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Experiencing the Health & Allied Health Systems as a Pregnant, Autistic ADHDer

Exploring Neurodiversity Podcast – Episode 23

by Adina Levy

Play. Learn. Chat - Exploring Neurodiversity Podcast Logo

This episode is a very personal one where I’m going to share my experiences and insights as an autistic ADHDer who was pregnant at the time of recording, with a particular focus on the positives and negatives that I’ve experienced throughout the pregnancy in terms of how I’ve been supported (or not…) through the medical system.

I also share some points about where I think things need to improve in all of these different medical and allied health settings, to be more accessible and neurodivergent-friendly.

 

LINKS:

Lap desk – Officeworks & Amazon
My Streamline and Automate Your Private Practice Webinar – https://courses.playlearnchat.com/offers/p2PBzwLq/checkout
Annie Crowe’s upcoming book ‘NeuroAccessibility: How to Build Accessible Healthcare for Neurodivergent People’ – https://www.amazon.com.au/NeuroAccessibility-Accessible-Healthcare-Neurodivergent-People-ebook/dp/B0BZL7HGKH

 

 

Transcript:

 

Welcome to the Exploring Neurodiversity Podcast. I’m Adina Levy from Play. Learn. Chat. I’m a neurodivergent speech therapist. And I’m obsessed with creating a world when neurodiversity is understood, embraced, supported, and celebrated. Join me as we have conversations about autistic, ADHD, neurodivergent experiences, and I share how you can support neurodivergent children in your world.
Let’s all work together to make change where change is needed so that the world can be a more friendly place for neurodivergent people and for everyone.
This episode is a very personal one where I’m going to share my experiences and insights as an autistic ADHDer who is currently pregnant at the time of recording, with a particular focus on the positives and negatives that I’ve experienced throughout the pregnancy in terms of how I’ve been supported or not through the medical system.
So, for context, I’m recording this at the start of September 2023, which is the final days of my pregnancy with my second child. By the time this episode comes out, I will have a seven week old baby perhaps?
So I’ve had a very medicalised, challenging pregnancy, with aspects of my physical and mental health.
And I’ve had 80 different appointments, that’s 8 0, different appointments from January to September. throughout this pregnancy,
I will pause to acknowledge some of the privileges that come with this story. So A, I have built myself a very flexible business where it’s essentially just me with a couple of extra helpers.
I’ve spent the last few years building more and more flexibility into my schedule.
And this year I absolutely needed that and I really dialled it up. So by the end of my pregnancy I’ve had about a month, or perhaps even two months, of very little time commitments through the week where I actually had to do something at a specific time. That hasn’t come easily.
This has been a business building process of about, I think, nine years now? So I’m very proud of having put in the legwork previously to get to this point, and I absolutely needed it at this year so that I could continue to work, with more flexibility, in more alignment with my needs, my energy, and my physical and mental and emotional capacity, but yeah, it’s not been easy to get here.
I am also incredibly grateful overall for the generally incredible public health system that we have here in Australia.
I’m going to start with the negatives. I’m going to start with what has been incredibly challenging, specifically with a focus on how I’ve experienced the health and allied health systems as a neurodivergent person.
Some of the challenges that I share might be quite global and anyone would find them challenging. And I’m certainly not here to take away from anyone’s experience. If you’re, for example, not neurodivergent and you’re still struggling to cope with the medical system, that is incredibly valid too. My hope through this episode is to share some of my perspectives, so that if you as a listener work within these systems yourself, you can consider some changes that you might be able to make, to best support neurodivergent clients or patients.
And for anyone, if you find yourself as a patient within these worlds, you might hopefully find this beneficial to give you some ideas about how you can get a positive outcome from the support that you get as well.
So we’ll kick off with some negatives, things that have not been very good, so that we can land on positives, because I am generally an optimist and I do like to end on a sparkly note, where we can acknowledge what’s been really good and keep a focus on trying to do more of that and offer more of that for the people that we support.
First of all, I have found the public health system and maternity care incredibly confusing.
As an allied health professional myself, while I haven’t worked directly in hospitals or in the public systems, I would have thought that I would be fairly well placed to kind of understand each of the roles, each of the clinics, all the different levels of training, and how everybody works together. But that’s not been the case. What I’ve found is it’s just been incredibly confusing for me to try and navigate the different aspects of prenatal care.
I would have loved something like a map or a diagram of the different departments or the different maternity pathways, perhaps the hierarchies of medical practitioners, who works within which teams and who interacts with which other professionals, things like that.
So the result of this challenge is I’ve just felt like a bit of an amorphous floating blob moving between different departments and being told to make various appointments with different people without really understanding how it all fits together. Confusion is the overriding emotion there.
One of the other biggest challenges that I’ve faced throughout this whole pregnancy is the actual time impact of all of these 80 different appointments that I’ve had over 9 months.
As I’ve already mentioned, I’ve created a very flexible work environment for myself. But there have absolutely been days where I’ve been waiting to see various medical practitioners at the hospital, and then had to race home to eat food in all of three minutes so I wasn’t feeling hangry so I could then go hop on a webinar that I was running and try to keep a sense of calm and focus. That’s been really, really hard. What’s also been very hard is over my four work days, there’ve been weeks where I’ve had appointments on three days, and that doesn’t leave me much time to actually get my focused work done and do the things that I really aim to do and want to do and love to do in my work.
It took me to about six months into the year to recognise that I really am only working very part time because of the hours available to me in and around all these other appointments. And yes, of course, I bring my laptop to the waiting rooms, but it’s still a very different thing to be trying to work in a often noisy, distracting waiting room and you’re not quite sure how many minutes you’ve got left until you’re going to get called up to go into your appointment.
So I felt very disjointed and distracted a lot of the year. Which has led me to do a lot of shoulds. So this is more an internal one for myself, but something that I’ve struggled with is really recognising my own limitations. So I’ve come to the end of a week of work many, many times and felt like I just haven’t done enough. When truly I’ve worked as much as I possibly could have within the possible hours and more that I had for work. But my actual time and chunks of work time have been incredibly limited.
So it’s been a journey of trying to give myself some grace a dose of reality around what I actually could achieve. This is very much tied up with internalised ableism. Which is something I’m a total champion at experiencing and I would love to put it aside. But my reality is that it is very hard for me to face up to the challenges that I’ve experienced through this pregnancy, and more generally through my life as a neurodivergent person.
Being able to accept that I don’t have full time work capacity where my brain is on all day. Even at times begrudging the fact that I had to do all these appointments, even though the appointments were generally quite helpful for me.
On a physical note, I do want to say there has been one absolute game changing accommodation that I put in place for myself. which I thought about accessing, and it took me about two weeks to finally decide that I was deserving of this support. And what I’m talking about is a $25 lap desk, which I got at Officeworks. If you are a person who, for whatever reason, often needs to or wants to be horizontal or horizontal ish while you work, so perhaps you find yourself in bed trying to use your laptop and do some work, or on the couch trying to focus and do work. I 100% recommend getting yourself a lap desk. I know they’re on Amazon as well, wherever you are in the world, I’m sure you can get one. They are not very expensive.
The one I have just sort of has these little legs that fold out, and the part that the laptop sits on can kind of be lifted up a little bit.
Now, this has been the most game changing thing. I’ve had a lot of physical struggles and it’s been a long time since I could comfortably sit on a regular chair for anything more than a couple of minutes. So for the last few months, I’ve mostly been working from the couch.
Which is pretty much the only space where I’m actually comfortable these days.
So the negative here, as positive as this lap desk has been for myself, the negative is that I denied myself that support. I thought about it, I researched it, I knew how cheap it was, I knew how accessible it was. I kind of had a hunch how much it would help me, and yet that wild voice of internalised ableism sat in my head saying I shouldn’t need that.
I should be able to just work at my desk.
I’m just going to pause here for a moment and I want you to recognise if you have that voice inside you. Whether you’re neurodivergent or not, if you are denying yourself something that you know will help you, maybe just go and do the thing that will help you. Strong recommendation to do so. You probably won’t look back with regret, except maybe the regret of not having done it earlier.
So, there’s the internalised ableism bit. Okay.
Heading back into the actual hospital system. Some of the other systemic problems that I see, that I’ve experienced, and that just lead to really challenging patient outcomes relate back to how disjointed their system is.
This one hospital seems to have two primary ways of note taking and keeping track of patient information. There’s the paper files and the digital files. And the different little silos within the hospital seemed to be using one or the other, or both, or perhaps their own system.
And what that led to is me having to tell and retell my story and my updates many different times to the various different professionals that I saw. Which can be a huge cognitive and emotional tax on any patient.
I also am a person who loves systems and I teach about systems. P. S. I have a webinar called Streamline and Automate Your Private Practice. So this is something I’m very passionate about and I will link to that webinar on the show notes so you can check that out. Systems is a real passion of mine and the flip side is I get incredibly frustrated when I see a system that is breaking down or that is completely inefficient and ineffective. So really important key information about my care has been missed across disciplines and I’ve had to reiterate it and advocate for myself. And I don’t even know how much information has been missed that I haven’t noticed or remembered to fill in the blanks for somebody.
I know that I’m not the only one experiencing this, and I’m sure that there are many patients who are falling between the gaps, and have disjointed medical care because of this.
By far the biggest challenge to me throughout this whole journey has been the few professionals that I’ve seen who act as if they are the expert in you. Now I fully acknowledge that a doctor is the expert in their specific field, but they are not the expert in you, the patient.
I know there’s a lot of allied health professionals who are listening, so if that’s you, I want you to just calibrate where you sit and how you understand your own expertise.
You probably are an expert in your particular allied health field. You have a lot of information, but you can never be the expert in an individual if you’re not that individual.
And so the vast majority of people that I’ve worked with throughout the year do not fit the bill, but there’s certainly been a couple who I’m thinking about right now. I will not name names, and I will not name roles, but a couple of medical professionals who have outright dismissed my experience, my preference, my thoughts, and my needs, and essentially tried to steamroll me by presenting what is best practice. When you put a whole bunch of thousands of women together, you get some data and you get some good information about on a population level, what might be best for many people and many pregnancies, and many babies. These particular professionals absolutely dismissed my own story and insight, and forgot to notice that they were not the expert in the person sitting in front of them, they’re the expert in the field in general.
So there were times where I felt like I was going into do battle, that was literally the terminology that I used. Which is not a very helpful way of approaching a complex medical situation. And when I knew that one of these appointments was coming up, I would be losing sleep for days. I would be writing notes, I’d be waking up in the middle of the night, planning what I was going to say, or rehearsing it in my head. The amount of anxiety that I’ve experienced just in anticipation of some of these more tricky appointments, has been, well, has been a lot.
Yeah, so, okay, there’s been a lot of challenges.
Let’s put all of that to the side and acknowledge that thankfully the majority of the medical and allied health professionals that I’ve worked with this year have been good or excellent.
And what has made those relationships and that support so helpful have been those moments where I’ve been treated with kindness, I’ve been believed, my perspective has been listened to, and not just in a shallow way but, where the professional that I’ve been working with has actually truly taken time and effort to think about me, my case, and what I was bringing to them, my concerns, my needs.
You don’t have to just do that for neurodivergent clients and patients, we should be doing that for every single person that we work with.
There’s an extra layer of challenge. that I think I’ve experienced as an autistic ADHDer in all of this is that I can get very dysregulated. While I’m an allied health professional myself, and I can generally speak pretty well, I experience a lot of social anxiety.
And if I feel like I need to self advocate, it can take an incredible amount of mental and emotional energy for me to build up my own capacity to even do that. And sometimes I don’t do it, and I know I should, and I teach it, and then I live it, and then I decide not to say the thing, or ask for the thing, even though I know I should have. It’s a confusing time in my brain sometimes.
And there’s even a lot of self judgment that goes along with that. I teach about self advocacy. Why on earth can I not do it reliably? Well, it’s really, really hard. So let’s please keep that in mind if we’re encouraging kids to self advocate. What a big ask it can be, even for a professional grown up like myself, who thinks about this stuff all the time.
The way that various professionals have taken on the information that I’m an Autistic ADHDer, has been really interesting to watch. In many cases. People just go, uh huh, yes, yes, and they note it down, or it’s in my file. And then I kind of know that they have no idea what to do with that information. And this is a really big issue. We’re talking about the maternity care system. So I will talk about autistic females and people assigned female at birth.
The fact that many of the allied health and health professionals that I’ve seen who work with females all the time, do not understand a, let’s say, more typical female presentation of autism. My particular flavour being quite high masking, quite chatty, quite people pleasing, it’s really upsetting to know how little people in these systems do know about autism and ADHD in women.
ADHD I think is more understood and I feel like more people have had no idea what to do with my disclosure that I’m autistic. Now what I would hope to see and what some have done, which has been fabulous is actually ask me more about it rather than just sort of write it down and go I don’t know what to do with that information and move on.
Actually ask about it. about my experience and my needs.
So a few wonderful practitioners have done that, and others who absolutely should know better have not taken into account the fact that I’m autistic, the fact that I’m neurodivergent, or inquired further about what that means for my care.
There’s a huge space for advocacy here and I know that my buddy Annie Crowe is going to make some big waves here, so I will be joining you on this Annie.
She’s writing a book about this and I’ll link in the show notes.
So really just that theme of listening to your clients or patients is just… Essential. It’s a skill that I don’t think is actually taught and practised and honoured enough in our health and allied health disciplines. It’s pretty patchy and it really depends on the contexts where you found yourself in and who your teachers were.
I have to give a big shout out to telehealth. One of the factors that’s made my many appointments feel more okay and less impactful on my life is having some of them either telehealth, so either video call or phone calls. In fact, some of my support has even been via emails. All of these flexible ways of delivering care have been incredibly beneficial, and greatly reduced the amount of sensory overwhelm and effort and energy that it would have taken, and reduce the need for me to actually turn up at the hospital, sit in their waiting room with their notably comfortable waiting chairs, so that is a positive.
But essentially being able to have a range of different support options. Ideally ones that can be individualised to what the person needs as well as what fits the actual service and the type of appointment need as well. But having flexibility there, has just been so, so, so, so helpful.
And the last thing that I’ll note that’s been incredibly helpful is having predictable schedules. A trait that I have very strongly, is I love to know what’s coming up next. It really helps reduce my anxiety, I like to look ahead in my calendar and see when things are happening.
So I can plan around them and I can mentally prepare for all kinds of different things. Sometimes maybe I over plan and it may be counter helpful, but that’s something to explore on another day. Generally having information about what’s coming up next and what to expect on certain dates helps me and so having predictable appointment schedules When that has been possible and booking things in well in advance has been incredibly helpful for me.
So all of that is a big dump of my thoughts and experiences about how I’ve been going through the medical system and Allied Health Supports. It’s been a ride.
Both internally in my head and just navigating this world of many different disciplines and appointments and systems.
One of the things that I’ve done to support myself into the next phase, preparing for the birth.
I’ve written a one page summary. At the top it says about me and it’s got my name. It’s got four lines that summarise my, let’s say, more medicalised version of my various diagnoses and identities.
And then I’ve got five points about my support needs and what helps. I’ve included some visuals, which I’ve got from Canva, so thank you Canva, for making it so accessible to get and use images, that I hope will help many hospital staff that I’m going to encounter in the coming days, to understand me and what I need and how they can help.
So, I won’t share this, I can’t document exactly because it is quite private to me, but I will share four of the five headings. So I’ve got a subheading about information. Explaining that it really helps me feel calmer and less anxious when I have information about what’s coming up next. And to offer written information as much as possible.
I’ve got a point about processing time. Needing low pressure time away from social gaze, let’s say, to think over decisions. Not all of this will be possible within the context of having a baby, but I feel it’s still really important to point out these supports and needs.
I’ve got a section about my sensory needs, particularly talking about auditory and tactile.
And I’ve mentioned both where the challenges might arise and what supports might help me. And that I’m very aware of my sensory needs.
I’ve got a section on my support people as well.
So, I’ve printed off a number of these handouts. And it’s my hope that I’m able to actually share these with the key medical staff and professionals who I meet at the hospital in the coming days.
But I’m a bit worried about this because the system broadly is not set up for hearing patient voices. I quite literally had somebody tell me there’s nowhere that this document can end up in my official file. Because my official file is full of medico legal documents, and there’s just no place for the patient perspective.
Which enrages me and frustrates me, not just for myself, but for every single person going through this system. To me this is just such a fundamental piece of the puzzle. I think my paper medical file is about four centimetres thick, and apparently there’s not a space for my one pager to go in there, where I advocate for my needs and clearly lay out my own perspectives.
We’ve got a lot of work to do, friends.
If you’re in the medical system, I hope that you can help make some change.
Here’s a bit of a summary of where I think things need to improve in all of these different medical and allied health settings.
Increasing understanding about non classical presentations of autism would be a great place to start.
Ensuring that every medical and allied health professional across the board in every setting takes into account patient perspectives. And not just as a tick-a-box exercise, but genuinely formulates the care around a patient’s perspective.
And, you know, it starts with even just having a place where a patient can share their own one pager if they’ve gone to the effort of creating what I think is quite a beautiful and well thought out page.
Sharing information with patients in different ways that’s really easily accessible. So, handouts, pieces of paper, clear websites that actually have helpful information.
Speaking it aloud. Helping a patient write notes or writing notes with them if that’s going to support them, that are more personalised as well.
Offering flexible ways of accessing support and getting really innovative about what that might look like. Recognising that it can take a huge physical and emotional and cognitive and executive function toll for somebody to turn up physically to an appointment at a certain location. And that location itself can provide its own sensory challenges and social challenges and many other things too.
So, offering flexible ways of support that include video calls, phone calls, emails, text or SMS support. This is the way to offer inclusive personalised care that actually will fit what each neurodivergent client or patient needs.
Other really key things is just tell people what to expect. Tell people how the system works. Do not assume that anyone has any level of understanding. Just ask them. Ask them what they need to know, ask them what they know, or explain.
So, let’s see where the future of medical and allied healthcare goes. I’m dreaming big.
I could go on and on and on and on about this, but as a heavily pregnant lady, I am feeling a little bit sore and a little bit tired, so I am going to wrap this up. I truly hope that this insight into my experiences of the medical and allied health systems has been useful for you. If you’re a neurodivergent person, if you’re in the medical or allied health sector, if you’re simply a human who might be able to be an extra voice leading to bigger change over time, there are glimmers of hope and there are some wonderful initiatives out there, so I just hope that these expand and extend over time, so that everyone can get supportive, personalised care.
Thank you for listening and joining me here.
If you found this episode helpful, please share it with a friend and join me on Instagram and Facebook. I’m @play.learn.chat
that’s Play.Learn.Chat, you’ll find all the links that we discussed in the show notes.
I hope you have a wonderful day.

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