Conditions I work with, understand and advocate for…
Because most of the time, it’s not just autism.
let me explain…
When I started as a support coordinator, I decided I would focus on working only with adults and children who were NDIS participants after receiving their autism diagnosis.
Over time, I realised that the assessments and reports that I was reading had common themes… common diagnosis’ and common storylines.
Gradually, I also realised that a lot of the things I was reading about resonated with me as well.
Attention Deficit Hyperactive disorder (ADHD)
Because it’s not just a cute “oooo, squirrel” thing to live with - is it?
It’s more than that - it’s time blindness to the point of impacting your life, it’s disorganised and organised chaos, executive functioning barriers… I want to do the thing, I just cannot do the thing…
It’s the horrendous connection between ADHD and being blessed with a uterus, at whatever cycle-stage you may be at as an AFAB human.
It’s the echolalia, the misophonia, the hyper fixations, the addictions, the impulses - it’s not all fun and games. It can be life-ruining without the right accommodations and support.
chronic fatigue syndrome / myalgic encephalomyelitis
It’s not just ‘being tired’ - it’s relentless. It’s sleeping and waking up exhausted, it’s struggling to sleep despite being so tired.
It’s the chronic pain and inflammation, the GI issues. It’s understanding post-exertional malaise, and being mindful of when to conserve your energy, and accommodate yourself for those times you felt good, so you did a bit more than you’re used to and your body says “nope” for the next week or so.
But I also understand the link between trauma and ME/CFS. I understand the Complex Trauma, and the PTSD. I understand that living in hypervigilance for years means your central nervous system is also not functioning the way it should. That you’re stuck in a parasympathetic state, and your body is doing the absolute bare minimum.
I also understand how being late diagnosed contributes to this, and how children are having to be ‘unschooled’ and how home schooling is so prevalent because the neurodivergent brain is not accommodated in most educational settings, and how this trauma can shape therapy supports.
eds / heds - (hypermobile) ehlers danlos syndrome
So, you’re a bit bendy? Or maybe you’re the complete opposite? Everything’s super tight and inflamed. You regularly dislocate limbs, or have subluxations?
You find that you are prone to pulling muscles into spasm. You wake up in pain, you sleep with pain - everything just hurts. Everything is rigid and stiff but also, super bendy (in some cases). Your gums may be receding, your skin super soft, your SI joints and your hips never seem to be in the right spot? Rolling your ankles constantly, widespread joint pain…
For everything EDS/hEDS: https://www.ehlers-danlos.com/about-us/
POTS - postural orthostatic tachycardia syndrome / dysautonomia
The things your body is meant to just do automatically… never heard of her.
You watch your smart watch and see your heart rate jump by 30+ bpm when you stand up. You cannot regulate your body temp. Your hands, your feet are numb, they cramp, blood is pooling. Had a big meal and suddenly need to lie down before you pass out?
Random tachycardia? Sure, why not. You were only just sitting doing nothing. Or you’re standing for barely a minute and need to lean or sit. Floor sits are 10/10.
Adrenaline dumps, heat makes your symptoms worse, you’re known for having salt packets in your possession at all times…
Sound familiar? Hmm, bestie go have a read here.
mcas - mast cell activation syndrome
When your body reacts to random things - food, smells, the sun?! But even then, somedays you don’t react at all? What about some reactive hypoglycemia? Sure, sign me up (not really though, 0/10 stars)
I received this diagnosis in October 2024, and suddenly, through a vast number of treatments, I no longer have the reflux that I have had for near a decade… wild.
Unfortunately, this one isn’t a condition NDIS will recognise, but I still understand it just the same, and the way it plays into other conditions.
pmdd - premenstrual dysphoric disorder
If you don’t understand the link between histamines and oestrogen, I encourage you to go down this rabbit hole right now.
Some great resources:
But do you find yourself completely different after you have ovulated? Luteal phase kicking your ass? It’s not just PMS, it’s like a complete shift in persona - you’re depressed, like really depressed… you’re tired, you might have flare ups of your other symptoms and your chronic pain and illness? You don’t want to do anything, see anyone, you actually hate everyone - even the people you adore.
Then your period comes and you’re back to what is considered ‘normal’?
Yeah, it’s a fun time isn’t it… (sarcasm). But I see you. There are finally studies being done now connecting neurodivergent brains with PMDD. It is estimated that up to 92% of Autistic and 46% of ADHD women and gender diverse people experience PMDD.
Other psychosocial disabilities/diagnoses
Complex PTSD, PTSD, Obsessive Compulsive Disorder, Generalised Anxiety Disorder, Major Depressive Disorder, Social Anxiety Disorder…
The word ‘disorder’ is just… blergh. Though some days, they do be disorder-ing… and I get it.
I pride myself on being trauma-informed. While unfortunate, my own lived experience has meant that I, first hand, understand the struggle with psychosocial disability. More so, the additional layer that neurodivergence and chronic illness adds.
It’s a sh*t fight - I see you.
I know you don’t want to have to sit there and try to explain how your Central Nervous System is a hot mess and you cannot separate the symptoms between your autism, ADHD, your trauma, your dysautonomia and how it’s caused a chronic illness flare and inflammation that’s completely taken over your body…
So, let me.
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DISCLAIMER: I am not a medical professional, this is NOT diagnostic criteria or information - I am speaking on personal experience, personal testing / assessments and diagnosis, and speaking on the common conditions that I read about in the reports of those that I support.
Please seek advice and support from your allied health professionals before assuming any type of diagnosis.