Compassionate Boundaries versus Enabling and Why It's Important to Differentiate When Raising Neurodiverse Kids

When Too Much Accommodation Flattens Potential

Adviso: My writing reflects my first hand experiences and all opinions and observations are solely mine. My writing primarily focuses on the higher functioning end of the spectrum. While I deeply empathize with the struggles for those whose experiences are vastly different than mine, it would be audacious of me to assume that my perspective speaks for them. I write only about my personal journey and no two journeys will be alike. I publicly share my story to offer support and camaraderie to others on a similar path.

My father once said, “You will use everything you learn”. When it comes to solving complex puzzles of the human condition, I am often reminded of his words because they have proven to be accurate. I have had several complex puzzles in my life to solve and the biggest one was understanding myself after finding out I was on the spectrum. I didn’t find out both my kids were on the spectrum until they were almost tweens so my personal journey began late in life.

We discovered in early elementary school that our oldest has ADHD which is often a gateway diagnosis for many, only to discover later it was actually autism with the co-occurring condition of ADHD. If we had known she was autistic from the start, it would have impacted how we structured routines and taught much needed skills. Instead, we were working within a limited paradigm by just focusing on the ADHD. While autism and ADHD have overlapping symptomatology, the therapeutic scaffolding for teaching pro-social behaviors will vary. What works well for ADHD which needs more assists with regard to managing lagging executive functioning, does not always successfully translate for sensory sensitivities.

After learning our daughter was neurodiverse I started doing outreach to better educate myself on best practices. What quickly became apparent to me is while I had the same struggles as many other parents, I was an outlier in terms of what I thought a solutions based approach looked like versus theirs. There is a very strong undercurrent within the neurodiverse community among those with fewer support needs, who vigorously advocate and demand that unconditional accommodation and understanding be the conventional standard. Many of these advocates have an impressive bandwidth to engage in endless online debates about terminology and best practices, like a school marm with a red pencil.

When I see terminology policed and insistence that every rule be challenged and bent in the name of accommodation, it gives me pause about the motivation behind it. I am a tireless advocate with regard to pushing the boundaries of inclusion and acceptance and if my child needs a reasonable accommodation then I will absolutely stand my ground. However, there needs to be a balance struck between accommodation and unintentionally enabling the creation of maladaptive coping mechanisms. Is the accommodation for the parent or the child? It’s a reasonable question to ask because without the understanding of intent, it is difficult to effectively problem solve.

My concept of best practices for teaching neurodiverse learners how to successfully navigate an allistic world is at odds with a prevalent parenting style within the neurodiverse community that I call Moses parenting. Moses parenting is when someone wants everyone to accommodate without question, removing every obstacle of distress from the path like the parting of the Red Sea; headlining the autism, making it the star of the show. The Moses parent defends their stance under the cover of educating others with long soliloquies describing their child’s needs which always makes me feel like they’ve been reduced down to a checklist. I disagree it’s about being an ambassador for change. It feels more like a way to exercise control over a difficult situation, which I completely understand having been there, done that (the daily grind of meltdown after meltdown with no time for your own mental recovery is exhausting); so that’s why I ask if the reasoning behind the didacticism is for the child’s benefit or a coping method for exhausted parents because the answer will impact the solution.

The world does not owe anyone unconditional acceptance.

Before the phone tree for my tar and feathering fires up, remember; I’m a part of the community too. I’m not only a parent of two children with very complex profiles, I am on the spectrum myself, so is my husband, and both of our families were undiagnosed ASD. I’m very well versed in spectrum nomenclature as well as the various traits and the point-of-no-return damage ignorance creates. My superpower is research, looking under every rock and going where rabbits fear to tread so trust me, I get it. Like a savant.

The expectation that all requests for accommodation be granted without question is what further perpetuates the bias of what I call stereo-tropes. Reinforcement of these tropes in the collective hinders better inclusion for neurodiverse people. While at times it might not seem like it, humans are primordially hard wired to be cooperative and want to be helpful when they can. Mental barriers to cooperation from allistics tend to get erected when demands seem to be constant, inconsistent and/or complicated. That’s part of the reason why when people hear the word autistic they immediately assume there will be a lot of unreasonable demands and hassles; choosing instead to pass on us, leaving us in a no-man’s land devoid of necessary supports.

I decided long ago that my parenting style would be based on what I call compassionate boundaries; which are defined by holding firm on the reality that there are certain non-negotiable social and behavioral expectations that need to be learned in order to succeed in an allistic world. My belief is teaching from a strengths-based foundation vis-à-vis the metacognition of self-awareness, while also creating a repository of tools to redirect unhealthy coping patterns. This will greatly impact the quality of life outcome for those with pragmatic language deficits. It is the difference between thriving versus just surviving. I do not sugar coat this reality with my kids on just how important good social skills are for achieving their aspirations. Telling them anything less is not compassionate and is predisposing them to a life of frustration and struggle. Before autism was better understood, or that it wasn’t just a childhood condition, there were, to borrow a phrase from Hemingway, many lost generations who endured more trauma than compassion, more isolation than inclusion and more life disappointments than success. I am part of one of those generations and so is my husband, so my perspectives are heavily influenced from me having to learning all of this the hard way; with added emphasis on hard.

From the outside, my husband and I share the same educational and social suburban experiences common for what was considered typical middle class in the 1970’s. He was parented much differently than I was; me being raised by neglectful, selfish parents and him by nurturing, caring ones. If this were a double blind sociology study and the question were asked which one of us fared better in spite of a hidden disability based on our environments, what would the results show? It depends on how the parameters of what defines success are measured; are they material or spiritual?

Impossible to know at the time, but he and I were getting future blueprints for how to overcome common autistic challenges. Well, at least I was. My husband thinks his childhood idyllic and no issues to see here other than a wee bit of procrastination that has had no significant impact on his life path. For a math major, it’s ironic to me when it comes to people skills and understanding human behavior how badly he miscalculates. I have dyscalculia so I struggle with anything numerical or spatial, but when it comes to behavior patterns, I’m a lightening calculator. Like a collector, I store data in a mental repository sometimes waiting years for the final piece to appear to complete the set and for the pattern to emerge.

I don’t remember a time when I wasn’t highly, outwardly self-aware. At eight years old, I already figured out that everyone around me, that could have or should have helped, failed me. What I didn’t know at the time was what it was that got in my way. Never once though did I ever stop searching for an answer. Still. My husband was failed by everyone around him too, but he still doesn’t see it. Ill intent is not the only marker for whether or not someone failed you; benevolent ignorance and denial are just as destructive. Profoundly lacking in self-awareness, he instead prefers to lazily live in unenlightened bliss. He’s uninterested in any answer beyond “It’s not my fault”; and didn’t see then, and continues to be too blind to see that there’s even a problem that needs solving.

We’ve had several generations now of kicking the ‘unidentified autism and lack of supports’ can down the road and are now reaping the consequences of the ‘it’s not my fault’ deflection ethos. Even before I knew I was on the autism spectrum I kept adjusting reactions and mannerisms while interacting in the wild. The reason I struggled wasn’t because of something inherently off with me but rather because I was applying the wrong mindset to the problem and once I shifted, it changed the entire paradigm of how I interacted with the world.

There is a lot of debate in neurodiverse circles with regard to a can’t versus won’t mindset and has proven to be a huge divider creating an ‘us’ against ‘them’ mentality not just within the neurodiverse community but also between the neurodiverse and allistic communities. In each case it seems to boil down to one primary issue: authenticity. A consequence of this resistance is the high likelihood of developing maladaptive coping mechanisms such as PDA.

In order to truly understand how best to encourage the creation of new neural pathways to establish healthier coping skills, it’s crucial to understand all the components that create a behavior and how all the pieces interact with each other. In french, the word grain means seed. I love the visualization of breaking something down to the most base level and building from there. The more secure the foundation, the better the outcome. What then is the grain for igniting defense mode, i.e. a highly reactive state, in someone neurodiverse? The most powerful primal emotion of all: Fear.

Primal fear keeps society’s wheels from falling off. During a time when we lived in tribes, alienation from the group meant certain death. Even though more metaphoric than literal now since we don’t need to live in tribes to secure food or shelter; we’re still at the mercy of being social creatures and the fear of isolation is a powerful reminder to color inside the lines of social protocol. This sets the stage for each side staying on their side instead of encouraging bridging the gaps of understanding and moving more towards the center.

When it comes to differences, people on both sides fear that which they do not understand.

One of the first things you learn in parent coaching is ‘kids do well when they can’ so it’s important to help set the stage for their success. The parent is taught how to reframe the can’t versus won’t reaction: it’s not a won’t, it’s a can’t because they haven’t yet learned the necessary tools. I’ll agree, for a kid, it’s a lot more of a can’t than a won’t because children by default, want to please their caregivers so they will try to honor what is being asked of them. But what happens when they are not given the correct tools and never learn the skills they need to thrive? Some grow up to be a l’enfant terrible in short pants licking a lolly when they become adults. That’s when it crosses the threshold from can’t to won’t because the maladaptive survival tools have become so deeply ingrained and are exceedingly challenging to redirect in an unmotivated adult.

Another determinant essential to social success regardless of neurotype, and Moses Parenting destroys it while Compassionate Boundaries makes it flourish: resilience.

Resilience is fear’s antidote.

My parents were abusive and neglectful, leaving me to parent myself. I was like a cat in a largely dog world who tried really hard to be a dog but I couldn’t because I was a cat, and still carry those deep scars because I didn’t find out I was a cat until years later. While it definitely didn’t feel like it at the time, it was a silver lining because it forced me to push beyond any self-imposed or societal limits. I may not have gotten as far as the standard I had set for myself, but I know I got further by trying because I constantly had to stress test my limits in order to survive.

Instead of leaning into my weaknesses, I tenaciously grew my strengths.

Many who are neurodiverse don’t feel safe unless they are masked, pretending to be something they’re not - neurotypical. Often, as a defense to this they lean into an exaggeration of who they are by displaying only their autistic traits which perpetuates the frequent negative stereotyping and autistic-coded caricatures portrayed in the media. It stems from the disservice of constant accommodation because they were never taught how to confidently integrate societal expectations with their own personal identity. Everyone has to learn how to do this; this is not a neurotypical versus neurodiverse thing - this is a what it means to be a human thing.

Festering resentment from having to hide parts of themselves because it is frowned upon by neurotypical standards and never having learned skills to navigate common social challenges puts the neurodivergent person into a permanent state of anxiety. Hyper-vigilance is a trauma response where the brain never turns off defense mode, only occasionally turns down the dial. Over time, without anything to rigorously challenge it, the brain creates a hard wired precept that authenticity is not safe and only being heavily masked to ‘pass’ as someone who is neurotypical is. This perceived stigma is why it’s such a horse to water situation when it comes to getting someone who is neurodiverse to embrace treatment. As I’ve written about before, many only do performative therapy. Combine that with technicians who aren’t well versed in the understanding of how the neurodiverse mindset works and you get the perfect storm for low success rates even for those who have had years of therapy. The answer isn’t just therapy, it’s also recognizing all the core issues and how they interplay and creating a therapeutic program to successfully treat all target behaviors.

Paradigm Shift

Like the superstition that a cat will suck the soul from a baby, if neurodivergents feel the only purpose of masking is to appear neurotypical, they feel society is trying to discorporate their essence, strong-arming them to behave by a code of standards they had no say in. They will reflexively go into defense mode rejecting what they see as a threat. This mindset only hurts them.

The only way to improve efficacy rates is to reframe the conversation in order to approach a situation from your strengths, never your weaknesses.

Prior to my diagnosis, masking for me meant I would metaphorically throw whatever I could at the wall hoping it would stick when it came to social acceptance. After my diagnosis, I reframed masking to become masking with intention versus masking just to fit in. That simple reframe gave me my power back and allowed me to expose more of my private self in public. In other words, I was able to live within the rules society while retaining my authenticity. Like a beauty queen walking the runway, I work that authenticity like a boss. Masking does not always have to be seen as a negative. It has become demonized when instead it simply needs to be reframed that you have the power over it, not the other way around.

We might have more awareness about neurodiversity than in previous times, but we’ve got a long way to go before we have true acceptance and inclusion. By weakening the resolve of pushing the limits of personal endurance and rejecting learning to do anything that looks neurotypical in order to hold onto one’s authentic self, we’re teaching learned helplessness instead of teaching how to harness mastery over our strengths. Constantly parting the sea of potential pain interferes with learning mental resiliency. Resiliency is a necessary component for learning empathy. Resiliency is defined as learning to successfully adapt to psychologically stressful adverse life events; not their absence.

Those around my husband failed him because he was so well protected from the discomforts of his limitations there was never anything that challenged him, forcing him outside his comfort zone creating a pathway for consistent personal growth. My husband has always treated life like a foreign exchange student from France who signs up to take beginner French because it will be an easy A; coasting because there was less risk of stressors. Whenever he’d hit resistance, which didn’t take much since he has a markedly low tool box for managing stress, left to his own devices, he created maladaptive workarounds like avoidance instead of pushing his limits to learn better skills.

This absence of adversity has skewed his definition on what trauma looks like and this has negatively impacted every facet of his adult life. It still makes me bristle whenever he pules like a baby, calling me a bully for what is justified upset on my part for his absolute, without a shadow of a doubt, failing to be a true partner to me. What he calls mistreatment or ‘abuse’ is actually accountability. So adverse he is to having someone hold his feet to the fire of responsibility that he automatically goes into defense mode. He has this Pavlovian-like response of reverting to the toxic safe patterns he learned in childhood. Anytime I gently offered advice on a better way; he viewed me as a cat trying to steal his essence when nothing could be further from the truth. I don’t see him as less than; or that he’s a ‘bad’ person because I do not have the kind of character that exploits weaknesses and vulnerabilities. That’s more his modus operandi as he has demonstrated with regard to me. The erroneous impressions created by him are his inferential achilles heel.

My upset stems from his refusal to acknowledge and make changes demonstrating he is committed to authentic personal growth; wants to make me happy and showing a good faith commitment with an action like hiring an executive function coach. It’s not just for ‘us’ but also for him. I’m not thinking from a myopic perspective of how it just benefits me. I’m thinking from the perspective of him learning to become more of an outward thinker as improvements in how he comports himself in the world impacts the sum of all of its parts. I want it for him; to have the path for becoming his best self; not his best entitled self but rather so he can be the person he is meant to be; should be; could be.

Instead, he refuses to mentally budge; determined to drive that victimhood and subsequently our relationship, like a rental car. I‘m not shaming him or invalidating his feelings, I’m asking for self-introspection with an outward empathy focus versus his natural inward focus. He’s never had a problem though shaming me for having vulnerabilities; harshly invalidating my pain by contemptuously treating it as a burden on him, then weaponizing it to confirm his fictional bias that I am somehow inherently damaged. His lack of awareness is ludicrous in its childish obtusity. Being held accountable is not abuse but invalidating and exploiting my vulnerabilities for control, is.

When you have no idea what trauma looks like and compare your privilege as trauma is insulting to those of us who do know. It’s especially rich coming from the perpetrators creating the trauma because of their low meta-cognition beyond prioritizing their own needs.

He needs to examine why it is so difficult to first get past the resentment that it is his responsibility to learn and create better behavioral patterns when it’s abundantly clear the current ones not only do not serve him well, but deeply hurt others as well. This is where his parents failed him and left him with hands so soft that if they were to touch water, the skin would peel because he was never forced to do the labor of building the callouses that resilience brings. His entire life would be different if he learned how.

Resilience can be built, regardless of someone’s inborn nature; it's not an innate trait or a resource that can be used up.

Before I hear the ‘thank you very much’, ‘We’ll just continue on our exploration of gentle parenting and it’s clear your experience is just an isolated one’, let me tell you how the kids, now young adults, who were gently parented like my husband are doing because I meet them on Reddit all the time. Usually when I’m talking them off a suicidal ledge.

The kids are not doing all right.

Gentle parenting has left them weak and defenseless. They are the fallen gazelle left behind for a pride of lions to feast upon, while the rest of the pack flees. Good social skills and work arounds for executive function are necessary skills for survival. This idea of rejecting this notion simply because it’s considered a ‘neurotypical’ standard and therefore, doesn’t honor someone’s authentic autistic self is fallacious. As a parent, yes, it is tough to watch the awkward learning curve of understanding neurotypical practices; as a parent, yes it does feel cruel to ask your child to reach and stretch to learn something that is significantly outside their comfort zone; and as a parent, it’s only natural for the instinct to protect kicks in and the brain create a protection narrative, like a protection spell, where we falsely invent the rationalization that our child shouldn’t be the one who does all the ‘giving in’ and submits, so the other side should give in instead. All those years bubble wrapping has done is create an entitlement gap where expectations don’t match reality and without the right coping skills to manage the feelings of disappointment they quickly spiral downward. In my opinion, it’s even tougher to watch that; a tragedy that could have been prevented with the right interventions.

When it comes to learning the healthy skills to adapt to adverse life circumstances, as Ben Franklin said, “An ounce of prevention is worth a pound of cure”. The world is not going to step aside for them; that I can promise. It gets even harder the later you start the learning process because in order to learn the necessary pro-social skills to succeed, you first have to unlearn the entrenched maladaptive ones.

In order to change the world, you first have to be a part of it. If you can’t function in it, you can’t change it.

It’s not just the kids who need to hear this uncomfortable truth, but the parents too. Before waving me off, telling me it’s not your kid I’m talking about, you might want to check that first.

I’m not saying my ideas offer the best probative solutions, but I am saying what we’re doing now is not working. Seriously, it’s not. Like I said, I read a lot of social media to keep abreast of the state of things as they are in reality and I’m seeing a lot of misery and struggle when I believe it doesn’t have to be that way. In my case growing up, at least I had an excuse; I was raised in ignorance, but I refused then and I refuse now to lean into the mindset of limitations and be defined by my weaknesses instead of my strengths.

I want my children to be the vanguard of Generation Next - the generation that thrives and autism is reframed as just a neurotype with no character value or self-worth connotations implied, through creating a mindset to empower people to stretch their potential through radical acceptance instead of flattening it by overly pathologizing every trait. This benefits wherever one falls on the spectrum because it helps us to be better seen and understood with more compassion and less judgment.

My proof of concept that galvanizes me? My kids. I stood my ground about getting them help even as the slings and arrows of contempt were thrown at me. Me standing my ground in the face of intentional obstruction was used as another faulty determinant by my husband that I was a bully; damaging my relationship with my children and my ‘over-pathologizing’ was making them weak and it would be much better for them to be raised the way he was. Sure Jan. I’ve seen the ‘benefits’ of that rearing for the last 20 years as I watch all my dreams swirl the drain. But don’t you worry none, since I’m aging it’s not like having to wait me out so he can win will last forever.

Boundaries are important. The way I had to learn them wasn’t compassionate. The way my husband (still) hasn’t learned wasn’t compassionate. The space in between neglect and abuse is compassion.

Recently, after some reflection looking at the positive progress intervention has contributed to our kids’s being well-adjusted and mostly content, my husband said, “I wish I had that kind of support when I was growing up.” Coming from him, someone who just cannot, under any circumstances, hock up a loogie of pride or respect for anything I do, it’s not just proof of concept anymore, it’s impact.