Neurodiverse-Affirming Mantras

In my last two posts, I've talked about some of the things that, to me, define an ND-affirming perspective. I've also come to associate a handful of mottos with ND-affirming approaches. Together, I find them a very useful shorthand as well as a litmus test to verify whether some suggested strategy is indeed ND-affirming and consistent with my values.

I find that the first three phrases in particular make good mantras. They are short snippets that this orangutan is attempting to repeat over and over in her head when Oranguette has me pulling my orange (and increasingly grey) fur out. It's a work in progress.

The fourth phrase is probably the most succinct definition of a ND-affirming philosophy that I've found.

Regulation Before Expectation

Why exactly this phrase is, in my mind at least, associated with ND-affirming approaches is a mystery to me. Isn't it a basic scientific fact that nobody -- orangutan or human -- can think straight when they are dysregulated? I mean, even if you are some sort of evil comic-book villain who wants to control an army of minions to do your bidding, you probably aren't going to have a lot of luck if they are all running in circles panicking, are you?

Which brings me back to one of my favourite lines from the Hitchhiker's Guide to the Galaxy: Don't Panic!

Generally, it is considered bad form to tell someone outright to calm down or stop panicking. As an orangutan prone to catastrophizing, I am going to go against the conventional wisdom here, and say that I appreciate a friendly "don't panic!" reminder now and then, provided it is delivered by someone trustworthy who might actually help sort things out with me. However, I am apparently not representative of other orangutans in this regard, as I have learned through painful experience.

Nevertheless, whether one can safely utter the thought out loud or not, "Don't Panic!" or "Regulation Before Expectation" are both reminders that no learnings are going to occur, no progress is going to be made, and no problems are going to be solved, until everyone is calm and regulated.

It is easy enough to forget this while trying in vain to get a child in a flaming meltdown to do something that appears to be (or is) necessary in the moment, but it is even easier to overlook when one's child is quiet but dysregulated, say withdrawn or shut down in a "freeze" reaction, or consumed internally by anxiety or obsessive thoughts. During the worst of Oranguette's autistic burnout, I believe she was in a quiet dysregulated state for the vast majority of her waking hours. It would have been a far better use of time and energy to have focused exclusively on co-regulation, rather than rushing to expectations of compliance (namely, school attendance) which could not be met.

All Behaviour is Communication

This mantra is true of all behaviour, but is usually said in regards to "undesirable" behaviours. Most of us do not spend too much time wondering what a child who is happily engaged in some activity or another is trying to communicate, but that too is communication of a sort, saying that the child's needs are met and they are well regulated.

This phrase is more useful when applied to troubling behaviours, say meltdowns or running away from a situation beyond a child's capacity to handle. For me, it has been its most useful when trying to untangle the mess of internalizing behaviours that Oranguette has struggled with, from self harm to eating disorders.

I am sure that there are many factors underlying these internalizing behaviours, but one aspect that did not initially get the attention it warranted is that these are also a means of communication, especially in light of the alexithymia and selective mutism that robbed Oranguette of other means of communication.

The conventional advice given to us especially in regards to self harm was to ignore these "attention seeking" and "controlling" actions. Yet what do reasonable people do when they have something important to say but are not heard or ignored? They try again, and they talk louder. Or, they cut more, and they cut deeper. How awful the conventional advice is here.

Look for the Unmet Need

So what, then, were these "undesirable behaviors" trying to communicate? This third mantra gets to the heart of what is being communicated most often, namely, unmet needs.

These could be needs around sensory issues; physical issues; social needs around friendships, belonging, and connection; needs for emotional validation; unmet support needs at school. The list is long and the detective work is ongoing. Once behaviour is looked at as communication rather than some sort of moral failing, this becomes a fascinating puzzle to pick apart, and problems slowly start becoming solvable. Now, as a parent, I will never be that dispassionate, but it was a necessary shift in mindset in order to provide meaningful help to Oranguette.

My job as a parent is to help my child get their needs met, not to deny their needs. I am baffled as to why minimizing or invalidating a child's needs, especially for neurodiverse children with mental health struggles, seems to have become the accepted approach instead. I hope the tide is starting to turn.

When the Flower Doesn't Bloom, You Fix the Environment in Which it Grows, Not the Flower

For me, this might be the defining motto of ND-affirmation. The quote has been attributed to Alexander den Heijer, but it sounds like it could be a traditional folk saying.

Neuroatypical folks are not broken. Like anyone, we just need the right environment in which to flourish. Our neuroatypicality does, however, define the specifics of that environment in a world that is often not designed for us. We will never be the dandelions that thrive anywhere and everywhere, but in the right surroundings, we will bloom.

Parenting is hard at the best of times, and parenting a neurodiverse child is even harder. Almost every single insight I blog about occurred because I did the opposite thing. This path has been littered with endless mistakes and course corrections, and I know there will be many more. That's why I'm fond of these little sayings. They keep me pointed in the right direction.