no matter what your beliefs are, I think we all can agree that the world works in miraculous and mysterious ways sometimes. earlier this week, I had the pleasure of connecting with one of the blog’s Twitter followers – @AK Nephtali . realizing that he could provide a different voice for the blog, I knew I needed to allow our readers to hear advice from his perspective. it was hard to decide which topic to touch on first and, I have to admit, I was a bit selfish in choosing self-esteem/self love. my awesome autistic struggles in this area and, in turn, I have struggled to find ways to support him. I want big A to be confident in himself and his diagnosis; that is what today’s post is all about.
over the course of this eight question interview, AK will give us insight and advice that I know will help me navigate, build, and improve my little humans self esteem so that we both feel confident and accepted in ourselves and the world around us.
1. How old were you when you were told/understood your diagnosis and how did it affect you?
Oddly enough, the kids at my school knew I was autistic before a team of professionals did! There was an autistic boy at my school, and I knew that we were similar on a deep, instinctual level. A few kids joked that “you two should be a couple”, and I didn’t understand what they meant until I realised I wasn’t just similar, I was autistic as well.
I was lucky enough to get accomodations without a formal diagnosis, such as extra time and a smaller room for exams, but that was only because of my awesome parents who campaigned on my behalf. I did need more help, especially with organisation and sensory issues, and without a diagnosis no one even knew I needed it. (Including myself.) Having a diagnosis expediates getting accommodations, and gives you access to important resources.
I self-diagnosed myself when I was fourteen, and read voraciously. My parents researched too, but not as much as I did. (Such is the nature of special interests.) I became a human hoover, sucking up every piece of information I could find, and the world finally made sense. I didn’t like eye contact because my amygdala functioned differently and sent signals of distress when I looked someone in the eye too long. I stimmed because my senses were a mixture of hyper and hypo-sensitive.
Organisation was difficult for me because my executive functioning was impaired and it took most of energy to simply regulate my emotions and the chaotic, sensory world around me. I’m hypersensitive to sound, so I bought noise-cancelling headphones and revelled in music. Music is a constant companion in my life. Sometimes it even makes me feel like the protagonist of a movie. I’m hyposensitive to vestibular sensation (vestibular means your sense of balance), so I love to sway and dance because it roots me to my body, stops me from drifting away. I’m a mix of hyper and hypo sensitive to touch, so I wear comfortable clothes and buy pillows with fascinating textures.
Stumbling across the neurodiversity movement and activists such as AutisticCats, Musings of an Aspie, and Olliebean helped me much more than the DSM-5. The DSM-5 focuses on external behaviour, not the reasons motivating it. As I read, I realised I wasn’t alone, I wasn’t weird, there were hundreds of thousands of people like me, and they were living happy lives as themselves, getting PHD’s, making speeches, running websites with thousands of viewers, or just being genuinely happy in a world antithetical to autistic fulfillment and joy.
It felt incredible to finally have the words to describe myself. Autism was a label, but it wasn’t limiting. The label of autistic slowly, inexorably, began to supersede all the other labels I’d been given and had given to myself: weirdo, lazy, unsuccessful, quitter, freak.
One common refrain against telling children they’re autistic is that labels are restricting. It’s definitely not. Firstly, the label of autism is only limiting if you have false ideas about what it means. It doesn’t mean: will never marry, will never have friends, will never get a job, it means having sensory and social issues and restricted interests. Nothing more, nothing less. Not having the words to describe your experiences is alienating and almost Orwellian. Before I had the words to describe myself, I felt like a stranger in my own body and an alien in a human world. Secondly, my autism does define me, and that’s not a bad thing. I am defined by thousands of other things: my love of writing and the colour orange, my music tastes, that I play DnD and read sci-fi and fantasy. I’m a friend to some, a student to others, a child to my parents, and an apparent god to the cats and dogs I pet. My autism defines me, but not all of me.
And, to say my autism doesn’t define me is to hack out part of my heart — it influences all aspects of me, how I move, my interests, my passions, and how I think. I’d be a completely different person if I was neurotypical. Sure, I’d love to have less sensory issues, but I don’t want a ‘cure’. I want the freedom to be myself and do stuff like writing about alien mermaids whilst in a rainbow zebra onesie. (That’s definitely not a sentence you hear every day).
I’m happy as I am, and happy to be autistic.
I was professionally diagnosed at 16 years old, and I’m 17 now. Since my autism has only received the stamp of approval for just a few months, I can’t say much about how it affects me, but it feels great to be official. The best part is that it will help me get disability benefits — with them, I’ll be able to focus on my writing career instead of just trying to stay afloat.
2. Were/Are you reluctant to share your diagnosis? How has that affected your friendships/relationships?
So far, revealing that I am autistic has been nearly universally positive. I’ve discovered quite a few of my autistic friends that way (who were just as nervous as I was to disclose this major part of themselves). If a person reacts with prejudice, and is unwilling to learn or listen, I offer the following adage as advice. Those who mind don’t matter, and those who matter don’t mind.
There have been a few negative incidents. Because I seem ‘high functioning’, people can react with incredulity when I tell them I’m autistic. I’ve heard a lot of: “but you don’t look autistic” and “you’re too smart to be autistic”. While they mean it as a compliment, it’s not, because they view autism and achievement as inherently incompatible, mutually exclusive. And they’re saying that they know better than me, that I couldn’t possibly be autistic because I’m not like Rain Man or Sheldon Cooper or whatever stereotype of autism they have in their heads.
If they are unwilling to learn or listen, I’d recommend not bringing up the topic again. But for people who are ignorant but eager to listen and learn, it can help to have a quick, scripted definition of autism on hand, and a few prepared sentences so you can explain your behavior without feeling stressed. E.G: “I have sound sensitivity, so I wear noise cancelling headphones because it helps me focus and blocks out painful noises.” & “If you see me rock or sway, don’t worry, I’m not stressed. Repetitive movements like that are called stimming, and I stim because I find it calming, just like you might click a pen lid or drum your fingers.”
Disclosing my diagnosis has led to me finding fellow autistic people, feeling more comfortable in my own skin, and getting the accommodations I need from teachers.
3. My son’s stims can be loud and disruptive, especially in social settings, what advice do you have for parents and children in these situations?
In public spaces, I’ve found alternative stims to my typical ones. I’ll do less noticeable stims such as leg bouncing and doodling. However, I do become stressed if I have to keep this up for a while. There are some stims that are disruptive (such as dancing and pacing), and others that aren’t considered socially appropriate but aren’t disruptive (such as swaying or listening to music in lessons). I’ve been letting myself do the non socially appropriate but non-disruptive stims more, and that actually helps me focus in lessons. Otherwise, all my attention goes towards ‘seeming normal’ instead of focusing on what I need to learn.
To children/adults with autism — I’d recommend finding alternative, discreet stims, such as fidget necklaces/jewelry (stimtastic.co offers a wide range of fidget toys), lacing your fingers together, or finger drumming. Remember to unmask after the need to avoid visibly stimming ends. This is incredibly important. Masking for too long means you might become ashamed of their natural movements, and be unable to relax even in private spaces. If you need to make a quick, socially acceptable getaway, saying you need the bathroom is always a winning option. (Just don’t use that too many times in one day or else people will think you have bladder issues.)
To parents, I know it is scary — you don’t want anyone to bully your child for their differences. However, they will not be able to keep up the masquerade without experiencing pain or eventually losing the energy to mask. Plus, if they’re focusing on not stimming, their wellbeing and academic performance might suffer as they channel their energy into seeming normal instead of learning. And their true friends will accept them as they are, stims and all.
The aim is to make sure the autistic person is as comfortable as possible in social situations and public areas. So long as their behaviour isn’t harmful to those around them, it’s not worth repressing. While behaviours such as repeating words and humming might cause neurotypical people slight discomfort, it’s technically no different than talking on a phone in a public space. I do avoid my more noticeable stims out of respect for others (dancing/singing songs in the middle of lessons is not a good idea), but I keep the ones it takes a ton of effort to hide/or are painful to repress. So I wear my noise-cancelling headphones, listen to music, bounce my leg, sway slightly, and doodle. I seem different, but my differences harm nobody. They help me focus and feel content instead of pained in public spaces.
In summary: keep the stims that cause pain if repressed, replace more noticeable stims with discreet ones with the consent and advice of the child (and remember to relax and unmask afterwards), and don’t be ashamed of the differences in movement. Focus not on seeming normal, but on self-actualization, wellbeing, and making sure as many people are as comfortable as possible.
4. Is it difficult to assert yourself in social settings?
It depends — if we’re talking about knowledge or facts in class, it’s very easy for me to go into happy info-dump mode. But in other scenarios, I’m mostly silent. Small talk is exceptionally difficult for me. A study that I sadly can’t find now said that autistic people don’t get dopamine from engaging in idle chit-chat, or considerably less of it. Instead, we get pleasure from focusing on our special interests.
I used to be a complete doormat. I let people walk over me like an escalator in a crowded subway during rush-hour. Without my diagnosis, I thought that my academic difficulties and social difficulties were caused by me not trying hard enough, so I did anything I could to please other people. I was terrified of being a ‘bad’ person, and didn’t speak about my difficulties. I just thought I had to push past it. This, of course, did not work. I kept on forgetting my PE kit. I couldn’t remember what lessons I had on what particular day, so I carried heavy textbooks for each of my subjects in my bag at once. I would forget where I’d placed my bag during break, and often arrived late to lessons after running around in a desperate search for what I needed to learn. This perpetual, ceaseless scrambling led to autistic burnout and depression. Not a particularly pleasant combination, I say from experience.
All the above meant I was afraid to express my own opinions for fear of saying something incorrect. It meant I apologised for apologising too much. I was used to trying my best and people pronouncing my efforts bad, wrong, or inadequate. I avoided most people because I thought my company would burden them. I ate lunch alone next to a creepy shed reputed to house a creepy old man since it was the only secluded area away from others.
Things improved dramatically once my depression ended and I moved to a different school. And even more when I started A-levels and made friends with other autistic people for the first time.
I’m still working on asserting myself, but knowing that I’m autistic has helped me immensely.
5. Do you believe functioning levels increase/decrease self esteem and how an autistic individual views their place in the world?
Quite a few autistic activists disagree with the concept of functioning levels precisely because of this. While functioning labels are not inherently bad, they’re very easy to misuse.
Being labelled high functioning can make a person recalcitrant to ask for the help they need, and make them feel like a failure if they have a shutdown or meltdown because they’re not ‘that’ kind of autistic. And it can push a person to mask until exhaustion or burnout because they are so close to being ‘normal’ and they strive to reach it at any cost. Masking means pushing down autistic traits such as stimming and avoiding eye contact. It can be useful for short periods of time, but it’s important to unmask and go back to your true self after the need to hide ends.
It can create false divisions in the autistic community, and tie in to the idea that in order for a person to have worth or humanity, they must be as close to neurotypical as possible. It’s understandable that many autistics are eager to label themselves high functioning to distance themselves from the stigma associated with the label of just autistic. However, it can be elitist. If you spot statements such as: I’m high functioning, not low, my mind is fine, I’m not like them, you’re spotting elitism in action. It’s a lose-lose game where autistic people capable of hiding their autistic traits are forced to do so until burnout if they want to be respected, and autistic people incapable of hiding their autistic traits are seen as subhuman. Sadly, a few autistic people are willing to dehumanise another group of autistics to try and prove their humanity.
Differences Between High- and Low-Functioning Autism (verywellhealth.com)
Square 8: I Am Joe’s Functioning Label (aspergersquare8.blogspot.com)
The Fallacy of Functioning Labels – Speaking of Autism… (wordpress.com)
Often, when highly verbal autistic people speak about the importance of stimming and the right to pursue special interests, they are shut down by cries of: “You’re not that kind of autistic, my child is different.” While that may be the case (a highly verbal autistic person who’s married and has a full-time job is very different to the non verbal person whose sensory sensitivities mean they can never do a typical 9-5 job), some aspects of the autistic experience are universal. Stimming is important. Yes, self-injurious behaviour should be stopped and replaced by healthier stims that don’t cause injury, but stimming is a source of joy and comfort.
Being labelled low functioning can mean no one expects anything from you. Plenty of non-speaking autistic people are pigeon-holed as low-functioning despite all their other strengths and abilities. As an example of how deeply they are dehumanised, please read Ido’s post: No, I’m Not a Horse: A Refutation of the Clever Hans Comparison to Autistic Typers | Ido in Autismland. Autistic people who use AAC (augmentative and alternative communication) are often seen as incapable of intelligent communication. If they do type, then people say they can’t be low functioning since they’re capable of coherent thought. They have even been compared to Hans the Clever horse, whose mathematical abilities were staged. Some one star reviews of The Reason I Jump, a memoir written by a young non verbal autistic boy, said that he couldn’t possibly have been intelligent enough to have the depth of insights that he did, that the memoir must be faked. The main reason they doubted the veracity of the boy’s words was that he was non-speaking and used AAC.
In addition, functioning labels aren’t static or universally applicable. Autism is a spectrum, not a linear scale. This comic explained it well: Understanding the Spectrum – a comic strip explanation | The Art of Autism (the-art-of-autism.com)
To summarise the comic, there are many different autistic traits — both skills and difficulties. A person with horrible executive functioning (organisation and planning) but excellent verbal skills can’t be easily placed into the box of high or low functioning. They may forget to eat or brush their teeth, and on the same day, write a fluent analysis of autistic representation in the media. (That’s me, actually!)
To demonstrate, I’m going to describe two different autistic people:
One wears the same socks for days on end and erodes through the fabric by pacing. They go completely mute under severe stress, and wear noise cancelling headphones all day to block out noise. Sometimes they will flinch if a person approaches them without warning. The sensation of showering is painful to them, so they often opt to wear deodorant and wash their upper body just using the sink instead. Their executive dysfunction and difficulties with social interaction means they’ll never be able to hold down a typical office job, and living wholly independently is an impossible goal.
Low functioning, right?
Here’s another. They’ve started a blog, are taking their second year of A levels and are predicted all A’s. They play Dungeons and Dragons with their friends on Thursdays, and interact with people daily on their social media account. They’re over 126 pages into writing a high fantasy novel from two different perspectives. They’ve served on a youth board for Index on Censorship, run 5k, and have cooked an entire lasagna from scratch. (And yes, cooking lasagna is just as impressive as running 5k. So many fiddly layers!)
They’re high functioning, right?
Well, no. Both of the people above are me. I cherry picked certain behaviours to frame myself in different lights. So, am I low functioning or high functioning? I’m neither. I’m just me. I have difficulties in some areas (executive functioning, auditory sensitivities), and great strengths in others (creativity, analysis, humour).
While functioning levels do have a place, it’s a very small place. It’s much more helpful to discover which particular areas an autistic person needs help with, and what their strengths are. Functioning labels don’t tell you what an autistic person actually needs to self-actualise and be happy.
So, what do we use instead of functioning levels? There are support levels, but they are just as restricting if not used properly. A person may need support with social interaction but not academia, or vice versa. The problem with both support levels and functioning labels is that they’re not individualized and often fail to reflect the full humanity of the autistic person.
The answer isn’t to stop using them entirely, but to use them a lot less, and to be more specific when describing the kind of supports an autistic person needs and their abilities and strengths.
6. What advice would you give to parents struggling to help their kid(s) be seen/heard/accepted?
I’d recommend introducing your child to the concept of neurodiversity and the social model of disability. If they’re young, you can use simpler words to describe it. For neurodiversity, it’s about acceptance. It doesn’t mean not acknowledging the difficulties that can come from being autistic, but it means knowing that there is nothing to fix. Saying things like: your brain is beautiful just the way it is, I love how you think, will help immensely in developing your child’s self esteem and help them advocate for themselves. In order to feel seen and heard, it is important for them to be able to assert themselves and speak clearly about their needs. It’s difficult for them to do that if they feel broken.
For the social model of disability: while autism is a disorder, much of the difficulties that come from it arise from trying to function in a world designed for neurotypicals. When in a space compatible with an autistic mind, the difficulties will lessen greatly, and some will even vanish. Making their environment compatible with their neurology will give them a launching point from which they can form healthy self esteem and pursue their interests.
If they’re not being accepted, that’s where meeting other autistic people is integral. Being accepted by their parents is incredibly valuable — my parents buy me clothing that’s friendly to my skin and noise-cancelling headphones, they let me steal Spotify even though it’s a family account, and they go out of their way to find the food brands I can eat. I love them, and their love and support is beautiful, but it’s not the same as talking to people the same age as you who are like you. When with fellow autistic people, they won’t feel the need to hide their stims, and if their special interests coincide, happy times are a practical guarantee. (All of my long term friends are creatives and/or writers like me, no exceptions.) Talking on online forums, going to an autistic group meetup, or just finding fellow autistics in the wild (school, extracurriculars, whatever) are all viable methods of friend obtainment.
Also, be a mama/dada/parent bear in fighting to get your child the accommodations they need. When they are supported, they’ll feel acknowledged, worthy, and seen. Of course, ask what supports they need and want before championing for them, since what would help one autistic child might harm another. Plus, bringing them into the process will help them learn self-advocacy and make sure their accommodations are a great fit for their individual needs.
7. Can you tell our readers the importance of allowing creativity and expression, and the best ways to redirect when those methods become unhealthy to themselves and those around them.
Expressions of creativity become harmful when a person neglects their health in order to pursue their passions. I’d recommend instating mandatory breaks and limits (such as no staying up all night writing unless it is incredibly important, and make sure you sleep enough the days after doing that). I have a smartwatch that beeps to remind me to eat and drink, and this stops me from abandoning my body.
If a person becomes obsessed with a topic to the detriment of their school work or friendships, stopping them from pursuing this isn’t always the answer. Often, retreating into special interests is a coping mechanism to avoid distress or discomfort. Stopping the person from pursuing what they love won’t help, only removing the source of the distress will. If the coping mechanism is causing substantial harm (such as playing video games all night), then it’s acceptable to limit the behaviour, but not to stop it entirely. (Eg: you can play as much as you’d like after school, but never past 9pm.) It’s only when they feel safe will they be able to engage with their passions in a healthier manner. I speak from experience — when overwhelmed, I read articles on creative writing/book reviews instead of working on homework. Stopping me from reading wouldn’t help me be productive, I’d only get more overwhelmed as my coping mechanism was stolen from me. Sometimes you just have to ride out the obsession/fixation until it ends, and getting lost in an interest can be deeply replenishing and restorative. Trying to end the fixation early means it won’t be as fulfilling — if someone feels guilt as they pursue it, it will take longer for them to recover and be able to focus on other things.
I’m currently working on a high fantasy novel called We the Brazen. It will take at least three more years of intensive worldbuilding and writing to complete, and I won’t be able to both hold down a job and work on my passion simultaneously. This is a healthy expression of my creativity — it brings me a deep sense of fulfillment and wonder, and I will eventually be able to turn my writing into a career. It would be unhealthy if I became so obsessed with it that I became incapable of finishing high school — and that’s only because I want to finish high school. Even if I could never publish We the Brazen or gain money from it, writing it would still be a healthy expression of creativity due to the solace and joy I take in its creation.
8. What are the best to approach and befriend others in the community? What about friends not on the spectrum? How important is it to have a mix of both?
Both are important, and there are a ton of methods of friend acquisition. For finding and befriending other autistics, I have a non-exhaustive list:
Option A) Utilise your Autismdar. Autistic people often have particular mannerisms and habits of speech, which fellow autistic people will be able to pick up on. I made friends with a dude who bobbed his knees and head every time he said hello, and we had enjoyably awkward conversations. An excerpt of a typical conversation: “why can we say up north and down south but not left east?” I’ve never talked to him about it, but he’s very likely to be autistic. We just gravitated towards each other on instinct.
Option B) Being so confident and open about your autism that autistic people will just approach you in awe and wonder. This includes things such as wearing a t-shirt with the rainbow infinity symbol on it (the neurodiversity symbol for autism). There’s this wonderful t-shirt with a diagram of a chili pepper, and the words: “Autism levels = extra spicy.” I have never wanted an article of clothing more in my life. I’m trying to be option B, but I’m a work in progress. (I’ll get there once I have enough money for the stuff).
Option C) Make friends with people and disclose your autism when you feel safe. This has been the most effective method for me, and I got lucky. I now have three autistic friends (Levi, Voytek, Eva) without even trying! This is also a great method of finding the neurotypical people who will accept you as you are.
For befriending neurotypicals, I can’t really help you. I’m not particularly skilled at this. My advice is to find neurotypical people who share similar interests to you, such as writing, marine biology, or video gaming. In addition, find ways of spending time together that don’t involve nonstop conversation. Watch a movie. Go for a walk in the park. Go scuba diving. (The latter piece of advice might not be very applicable for typical daily life, but the sentiment stands.) For me, being in larger groups helps, since I don’t have to talk, I can just listen. Other autistic people might prefer one on one conversations. Find what works best for you.
Also, don’t feel pressured to have an active social life in neurotypical terms. I play DnD with my friends on Thursdays, and that’s my only weekly scheduled social interaction. This is very active in my own terms, since it involves roleplaying in a large group of people for hours on end. I visit my friends only if I have the energy to. Small talk doesn’t give autistic people as much dopamine or serotonin as it does neurotypical people — pursuing our interests gives us that same type of pleasure and joy. This is why you will often find autistic kids engaged in parallel play instead of ‘interactive’ play. For us, doing the same thing in the same room together is deeply social. It means: I trust you, I enjoy your presence. Find people with similar interests, and friendship will just come.
I know this was a long one so, if you made it this far, I hope you learned as much as did during this interview. for those who appreciated this perspective, I am happy to announce that AK Nephtali will be coming on as a resident writer for awesome autistics! we are excited to continue bringing you all insightful, fresh perspectives and advice.
with love ❤