easier.

I’m also less hard on who I am now that I’ve journeyed down the autism rabbit hole. I would constantly belittle why I would do or think the way I did, and now that I know, I’m a lot more forgiving of how my brain works, and that bleeds out how I relate to others.

Is there anything else you’d like to talk about that I didn’t ask?

I think what a lot of people might not realise is that autistic people are very good at observing and perceiving things. It is very common to hear mostly females talk about assimilating by observing and then mimicking. A lot of people -especially parents- might not realise, or even think their kids can’t comprehend what others are saying or perceive body language. When focused on something or in a loud area, sure, but autistic kids can still be highly attuned to you talking about them and how you’re talking about them. The same is true when it comes to observation; if you have a good mimicker, they can master yours and other people’s body language quite well, even if they can’t fully explain it.

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