Everything Changed For Me This Year (Autism Awareness Day)

Autism Awareness Day always has a theme. Officially, the UN sets the theme but different organisations also choose their own themes; for example, I know that autistica has chosen the theme of anxiety. The official theme (the one set by the UN) is ‘Inclusion in the Workplace: Challenges and Opportunities in a Post-Pandemic World.’ I don’t feel that there’s really anything useful I can add to that conversation, given that I’ve never been well enough to have what society would consider a proper job and that the career path I’m following doesn’t really involve traditional workplaces. So, instead, I thought I’d write about something different, something that has been a really big deal for me this year.

For so long, I just felt like I was broken. And I felt like I was broken in so many places. I couldn’t understand it. Getting the Autism Spectrum Disorder diagnosis helped but there were still all these cracks, all of these problems that no one could make sense of. I had mental health problems, I had chronic fatigue, I had chronic pain, and so on. Nobody could figure out the whole picture and at worst, I was just abandoned by medical professionals, told that my case was just too complicated. That was the most painful part, I think; these people, many of whom it was their job to help with situations like this, were willing to let me continue to struggle rather than put in the effort and help me. It made me feel like I wasn’t worth helping, the toxic best friend of feeling like I was broken.

But in the last few months, with the help of several new medical professionals and some more diagnostic work, the pieces have all slotted into place and, I think, we might finally have the whole picture. So this is the timeline, beginning in 2016 (I might add dates later but I don’t have them all to hand right now).

(I’ve covered some of this before but I think it’s necessary if we’re talking about said whole picture.)

  • I was diagnosed with Depression and Anxiety by one psychiatrist.
  • I was diagnosed with Depression, Anxiety, Social Anxiety, Obsessive Compulsive Disorder (OCD), and Borderline Personality Disorder (BPD) by my long term psychiatrist.
  • I was diagnosed with Autism Spectrum Disorder and had the BPD diagnosis confirmed at the local Neurobehavioral Unit.
  • My therapist explained that my mental health issues, particularly my BPD, may have stemmed from the continued invalidation of my ASD.
  • A few years passed.
  • After a discussion with my psychiatrist, my mental health related diagnoses were updated, changing to Treatment Resistant Depression (TRD), Generalised Anxiety Disorder (GAD), and BPD.
  • I was (re-)diagnosed with OCD after further sessions with my psychiatrist.
  • My GP diagnosed me with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) when we could find no obvious cause for Chronic Fatigue I’ve been dealing with since I was twelve.
  • A couple of years passed.
  • I started to develop Chronic Pain that got dramatically worse over a period of several months.
  • I was referred to a specialist who diagnosed me with Hypermobility (apparently individuals with Hypermobility are seven times more likely to be autistic), which led to a diagnosis of Hypermobile Ehlers Danlos Syndrome (hEDS), explaining my Chronic Fatigue and Chronic Pain as well as a number of other ‘smaller’ symptoms that, due to the bigger problems, had been ignored. This, as far as I can tell, makes the ME/CFS diagnosis void.
  • I was also diagnosed with Attention Deficit Hyperactivity Disorder (ADHD), many of the symptoms overlapping with my ASD, during the same period.

And suddenly all of the pieces started to click together:

THE MENTAL HEALTH ISSUES (TRD, GAD, OCD, AND BPD) AND ADHD ARE, AT LEAST IN PART, CONNECTED TO MY ASD.

MY ASD AND HYPERMOBILITY ARE LINKED.

THE HYPERMOBILITY LED TO A DIAGNOSIS OF hEDS, WHICH EXPLAINS MY CHRONIC FATIGUE, CHRONIC PAIN, AND OTHER PHYSICAL SYMPTOMS.

Discovering that it’s all connected has been a really helpful and comforting revelation. I’m starting to see each condition as a star in one big constellation and that’s a hell of a lot better than feeling inexplicably broken in multiple places. I still have to deal with everything that comes with each of these conditions, of course, but knowing that they’re all part of the same picture does make my health less draining to think about and manage. It all makes more sense. And I am a person that needs things to make sense. So this is all a really big deal.

Quotes That Helped Me (Autism Edition)

Given how much I love quotes, I thought this week would be a good opportunity to share a compilation of quotes specifically about Autism and from autistic individuals…


“If you’ve met one person with autism, you’ve met one person with autism.” – Dr. Stephen Shore

“English is my 2nd language. Autism is my first.” – Dani Bowman

“My autism is the reason I’m in college and successful. It’s the reason I’m good in math and science. It’s the reason I care.” – Jacob Barnett, sixteen-year old math and physics prodigy

“Think of it: a disability is usually defined in terms of what is missing… But autism… is as much about what is abundant as what is missing, an over-expression of the very traits that make our species unique.” – Paul Collins, Not Even Wrong: Adventures in Autism

“I don’t really understand why it’s considered normal to stare at someone’s eyeballs.” – John Elder Robison

“Our experiences are all unique. Regardless, I do believe that it is important to find the beautiful. Recognize that there is bad, there is ugly, there is disrespect, there is ignorance, and there are meltdowns. Those things are inevitable. But there is also good.” – Erin McKinney

“Autism is as much a part of humanity as is the capacity to dream.” – Kathleen Seidel

“By holding the highest vision for your child when they can not see it for themselves, you are lifting them up, elevating them and helping them to soar.” – Megan Koufos

“Autism… offers a chance for us to glimpse an awe-filled vision of the world that might otherwise pass us by.” – Dr. Colin Zimbleman, Ph.D.

“My autism makes things shine. Sometimes I think it is amazing but sometimes it is sad when I want to be the same and talk the same and I fail. Playing the piano makes me very happy. Playing Beethoven is like your feelings – all of them – exploding.” – Mikey Allcock, 16-year-old who was non-verbal until age 10

“Vibrant waves of sequenced patterns emerged in my head whenever I looked at musical notes and scores. Like pieces of a mysterious puzzle solved, it was natural for me to see music and its many facets as pictures in my head. It never occurred to me that others couldn’t see what I saw.” – Dr. Stephen Shore

“We contain the shapes of trees and the movement of rivers and stars within us.” – Patrick Jasper Lee, an autistic synaesthete

“I looked up to the stars and wondered which one I was from.” – James McCue

“I see people with Asperger’s syndrome as a bright thread in the rich tapestry of life.” – Tony Attwood

“My mind doesn’t stop; it spins and shifts in different directions creating webs of patterns, linked by varying hues.” – Michael Bowring

“Stop thinking about normal… You don’t have a big enough imagination for what your child can become.” – Johnny Seitz, autistic performance artist

“Rome was not built on the first day. I need time to build the Eiffel Tower of my life.” – Jeremy Sicile-Kira

“As an autistic, I can readily see environmental phenomena of sun particles interacting with moisture in the air and rising up from the ground. I thought of these things I could see as sun sparkles and world tails.” – Judy Endow, Painted Words: Aspects of Autism Translated

“Low pitched notes really make me feel like love might be truly possible. High pitched notes make me feel like I could go crazy with pain and sadness. Great rhythms can make me feel like life is freedom.” – Jeremy Sicile-Kira

“You are not in the mountains, the mountains are in you.” – John Muir

“Our wounds and hurts and fears are in our eyes. Humans think they build ‘walls’ for internal privacy. They think eye contact is about honesty but they mostly lie because they think they can hide their intent. Eye contact is invasive.” – Carol Ann Edscorn

“My fear is that if I don’t mask, push through and show how capable I am, I won’t be offered opportunities in the future or be valued the same.” – Emily Swiatek

“Autists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It’s that you’re destroying the peg.” – Paul Collins

“As soon as a child is capable of understanding, they will know they are different. Just as a diabetic needs insulin, an autistic child needs accommodations. The label gave me knowledge and self-awareness.” – Steve Andrews

“No, autism is not a ‘gift.’ For most, it is an endless fight against schools, workplaces and bullies. But, under the right circumstances, given the right adjustments, it CAN be a superpower.” – Greta Thunberg

“To measure the success of our societies, we should examine how well those with different abilities, including persons with autism, are integrated as full and valued members.” – Ban Ki-Moon, Former United Nations Secretary-General

“No matter how hard I try to learn from other people or copy what others are doing, I can’t quite get it right. It’s like living in a foreign country and not knowing the language.” – Rosie King

“Routine is a pivotal part of my daily life and any deviation, however slight, can cause great discomfort to me.” – Nathan Cornfield

“Avoiding eye contact is one of the things I find myself automatically doing to minimize the quantity of incoming sensory information.” – Judy Endow

“Autism doesn’t have to define a person. Artists with autism are like anyone else: they define themselves through hard work and individuality.” – Adrienne Bailon

“Autism is like a rainbow. It has a bright side and a darker side. But every shade is important and beautiful.” – Rosie Tennant Doran

“I don’t want my thoughts to die with me, I want to have done something. I’m not interested in power, or piles of money. I want to leave something behind. I want to make a positive contribution – to know that my life has meaning.” – Temple Grandin

“I’ve listened enough. It’s time for me to speak, however it may sound. Through an electronic device, my hands, or my mouth. Now it’s your time to listen. Are you ready?” – Neal Katz, Self-advocate


I really enjoyed putting this post together. Or more accurately, putting this blog post together was a very emotional process, with emotions from both ends of the spectrum (no pun intended). It was really positive and also deeply affecting. Some of these quotes hit so close to home that reading them brought tears to my eyes; some of them resonated with me in a way that was deeply inspiring and comforting. Doing this has actually made me feel less alone and more able to understand and express how I feel, something that I already felt like I was pretty good at. So that wasn’t something I expected.

Whether you were as moved by these quotes as I was or not, I hope you found something in this post that spoke to you, that helped you, or that even just made you feel something. Expressing ourselves can be so difficult; sometimes we need a bit of help and sometimes that help can come in the form of the words of others.