Four Potentially Unpopular Opinions
Buckle up!
Buckle up, grab a cup of tea (or maybe some popcorn), I’m climbing on my soap box.
Here are the four headlines but hear me out as I have a go at unpacking each one below:
1. Explore diagnoses, don’t go and ‘get’ one.
2. There is no silver bullet, no ‘fixing’ to do, no one size of anything that fits everyone.
3. Parenting is not for everyone.
4. Focus on what unique support is needed, rather than the neurotype.
Read on to find out more.
1. Explore diagnoses, don’t go and ‘get’ one
I have neuro-curious clients come to me convinced they have ADHD but our session and later diagnosis confirms autism, or both, with autism traits dominant. It’s an odd one because I advocate that we neurodivergent people know ourselves better than any ‘expert’ but there’s a proviso, we need access to information and tools to apply it ourselves and our lives to be able to land on what is going on for us. And we need to be open to explore without attachment to outcome.
I think the ‘outsider’ or ‘not fitting in’ feeling so many folks experience growing up makes any neurodivergent content feel like a good fit. And bless ‘em, there is a sheet-tonne of social media content that confuses autistic traits from the DSM 5 with other neurodivergence. Especially from folks new to neurodivergent perspectives. It gets messy out there!
We only know what we know.
Going into the research and assessment process with an open mind and actively exploring will serve up the best results for working out a person’s strengths and why they struggle so they know what kind of life they need to create to survive, hopefully thrive.
I keep seeing posts from folks asking where they can go for the fastest cheapest autism or ADHD diagnosis in their area. I’m not alone in seeing these. People without ND lived experience and/or not in neurodivergent communities get the impression that diagnoses are handed out to the highest bidder. We all know this isn’t true but Joe Bloggs does not. We also know that there are common misconceptions about the increased diagnostic rates perpetuated by the media.
This is a weird one because I am fierce about self-identification as valid. I am also fierce about thorough exploration of our bodies and brains with due diligence with lived experience, being vital to the sturdy foundation of any identification.
2. There is no silver bullet, no one size of anything that fits everyone
Firstly, please run for the hills if anyone offers ‘cures’ or ‘fixes’ for your neurodivergence. We are just part of the natural range of human neurodiversity, there is nothing inherent in us to heal from or fix. It’s our culture and society that needs to learn and be more inclusive.
Like any human, we CAN optimise our wellbeing. We do this by creating a life where we get good sleep, are eating as well as we can, are moving our bodies in ways that we need, have robust nervous system care in place, have people around us that have us feeling good and have a sense of purpose in life.
Being in our Zones of Wellbeing means we can work and play at our best capacity, sustainably. If we stay within our Zones of Wellbeing and have a reflective practice of self awareness so we can catch ourselves when we stray into more dysregulation, irritability and start to see red flags of burnout wave at us.
Wellbeing is not a static state. Nothing in nature is.
In connection calls with potential clients or first sessions, clients newly self-identified or diagnosed neurodivergent want to know what the silver bullet hacks, meds, tools and practices that will allow them to work full time, have a Hallmark social life, play sports, do hobbies, volunteer, parent - do all the things. They have the explanation about WHY they’ve been struggling and are in ‘fix-it mode.’ These folks have zero plans to have this pesky new diagnosis get in the way of life, or to change anything, but are looking to ADD the things that are going to magically make things better.
This one is in the Very Unpopular category but there is no silver bullet or Best Neurodivergent Life supplement. We have to put the work in to explore our sensory profile, neurodivergent traits, develop a healthy neurodivergent identity, get to know our strengths, trial and tweak what nervous system care we need, connect into neurodivergent-created content & communities and use energy accounting to simplify life according to fluctuating capacities. That is really the only way forward without crashing into burnout on repeat.
Basically, question everything and give ourselves permission to live on our own unique terms. On repeat. There isn’t any one-size-fits all formula we can follow. No magic medicine. Beware the wellbeing courses and programmes and workshops that are not neurodivergent-informed and affirming too.
We are all different in how neuro-traits look in our lives, what supports and accommodations we need and what helps us to stay in our Zones of Wellbeing. Annoyingly too, neurodivergent traits and challenges and strengths wax and wane, regress and can completely disappear- these things are not consistent and are affected by stress/health/age/environment/demand load through life.
3. Parenting is not for everyone
Not in the way we do it in our isolated siloed households, outside of villages and intentional communities. It is a choice for everyone, but it is just that, a choice. Hopefully an informed one.
We humans do this weird thing where we assume other autistics, ADHDers or combo-queen AuDHDers have the same or similar lived experiences.
This is very apparent in the assumptions in comments on social media posts in some neurodivergent spaces, replying to thoughtful young neurodivergents asking for others' thoughts on having children.
‘You’ll never regret it.’
‘I love everything about being a mum, you will too!’
‘I’m ADHD and my kid is neurotypical, you’ll be fine.’
I bet those commenters are coming from a place of privilege. If a person is disabled, we have limited spoons. Parenting takes a large amount of spoons. Neurodivergence races through family trees so the likelihood of having a kiddo with support needs, intensity and of the non-sleeping variety, are high. What happens if your relationship ends and you’re left solo parenting? Or have no wider family or community support? How would you deal with the chronic stress of being financially disadvantaged or having no financial buffer? Or your kiddo is unable to be in preschool or school so you can’t work? I know plenty of neurodivergent mamas who have had to put their needs on hold for a very long time, because that is what parenting their particular flavour of kid required of them. AND is a recipe for burnout.
Some neurodivergent folks will never work full time, our young people may need a longer prep time being home based with family/carer support before living independently. Institutionalised learning doesn’t work for many neurodivergent youngsters, are you ready for homeschooling or unschooling?
Parenting neurodivergent beings can be intense. The sensory overload of some kids can take all an autistic parent’s spoons. It might be that you don’t have the cognitive and emotional capacity for parenting AND the amazing career you thought was yours. We open our arms to whoever comes to us as parents and we celebrate who they are, who they are growing into and do our best to support them along the way. But we never know what is coming! We never know what life will bring for us, what choices health issues might dictate or what sacrifices need to be made. We need the real stories and a range of lived experience wisdom so we can get supports and practices in place to support us and our families IF we choose the parenting path.
All I know is that there ARE sacrifices. More for some than others. Parenting seems to be a series of surrender from conception on. And in the life priorities list, it has to come first.
Parenting is not for everyone. And it sure as sheets has to look different for us all!
4. Focus on unique supports needed, not the neurotype
I’m seeing a bit of this in the mainstream school system here in Tamaki Makaurau (Auckland). Many Learning Support Coordinators and SENCO’s know there are barriers to accessing neurodivergent and educational assessment processes, with some focussing on working with rangatahi and whanau to meet student needs rather than waiting for reports to confirm what they already know.
Getting caught up on diagnoses can mean we’re not curious about the whole person. We can lapse into generalisations about that neurotype. Fall prey to stereotypes.
We each have a unique neuro-profile, a blend of neurodivergent traits, challenges and strengths. It’s not enough to know the top-line of ‘autistic’ or ‘ADHDer’. Does the person have demand avoidant traits? Struggle with fatigue? How many ‘usable hours’ do they have a day on average? Are they monotropic? HOW monotropic?! Do they have any chronic health issues? Many commonly co-occur with the hyper-connected systems of neurodivergence, like hypermobility and the Ehlers Danlos Syndromes, fibromyalgia, POTS/dysautonomia, MCAS (Mast Cell Activation Syndrome), epilepsy / seizure disorders. All of these involve brain fog, sometimes to a debilitating extent, especially in flares. If there’s a pile up of diagnoses, the fatigue and brain fog can be exponential. Does the person identify with the diagnosis/diagnoses on their reports? Often teens will not. For whatever reason. Find the terminology that works for them so they can be open to accepting accommodations.
This is all important to know if you’re supporting neurodivergent folks, whether you’re in education, health, a support worker, service provider or social worker, employer, family or friend.
Diagnoses or self-identification gives me clues but hearing about a person’s struggles and dreams, strengths and what lights them up, their quirks and confusion tells me so much more than hearing what letters come after their name. Needs and supports we can work out meeting now, assessments for diagnoses can take months or even years. Don’t get me started on the financial, cultural and other barriers to accessing appropriate assessments. Besides, diagnoses don’t automatically unlock support. It’s not uncommon for it to take years to get the minimum support and accommodation in place.
I’m much more interested in meeting needs and getting support in place than diagnoses.
So, there you have it. A top-of-mind brain dump of four potentially unpopular opinions. I’ll put my soapbox away now. Thanks for hearing me out!
Let me know what you think.
Don’t forget that the Wild of Brain audiobook is rolling out weekly for paid subscribers. Sundays at 7pm NZ time! I’m excited to be offering the book in audio, making it more accessible.
Chapter Five: Diagnosis Number Two, The darkened room explained, is live this Sunday 15th June.
To find out more about the Wild of Brain book, you can start with:
Wild of Brain audiobook introduction substack HERE.
Or jump straight in HERE, with the LANDING PAGE of Wild of Brain audiobook series and the free-to-access first instalment of the book, the Dedication, About Section and Introduction. I update the Table of Contents on the landing page with the link to each chapter as it goes live.
Related links to learn from, made me think or that lit me up:
Illustration by Eliza Fricker aka Missing the Mark, from the book, A Different Way to Learn.
And another Eliza illustration - a comment on how accommodations and supports get taken away because the person is ‘doing better’ BUT this is BECAUSE of there IS support in place. Gah!
Autism Spectrum News piece by Angela Chapes on why she decided not to have child/ren.
Purple Ella on being autistic and a mama.
Shayonee, AuDHD, on why she is childfree.
ReframingAutism on Parenting an Autistic Child.
An Autistic Guide, on parenting PDAers
NeuroWild on why share child’s diagnosis with them
Our Wild of Brain dose of wholesome comes via the fabulous Jen Peer Rich this time. A wee reminder for us all.
Go well y’all, chase that joy, hunt some comfort, drink deeply of whatever deliciousness crosses your path. You deserve it.
Ax
