How Can We Take Better Care of Neurodiverse Women? These 3 Interviews Shed Some Light.

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How Can We Take Better Care of Neurodiverse Women_

How can we take better care of neurodiverse women? That's the question we're trying to shed some light on today.


🎧 Rather listen than read this post? This post is based off of Episode 13 of the Neurodiverging Podcast! Listen on Apple Podcasts Google Podcasts | Spotify


Misdiagnosis after misdiagnosis. Disbelief from doctors and mental health professionals after you explain your symptoms. Being shuffled from one doctor to the next with no help in sight. Giving all your energy to taking care of your mother or your child, so that there is nothing left to take care of yourself.

Millions of neurodiverse women struggle everyday to get support from their healthcare and mental health professionals that actually improves their lives. So many of us are not getting our health needs met, and are falling into more anxiety and depression because of it. What could society do better to help us?

Today, I am honored to present interviews with Lauren Melissa @autienelle, Dominica @the_ADHD_dynosaur, and Meg @arfidawareness to discuss their experiences getting help from medical and mental health systems for themselves and their families, what worked and what was a disaster, and what could be done to help neurodiverse people.

mental health neurodiverse women

 


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How Can We Take Better Care of Neurodiverse Women?

By Danielle Sullivan

Introduction to Neurodiverging

Hello, friends, and welcome to Neurodiverging! Thank you so much for tuning in with me today. If you’re new here, I’m Danielle, and I’m the autistic parent of one autistic child and one ADHD child, the partner of an ADHD man, and, September update, virtual schooling is exhausting. 

Neurodiverging is dedicated to helping neurodiverse folks find the resources they need to live better lives as individuals, and to further disability awareness and social justice efforts to improve all of our lives as part of the larger world community. 

If you're interested in learning more, you can:

  • hit the subscribe button to make sure you are notified when there’s a new episode!
  • check Neurodiverging out on Patreon? I run the podcast and blog by myself, so come be one of my first patrons and support this podcast

This episode and blog post are generously sponsored by I Ally. I Ally is a website and app for family caregivers, and provides personalized access to mental health providers, financial coaching and education, legal counsel, and a digitized matching service for clinical trials. Join for free today!


Introduction to Topic: Neurodiverse Women Struggle to Get Support for Their Medical and Mental Health Conditions

Today, I want to discuss a common concern for neurodiverse women, which is that almost all of us have more than just one health difference going on. We have a lot of other co occuring conditions that can be present along with these neurotypes. This is especially concerning for women with autism, ADHD, and other neurodivergences, for two reasons:

Autistic and ADHD Women Are at Higher Risk of Health Issues

First, we know that autistic women and ADHD women are at a higher risk of a variety of health issues than autistic and ADHD men are, though we don’t yet understand why. 

One study, published just this month (Sept 2020), indicated that, “autistic individuals are, on average, 1.5 to 4.3 times as likely to have a wide variety of health conditions, including low blood pressure, arrhythmias, asthma, and prediabetes.”

And autistic women “are 4.3 times more likely to have prediabetes than non-autistic [women]. [T]he influence of smoking, alcohol use, and BMI do not account for the heightened risk of heart, lung, and diabetic conditions seen among autistic adults.”

Regarding ADHD, we know that, “As many as 80% of adults with ADHD have at least one coexisting psychiatric disorder, including mood and anxiety disorders, substance use disorders (SUD), and personality disorders.” 

And, from a study from 2019, “Women and girls diagnosed with ADHD are more likely than their male counterparts to also have one or more comorbid conditions including autism spectrum disorder, schizophrenia, and suicidal behavior.” 

So, women have higher risk of having a more than one health condition associated with their autism or ADHD, AND higher risk that that condition will be more detrimental to their overall health. It seems likely that this higher risk might apply to other neurodivergent brains, as well.

Women Are Taking Care of Their Kids and Parents, Too

And two, the second reason I especially want to talk about the difficulty of having more than one health issue for women who are not neurotypical, is that women are more likely to be family caretakers. That means that women are more often trying to manage their own conditions and health concerns, as well as those of their children and older relatives. 

Here’s some information from the National Alliance for Caregiving:

  • 1 in 5 people in the United States, in 2020, is providing unpaid care to someone in their family. That’s 53 million people working, unpaid, as family caregivers, just in the US.
  • 1 in 4 of those people are actually caring for more than one person
  • The majority of caregivers are women, somewhere between 53 and 68 percent, according to the Family Caregiver Alliance. Women caregivers also spend more hours of the week providing care than men caregivers do, and are more likely to assist with more difficult caregiving tasks, such as toileting and bathing. Men are more likely to assist with finances or arrange for other care 

With our healthcare and support needs being complex, neurodiverse people can have trouble getting those needs met. Autistic and ADHD women can have even more trouble getting healthcare, mental health support, and help from friends and community.

When we don’t get the healthcare or community support we need, we can end up stressed, depressed, anxious, and in worse physical or mental health. This situation can cause a downward spiral and is scary for a lot of us, which is why I wanted to talk about it.

How Interviews Were Conducted for This Podcast

I have my own experiences, but my health concerns are luckily relatively minor, so I didn’t want this to be about me. I wanted to get some perspectives from neurodivergent women who interact with the healthcare system more often than I’ve had to. 

In order to make sure this episode reflected a variety of perspectives, I put out a call to my followers on social media to ask for their experiences getting support for their medical and mental health concerns, from the medical systems and from their social circles. I also asked if anyone had any stories about being a neurodivergent caretaker for someone else, and how that affected them.

I cannot thank everyone who responded enough! So many autistic folks offered up their stories and ideas in the hopes of helping other neurodiverse people listening to this podcast, and I was so moved by the generosity of our community. I want to thank Meg, Dominica, and Lauren Melissa, for generously offering their experiences and expertise for today’s podcast. 

I asked these wonderful women a series of questions over email about their lives, diagnoses, and experiences with the healthcare and mental health systems. They all have amazing Instagram accounts, so go check them out and give them a follow!


Interview with Dominica, @The_ADHD_Dynosaur

First, let’s hear from Dominica, @the_ADHD_dynosaur, from Calgary, Alberta. Dominica is an ADHD advocate and parent of 2. A brief content warning: Dominica’s interview contains mention of the death of a family member in a traumatic circumstance. Please skip forward or give this episode a pass as you need to. Your mental health matters! 

Dominica sent in her answers as an email and has given me permission to reproduce her answers here for you. Her email has been slightly edited for clarity.

dominica the_adhd_dynosaur
Dominica, @the_adhd_dynosaur

My name is Dominica, but I've gone by the nickname of Dyno since I was 16. I honestly do a bit of everything: I've volunteered at my local zoo as a keepers assistant, I paint massive murals and repaint little knick knacks, and volunteer as a scout leader for my area.

I've been disabled since I was 14, and off work since I was 19... so now I fill my time learning new skills, helping in my communities. My most recent endeavor is raising awareness of ADHD.

I live in Calgary Alberta under the beautiful rockies that have been my safe haven for years. I was diagnosed at 25 with ADHD and ODD; however it was a long journey leading to the diagnosis. Prior to that, I was diagnosed with OCD, anorexia, and PTSD. It was one of those things teachers would mention, but my parents sorta brushed off, always lurking.

On top of my little alphabet soup, I have a spinal injury, and two steel pins in my hip. My ADHD diagnosis used to just sneak in and cause trouble like a little gremlin in the vents. However after the diagnosis, and when I really began looking at it and understanding it, it's become more of a work of art in progress, every day I'm learning new ways to view my brain, new ways to love my ADHD as it is.

I found once I had the knowledge, I had the power to start controlling it, using it to my advantage. The more I thought about it, the more I realised how negatively ADHD is treated in kids, and began seeing the same behaviours that messed me up in common places like the school room.

[I] began really wanting to change the narrative before my kids, my nieces and nephews all get the short end of the stick and end up struggling way worse than they should ever have to.

So my journey with doctors started when I was 14. We had been involved in a [motor vehicle collision.] I won't call it an accident, as he was drinking, making it his fault, not a random unavoidable occurrence, that resulted in my younger brothers passing and my physical injuries.

Even at that time I felt so unheard, so out of control, very me-against-the-world vibes. They would often talk at me, rather than to me, or to my parents like I wasn't even there, which I now get would aggravate my ODD. Even more so, my PTSD and nerve damage would still go undiagnosed for 9 more years.

I felt so unheard, so out of control...

by Austin Guevara from Pexels

My needs didn't get met until I was 18 and pregnant with my first son. A teacher at an outreach school suggested I go to this youth community center called The Alex, a 15 minute walk from the school, and that was the most important moment for my mental health.

This place not only understood how I processed my world, they knew how to work with it. They became my family doctor, they had the most wonderful counselor I had ever met, and I'd already gone through 8 others. I trusted them, I still trust them.

It really taught me the importance of validation, and showing compassion. For me that made the biggest difference, was finding a medical professional I could trust and knew they were on my side. I feel like the medical field needs to be a little more aware of mental health and how that affects the way we react.

I'm not saying it's an excuse for some behaviours, but an explanation. We should always be working on growing as people and understanding ourselves deeper. That's not a neurodivergent thing, though, that's an every human thing, striving for growth.

I needed these adults that I was looking to for guidance to help me through my loss, and help me with my huge emotions. However, I do understand they couldn't. They did the best they could with what they had and I understand that. That's why we need to give them better information, more understanding.

At first I was kinda the loner kid, so I didn't really have much for friends. I had one friend just before the car crash, pretty new BFF's, came and saw me everyday in the hospital and would come to the court dates with me.

I [wrecked] that though, started drinking at school, doing drugs and having sex. So I was back to the loner kid. Then, I got a job at the theater and made best friends with one of the most accepting people I had ever met. She was kinda the bitchy girl at work on the outside, but inside she was the most caring, passionate person and the confidence she portrayed was always so enticing.

...anything to cope with this racing mind, and chaotic energy that overwhelmed me constantly...

My teen years were a whirlwind of drama and reckless behaviors, anything to cope with this racing mind, and chaotic energy that overwhelmed me constantly. My friends, though, they got it, and they didn't judge or anything. I never had to come out as pansexual or anything, they just kinda knew.

My grades flopped though, and my home life was pretty explosive. My mum and I grieved very differently and weren't seeing eye to eye. I get now she wasn't having her mental health needs met either, and just honestly couldn't parent an untreated, grieving teen without any support, so I definitely don't blame her for any of it, even not getting me diagnosed sooner.

Nowadays though, we're super close. We text each other daily and see each other at least once a week. It took time, and it took me changing first for my mum to feel safe to accept change and get support. I was always the little more 'out there' one, and I made the choice to change for my kids, and my own sanity first. She'd never let me go alone, so she came along for the journey and we've both grown.

I also found that many of my friends are still as open and supportive now that I honestly feel supported. I feel heard and in control of myself. I really want to help others find those circles that understand them, because honestly they're out there; you're not alone.

Sometimes with family it takes healing yourself first to encourage them to heal too, because my I started the process, my mum did, then because she did my dad began too. Compassion is contagious.

adhd women mental health
By Cowomen on Pexels

Compassion is contagious.

I have two sons, both with ADHD and anxiety. My oldest is 10 (V), and my younger one is almost 8 (C). Going through the medical system to get V diagnosed was the worst experience I had ever had. I was a young mum, had him at 19, and not diagnosed yet, so they treated me like I was less-than all the damn time. I mean, I'm sure my ODD didn't help with that either.

I knew something was going on. I knew something wasn't quite right and he needed something more than he was getting. Thank goodness I listened to the mama instincts, even after every teacher and doctor basically gave me an 'Eh, boys will be boys.'

I'm sorry, but my five year-old just had a 3 hour screamfest and smashed a door in the middle! I don't really think that qualifies for 'boys will be boys.' And I had days I really wasn't a good mum because I couldn't manage my own mental health and his at the same time, and my spouse was dealing with undiagnosed bipolar disorder at the time so the stress was high. Never abusive but not really a family I wanted to be either.

I still live with crazy guilt over this, even though I've come a long way, and my boys regularly tell me I am the best mom ever. I'm their safe person, because they know they can tell me anything, and I'll have their back.

After getting [V] diagnosed, things just got so much worse before they got better. The school system could not support him, and we had an issue with a toxic, uncaring principal. He was sent home almost daily, and it got to the point that I was terrified to answer my phone, the anxiety of facing everyone again with those judgmental glares as I carried my screaming, flailing, dysregulated child out of the school again, was too much to deal with most days.

I again reached out to Alex and asked for help. We got in contact with another local youth group that had a program to help us. We had a specialised therapist come out once a week and teach us strategies to help him (many we still use and some we haven't needed for a few years).

This lady was amazing: she understood me, she knew I was the burnt out caregiver of two special needs boys and my hubby, who was having an episode (his last one, in the last 4 years since diagnosis), she knew I NEEDED compassion. She helped me feel confident, and like I was doing an okay job.

Near the end of the 18 month program with her, I stood up to our principal with her support and got my son into a specialized class. We've been working on repairing his self esteem and providing him the best chances for success.

dominica the_adhd_dynosaur
Dominica, @the_adhd_dynosaur

C was only recently diagnosed after a great struggle to get his teacher to understand the fact that he isn't outwardly hyper doesn't mean anything, as here the teachers need to fill out S.N.A.P forms for them to get diagnosed. He also was very sick for a very long time while we did some testing and eventually [found] out he has celiac disease. My poor baby really struggled with that. Our journey with him is only just starting.

He's pretty terrible for holding everything in until he really can't anymore, and he needs me to come pry it out with a series of carefully thought out questions. Then, it gushes when the dam breaks and he finally lets me in. As of yet, I'm the only one he's opened up to, but we're working on finding a therapist for him.

I would love to go back and tell myself that it's ADHD and PTSD sooner, tell [past me] she's not crazy, or too much of anything! I want people to maybe understand that your ADHD isn't a weakness, it's a strength, but you just gotta refine it a bit.

Own that stuff! You don't owe anyone an apology for existing. Self awareness is a skill that's so invaluable, but it takes a lot of practice, like daily practice, just like you would any other skill. Start small, pick one or two things to work on at a time and celebrate those little wins!!

I found recently a big thing for me was changing my wording. In particular, "I failed," becomes, "Well, that didn't work. What can I do differently? How could I grow from this?" 

What can I do differently? How could I grow from this?" 

Danielle again here: Thank you so much to Dominica for allowing me to interview her. I think her story is so moving, especially with the heartbreak of losing a sibling in such a traumatic way, so young. But it sounds like she and her family are persevering with a lot of hard work. And doesn’t it help so much to find mental health and medical support that actually listens to you? And reading your interview, I’m pretty sure you are the best mom ever!

Remember, you can find Dominica on Instagram at The_ADHD_dynosaur


Interview with Lauren Melissa, @Autienelle

Next, I’d like you to hear from Lauren Melissa, autistic advocate and creator of AutieTips. She’s on Instagram @autienelle

autinelle autietips mental health autistic women
Lauren Melissa, @autinelle

My name is Lauren Melissa. I am a librarian and I live in New York City. My current diagnoses are autism spectrum disorder, as well as hypermobility syndrome, chronic hypoglycemia, and just in general, chronic pain.

They affect my life every single day. Autism affects me socially, emotionally, but it also impacts my work. Beyond the social-emotional difficulties and the sensory difficulties, it helps me in terms of my way of thinking, in terms of getting work done, and I consider autism to be a gift as well as a challenge, especially in our neurotypical society. 

Hypermobility syndrome, on the other hand, while I can do cool, stretchy tricks, it causes me to suffer from chronic pain, in addition to the sensory pain I have with autism. I am constantly microtearing my joints, I have incurable chronic tendonitis in both of my shoulders and I experience a lot of tension headaches and cluster headaches and occasionally migraines as a result of these pains. 

Hyperglycemia causes me to have chronically, abnormally low blood sugar. So, while some autistics say they forget to eat because they hyperfocus, I don't have the ability to really do that because I can pass out, get irritable, get dizzy, and it really affects my days. I have to keep a constant pulse on my hypoglycemia throughout every single day. 

misdiagnosed autism migraines woman
Photo by David Garrison from Pexels

I've been misdiagnosed throughout my life.

With doctors, I’ve had many struggles. I've been misdiagnosed throughout my life. I was diagnosed with migraines. I was diagnosed with fibromyalgia, misdiagnosed with that, and I was put on medication such as Tramadol for pain, and a fibromyalgia medication called Savella, which does certain things to the neurotransmitters in the brain. As a result, I went through a lot of anxiety and depression before they realized that the medicine was causing that and I was taken off. 

I am no longer diagnosed with fibromyalgia because it is a diagnosis of exclusion and my autism diagnosis replaced it. 

With mental health caregivers, I would say that the majority of them were really clueless as to what was going on in my life and in my struggles, either because I wasn't diagnosed with autism yet, and so I couldn't tell them that I was autistic, or even after my formal diagnosis, they had very limited experience with autism and couldn't really see my struggles, beyond the fact that I could make eye contact and smile at the right times, “right times,” so that has been a struggle to find mental health caregiving that worked for me. 

I also have hypermobility syndrome and that has been a difficulty because I believe that it is more than that, and so I am seeking a potential Ehlers-Danlos diagnosis. That's been a battle though, because I have to see my primary caregiver and then a rheumatologist and then get referred to a geneticist, and with healthcare and making sure everything is covered, as well as moving states here and there, I've had a lot of struggle getting to that final step in the process. So I hope to eventually get evaluated for Ehlers-Danlos syndrome but it has not happened yet. 

With regard to social support, I would say that my friends have been the most supportive people, especially those that I have told that I'm autistic from the get-go when I met them. With family, they tended to just tell me, "You are who you are, I’m not going to change the way I am around you, I’m going to treat you exactly the same." And by saying that, I think they believed they were doing me a favor, so it took a while to explain to them that I actually did need them to learn about, and to become aware about the ways that autism impacts me every day. 

...always look at the little improvements, the little progress. It can feel like we’re just constantly going uphill, constantly going uphill, but each day we can climb a little higher.

It's been a slow journey, but there has been progress there. My friends, on the other hand, I can say things like, “I need a break because I'm feeling socially overloaded,” or “I can't go out, I feel like my routine’s been disrupted,” and they would understand and be understanding. I wish it would just be easier, that people wouldn't need so many explanations. In an ideal world, we would just listen, learn, and adapt to peoples’ needs as they came. But, one step at a time for we have a true neurodivergent acceptance.

My mother, who has since passed away, was diagnosed with many mental health disorders, most of which I don't feel like disclosing in this interview. But, she had some complex co-occurring conditions, and it was very hard to manage my autism and also care for her in the last years of her life. The biggest challenges were me needing to mask, and ignore social and sensory overload in order to take care of her. That was a very hard time. 

A takeaway that I would like others to have from my story is that: Autistic people, we do have challenges, we do have struggles, but we also have so much to offer. We are inherently valuable in a society that really needs out of the box thinking and innovation in order to overcome the complex issues that we face. Not autistics face, but society as a whole face. 

autienelle mental health autism women
Lauren Melissa, @autienelle

And I would say, always look at the little improvements, the little progress. It can feel like we're just constantly going uphill, constantly going uphill, but each day we can climb a little higher. Maybe we need to take a little break and sit at a part of the mountain for a few days, but even that is still progress, because so many of us, we never learned how to take care of ourselves. 

We were always told to keep masking, keep camouflaging, keep trying to be neurotypical. The moment that we recognize that we are autistic and we don't need to try to be neurotypical, we just need to try to learn who we are and how to exist in our world, that's the moment we can really recognize inclusion in our own lives, self inclusion. We can make our own happiness. We can make our own joy and we can find those who love and support us.

We can make our own happiness. We can make our own joy and we can find those who love and support us.

Danielle here again. Thank you so much, Lauren Melissa, for sharing your story with us, and for your powerful activism for all of us autistics! Friends, remember to find her on Instagram @autienelle

We’ve heard from two very different women in very different lives who’ve experienced a lot of difficulty accessing correct diagnoses for themselves and their family members, as well as trouble finding good medical and mental health care. We’ll hear from one more contributor, Meg, about her journeys with sensory processing disorder and avoidant restrictive food intake disorder, after a quick break from our sponsor, I Ally.


This Episode Is Sponsored by I Ally

Today’s episode is generously sponsored by I Ally. I Ally is a website and app created to be the Family Caregivers Companion.

It was created by a young woman who became her father’s full time caregiver rather suddenly and recognized the lack of support and resources available to caregivers in our millennial generation. The I Ally app provides personalized access to mental health providers, financial coaching and education, legal counsel and a digitized matching service for clinical trials.

It also has a cool feature, the I Ally checkup, which ensures that you are taking advantage of all the benefits you may be eligible for, as well as a personal caregiving coach.

What I really loved about I Ally when I first found out about it is that the app offers a way for those of us taking care of kids or parents with significant needs a centralized space for all of our medical documents, medical histories, medications, important notes, which makes it easier to keep track of everything.

I struggle with executive function. I’ve talked about that before and my kids have multiple medical conditions to manage. I know a lot of you are in the same boat.

The app is a huge help. Additionally, as a family caregiver, all of your own medical information, documents and medications are in there too. And the app encourages you to be thinking about how to take care of yourself and make sure you’re getting to your appointments to while you’re supporting your family member.

You have access to all of this coaching, as well as medical and mental health resources right inside the app. So it’s all easy to find when you need it. There’s also mutual aid opportunities to help right inside the app.

So if you need help picking up groceries or getting rides to the doctor, you can ask for help from a volunteer or you can volunteer yourself. If you want to be available to help others in your community, you can customize your own plan so you can choose the resources you need or want. It’s all personalized and it’s free to join.

You can learn more about I Ally at app.I-Ally.com.

Thank you so much to I Ally for sponsoring Neurodiverging today!


Interview with Meg, @arfidawareness

Thank you, I Ally! Now, I’d like you to hear from Meg, also from New York. Meg runs the instagram account @arfidawareness, which is dedicated to raising awareness about Avoidant Restrictive Food Intake Disorder (ARFID) and Sensory Processing Disorder (SPD).

Another brief content warning: Meg’s interview contains discussion of medical trauma, as well as discussion of her difficulty with avoidant restrictive food intake disorder, which is an eating disorder. Please skip forward or give this a pass if you need to. Your mental health matters! 

Meg sent in her answers as an email and has given me permission to share her answers with you. Her answers have been slightly edited for clarity.

My name is Meg, I’m from New York (born and raised). I’m an identical mirror twin. I just graduated with my masters in exercise and sport psychology and am hoping to further my education in either occupational therapy or clinical psychology. I love trail running, traveling, and playing the flute and guitar.

spd arfid mental health women
Meg, @arfidawareness

I have sensory processing disorder and avoidant restrictive food intake disorder (ARFID). On the outside looking in, most would have no idea I struggle with these things, but they affect me socially, emotionally, physically, and occupationally.

Every day things can be incredibly difficult, especially if I don’t know how certain environments are.  Socializing can be hard when there is food involved, and everyday sensory things that most don’t have an issue with can be beyond difficult to manage, as I respond differently to sensory stimuli. Sometimes I feel like I have to walk on eggshells. It’s exhausting.

Sometimes I feel like I have to walk on eggshells.

When I was first diagnosed with an eating disorder, ARFID wasn’t in the DSM and I didn’t meet the criteria for anorexia, but they diagnosed me with anorexia anyway. So I was treated for anorexia for over 10 years before anyone ever entertained an ARFID diagnosis.

To have an eating disorder where body image isn’t a concern is often overlooked. I was in multiple treatment centers and they were traumatizing in a lot of ways, because the underlying issues weren’t being addressed. In some ways, I developed an even more intense fear of food, which only ended me back up in treatment; it was a terrible cycle.

I was labeled as chronic anorexia, non-compliant, and treatment-resistant. Those labels harmed me for years.

I was labeled as chronic anorexia, non-compliant, and treatment-resistant. Those labels harmed me for years.

In addition, treatment centers are not versed in sensory issues. I remember uncontrollably gagging and throwing up textures of foods, having sensory shutdowns and meltdowns because of my external sensory environment being so overloaded, and instead of someone exploring more of what was going on, I would just be put on 1-1 observation, and still had to eat these foods, and [was] told I needed to “ride out the anxiety.”

What people failed to recognize was that the root of my anxiety was a sensory issue, not typical anxiety. It was an inability to process and regulate sensory stimuli. Still now, treatment centers are still not well versed in ARFID, even though it’s been in the DSM for over 7 years now.

As far as my SPD, I’ve had that for as long as I can remember, but since I did well in school growing up no one questioned it, and it was [written] off as me being “sensitive.” Once I got to college, I was told it was just anxiety and panic disorder, but I knew it was something else. I would often try to advocate for myself, but doctors and mental health providers wouldn’t listen, or they told me that those issues only happen in children and you outgrow it (which is false).

I eventually gave up for a while on trying to advocate for myself. It was exhausting. I figured that I’d just spend my life trying to “get by” the best I could. And, since SPD is not currently recognized by the DSM as a stand-alone disorder, there’s a lot of controversy around it – so finding a doctor who was willing to listen to me and help me get services to address it, was challenging.

It wasn’t until I was in the end of my undergraduate program where it started to impact my daily life; I had to leave school and I couldn’t work. It took years to have professionals hear me out and actually look into a proper diagnosis. It has been beyond difficult. But once I reached out to [occupational therapists] and found eating disorder professionals who were willing to listen to me, I actually started to make progress and things just made so much sense, especially since ARFID and SPD tend to go hand in hand.

...treatment centers are still not well versed in ARFID, even though it’s been in the DSM for over 7 years now.

I think if there were more education around ARFID in the eating disorder community, it would have been easier to have my needs met. If treatment centers employed occupational therapists back then to be a part of one’s treatment team, I believe that my ARFID and SPD diagnosis would have been picked up on much faster, and my needs could’ve been more appropriately met.

I have a few family and friends who have been great about support. But on a whole, it’s been hard. ARFID and SPD are so misunderstood and often under-represented. People think they’re just “childhood” issues and that I’m just being picky and/or too sensitive. It can feel so hard to explain to them.

I wish there was less stigma on it. I wish it were easier for them to understand why I react certain ways, and that it isn’t something I can necessarily control, but a genuine lack in ability to respond appropriately to sensory stimuli. I wish they would understand that I’m just not wired like them. I also wish they wouldn’t take my reactions personally. What would be easier is if they just asked questions instead of making assumptions about things regarding my ARFID and SPD.

Misdiagnosis is harmful. Professionals NEED to better educate themselves instead of making assumptions based off of their own beliefs or what they think they may know. Misdiagnosis made my issues so much worse. If I were correctly diagnosed from the start, I think I could have prevented a lot of secondary mental and physical issues from occurring. I would have been able to get services so my quality of life was enhanced rather than diminished.

If you believe you are not being treated fairly or correctly, seek a second opinion. You know yourself better than anyone else. Never stop advocating for yourself. There are people and health care providers who WILL listen. Don’t stop until you find them.

It’s possible to live a fulfilling life even in the face of ARFID and SPD. Since finding healthcare providers who understand my struggles, I’ve been able to get the support I need to make more progress. While these conditions impact me, and might always, I can learn to manage them in a way that doesn’t interfere with my everyday life, and can slowly start to enhance my quality of life in a way that works me.

If you believe you are not being treated fairly or correctly, seek a second opinion. You know yourself better than anyone else. Never stop advocating for yourself. There are people and health care providers who WILL listen. Don’t stop until you find them.

Danielle again here. Thank you so much, Meg, for sharing your struggles with us, and for your inspiring words. It is so hard and exhausting to advocate for yourself constantly, but you're right - there are good medical providers out there. We can all keep doing the work to encourage more education for health professionals on all forms of neurodiversity, common co-occuring issues, in the hopes it will be easier for all of us in the future.


Concluding Discussion

Thank you again to Dominica, to Lauren Melissa, and to Meg for sharing so much so candidly for all of us today. I think their stories speak for themselves, but here are a couple of common themes I want to point out for you all.

  1. Most of us neurodivergent women rely on friends and family to offer us support and care, over healthcare professionals and mental health systems. It’s hard to feel heard about your personal experiences, get correct diagnoses and treatment, and to access useful medical and mental health interventions even if you know what you need.
  2. The lack of support does seriously affect the overall health and wellness of neurodivergent women. Bad interactions with the medical systems, like Dominica having to wait 9 years for a PTSD diagnosis and treatment for her nerve damage, Meg’s anorexia “treatment,” and Lauren Melissa’s adverse drug reactions, create long-term harm for us.
  3. Simultaneously, good medical and mental health interventions can be life-changing. Dominica said that her experience with a good mental health practitioner “taught me the importance of validation, and showing compassion,” and turned around her family’s life. All three women expressed that finally finding correct diagnoses led to helpful treatment or modified their expectations in such a way that they could view themselves and their neurodivergences as inherently valuable and necessary to the world. 

Thank you for listening to Neurodiverging today. Please remember, we are all in this together.


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Full Interview Questions

1. What name and pronoun would you like to be referred to during the podcast? Feel free to say anonymous if you don't want to be credited.
2. For credit purposes, do you have a website you would like me to link? Feel free to use a social account if you prefer.
3. Tell me about yourself! What's your name? What do you do? Where do you live? Can you sum up your diagnoses / neurodivergence/ medical needs? What are they, and how do they affect your life?
4. Tell me more about your experience having complex conditions as far as doctors, mental health caregivers, and the medical systems go. Has it been easy to feel heard/ get support? Has it been hard? What could have gone better for you? Why do you feel you had trouble getting your needs met (if that's the case)?
5. What about social support? Has it been easy or hard to reach out to family and friends when you needed help? What do you wish would be easier?
6. Do you have any children or other family members who have complex conditions? Tell me a little about your experience managing your own stuff AND their stuff. What are the biggest challenges?
7. Do you have a takeaway from your story you'd like others to hear? What advice would you give others in your situation?
8. Please feel free to take a couple minutes to tell me anything else about your story you want people to know.

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