Dealing with Unwanted Advice when Autistic
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I hate advice, and have been very vocal about it for a while. Unfortunately, this hasn’t stopped me from being on the receiving end of many a well-intended bit of unwanted advice. It certainly doesn’t help that I’m also incredibly small and cute, so I’m don’t think that too many people take me seriously when I assert myself.
Oh, well. Even if I can’t change people’s behavior, at least you can’t accuse me of not speaking up!
The solid majority of the advice I get is from people close to me who are well-meaning and who just want to see me thrive. Oftentimes, however, it ends up being more of an irritant, no matter how well-intentioned it is.
One of my biggest hangups with unwanted advice is that neurodivergence and mental illness generally makes concepts like “right” and “wrong” — or “correct” and “incorrect” thinking — nebulous. I firmly believe that to truly come into our power as autistics and advocate for ourselves, we have to be at least a little bit stubborn (sometimes, a lot) about our truths. Struggling with multiple comorbid mental illnesses, however, can make learning to trust our truths a bit complicated.
Most of the unwanted advice I receive feels like a platitudinal and oversimplified solution to a very, very complex set of problems.
How can I trust my truth if my way of thinking about the world pathologized and seen as distorted by mainstream psychiatry? How can I love myself if many of the things that pop into my head and come out of my mouth seems like pure insanity to the outside world? What’s the point of my advocacy and writing-based activism if the very things I believe aren’t seen as true? It’s one thing to be loved; it’s a special type of wonderful to be believed.
Truthfully, I don’t believe that easy answers to these questions exist. Rather than acknowledging these nuances, however, most of the unwanted advice I receive feels like a platitudinal and oversimplified solution to a very, very complex set of problems. Hell, even the functioning of non-neurodiverse minds are still outside the scope of understanding for many seasoned academics; autistic minds are a whole ‘nother ballpark.
To illustrate the dangers of oversimplification, I’ll use an example of something I was told recently: “you are in charge of your own mind.” My lived experience with obsessive-compulsive disorder (a GREAT power combo with autism, by the way) has rendered this affirmation asinine. I truly, and I mean truly, cannot control the thoughts that pop into my head. I also cannot control the onslaught of specific emotions that happen when I am triggered.
When I experience intrusive thoughts, I don’t just experience anxiety or distress: I feel physically tainted. I feel unclean and disturbed on a very visceral level. My mind is only the beginning of what’s affected.
The chain reaction that occurs when I experience stress, anger, overwhelm, or dysphoria is less like a cognitive feedback loop and more like a wildfire.
My autistic overwhelm manifests in a very similar way: throughout my whole body. I experience dread, social rejection, restlessness, moral violation, and sensory overwhelm as pounding headaches, a clenching stomach, back pain, GI distress, feeling unclean, hyperactivity, and sharp pain all over my body. If it were a simple matter of controlling the little thoughts that ping around in my head, then yes, thought management would be a nice, simple solution to all my ailments.
So yeah, it’s not just a simple matter of controlling my mind and having mastery over my thoughts. This excellent and layman-friendly breakdown of the hypothalamic-pituitary-adrenal (HPA) axis is a good beginner’s guide to why mental distress is not just all in my head. The chain reaction that occurs when I experience stress, anger, overwhelm, or dysphoria is less like a cognitive feedback loop and more like a wildfire that spreads throughout my whole body. It doesn’t just put me in a funk; it feels like knives on my skin and nerve endings.
In addition to a lot of mental health advice oversimplifying how the brain works, it also greatly contributes to my semi-perpetual autistic overwhelm. My thought processes manifest in a similar way to having 20+ tabs open on your computer at the same time (mea culpa), or like a massive laundry list of unfinished tasks. Rather than being encouraging, most mental health-related advice I receive feels like another freaking task. For example:
“Have you tried (insert name of hard-to-pronounce trendy mushroom supplement)? It REALLY helped my anxiety!!”
Supplements cost money that I could be spending on food and bills.
“Have you ever tried (insert random strict elimination diet that may not be financially feasable)? I cured my 8 year-old sister’s nephew’s cousin’s autism by taking out bread!”
Less gluten may help my tummy, but it doesn’t do much for my deeply-ingrained trauma responses. Sorry.
And, my favorite:
“You just gotta ignore your thoughts, ya know. Ever tried that?”
Again, most of this advice, while irritating, mostly comes from a good place. So I should at least think about it, right?
Here’s a little insight into how I “think about” things:
On a daily basis, I have to manage mental and emotional overload from my to-do list, my environment, the many chaotic signals my body sends off, and my social obligations to mask at least a little to avoid being extremely annoying. When all is said and done, I don’t have a whole lot of energy or cognitive bandwidth left over to make radical changes in my lifestyle just because a very passionate person told me to do so.
Naturally, a lot of advice ends up becoming an extra set of to-dos, obligations, and “shoulds” and “shouldn’ts” to shovel onto the pile. All of my energy now has to be redirected towards implementing these changes. I then have to decide how much energy to allocate to creating new, expensive, time-consuming rituals, and how much energy to allocate towards surviving and getting through the day.*
Guess which one usually wins out?
At best, most unwanted advice is some flavor of pseudoscientific bullshit. At worst, it overwhelms me, and makes me feel even lonelier than before.
All that being said, you may be reading this wondering if there is a better way to communicate advice to your autistic loved ones. Or, perhaps you’re a neurodiverse person wondering if there’s a tactful, gentle way to tell people to lay off?
I can’t really offer advice on either, and it would also be hilariously ironic for me to do so in an anti-advice article. I’m still learning, just like everyone else, how to navigate the overwhelm of daily existence.
However, I firmly believe that it is important for neurodiverse people to acknowledge and celebrate their truths, even if their truths aren’t articulately-worded or passable as sane to the outside world. Believing that you say, do, and believe truth is powerful — and an important aspect of radical self-compassion.
But the truth is also slippery, and not always easy to define. This is what makes navigating unwanted advice incredibly tricky. If I can’t trust myself, then I can be very easily controlled by well-meaning (and not-so-well-meaning) neurotypicals who…well, aren’t me, and can’t fully understand how my brain works. I’ve lived that way before; the results were catastrophic to my well-being and sense of self.
There’s no simple way forward when it comes to messy brain stuff. And a lot of well-meaning advice promises a simplicity that may not be attainable, or even healthy, depending on the individual. The only way forward I can really see is to start by giving grace instead of advice.
If I am truly bonkers, can’t trust my own judgement, and have to rely on what other people tell me is true for the rest of my life…what kind of life is that? I don’t want to be fixed. I want to be sat with. Held, even. I need to love myself, and give grace to myself, and maybe receive that in return.
Sitting with, giving grace, and holding space for yourself or your autistic loved ones is not a perfect process, either. But it’s a start.
Happy Thanksgiving, y’all.
*The best advice I’ve received doesn’t require an insane amount of mental effort to implement, but this article isn’t about good advice.
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