Welcome to my new series Autism Profiles, where a few Neurodivergent adults share some information about what it’s really like to be an Autistic/ND person. I sent them a range of personal questions and have compiled the answers below. I know that most people would assume all Autistic people are the same, and that misguided thinking is what has inspired me to start this series. As you will see in my previous blog, the basic criteria are what ties us together in that we are on the Autism Spectrum, but the ways in which these things are expressed can vary a lot!
Hi Everyone. My name is Steph, and I am a 26 year old female living in the outer suburbs of Sydney, Australia.I find it really difficult to talk about myself, because I don’t know what people want to hear, so I shall do my best (also, I love talking about myself… sorry!).
Throughout my life, I have always felt different, and as though I didn’t completely understand people, yet I love the idea of learning, and I have a “need” to fit in with people, so of course… I did psychology. I completed my Master of Applied Psychology in 2018, and started working in 2019. My work consists of working with families, children, and adults, predominately on the Autism Spectrum, as well as other neurodevelopmental disorders (e.g., ADHD, Down Syndrome, Intellectual Disability). I love what I do, being able to spread awareness and knowledge to people. Being on the spectrum myself, also helps me work with my clients, being able to relate.
My line of work actually led me to my own diagnosis, because there are only so many times you can say “oh, that’s not a problem, I do/did that”. I would be explaining this to my boss (who had children on the spectrum herself, and was obviously working directly with me) and she would just laugh. Looking back now, I think she knew… why not say? However, the laughing and self-awareness that was slowly developing led me to research, and research… and research some more, until the point where I was absolutely sure of myself. I had received some classic “no, you don’t seem autistic” or “maybe you are just anxious”, as well as (from a professional) a “well you have to be a bit crazy to be a psychologist” – was this meant to be helpful? Hint: it wasn’t. These comments were received with great levels of self-doubt, limited confidence, high anxiety, fear, and shame for even comparing myself to people on the spectrum… now, what I know to be Imposter Syndrome.
However, I continued to explore, continued to work through my own difficulties (anxiety, depression, and burnout), and started to talk to people who matter (my family). I explained myself, over and over again (#RepetitiveBehaviour) and was fixated on getting information, and understanding what was going on (#SpecialInterest). Finally, I had the courage to ask my mum to take me to get a diagnosis and at 25 years of age, I was diagnosed. I was officially AUTISTIC! After feelings of being so different (too “intelligent”, “naïve”, “innocent”, “awkward”, “shy”) I was seen and understood. I wasn’t overly happy with the diagnostic approach, being a psychologist myself, but at least I was heard enough.
I have many ways of identifying myself. I know there is a lot of debate, especially with “experts” and “professionals” between the use of person first language, and disorder first language. I have my own opinions on this, however, my main one is: go with what that particular person prefers. I was diagnosed after 2012 (when the DSMV started) and therefore, my diagnosis is officially Autism Spectrum Disorder – Level 1, however, previous to the new criteria, I would have been diagnosed with Asperger’s Syndrome (as I have no intellectual disability). Therefore, I will use the two interchangeably. I enjoy being called an “Aspie”, however, that’s because I like the sound of the word (Aspie, Aspie, Aspie – she repeats in her head). I also enjoy being “Autistic”. I believe this diagnosis is part of me, and I can't remove it from myself. It is not “curable”, it is not “removable” and therefore I am not “with it” because I can't be “without it”. I am it! Therefore, I mainly refer to myself as an autistic person, an Aspie, or that I am Autistic. I will take any of these, however, I will NOT accept “high functioning autism”, for many reasons, the main one being: I seem high functioning to you, but compared to where I am meant to be (compared to others my age), I am very much “not functioning”. To those who see the “high functioning”, you don’t see the days or moments of “no functioning”, so how can we judge.
I have always struggled to identify my “special interests” because I saw these as obsessive, in-your-face activities that you just couldn’t stop talking about. However, I have now realised that whilst growing up, and now, there are topics that I wish I could be doing and talking about for the rest of my life. As a child, I loved learning, doing academic books consistently, as well as puzzles. I would be considered a visual spatial/puzzle savant and therefore it was definitely an interest. As I grew up, I realised that people didn’t like you “showing off” and therefore having skills and passions were seen as “nerdy” (which I now love to identify as), or annoying. Throughout school, my special interests were subtle, mainly being around sport (softball) which I would be at all the time. It was subtle because my family were also involved, however, what people didn’t see was the constant thinking about it, planning for games, training at home, talking after training, and re-living my competitions word for word in my sleep. I have gone through phases with interests, with them often being extreme and then nothing (autism – a disorder of extremes). For example, I read Stephen Hawking’s books for an entire month (I hate reading so this was big), as well as watched constant videos about science, physics, and space, however, other than loving The Big Bang Theory, that hasn’t continued. Currently, I have listened to the Dear Evan Hansen (Broadway Musical) soundtrack on repeat for over 6 months, as well as watched videos of the cast, and read the book. Whilst my interests do change, some have remained highly stable: puzzles, softball, Harry Potter (I'm a Ravenclaw), learning, and more recently added, Autism.
My favourite way to spend a day changes constantly, however, having a lot of people around throughout the entire day is not ideal. I will burn out and get overloaded very quickly with people and crowds, and therefore an ideal day may only incorporate a small amount of this. If I was feeling good, I believe an ideal day might be waking up and having some “safe food” (e.g., McDonalds) for breakfast, taking my medication (as no one wants to be highly depressed on a great day), and then having some time to watch YouTube. If people would be here, it would either be my mum, or my boyfriend (but we wouldn’t be talking). After down time, maybe going to hang out with some friends would be nice. I would go and have lunch, chat (no small talk please), play some board games, or with their kids), and then come home to a quiet dinner and TV (Harry Potter, The Big Bang Theory, anything Disney/Marvel, Criminal Minds, or Gilmore Girls would likely be on). I would likely go to bed relatively early (10pm), and hopefully fall asleep quickly, whilst having the TV, and my stars turned on, as well as be wrapped nicely under my weighted blanket. Don’t get me wrong, I also love doing loud and exciting things like concerts, going to the movies, going out to eat, however, these things often become too much quickly at times.
Being autistic can be hard at times, especially because people cannot see the autism and therefore expect of you what they expect of everyone else. This causes high anxiety, stress, perfectionism, burnout, meltdowns, and expectations that cannot be met. Therefore, the hardest part about being autistic is having to manage everyone else’s way of seeing you and the anxiety that that causes. I love being autistic, it has made me who I am, however, I do not enjoy being expected to just be like everyone else, because, no one should have to be like everyone else. We are all different, and it should be like that. Now if I could just tell my anxiety that!
Oh senses, apparently no one gave them the message about how they are “meant” to work, and the way people expect. I find my senses to be a bit of a mixed bag of information. Whilst many people are often sensory seekers, or sensory avoiders, I am a wonderful mix of both. I asked my friend who is an OT to do a sensory profile, and even she was like “what the hell”. I seem to do that though… I am often a “medical mystery”. I have many things that are avoidant. These include: bright lights, loud noises, sudden noises, soft touch (e.g., rubbing my hand or arm), affectionate touch (e.g., hugs and kisses – not with partner), tight clothing, textures of food, colours of food (I am a very picky eater), shoes (especially as a child – now I buy shoes half a size too big), and smells. In terms of seeking, I love touching soft fabric, squeezing toys, getting tights hugs, weighted blanket, touching different textures (e.g., run hand along bricks), watching light patterns (e.g., fairy lights), and chewing on crunchy foods. I have my senses will change often, however, these seem to be ones that remain constant. I would say the worst things for me are definitely bright lights and loud noises, with sunglasses being a permanent attachment and headphones being around when needed.
Other sensory difficulties I have refer to interoception and proprioception. These include knowing what our body needs, and where our body is in space respectively. For example, I never know when I need to go to the toilet, until I REALLY need to go. I also always feel hungry and therefore have to watch my food intake. My muscles have problems telling me where my arm is, and likes to run into walls, but also made it difficult to learn movements in sport when younger. My coach would often say “can you feel that?” and I would be like “what are you talking about?” because I had no idea that people could feel where their muscles are.
I have really been trying to focus on what I do to stim because a lot of these seem to be more subtle because I don’t want people to think I am crazy or weird (thanks anxiety). I will find myself rocking from leg to leg when standing, walking on my toes, flicking my fingers, flapping my hands (normally for a short period of time, just to the side of my legs), sitting in a “w” sit, and hugging my plushies/blankets. I have a lot of sensory toys, however, I don’t seem to utilise these as often.
I truthfully believe that Autism has given me the personality traits that I am most proud of. These include:
· Intellectual Ability – My inner Ravenclaw (sorry for those who do not like or know Harry Potter) is always on show and ready to go.
· Attention to detail – there have been multiple times where I will notice something that other have overlooked.
· Ability to Hyper focus - I will often be seen just deep into thought or whatever task I am doing at that time, to the point where I will not notice things happening around me.
· Empathetic – Many people see those with Autism to not experience empathy, however, for me, I experience it too much, so much that it is often overwhelming.
· Determination – This word encompasses a wide range of contextual areas in my life, however, overall, my determination to fit in, my determination to not give up, my determination to learn skills, and my determination to be the best person I can be.
· Reliability and Commitment – I struggle with not being on time, and not following through with what has been said.
· Accepting - Maybe this is just me again, however, there is evidence to suggest that many people with autism present less judgementally than neurotypicals.
· Ability to teach others – this may sound like a strange concept for someone who is not a teacher, however, through being accepting and having an open-mind comes the ability to learn in multiple ways.
· Memory – My memory is a strange place to be. I have thoughts, images, and movies going, and I can swap between them. The thoughts seem to be basic memories, or even academic information, however, the images and films appear to be more important events that occurred. Now the odd nature – the movies are in colour, and depending on the memory can react just like a film – play, pause, rewind.
The thing with autism, is it doesn’t normally present by itself, with people having co-morbidities that are either physical or mental in nature. For me, it is a mixture of both. I have multiple other mental health diagnoses (including: OCD, Generalised Anxiety, Social Anxiety, Depression, and possible ADHD). In a physical sense, I am currently being tested for Ehlers Danlos Syndrome, which would explain many physical ailments such as gastrointestinal concerns, allergies, and hypermobility.
I have found myself to relate to many of the stereotypical “female” autism traits, although I do not overtly meet the stereotypical “male” traits. Whilst I do have an official diagnosis, it took many years and research to gain, even though it could have been provided when I was in preschool. I found many of my traits to be so obvious when I was younger, although overlooked and explained away (e.g., she is just shy and intelligent). In terms of the stereotyped traits (based on a predominantly male known criteria), I would say I do not meet the “non-empathetic”, “non-communicative”, “awkward” and “ritualistic” expectations of autism.
Whilst there are traits or criteria that I would say I cannot relate to, there are also the stereotypes that are definitely me. I am routine based, I like to do things the same way over and over, I am highly emotional (but not aggressive – do not confuse those), I don’t like to make eye contact, and I love correcting people (yes, I know they don’t like it). I now see why I was seen as the “brat”, “smarty” or “goody two-shoes” as a child, because I like being right, and I will do anything to prove my point. It may be cute when you are under 10 and correcting adults (yes, they were wrong), but not so much as you get older. My peers definitely didn’t like it, and in the age of social media, it made it even easier to correct everyone. Am I perfect, no (much to my dismay), although, neither is anyone else, and therefore they needed help. I would want people to tell me if I understood something that was wrong, or if I could improve. Would I cry when they told me, probably, but I would then process it, and attempt to implement it (unless they were just being mean, which happened a lot).
I want people to know that Autism is not something to be scared of, to look down on, and we are not stupid! I have many skills in life, and I have been blessed with an IQ above 140 (Genius level), however, this does not always seem evident. I often struggle to get my point across, and communicate my needs effectively. Just because I can't communicate something, does not mean I do not understand, and it definitely doesn’t mean that you can put me down and belittle me. The world needs different, and it needs people to be friendly. After all, I was always taught “if you don’t have anything nice to say, then don’t say anything at all”. The only problem, I don’t always know when what I say wasn’t nice, but believe I am so apologetic and distressed when I find it out.
If I say something that has upset you, please don’t get angry, explain why you are upset, and allow me to explain what I meant, because I never mean it to be rude. Allow me to communicate to you effectively, so we can be on the same page. This might mean, allowing me to explain. It might mean, giving me some time to regulate myself. Or, it might mean using a different form of communication. After all, communication is how we learn about each other, and even though I like to be by myself (yet hate feeling alone), I need people, and people need autistics!
More information: Autism. What's that? Why everything you know about Autism is wrong (Ted Talk)
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