In the beginning of January'23 I was laying on my bed and watching "Love on the spectrum". You see, the person I love dearly has been just diagnosed with ADHD and autism. The second part actually came as a surprise: how can they be autistic?! I could never relate to anyone more then I do to this amazing person and neither of us looked like a "Good Doctor" or Sheldon. The documentary was my attempt to broaden my views and learn more about autism: I was particularly interested in how autists feel and how they show their love.
First couple of "contestants" looked exactly like media taught me autistic people should look like: they loved trains, cars and spoke without any consideration for other's feelings. But then there was a girl that looked "normal". While she talked about herself I was getting more and more annoyed: there's nothing special about her worldview, it's not very different from my own. What a phony documentary... And then it hit me.
Ok, Google: how autism presents in females
I searched my memory database and couldn't find any female autistic model. I don't remember how much time I spent jumping from one google search to another, from article to article, from test to test: I tend to lose track of time when I'm onto something.
Finally everything was making sense! My intolerance of egg shells or greasy hair, why I played games with subtitles and without sound, why I drew a boy with very visible genitalia when I was in first grade, why I cry of sadness and happiness so very often, why I can't accept anything without fully understanding it, why I can't let go if I latch into something and, most importantly, why I have been so goddamned miserable my whole life no matter how hard I tried or how much progress I made.
Not broken, just different!
On January 27th I entered my doctor's office and I drew a diagram of my personality when he asked me what brought me there. Here it is, if you wonder:
I've explained that the closer to the core - the less control I have over that area. I can adjust my behaviours, but they are heavily influenced by my feelings, which fire up like alarms every time there's an opportunity to act in favour of my essence (labeled as DNA) and I can only acknowledge those alarms.
And, finally, I placed a tiny dot on the "consciousness" circle: that's my identity - a mind-cached version of my "core". "That dot is very small now, there's only one thing there at the moment.", - I said - "I suspect that I'm autistic".
It was very important for me to be validated there and then: had he said I'm delusional - my whole identity and the last hope of understanding myself would vanish...
Gladly, he didn't. He asked me if I intentionally drew consciousness as a shield and why emotions were wrapped in it. He talked about autism and how it's a huge misconception that autists don't feel anything, while the exact opposite is true - they feel everything ten fold, including deep empathy for inanimate objects.
He was careful, I knew he would be: to be diagnosed with Autism Spectrum Disorder one needs to wait in a long line for a psychiatric assessment and he couldn't possibly bypass that. Yet, by the end of our session he moved from "I don't see anything wrong with your train of thought" to more literal "I have performed multiple autism assessments myself and I have no doubts you are autistic."
Too smart to be diagnosed?!
That day I got a dubious "Other work-related condition" diagnosis and a note in my journal, stating that while he agrees with my self-diagnosis, he believes that by using my cognitive skills, I've built coping mechanisms that allow me to remain not only functional, but live happily ever after and that further investigation and diagnosis are irrelevant.
"The patient agrees" - the note concluded rightfully so. There is no benefit I can get from an official diagnosis, there's no medication for my "condition" and by all means I'm coping well on my own. The only support I need I can get regardless: a bit of a guidance to expand my identity and understand the difference between me and my neurotypical peers.
I am relieved and happy and my identity now has a strong foundation, but there is something he said that doesn't sit right with me: "There's a lot of unlucky people who aren't as smart as you and they are really disabled by their autism"
Don't want to be the lucky one
First of all, it has been rough 36 years and I'm really sour that I've spent them all not knowing who I am, masking and mimicking behaviour of others to fly under the radar. Sure, I was lucky (impulsive, courageous, naive) enough to accidentally build a career out of my special interests and after lots of trial and error find work environment that accommodated my needs of autonomy, direct feedback, sane deadlines and flexible schedule, but what about the others?
As soon as I suspected my autism I've connected with people in the same boat: some were much smarter than me, some were more talented than me, some were more different than alike and very few of them were happy with their life.
But I am happy, despite of everything I've been though. The very same traits that were supposed to disable me done the exact opposite. In the past six months I have been through work burnout, had my marriage shattered to pieces and needed to fully take on childcare. And yet I have never felt better.
That doesn't make any sense, does it? If I'm so smart and that somehow protected me, why wasn't it a universal experience for autistic folks with high IQ? Why did they struggle to find a job, have a family, find a sense of belonging in this world and instead were deeply depressed and lost?
I don't have all the answers, but I think I have this one: because we're all different. Autistic or not, neurodivergent and neurotypical - we are all individuals, unique and essential for each other, every single one of us. I was lucky to find people that allowed me to be myself and then I had the confidence to convince the rest. I was lucky to have a specific blend of high mental capacity, willpower and emotional resilience (and feelings) of a hormonal teenager that I never outgrew.
I don't want to be the lucky one, the anomaly within a minority, I want to be one of a million of lucky ones. I want my neurodivergent children to grow in a more accepting and compassionate world.
That - acceptance and compassion - is where we should begin.
But it's really hard to accept self, not to mention other people, when you are hungry, cold and not sure if you'll survive, isn't it?
It's dark and scary and very uncomfortable to talk about, but here is me: a privileged white woman in a nordic country with a fancy job title, good salary, typing this from an expensive laptop, who got cured of a life long struggle with a Netflix show, some google searches and one talk with a therapist; and there are hundreds and thousands of people on a different distance from the edge of disaster, severely exhausted, with little to no means of support, wanting to be part of this very society and contribute their talents to the benefit of all.
And so the only thing I can do as an autistic person who can't possibly guess what others want of me is ask: What can I do to help?
How can I help
I did ask this question in person and on Reddit and my reach was tiny, but judging by the answers I got - neurodivergent people need tools to be able to support themselves first and foremost. The next in the list was advocacy. I don't like word "advocacy" as it not very precise, for me it means respect, compassion and unconditional love.
So the next time I'll see a person that would strike me as odd, I'll keep an open mind and assume that this person knows something that I don't and vice versa. I am working hard on training my patience, I'm learning to ask questions instead of spiralling into a whirlwind of "what if"s and I'm opening up about my experience in the hopes that it'll help others find some solace and build their own identities.
That I can do on my own and I'm doing in hopes of fighting the stigma I surely perpetuated myself. But here's something I need help with.
All people need access and opportunities to develop their skills, build careers out of their special interests and have a chance to be as privileged as I am.
Here's a quote from one of my respondents:
Musicians, specially neurodivergent musicians, need better tools to accommodate their process of working and thinking, freeing their attention and creativity from having to deal with technical frustrations and being able to focus more solely on the music itself.
It's amazing how if you apply the same exact phrase to designers, content creators and software developers it still makes sense, while only the latter have access to a subset of tools and methodologies that make it possible.
I have spent over a decade of my life building software and I love it still, but I'm not enough.
The beauty of neurodiversity is the endless possibility of combinations: would I try and solve everything by myself I'd defy the very core of my ideology.
Here's what I have right now
I have a logo and a name for this project:
The name comes from the abbreviation "ND", but I like how it becomes almost a name, but not quite. It stands for neurodiversity and neurodivergent, as well as "_n_ot broken, just _d_ifferent" and "not disabled". Pick the one that you like most or come up with your own, it's a flexible name!
The logo is composed out of black and white infinity symbol and a heart. Hearts represents love and compassion; infinity symbol is almost like the ones for neurodiversity and autism, except it's not colored. It's not up to me to decide what's on the spectrum or not and I wanted the logo to be flexible too - it's an empty canvas, ready to be painted on.
I've also created a GitHub organisation as a platform for discussions and specifications of what this project should blossom into.
At the very least it'll give more people a chance to build a portfolio and get some mentoring and hands on experience to kickstart career in IT, I'll help with it to the best of my abilities. I do believe we could do much more together!
I would love to hear your ideas, opinions, suggestions, needs and, if you feel up for a challenge, to join me in building a digital bridge over a gap in our differences.
Top comments (32)
So you mean feeling miserable is in fact a part of the autistic spectrum?! I always thought I’m just a melancholic idiot 😅
Thank you for sharing your experience of recognition and acceptance, it’s already important and valuable to even just see that you’re not alone with this chaos in life and in mind.
I don't think misery is a part of autistic spectrum, just that in my case it was caused by masking and feeling misplaced and misunderstood.
My dear friend keeps trying to convince me that suffering is the baseline of life and I stand my ground: chaos is, full of possibilities for all things good and bad and in-between. I love chaos :-)
I have a friend. She is smart(entered into University in young age like 15). I am not sure if she was bullied but she said she always felt she couldn't focus and always felt depressed.(not good) I tried many ways to help her to focus, make her feel confident with little tasks. Sometimes it worked, sometimes it didn't. She finally decided to drop out after a few more years attempts to get the degree. She tried few jobs, which usually needed to interact with people. It put her in stress. Sometimes got bullied and being misunderstood or being picked on.
I encouraged her to learn web developments like html, css and JS. She said that she loved JS. But she always has problem to focus. She said she wanted to have a career in IT. But she couldn't focus something for more than 15 mins.
I wonder if we can make like small hurdles web developments program which can make them feel more confident? And further, to have it as a career. Like freecodecamp, when you complete those courses, you can use it as a certificate to be hired.
two references for the suggestion above:
1. Bullet Journal by Ryder Carroll. He has ADHD. He created bullet journals.
2. Tiny Habits Why Starting Small Makes Lasting Change Easy - BJ Fogg
hope my suggestions come handy to you.
Thank you very much, indeed that's something that could be very useful, I'll make sure to do something out of it!
And my heart goes for your friend you both sound like amazing people!
Valeria~ have you explored the freecodecamp for ND project ? I have tried it and it is really good with just like 1-3 minutes step-by-step hand-on on learning coding. Can start from html.
coding on the left and console/output result on the right, like the W3school.
Yes! I love this project, used it myself several years ago and recommended it to multitude of people. It doesn’t work for everyone, but definitely a great resource, thanks for bringing it up!
my pleasure. should you need more assistance or ideas, you can nudge me.
Hi, I was diagnosed two years ago, my narrow interest is dev and... I've had a career in dev. I am in the process of becoming an invisible disability referent in my company. Do not hesitate to contact me if you want to include me in your project.
I would very much appreciate you joining, how can I contact you?
You Can use the email on m'y public profile
That was an incredible post! My story is very much the same; but when I grew up in the 80's no one talked about "girls on the spectrum". Somehow I survived and thrived. I struggled terribly growing up. I was bullied and ostracized in school. Thank goodness our culture has changed a lot.
Valeria, you are brave. I know what its like to try to filter my blunt answers when I converse. I know what its like to loose hours of time going down the "rabbit hole". I have gone through life with few friends out of fear of exposing my extreme social awkwardness.
And here I am still on the journey (cause what else can you do but keep on keepin' on) and thankfully I've been able to have a relatively normal life.
Your story is so encouraging. I will help out in any way I can.
Thank you, Judith! Let's get in contact and see how we can support each other!
For the first part of your existence, it seems, you focused on being. Your attention was inward, trying to establish an identity. This is natural, of course.
You are now less miserable. What has changed? I would argue that it is your focus. By helping you to define your being, the doctor has helped you to move on. You are now focused on doing. Your attention is outward.
I would suggest that it doesn't matter at all who you are. Who cares? I sure don't. And neither, really, does anyone else. Why should you?
What matters immensely is what you do. Everyone cares about that. The world is a raging mess, and we make it that way, and we need to start doing things very differently. Like right now.
That's what you appear to be doing. And as you're finding out, the less you worry about identity and the more you focus outward on helping others, they happier and more fulfilled you are.
BTW, your logo is on a transparent background, so in dark mode it is essentially invisible. Nice logo, though, from what I can make out of it.
Thank you for your thoughts. I understand where you're coming from, though it's mostly important what I care about. I have relied too much and for far too long on what others think of me and that brought misery and wasted too much of my energy. That is what changed, I believe, and that's what I tried to share.
You're welcome. I don't think you understand where I'm coming from at all, but that's OK. Good luck with your venture.
Read this with interest. Perhaps my favourite line was "Autistic or not, neurodivergent and neurotypical - we are all individuals, unique and essential for each other, every single one of us." ... because the rest I find admittedly not atypical in any real way at all.
Much rather I would find myself counselling someone on your journey to be aware of, or if already well aware of (as I make no assumptions here, nor am I about to preach) then to convey that in the intro to any article like this, the following two potent themes:
The first is very relevant when we discuss syndromes and spectra, which are code words in the infantile and growing sciences around human psychiatry, psychology, and identity (by infantile I mean no pejorative, I like most of us, love infants, I mean simply that we have long long way to go before we are mature in our collective understanding of those things). They are code words for "we don't really know WTF is going on here, but we are seeing patterns". Patterns allow us to classify things and to attach labels.
A label can be very empowering and it can be very destructive, depending entirely upon the perception of that label in one's audience and environment. But ultimately when reflecting on our experience and comparing it with others we play the game of seeking labels - for our own and other's comfort.
ASD is interesting like that, because it's mooted many a time of course that by current clinical criteria, well, perhaps half or more of the IT profession can identify with them and feel they are conceivably or probably ASD.
The bottom line is you are as you are, and you can learn to be as you wish to be, within reason and the limits of your physique and chemistry, but you probably have more influence over even those than seems likely at first - and a great many powerful people attest to that. Perhaps the two greatest skills I think in that pursuit might be described as introspection and commitment but a third is hot on their heels - "listening". With those under our wing, surprising things can be achieved by the most unlikely of us. Within, of course, limits (we can grow new limbs or discover talents we lack, but we can acquire skills to compensate).
"listening" of course, and active listening in particular, is the one we need to foster in each other and the people around us. It is the sword if you will at the throats of prejudice and fear. And the world of blogging (as here on dev,to) if nought else, provides a voice to people historically not listened to, and an opportunity for others (all of us) to read them and reflect. Quite the opposite of the reflexive, immediate and consequently caustic and dangerous environment that microblogging platforms create,
Good luck with it, and hold the torch for kindness and tolerance, of different people.
That said, be careful, too, of a habit we see emerging in mental health circles, of expecting too much. Perhaps the most common one I see is the plaintive plea posted in many contexts to hang out with depressed folk ... like that's ever going to happen in any big way. I know depression, most everyone does (if you don't there's a screw loose somewhere I think) and it's clinical if it becomes chronic and starts to damage relationships, but my it's nature it's isolating and none of us fun to hang out with when we're depressed - that remains the privvy of our siblings, family, and closest friends - to whom we'll admit those feelings and hopefully, feel understood, and accepted. That alone is therapeutic. But the spectrum is broad, there are many different labels for different collections of behaviours and reported experience. We just have to accept that some behaviours, will, invariably, be unpopular.
Thank you for sharing! I wrote something very unpopular on that topic - a poem. Here it is:
A label, a thought, an idea.
What can it possibly change?
"You have been alright, what's the deal?"
"You haven't been acting that strange."
Oh thank you for your recognition
Of the role I so masterfully played.
I tried and with each audition,
I learned more and more as I failed.
I failed to fullfil expectations,
I failed to pretend I'm alright,
I failed to ask proper questions,
I failed when I thought I was right.
Confused, terrified, ever worried,
I stumbled alone in the dark.
Never healing and hiding my sorrow,
Trying hard and failing my mark.
Now please, don't offer me pity,
I'm not broken, my life is my own,
Mind is free and I can outwit you
Shall you try and deny what I'm owed.
That's the difference a label has given,
That is what a thought can weight.
I am what I am, and I'm living,
And that is not up for debate.
That's brilliant, not sure why it's unpopular. Quite the thing to take the time to pen. The on niggle I have with it (as a mild grammar nazi, read erstwhile technical writer and editor) is the use of weight as a verb in the third last line ;-) ... I might have run with "Robbing a thought of its weight" ;-).
Labels are indeed all about association, and can lend recognition or cast judgement ...
Great article, thanks!
One advise I can give you (and any people who are likely autistic but can function) is: Don't get the official diagnose. It probably is different for each country, but having the diagnose makes things like insurances way more expensive or removes clauses that speak about things like work-related problems.
As you said, any help you can get is available even without the diagnose.
I’d be interested to hear more
Sure thing! What would you like to know?
We're slowly gathering together here and trying to figure out the ways of collaboration.
I've just created a slack workspace, and we have a discord channel. The latter is currently in French.
Well it’s a great idea to start building a community and tools for the neurodiverse, but it’s a hard problem to tackle. Where do you even start? I can join the slack and offer what I can.
I started by reaching out :-) Indeed, it's a hard one and I don't think there's a superhuman walking this earth that can do it alone, but I hope that with some time, trial and error we could gradually get there together.
Thank you and please do :-)
Did not read all, but will do.
I feel you.
Got my diagnosis (ADHD and autism) in my 35th year on this wrong planet 😜
Just got my diagnosis at 43th and I don't remember how I found this post but I'm actually searching for a way to help the autistic community by developping tools. (Still have some left over from burnout affecting short term memory so I mostly forgot why I wanted to comment... It will be processed later, not a big deal)
I see your 43 and raise 46
I am so happy you found it!
I have answered to your message in en-di discussions, I think it's a great idea and I'm definitely in :-)
Yeah, the planet needs some refinement indeed :-)
Congratulations and let me know if I can help!
How times have changed! All this time, I've been envying musicians for having the good tools. But this goes back to the 90s. Atari STs were getting very old and Pentiums of the era were not capable of the same precise timing. Devices appeared which focused on a single aspect of musical creation. For example, one of the first was a tiny programmable drum loop device with an LCD display and a few buttons. As the years rolled by, I struggled more and more with the ever-increasing complexity of software, not to mention horrific GUIs -- I found navigating them nightmarish. It was clear that some of the complexity stemmed from trying to cram too many features into individual applications. At the same time, I've never found a window system which does a really adequate job of helping me find the right window, especially not when I'm concentrating on something. Between these two issues, I began to envy musicians with their single-purpose boxes. If it's autistic/ADHD musicians who are struggling now, how times have changed!
I can hardly deal with modern software development at all. Complexity is a huge problem, and some of the tools for dealing with it are themselves quite impossible. Searches are very hit-and-miss, often exhausting my ability to focus before I've found a solution. Name completion would be a remarkably useful tool if I didn't feel on the verge of hallucinating after an hour of its constantly changing suggestion list flickering away in my peripheral vision. It's the bottom of the list which gets into peripheral vision, but the part which changes as I focus on it is also very bad for me.
I'm very thankful I don't have to work. It leaves me free to poke around in the somewhat more managable retrocomputing and embedded fields. I was able to use Plan 9 From Bell Labs as my primary desktop operating system for about 10 years despite lack of support for modern web browsers or 3D games. I had a Linux box just for those.
I had a thought about developing single-purpose music gizmos myself, but I'm not really sure that era is entirely over. I see live-loopers on Youtube making beautiful music with decks which don't seem terribly complicated. And some of the most complex and intricate compositions were produced without the aid of electronic devices at all. They just had divas and patrons to deal with. Oh wait, we still have those. ;)
I'm trying to say that it's possible to find different, more comfortable technology to do essentially the same thing, but sometimes it's not, is it? Plan 9 was only partially good for me. Hopefully, the en-di project will fill in a lot of gaps. :)
Thank you so much! Your input gives a different perspective certainly. My nearest musician complains of two things mostly: GarageBand (and need to use Mac) and inability to capitalise on their talent. I don't know if en-di will have capacity to do it anytime soon, but physical devices might be a good idea to pursue, as you said, not everything needs to be a flickering light (which software is ultimately based on).
actuallyautistic and #adhd here - not much of a dev/coder right now but count me in your project
Welcome! Happy to have you:-)
Just sent the invite