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Category: Neuroatypical Kids

  • You’re Not Listening to Her: A Medical Advocacy Story

    You’re Not Listening to Her: A Medical Advocacy Story

    This blog is a tag-team effort between me and AI—think of it as my over-caffeinated intern who spits out ideas while I handle the heavy lifting. I research, fact-check, edit, and fine-tune everything to make sure it sounds like me (not a robot with a thesaurus). AI helps with the grunt work, but the heart, style, and final say? That’s all me, baby.

    I want to tell a story about what happened to my daughter and me in the Canadian healthcare system, because I know we’re not alone. I’ve changed all the names for anonymity, but the story is, sadly, all too real.

    The Pediatrician We Trusted…At First

    Years ago, I was referred to a pediatrician for my daughter Ava. At the time, she was around six and suffering from chronic stomach pain, constipation, recurring croup, and constant anxiety related to school. 

    She had nightmares, meltdowns, and was being ostracized and bullied. I knew something deeper was going on. I didn’t have the words “autism” or “ADHD” yet, but my mom gut told me she was different—and struggling.

    Our pediatrician—we’ll call him Dr. McLecturepants—was very knowledgeable. Ava liked him. He was good at addressing her physical health issues. He took things seriously, referred us to specialists, and was often thorough. 

    But there were red flags. 

    Dismissed, Doubted, and Lectured

    Early on, I was struggling to get Ava to take medication. What I now know is ARFID, sensory aversion, and autistic rigidity was, back then, just a nightmare every time I had to administer meds. 

    Meltdowns, sobbing, trauma for both of us. 

    When I asked for help, he didn’t offer compassion. He gave me a five-minute lecture on how I needed to “take control” and “stop letting her run the show.” It was humiliating. I left feeling like a failure.

    From then on, I was nervous around him. I often wondered, would he speak to me this way if a man were in the room? I was a single mom. White. Tired. Not wealthy. He was a male doctor with a strong accent—possibly Middle Eastern—and although I didn’t want to bring culture or bias into it, I couldn’t ignore the power dynamic. 

    I wrestled with myself for even thinking that cultural background might play a role — not because I wanted to stereotype him, but because I’ve lived long enough to know that gender dynamics can be shaped by upbringing, culture, and society. Still, I sat with the discomfort of that thought and tried to focus on what I knew: I felt talked down to, and I didn’t feel respected.”

    I felt small. 

    Like I was being treated as a hysterical mom, not a capable one.

    Homeschooling: The Best Decision We Made

    When school became unbearable for my daughter, I started researching homeschooling options. It wasn’t a knee-jerk decision. I consulted experts (including a clinical psychologist), read studies, and made spreadsheets. I also began compiling information about ADHD and neurodivergence, trying to be prepared to make my case.

    Dr. McLecturepants dismissed homeschooling outright. Didn’t want to hear about the trauma Ava was experiencing. Didn’t care that her nightmares and pain disappeared within two weeks of being pulled from school. 

    He continued to disapprove, even when I brought up ADHD. That, at least, he was more receptive to, but the lectures didn’t stop. I kept going back because he was knowledgeable about ADHD, and I thought I needed that.

    Rather, I thought my daughter needed that, and I should just shut up and deal.

    The Diagnosis Battle

    But when I brought up autism? He shut it down. Said she couldn’t be autistic because she made eye contact. (Yes, really. Hello, 1955 called and they want their scrubs back)

    Eventually, I demanded a referral. I gave him research. I asked for a specific autism specialist recommended by a trusted friend. 

    McLecturepants reluctantly referred us, but warned me the doctor “diagnosed everyone” and other professionals didn’t like him. I couldn’t believe he was dragging me into some petty professional rivalry when my daughter’s health was on the line.

    The diagnosing doctor met with my daughter, gave a comprehensive evaluation, and said, “Yes. She’s autistic.” 

    I went through ALL the feelings that day—IYKYK—but one of the ones I never expected to feel was validation. Someone else finally listened to me and I wasn’t crazy, which is what my pediatrician had been making me feel like. 

    The specialist did say kiddo might not have ADHD, but I trusted my gut—because comorbidity is common, and I’d done the reading. I was more worried that McLecturepants would react poorly when he read the report, particularly the part about the specialist disagreeing with his diagnosis. 

    It’s not fun to feel you’re caught in a pissing match between two health “professionals,” which only magnified my feelings of “walking on eggshells” with McLecturepants.

    The Funding Form Fiasco

    Fast forward. The Disability Tax Credit needed renewing. We’d been working with a phenomenal ASD counsellor who’d seen Ava regularly and knew the extent of her challenges. The DTC forms went to Dr. McLecturepants. I was told it would take months to fill them out.

    I got emotional. After all, it was our only funding, given we’ve been on waiting lists for years with the Ontario Autism Program and Special Services at Home. (I’m looking directly at you, Doug Ford).

    McLecturepants ended up filling them out quickly over the holidays, which I appreciated—until I read them. He’d minimized kiddo’s struggles. Downplayed how much support she needs. Even checked the box saying her deficits would likely improve over time—as if autism isn’t a lifelong neurotype.

    When I first read what the pediatrician had written, I questioned everything about my reality. Maybe it wasn’t that bad? Maybe I was exaggerating, and making too much out of our struggles. Maybe there was something wrong with ME that I couldn’t handle the extra work required for my daughter?

    Thankfully our counsellor, who at this point had been visiting with my daughter and I for over a year, twice monthly for an hour at a time, also expressed her shock and surprise at how inaccurately Dr. McLecturepants had characterized our daily struggles.

    I was heartbroken. I drafted a letter—respectful, clear, and shared with our counsellor and friends for feedback. After all, I didn’t want to provoke another lecture. I didn’t want to make things worse, or insult our pediatrician’s professionalism, or god forbid, challenge him or hurt his ego.

    I brought in observations from myself, her grandparents, coaches, teachers—any adult in Ava’s life. I asked him to reconsider.

    He refused. Told his receptionist he wouldn’t change it. So I made an appointment. 

    Enough is Enough

    This time, the gloves were off, and I knew the advocate (me) needed an advocate.

    So I brought my mom—who never takes my side in these things; after all, I’m too outspoken, too sensitive, too…(you get the drift).

    But this time she came, because I needed backup. It meant so much to me that she did that, even though I could see she didn’t believe it was as bad as I said it was.

    When we tried to explain, he talked over us. 

    Not once, not twice. 

    Repeatedly. 

    McLecturepants wouldn’t acknowledge the fact that we might have a better understanding of the difficulties my daughter has every day. My mom—stoic, practical, no-nonsense—who never speaks up and hates confrontation, actually shouted: “You’re not listening to her!” after he cut me off yet again.

    That’s when I stood up and said: “We’re done. You’ve lectured me for years. Dismissed me. Put me in the middle of conflicts with other doctors. I believe you’ve treated me differently because I’m a woman, and I don’t feel safe bringing my daughter here anymore.”

    We left.

    One Final Violation 

    I picked up kiddo’s files a week later. On my way to our counsellor’s office, I noticed something strange. Mixed into Ava’s files were records for another child. Operations, procedures—stuff my daughter had never had. A huge privacy breach. I returned them immediately, because that’s what I’d want another parent to do if it were my child’s info. 

    But wow. 

    Just wow. 

    This from the office of a doctor who’d been lecturing me for years about MY incompetence as a mom?

    Blacklisted for Speaking Up

    We’ve been seeing our GP ever since. Lately, I’ve been researching other possible underlying conditions—things like hypermobility, POTS, immune dysfunction—and brought them up with our GP, who was amazing and agreed to help. He referred us to another pediatrician in our town.

    I didn’t realize this pediatrician was at the same office as Dr. McLecturepants. You can imagine the surprise when their office called to schedule the appointment. Still, I knew I would have a longer wait for a pediatrician from other, larger centers, so I agreed to the appointment.

    Why would I go back?

    If you’ve ever had a sick child, you’ll understand that all you care about is making their quality of life better.

    And then, today, after picking up my daughter from school, a call came in from our GP’s office, which I took over our hands free, thinking it was about my upcoming blood tests. 

    We’d been rejected. Well, technically the word they used is, he has “declined.”

    The new doctor wouldn’t take us as patients because of my “issue” with the previous pediatrician. And my daughter heard every word of that rejection.

    The message was clear: they stick together.

    This is what it’s like to advocate for a neurodivergent child in the medical system as a single mom.

    No one’s listening.

    Backing it Up: What the Research Says

    Sexism in the Medical Profession:

    • A 2022 study published on “Women’s Experiences of Health-Related Communicative Disenfranchisement,” found that women are more likely to report feeling dismissed, not believed, or condescended to by medical professionals.
    • Female patients, especially mothers, often get labeled as “anxious” or “overreacting” when advocating for their children, leading to delayed diagnoses and interventions.

    Bias Against Single Mothers:

    • Single mothers are statistically more likely to be perceived as less competent parents by both professionals and the public.
    • These biases can lead to increased scrutiny, less support, and more judgment in medical and educational settings.

    Challenges of Advocating for Autistic Children:

    • Parents often report having to fight for recognition of their child’s needs, with many diagnoses being delayed due to outdated stereotypes like “they make eye contact.”
    • Autistic girls and children with Level 1 Autism (formerly known as Asperger’s) are often underdiagnosed due to masking and lack of understanding by professionals. 

    Privacy and Confidentiality in Canada (PHIPA):

    • The Personal Health Information Protection Act (PHIPA) mandates that healthcare providers protect the confidentiality of all patient information.
    • Sharing or misfiling another child’s medical information, even accidentally, is a breach under this act and can be reported to the Information and Privacy Commissioner of Ontario.

    Medical Ethics & Gatekeeping:

    • Physicians are ethically bound to advocate for patient welfare and make decisions free from personal bias or inter-professional politics.
    • Refusing care to a child based on a parent’s disagreement with another doctor raises serious ethical concerns about bias, access to care, and professional conduct.

    Why Parents Shouldn’t Be Penalized for Speaking Up:

    • Advocacy is not aggression. Speaking up about misdiagnosis, misrepresentation, or mistreatment should never result in being blacklisted.
    • Punishing parents for advocating silences necessary voices and puts children’s care at risk.

    This is my story. It’s also the story of so many parents out there who’ve been dismissed, condescended to, or penalized for doing what they’re supposed to do: protect and advocate for their child.

    We shouldn’t have to shout to be heard. But sometimes we do. And when we do? We deserve to be listened to.

    April is World Autism month. Do your part. Speak up. Advocate. Scream. Pound your fists. Or better yet, write a blog and call the assholes out.

  • Hypermobility, Autonomic Disorders, and Autism: Unraveling the Connections

    Hypermobility, Autonomic Disorders, and Autism: Unraveling the Connections

    AI lends a hand in drafting parts of this article, but I do the heavy lifting—researching, editing, and ensuring the message is clear, accurate, and aligned with my vision. Think of AI as my brainstorming buddy, but the final say (and human touch) is all mine.

    Ever heard of hypermobility, autonomic disorders, or autism? They might seem like totally different things, but guess what? They’re actually connected! It’s like a puzzle where these conditions often fit together.

    Think of it this way:

    • Lots of people with autism also have hypermobility (that’s when your joints bend more than usual).
    • And sometimes, people with hypermobility also have autonomic disorders (that’s when your body’s automatic systems like heart rate and digestion don’t work properly).

    So, what does this all mean? It means that understanding how these conditions relate to each other can help us find better ways to support people who experience them.

    Understanding Hypermobility

    Hypermobility is when your joints can move way past the normal range—think of it as being super flexible. This happens because the connective tissue that holds your joints together is different, usually looser, or weaker, or both.

    Definitions and Types

    Joint hypermobility means your joints can move past the usual range—sometimes way past it. For some people, it’s just how their body is built, but for others, it’s linked to genetic conditions like Ehlers-Danlos Syndrome (EDS). There are a few different types of EDS, but the most common one is Hypermobile Ehlers-Danlos Syndrome (hEDS).

    When multiple joints are extra bendy, it’s called generalized joint hypermobility. One common way to check for it is the Beighton score, a quick test that looks at how far you can bend things like your fingers, elbows, or knees. If you’ve ever been told you’re “double-jointed,” this might be why!

    Recognizing Symptoms

    So, you’re probably asking yourself, “how do I know if my kind of ‘bendiness’ is normal?” Well, if it’s more than just being bendy—like if you’re dealing with joint pain, frequent dislocations, or other weird body quirks—it might be worth looking into. You may have Joint Hypermobility Syndrome (JHS).

    And it’s not just about your joints. Some people with hypermobility also have super soft or stretchy skin, plus fun extras like digestive issues and fatigue (because why stop at just one challenge, right?). Spotting these symptoms early can help you get ahead of things and manage them better.

    Diagnosis of Joint Hypermobility Syndrome

    Getting diagnosed with JHS isn’t just about being extra bendy—your doctor will look at your medical history, do a physical exam, and probably check your Beighton score (yep, that test we mentioned earlier).

    But let’s be real—you might have to push for more thorough testing. As we’ve already stressed, hypermobility can be linked to other conditions, like EDS, which sometimes requires genetic testing to confirm. For example, the TNXB gene is one that might get checked to help understand the genetic side of EDS.

    Getting the right diagnosis is a game-changer—it helps you manage symptoms better and avoid potential complications down the road.

    Understanding Autonomic Disorders

    Just when you things weren’t complicated enough, we’re going to throw autonomic disorders into the mix. I know, I know! But stay with me, I promise I’m going somewhere with this.

    Autonomic disorders mess with the part of your nervous system that handles all the behind-the-scenes stuff—like keeping your heart beating and your digestion running smoothly—without you even thinking about it. When things go wrong, it can lead to symptoms like dizziness, chronic fatigue, and stomach issues. And if you throw hypermobility into the mix? Those problems can hit even harder.

    Introduction to Autonomic Dysfunction

    Autonomic dysfunction happens when your autonomic nervous system—aka the body’s autopilot—doesn’t do its job properly. This system handles all the stuff you don’t have to think about, like breathing, keeping your heart beating, and digesting food. When it’s out of whack, you can end up dealing with dizziness, insomnia, and some seriously annoying digestive issues.

    Chronic fatigue is another common symptom of autonomic dysfunction, often leaving you feeling tired no matter how much you rest. These symptoms can seriously affect your day-to-day life, making it hard to focus at school or work and impacting your social life. Learning to manage these symptoms often involves both medical treatments and lifestyle changes.

    Co-occurrence with Hypermobility

    Hypermobility—aka super flexible joints—often goes hand in hand with autonomic disorders. If you’ve got both, you might notice overlapping symptoms like dizziness and fatigue, which can make it feel like your whole body is out of sync.

    Digestive issues, like constipation or IBS, are also pretty common with both conditions, adding another layer of discomfort to everyday life. The more you understand the connection between hypermobility and autonomic dysfunction, the better you can find treatments that tackle both at the same time.

    Managing it all usually takes a mix of medication, physical therapy, and lifestyle tweaks to help you feel more in control and improve your quality of life.

    Hypermobility and Autism Connection

    Hypermobility and autism tend to go hand in hand, and it’s not just a coincidence. There are a lot of overlapping traits—like sensory sensitivities, certain behaviors, and unique ways the brain processes things. Knowing how they connect can make everyday life a little easier and help set realistic, supportive goals that actually work for you.

    Common Traits and Co-occurrence

    Hypermobility shows up a lot in autistic people—some studies say up to 80% might have it. Both come with similar traits, like heightened sensory awareness and unique reactions to the world around them. Basically, they overlap in ways that can shape how someone experiences daily life.

    Anxiety and depression are also pretty common in this group, likely because of all that extra sensory input and cognitive overload. If you’ve got both hypermobility and autism, everyday tasks can feel even more overwhelming, cranking up stress and sensory overload. But figuring out ways to manage these shared traits can make a huge difference in feeling more comfortable and in control.

    Implications for Daily Life and Development

    Living with both hypermobility and autism comes with some unique challenges that can impact daily life. Here’s how:

    • Physical difficulties – Joint instability can make movement tough, leading to issues with balance and coordination. This can make sports or even basic activities harder and might require customized physical support.
    • Developmental impact – Learning environments can be tricky, with some kids needing specific strategies to help with focus, motor skills, or sensory processing.
    • Additional health challenges – Conditions like eating disorders or epilepsy sometimes show up alongside hypermobility and autism, adding extra layers of difficulty to daily routines.
    • Personalized support is key – Tailored approaches—whether through therapy, accommodations, or understanding caregivers—can make all the difference in creating a supportive, functional environment.

    Figuring out what works best for you can help make life more manageable and improve overall well-being.

    Management and Support for Hypermobility and Associated Conditions

    Managing hypermobility usually takes a mix of therapies, mental health support, and lifestyle adjustments. Each piece plays a big role in making daily life easier and keeping symptoms in check.

    Therapies and Rehabilitation

    • Physical therapy is a game-changer when it comes to improving motor control and core strength. A good therapist will tailor exercises to help strengthen the muscles around your hypermobile joints, which can make a huge difference in posture and reducing chronic pain.
    • Occupational therapy is all about making daily life easier. It can teach you energy-saving techniques to help manage fatigue and keep you from burning out so quickly. Plus, regular exercises can improve proprioception (aka your body’s ability to know where it is in space), which helps reduce injuries and those frustrating missteps.
    • Talking to rehab specialists can also help you find solid pain management strategies—because dealing with discomfort every day is exhausting, and having the right techniques can make all the difference.

    Navigating Psychological Aspects

    Hypermobility and anxiety tend to go hand in hand, and dealing with both can be a lot. Recognizing the emotional toll is just as important as managing the physical side of things.

    • Therapy and support groups: Talking to a therapist who understands anxiety (and how it connects to hypermobility) can be a game-changer. Support groups can also help, especially if you’ve ever felt left out or misunderstood because of your symptoms.
    • Mindfulness and stress relief: Practices like meditation, deep breathing, or gentle movement (like yoga) can help with relaxation and keep stress levels in check.
    • Open communication: Being upfront with your therapist about what’s working (and what’s not) can help them tailor strategies that actually fit your life.
    • A solid support system: Surrounding yourself with understanding family, friends, or even an online community can make all the difference. Having people who get it and encourage you can help you navigate the tough days.

    Emotional health is just as important as physical health, and finding the right mix of coping strategies, support, and self-care can make everything feel a little more manageable.

    Lifestyle Modifications and Support Systems

    Making small lifestyle tweaks can have a huge impact on how you feel day to day.

    • Fuel your body right: Eating a balanced diet can help support your overall health (because let’s be real, running on caffeine and vibes only gets you so far).
    • Listen to your body: If fatigue is hitting hard, pacing yourself and scheduling rest breaks can keep you from crashing and burning.
    • Know your history: If joint hypermobility syndrome (JHS) runs in your family, being aware of it early can help you get ahead of potential issues.
    • Build your support squad: Whether it’s doctors, therapists, family, or friends, having people who get it makes all the difference. Surround yourself with folks who support you, not ones who tell you to “just stretch more” (because, yeah… that’s not the problem).

    The key is finding what works for you—a mix of nutrition, pacing, knowledge, and support that helps you feel as good as possible while managing hypermobility.

    Frequently Asked Questions

    The connection between hypermobility, autonomic disorders, and autism is complicated—like trying to untangle a bunch of charging cables from the bottom of your bag. This section dives into how these conditions overlap, affect each other, and what current research has to say about it. Spoiler: It’s all connected in ways we’re just beginning to understand.

    What’s the connection between joint hypermobility and autistic traits?

    Researchers have picked up on a connection between joint hypermobility and autism. Some studies suggest shared genetic factors might be at play, but there’s still a lot we don’t know. More research is needed to fully untangle how these two conditions are linked—but the connection is definitely there.

    Can autism impact your body’s autonomic functions?

    Yep, autism can absolutely affect autonomic functions. Some autistic individuals deal with things like orthostatic intolerance—which basically means their body struggles to regulate blood pressure and heart rate when they stand up. It’s like their nervous system didn’t get the memo on how to adjust properly, which can lead to dizziness, lightheadedness, or even feeling like they might pass out.

    Are folks with autism more likely to have hypermobile joints?

    People with autism are more likely to have hypermobile joints, though science hasn’t fully figured out why yet. The leading theory? Genetics. There’s a good chance that both conditions share some genetic factors, but researchers are still working on connecting all the dots.

    How might hypermobility affect behaviour in people with autism?

    Hypermobility can come with a side of pain and discomfort, and for autistic individuals, that can have a big impact on behavior and emotions. When your body hurts, it’s no surprise that anxiety and stress can ramp up, making everyday tasks and social interactions even more challenging. It’s not just about being extra flexible—it’s about how those physical challenges affect everything else in daily life.

    What are the sensory issues linked to hypermobility in those on the autism spectrum?

    Sensory issues are a big deal for people with both hypermobility and autism. Things like touch, sound, or light can feel way more intense than they do for others, making certain environments totally overwhelming. This is why having coping strategies—like noise-canceling headphones, dim lighting, or comfy clothing—can make a world of difference in navigating daily life.

    Wrapping It All Up: Understanding, Managing, and Advocating

    So, what’s the takeaway from all of this? Hypermobility, autonomic disorders, and autism are deeply connected, and understanding these links can make a huge difference in how we manage them. Whether it’s pain, fatigue, sensory challenges, or anxiety, recognizing how these conditions overlap helps in finding better support, treatment, and strategies for everyday life.

    Managing these conditions isn’t just about doctor visits and therapy (though those help!); it’s also about self-advocacy, pacing yourself, and building a strong support network. And let’s be real—sometimes, just knowing you’re not alone in this can be a game-changer.

    If you’re looking for ways to advocate for neurodiversity and celebrate the unique ways our minds and bodies work, check out BellaZinga! Our store is all about spreading awareness, embracing differences, and celebrating neurodivergence with fun, meaningful designs. Because at the end of the day, the more we understand, support, and uplift each other, the better life gets for all of us.

    Let’s keep the conversation going—because neurodiversity deserves to be seen, heard, and celebrated! 💜

  • POTS and Autism Comorbidity: Understanding the Connection

    POTS and Autism Comorbidity: Understanding the Connection

    This article is the result of a unique collaboration between advanced AI tools and my own expertise. While AI assists with generating ideas, research, and drafting content, every piece is carefully reviewed, fact-checked, and refined by me to ensure a consistent tone and professional insight. It’s a blend of technology and human touch, working together to deliver informed and polished content

    Understanding the connection between autism spectrum disorder (ASD) and postural tachycardia syndrome (POTS) can be key in enhancing daily life for many affected by these conditions. POTS and autism often occur together, which may complicate diagnosis and management but also provide insight into shared underlying mechanisms. This gives you a unique perspective on both conditions and their overlap.

    A person with POTS and autism sits in a quiet room, surrounded by sensory-friendly objects and calming colors. They hold a medical alert bracelet and a communication device

    Many people with autism experience various comorbidities, and POTS is one of them. This autonomic nervous system disorder can cause symptoms like rapid heartbeat and dizziness when standing up. Recognizing how these conditions interplay is essential for improving diagnostic accuracy and enhancing individualized care strategies.

    The overlapping symptoms of autism and POTS can impact day-to-day activities, influencing both social interactions and physical well-being. Effective management involves understanding the complex relationship between them and developing targeted interventions to improve quality of life.

    Key Takeaways

    • POTS and autism often co-occur, affecting diagnosis.
    • Understanding comorbidity helps in developing better care.
    • Treatment focuses on personalized strategies for better living.

    Understanding Autism Spectrum Disorder and POTS

    Autism Spectrum Disorder and Postural Orthostatic Tachycardia Syndrome (POTS) can often occur together, making it important to recognize and understand each condition. Keep reading to learn about the key features and challenges associated with ASD and POTS.

    Defining Autism Spectrum Disorder

    Autism Spectrum Disorder (ASD) is a neurodevelopmental condition impacting how you perceive and interact with the world. People with ASD often have differences in social communication and may engage in repetitive behaviours. Sensory sensitivities are also common, which means individuals might find certain lights or sounds overwhelming.

    Social skills can be challenging. You may find it hard to understand social cues or maintain eye contact. People with ASD might also fixate on specific interests, diving deep into topics they are passionate about.

    Routine and predictability are key themes. Changes to daily routines can cause distress. With the rising prevalence of ASD, estimated to affect nearly 2% of children, awareness and tailored support are crucial for improving quality of life.

    Characteristics of Postural Orthostatic Tachycardia Syndrome

    Postural Orthostatic Tachycardia Syndrome (POTS) is a condition where your heart rate increases substantially when you stand up. This can cause symptoms like dizziness or fainting. It’s an aspect of autonomic dysfunction, which involves problems with the autonomic nervous system.

    When standing, your blood pressure might not remain stable. Instead, there’s an increase in heart rate to compensate, causing discomfort.

    Living with POTS often requires lifestyle adjustments. Increasing fluid and salt intake can help manage symptoms. POTS can co-occur with ASD, and it’s important to address both to provide effective support.

    By understanding how these conditions intersect, you can better navigate daily life, whether you or someone you know is affected.

    Comorbidity in Autism Spectrum Disorder

    A person with Autism Spectrum Disorder sits in a doctor's office, surrounded by medical equipment and charts. The doctor discusses the comorbidity of POTS and autism with the patient

    Autism Spectrum Disorder (ASD) often presents with additional health issues. Understanding these comorbid conditions is crucial for effective management and care. Below, you’ll find a dive into the prevalence and types of conditions that commonly occur alongside ASD.

    Prevalence of Comorbid Conditions

    Many people with ASD experience other health challenges. The prevalence of these co-occurring conditions is notably higher compared to the general population. Research indicates that individuals with autism are more likely to have medical complications, emphasizing the need for comprehensive medical evaluations. Studies estimate that a significant portion of those with ASD has at least one additional condition, making early recognition and treatment essential in improving quality of life.

    Physical and Neurological Disorders

    Physical and neurological disorders are common in individuals with ASD. Conditions such as epilepsy, gastrointestinal issues, and sleep disorders frequently occur. These physical issues can impact day-to-day life, requiring careful medical attention. Epilepsy, marked by recurrent seizures, is found in up to nearly a third of people with ASD. Meanwhile, gastrointestinal problems can lead to discomfort and affect nutritional intake, necessitating specialized care and dietary adjustments.

    Psychiatric and Behavioural Comorbidities

    Psychiatric conditions often co-exist with ASD, adding complexity to diagnosis and treatment. Anxiety disorders, attention-deficit/hyperactivity disorder (ADHD), and mood disorders like depression are prevalent. These challenges can exacerbate the core symptoms of autism, making social interactions and daily activities more difficult. Effective management involves a tailored approach that addresses both autism and these psychiatric conditions, often combining behavioural therapies with medical treatment.

    The Link Between Autism and POTS

    Understanding the relationship between Autism Spectrum Disorder (ASD) and Postural Orthostatic Tachycardia Syndrome (POTS) involves examining shared factors such as genetic links and potential environmental influences. These connections can reveal why individuals with autism might be more susceptible to autonomic dysfunctions like POTS.

    Shared Etiology and Risk Factors

    Both autism and POTS are linked to issues in the autonomic nervous system, which controls bodily functions like heart rate and blood pressure. You might find that these conditions often coexist due to such autonomic dysfunction. This dysfunction can manifest as dysautonomia in both conditions, making daily activities challenging.

    Environmental factors, including pre- and postnatal exposures, can also play a role in the development of ASD and POTS. Factors like infections during pregnancy or early life stressors might increase susceptibility. Additionally, shared risk genes could predispose individuals to both conditions, indicating a genetic overlap.

    The Role of Genetic Predisposition

    Research suggests that genetic factors significantly impact the likelihood of developing POTS alongside autism. Some of the genes involved may affect the sympathetic and parasympathetic nervous systems, leading to irregular heart rhythms and blood pressure levels in autistic individuals with POTS.

    Understanding these genetic predispositions helps you appreciate why some people with autism experience frequent episodes of tachycardia, which is a hallmark of POTS. This insight is crucial for developing management strategies that address both neurological and cardiovascular aspects, potentially improving quality of life for those affected by both conditions.

    Impact of Comorbid POTS and Autism on Daily Life

    Living with both Postural Orthostatic Tachycardia Syndrome (POTS) and autism can significantly affect your daily life. You might face challenges in social interactions and emotional well-being, alongside physical symptoms like dizziness and fatigue.

    Challenges in Social and Emotional Functioning

    Dealing with both POTS and autism can make navigating social situations tricky. Social communication issues might make it hard for you to connect with others, leaving you feeling isolated or misunderstood.

    Restricted interests can be comforting but might also limit your engagement in diverse social activities. This combination of challenges can often lead to anxiety or even depression, making emotional functioning delicate to manage.

    Your daily interactions may require extra planning and support, especially in environments that are unfamiliar or overstimulating. Clear communication and understanding from those around you can ease some of these difficulties.

    Physical Symptoms and Daily Activities

    Physical symptoms of POTS, like dizziness and fainting, can disrupt your daily activities. You might find you need more time to complete tasks due to these symptoms.

    Excessive fatigue is common and can make maintaining a routine challenging. Activities that require standing or quick movements might be particularly difficult, affecting everything from attending school to social events.

    Managing these symptoms often involves structured lifestyle adjustments. Staying hydrated, following a balanced diet, and taking regular breaks can help. Adjustments in your environment, like having a seat nearby, can also make your day more manageable, helping you to stay active and engaged.

    Diagnosing Comorbid POTS and Autism

    A person sitting on a hospital bed with medical equipment around them, a doctor discussing their comorbid POTS and autism diagnosis

    Diagnosing comorbid POTS (Postural Orthostatic Tachycardia Syndrome) and autism requires careful evaluation of both autonomic and behavioural aspects. It’s important to look into specific symptoms of each condition and how they interact.

    Assessment of Autonomic Function

    Assessing autonomic function is crucial in diagnosing POTS in individuals with autism. You’ll typically undergo tests that examine how your body controls blood pressure and heart rate as you change positions. These tests might include a tilt table test, where you’re gradually tilted at different angles to monitor your heart’s response. Sometimes, a doctor will check your neuro-cardiovascular autonomic function to get a clearer picture of how your nervous system handles changes in posture.

    Doctors often look for signs like a significant increase in heart rate when standing up. Understanding these symptoms is important because they can overlap with behavioural issues commonly seen in autism. It’s important to work with healthcare providers who can differentiate between symptoms of POTS and autism.

    Evaluating Behavioural and Cognitive Symptoms

    Evaluating behavioural and cognitive symptoms in autism involves observing how you interact and communicate. This can include noting any behaviour problems like repetitive actions or difficulties with social interactions. It’s also vital to assess any learning or intellectual disability, as these can affect how symptoms of POTS present themselves.

    Medical professionals may use different tests to gauge cognitive abilities. By understanding your behaviour and learning patterns, doctors can better identify how POTS and autism might be influencing each other. It’s all about looking at the whole picture to ensure that you receive the right support and treatment. Working closely with healthcare providers can help manage both conditions effectively.

    Management and Interventions

    Managing POTS and autism together can be challenging, but targeted treatments can help. Strategies focus on improving both physical symptoms and mental health, ensuring a comprehensive approach. Engagement with healthcare professionals is crucial for personalized care.

    Treatment Approaches for Autism Spectrum Disorder

    When dealing with autism spectrum disorder, tailored strategies are key. Visual schedules and reminders can help with routine and predictability. Sensory-friendly environments may reduce stress by minimizing overstimulation. It’s important to consider different needs, as every individual is unique. Medication may not address core autism symptoms, but it can target co-occurring conditions like anxiety. Consistent communication with therapists and specialists ensures that current strategies remain effective and adjust as needed.

    Engagement in social skills training improves interactions and reduces social anxiety. These programs can involve role-playing and other interactive activities to develop better communication. Remember, it’s about creating a supportive environment that promotes growth and reduces distress.

    Addressing Orthostatic Intolerance and Dysautonomia

    For managing orthostatic intolerance and dysautonomia in POTS, lifestyle adjustments make a big difference. Increasing fluid and salt intake helps maintain blood volume, aiding in symptom control. Wearing compression garments can also improve circulation.

    Incorporating physical activity, such as light exercises, can improve overall cardiovascular fitness, assisting in symptom reduction. Lying down or elevating your feet when feeling faint or dizzy can bring quick relief. It may be necessary to work with healthcare providers to adjust treatments over time. Tailored physical therapy programmes could also be beneficial and should be discussed with medical professionals. Keep in mind that each person’s response to treatment varies, so finding the right combination is key.

    Therapeutic Strategies for Combating Mental Health Issues

    Mental health concerns, including anxiety and depression, are often present in individuals with autism and POTS comorbidity. Cognitive behavioural therapy (CBT) is effective for managing anxiety disorders. It helps you identify and change negative thought patterns. Medication might be prescribed for mood disorders such as depression when needed.

    Mindfulness and relaxation techniques are useful for reducing stress and encouraging mental well-being. Regular communication with a mental health professional ensures that your treatment plan is adjusted for effectiveness. Encouragement from support groups plays a role in reducing feelings of isolation and provides a sense of community and understanding.

    Future Directions in Research and Clinical Practice

    As you explore the future of research and clinical practice concerning POTS and autism comorbidity, it’s crucial to focus on promising research initiatives and the impacts they can have on clinical applications. This approach will help in developing better care strategies and addressing the needs of individuals affected by both conditions.

    Current Research Initiatives

    In the realm of research, various initiatives aim to uncover the connections between POTS and autism. Organizations like the Simons Foundation Autism Research Initiative (SFARI) are pivotal in funding studies that explore genetic links and underlying mechanisms. Identifying shared risk factors could provide insights into why some people experience both conditions.

    The SPARK study is another essential initiative. It seeks to collect a large amount of genetic data from individuals with autism, which can be incredibly useful in examining autism’s intersection with POTS. These efforts could lead to a better understanding of the genetic and physiological aspects involved.

    Researchers are also delving into neuroimaging techniques. This technology seeks to reveal how autonomic dysfunction relates to brain differences in autism. By doing so, scientists hope to better identify common pathways or abnormalities, paving the way for targeted therapies.

    Clinical Implications and Long-Term Care

    You may wonder how these research initiatives translate into clinical practice. The insights gained could revolutionize how healthcare providers approach treatment for both POTS and autism. Tailored care plans are critical, given the complexity and variability of these conditions. Early identification of risk factors can greatly enhance intervention strategies.

    Long-term care considerations are also essential. Clinics might incorporate ongoing assessments and adjustments to care plans based on evolving research findings. This proactive approach aims to improve quality of life by addressing both the immediate symptoms and potential future challenges.

    Given the promising research underway and the potential advancements in clinical practice, the future appears optimistic. Through continued effort and collaboration across research and healthcare communities, the goal is to significantly improve care and outcomes for individuals facing the challenges of POTS and autism.

    Frequently Asked Questions

    When it comes to POTS and autism, there are many interesting interactions and connections to explore. Some key areas to consider include symptom overlap, interaction with ADHD, and links with conditions like Ehlers-Danlos Syndrome.

    What are the typical symptoms of POTS when occurring alongside autism?

    People with both POTS and autism may experience dizziness, lightheadedness, and rapid heartbeat. These symptoms can often be more challenging to manage due to sensory sensitivities and communication differences common in autism.

    How do POTS and ADHD commonly interact?

    POTS can sometimes cause symptoms like inattention and hyperactivity, resembling those of ADHD. This can make it tricky to differentiate between the two conditions, as they might influence each other in complicated ways.

    What connections exist between dysautonomia and autism spectrum disorders?

    Dysautonomia includes conditions like POTS that affect the autonomic nervous system. Studies have shown a link between dysautonomia and autism, suggesting that a common autonomic dysfunction might be present in individuals with autism.

    How does Ehlers-Danlos Syndrome frequently relate to POTS?

    Ehlers-Danlos Syndrome (EDS) is a connective tissue disorder often seen with POTS. The hypermobility type of EDS is frequently associated with POTS, where symptoms like joint pain and fatigue are common.

    Can autistic burnout influence the severity or expression of POTS?

    Autistic burnout might worsen POTS symptoms, as both conditions can strain the body’s energy levels and coping mechanisms. Stress and fatigue from burnout may heighten POTS-related symptoms like fatigue and dizziness.

    Are there joint conditions that are frequently reported in individuals both with autism and POTS?

    Joint hypermobility is often reported in those with both autism and POTS, suggesting a possible connection. Conditions like Ehlers-Danlos Syndrome are notable for affecting both groups, impacting joint health and mobility.

  • From Resolutions to Real Solutions: Sustainable Growth Strategies for Single Parents

    From Resolutions to Real Solutions: Sustainable Growth Strategies for Single Parents

    Ahhh… New Year’s. A time to reflect on the past year’s achievements, cherish the memories we’ve made, and contemplate the changes we aspire to in the coming months. Cue the dreaded New Year’s resolutions. We’ve all been guilty of making them, and we’ve all been equally guilty of breaking them.

    I have a confession to make: I’ve never been a big believer in New Year’s resolutions. It seems counterintuitive to confine personal growth to a tiny window each year. Shouldn’t we strive to be better, learn more, and do better every day? 

    This holiday season has been particularly challenging. I feel like I’m in a vice that keeps tightening. Recovering financially from this season will likely take a month, and I was already depleted before the festivities even started. Between raising my special needs child on my own, dealing with unreliable child support, and facing the soaring prices of essentials, I can’t even fathom finding the energy or resources to make a resolution. 

    What I really need is to cut out things like stress, debt, excessive responsibilities, pressures, and unrealistic expectations… you know the drill.

    The Resolution Dilemma

    Despite our best intentions, studies show that about 80% of New Year’s resolutions fail by mid-February. This cycle of setting lofty goals, only to abandon them weeks later, can lead to feelings of failure and decreased motivation. And god knows, as a single parent, I don’t need to feel like a failure anymore than I already do.

    Why Do Resolutions Fail?

    We’ve all been there—setting grand New Year’s resolutions with the best intentions, only to watch them fizzle out by February. So, why does this happen?

    • Unrealistic Expectations: Sometimes, we aim too high too soon. Setting overly ambitious goals can feel overwhelming, making them tough to achieve.
    • Lack of Specificity: Vague resolutions like “get fit” or “be happier” don’t come with a clear action plan, leading to confusion and, let’s be honest, inaction.
    • All-or-Nothing Mindset: Thinking that one slip-up means total failure can be discouraging. It’s like tossing the whole cake because of one cracked egg.

    A New Approach: Continuous Growth

    Instead of boxing self-improvement into a single time of year, why not embrace continuous growth? This means setting small, manageable goals throughout the year, allowing you to adapt as life happens. By focusing on these bite-sized changes, you’re more likely to keep going and stay motivated.

    Embrace Anti-Resolutions: The Power of Saying ‘No’

    Traditional resolutions often pile more onto our already full plates. Anti-resolutions flip the script by focusing on what to stop doing, helping to reduce stress and make room for what truly matters.

    • Identify Unhelpful Habits: Take a moment to reflect on behaviors that drain your energy or time without adding value. It’s like spring cleaning for your soul.
    • Set Boundaries: Learning to say no to commitments that don’t align with your personal goals or well-being is crucial. For example, turning down extra work projects that eat into family time can lead to a more balanced life.
    • Real-Life Example: Many of us, especially those who tend to people-please, find it challenging to set boundaries. But doing so can significantly reduce stress and boost mental health. It’s about giving yourself permission to prioritize you.

    Remember, it’s not about making drastic changes once a year but about making meaningful adjustments that enhance your life every day. You’re not alone on this journey, and every small step you take contributes to a healthier, happier you.

    Micro-Resolutions: Small Changes for Big Impact

    Let’s face it, massive resolutions can be daunting. That’s where micro-resolutions come in—tiny, specific, and totally doable goals that, over time, lead to significant improvements.

    • Define Micro-Resolutions: Think of your big goals and break them down into bite-sized, actionable steps. It’s like turning a mountain into a series of small hills.
    • Benefits: These small tweaks are less intimidating and easier to stick with, making it simpler to build habits that last. Plus, each little win boosts your confidence to tackle the next one.
    • Implementation Tips: Start with simple actions, like adding an extra glass of water to your daily routine or setting aside 10 minutes each night for reading. Over time, these modest habits can lead to substantial personal growth.

    Seasonal Goal Setting: Why January Isn’t the Only Time for Change

    Who says you have to wait until January to make a change? Setting goals that align with different seasons of your life can lead to more natural and sustainable growth.

    • Seasonal Opportunities: Each time of year offers unique chances for growth. For instance, the ‘Winter Arc‘ encourages setting goals during the early winter months to establish routines before the new year begins.
    • Flexibility: Set goals when it feels right for you, not just because the calendar says so. This personalized approach can lead to more meaningful and lasting change.
    • Personal Story: Some folks find that starting new habits in the fall, when routines are re-established after summer, leads to greater success. It’s all about finding what works best for you.

    The ‘Not-to-Do’ List: Prioritizing Well-being by Eliminating Stressors

    Sometimes, it’s not about adding more to your plate but about taking things off. Creating a ‘not-to-do’ list can be as powerful as a to-do list, helping you focus on what truly matters.

    • Identify Stressors: Take a good look at your daily routines and pinpoint activities or habits that cause unnecessary stress or don’t contribute to your well-being. It’s like decluttering your mind.
    • Benefits of Elimination: Removing these stressors can lead to improved mental health and a greater sense of control over your life. Less chaos, more peace.
    • Steps to Create a List: Reflect on your obligations and identify at least three things you can stop doing to improve your quality of life. Then, give yourself permission to let them go.

    Remember, it’s not about making drastic changes once a year but about making meaningful adjustments that enhance your life every day. You’re not alone on this journey, and every small step you take contributes to a healthier, happier you.

    Special Considerations for Single Parents and Parents of Children with Special Needs

    As a single parent raising a child with special needs, I know firsthand the unique challenges that come with balancing daily responsibilities, emotional well-being, and your child’s specific requirements. It’s a journey that demands flexibility and resilience—and sometimes lorazepam.

    Flexible Goal Setting

    Setting adaptable goals is crucial when each day can bring new surprises. Here are some strategies that have worked for me:

    • Prioritize Tasks: Focus on what’s most important first. This way, even on the busiest days, the essentials are covered.
    • Set Realistic Expectations: Recognize your limits and avoid taking on too much. Achievable goals help prevent burnout and keep you moving forward.
    • Break Down Goals: Divide big objectives into smaller, manageable steps. This makes progress more visible and less overwhelming.

    Self-Care

    Taking care of yourself isn’t a luxury; it’s a necessity. Prioritizing self-care enhances your well-being and equips you to better support your child. I know, I know, who’s got time for self-care? Well, even the smallest adjustment can make a big difference. Here are some tips that have been helpful:

    • Schedule ‘Me Time’: Set aside specific times for activities that rejuvenate you, whether it’s reading, exercising, or enjoying a hobby. Even a few minutes can make a difference. For example, I used to love to read. Like, three-books-a-week kind of read, but since kiddo, who has the time? Listening to audio books as I multi-task is now my saving grace.
    • Practice Mindfulness: Incorporate mindfulness techniques, like deep breathing, meditation—screaming into a pillow works for me—to manage stress and maintain mental clarity. These small practices can help center your day. 

    Support Systems

    Building a reliable support network, aka “finding your tribe,” is crucial. Here are some ways to establish and maintain support systems:

    • Join Support Groups: Participate in local or online groups for single parents or parents of children with special needs. These communities offer a sense of belonging and practical resources.
    • Utilize Community Resources: Explore services such as respite care, counseling, or financial assistance programs available in your area. Don’t hesitate to reach out; these resources are there to help.
    • Communicate Openly: Keep the lines of communication open with family and friends. Express your needs and accept help when it’s offered. Remember, asking for assistance is a sign of strength, not weakness. 

    Navigating this path isn’t easy, but with adaptable goals, self-care, and a strong support system, you can create a more manageable and fulfilling life for both you and your child. You’re not alone on this journey, and every step you take is a testament to your strength and dedication.

    30-Day Anti-Resolution Challenge

    To make life easier for you, I’ve put together a handy-dandy 30-Day Anti-Resolution Challenge to help you subtract what’s not working in your life. Personalize this template so it works for you.

    1. Day 1-5: Declutter Your Space: Remove physical clutter from your environment to create a more peaceful and organized living area.
    2. Day 6-10: Digital Detox: Limit screen time, especially on social media, to reduce mental clutter and enhance focus.
    3. Day 11-15: Simplify Your Schedule: Assess your commitments and eliminate non-essential activities that cause stress.
    4. Day 16-20: Financial Cleanse: Review your expenses and identify areas where you can cut back to alleviate financial pressure.
    5. Day 21-25: Self-Care Routine: Incorporate daily self-care activities, such as meditation, exercise, or hobbies you enjoy.
    6. Day 26-30: Reflect and Adjust: Reflect on the changes you’ve made, assess their impact, and adjust as needed to maintain a balanced lifestyle.

    Creating a Life of Continuous Growth: Your Path to Daily Joy

    Embracing continuous growth and focusing on eliminating stressors can lead to a more fulfilling and manageable life, especially for single parents of children with special needs. By setting flexible goals, prioritizing self-care, and building strong support systems, you create an environment conducive to personal well-being and effective parenting.

    Remember, it’s not about making drastic changes once a year but about making meaningful adjustments that enhance your life every day. You’re not alone on this journey, and every small step you take contributes to a healthier, happier you.

  • Understanding ARFID: A Guide for Parents

    Understanding ARFID: A Guide for Parents

    Ever tried convincing a cat to take a bath? That’s what mealtime felt like with my daughter. For years, I chalked up her eating habits to typical picky eating. There was the year she would only eat Microwave Kraft Dinner, not regular Kraft Dinner—and it had to be the “Three Cheese” variety, not the regular one, followed by the year of hotdogs, cheese strings and chicken nuggets. 

    You get the idea. Little did I know, we were grappling with Avoidant/Restrictive Food Intake Disorder (ARFID), a condition that turned our dining table into a battlefield.

    What is ARFID? Understanding the Disorder Beyond Picky Eating

    So, what’s ARFID? Imagine a world where food isn’t just unappealing—it’s downright terrifying. Unlike your average picky eater who might turn their nose up at broccoli, individuals with ARFID experience intense anxiety around certain foods, leading to a severely limited diet. It’s not about being difficult; it’s about genuine fear and discomfort. 

    For my daughter, the “feel” or texture of specific foods, their smells, spiciness, or even temperatures can cause feelings of revulsion, which often leads to gagging, throwing up, and tears.

    Debunking Myths: ARFID vs. Picky Eating – What’s the Difference?

    Let’s set the record straight: picky eating is a phase; ARFID is a disorder. Picky eaters might refuse spinach today and devour it tomorrow, or they will give in with time and persistence. Those with ARFID have a consistent aversion that can lead to nutritional deficiencies and social challenges. 

    It’s not a choice or a quirk—it’s a serious issue that needs understanding. And for the love of the goddess, don’t blame the parents and suggest they should force-feed their children. It might work in the short term, but you’ll only be adding to their trauma and anxiety and creating more problems in the long run. Oh, and they’ll likely never trust you again…so there’s that.

    From Kitchen Nightmares to Lightbulb Moments: Recognizing ARFID in Children

    Picture this: I subscribed to a fancy cooking kit, thinking exotic recipes mailed to our doorstep each month would entice her. Spoiler alert—she loved cooking but wouldn’t touch the food. After countless failed attempts and a mountain of uneaten meals, the lightbulb finally went off: This wasn’t just picky eating; it was something more. Here are some signs your child might have ARFID:

    • Menu Monotony: If your kid’s diet makes a monk’s look adventurous, sticking to the same few foods day in and day out, it might be ARFID.
    • Nutritional Nosedive: Noticing your child looking more like a wilted lettuce than a vibrant veggie? Fatigue, dizziness, or stunted growth could be red flags.
    • Weight Woes: If the scale’s stuck or moving backward despite your best efforts, and your child isn’t growing as expected, it’s worth a closer look.
    • Sensory Snubs: Does your child treat certain textures, tastes, or smells like they’re toxic waste? This extreme aversion isn’t just being fussy.
    • Fear Factor: Is your child convinced that eating will lead to choking, vomiting, or other disasters, even without past trauma? That’s more than just nerves.
    • Mealtime Meh: If getting your child to eat feels like pulling teeth, and they show zero interest in food, it’s a sign something’s up.
    • Social Sidestep: Avoiding birthday parties or family dinners because of food? When eating habits start dictating social life, it’s time to pay attention.

    The Emotional Rollercoaster: Coping with ARFID and Autism in the Family

    Navigating ARFID alongside autism? It’s like juggling flaming swords while riding a unicycle. The constant worry about her health, coupled with unsolicited advice from well-meaning (but clueless) folks, was overwhelming. But understanding that her eating habits weren’t a choice allowed me to approach mealtimes with empathy and a dash of humour. Here’s a list of more challenges faced when your kiddo has ARFID:

    1. Lunchbox Dilemmas: Managing ARFID in School Settings

    Packing lunch became a daily game of “Will She Eat It?” Spoiler: she usually wouldn’t. The fear of her going hungry or facing judgment from peers was ever-present. Collaborating with school staff to ensure she had access to safe foods was essential, even if it meant becoming “THAT” parent. 

    And the constant reminders to sign up and pay for pizza day? Why spend money when it’s not the specific type of pizza she’ll eat? That’s one good thing about ARFID: you’ll spend less on hot lunches at school.

    2. Sleepover Survival Guide: Preparing for ARFID Away from Home

    Sleepovers should be fun, right? Not when you’re packing a cooler full of “safe” foods and giving other parents the ARFID 101 crash course. Explaining her eating habits often led to raised eyebrows and awkward silences. But hey, at least she didn’t starve. And she got some much-needed social interaction, although THAT didn’t always go as planned. But that’s a topic for another blog.

    3. Growth Charts and Grocery Lists: The Health Impact of ARFID

    Her limited diet had me on a first-name basis with her pediatrician. And that wasn’t necessarily a good thing since I didn’t really like the man, and he most certainly didn’t like me. That’s another thing you’ll find as you balance the many nuances of autism parenting and co-existing conditions like ARFID. Often, you’ll know more about your kiddo and their struggles than the “supposed” experts. 

    This can be infuriating. 

    Luckily, I had specialists to fall back on, and their support and validation gave me the strength I needed to fire him. Trust me, that was the right decision, and our GP stepped in and is doing a fantastic job—all without the constant old-school and somewhat sexist judgment from his predecessor.

    Monitoring your child’s growth and ensuring she got the necessary nutrients when dealing with ARFID felt like a full-time job. When your kiddo only eats a specific brand of her “approved” foods, shopping trips often become scavenger hunts, requiring trips to three or four different stores to make sure you can find everything she’ll eat.

    Regular check-ups and consultations became our norm, highlighting the importance of the right kind of professional guidance in managing ARFID.

    Trial and Error: Our Attempts at ARFID Management

    I tried it all: tough love, sensory play, and bribery (don’t judge). Some methods brought small victories; others were epic fails. The journey was a rollercoaster of hope and frustration, teaching me that progress isn’t linear and that sometimes, you just have to laugh to keep from crying. Here are some strategies recommended by experts that worked (and didn’t) for us.

    • Baby Steps with New Foods: Introduce new foods at a snail’s pace. Start with a microscopic nibble and gradually work up to a full bite. Rome wasn’t built in a day, and neither is a diverse palate.
    • Sensory Shenanigans: Turn mealtime into a sensory playground. Let your child squish, sniff, and even play with food. Engaging their senses can make unfamiliar foods less intimidating.
    • Routine Rules: Establish a mealtime routine that’s as predictable as your morning coffee (or hot chocolate for my fellow coffee haters). Consistency can create a safe space for your child to explore new foods without the element of surprise.
    • Positive Vibes Only: Celebrate every tiny victory like they’ve won an Olympic medal. Positive reinforcement can encourage more adventurous eating. Just remember, no pressure—nobody likes a food drill sergeant.
    • Therapy Tag-Team: Consider enlisting the help of a professional, like a feeding therapist or psychologist. Sometimes, it takes a village—or at least a trained expert—to navigate the ARFID maze.

    We’ve tried everything mentioned above, some with more success than others. For us, a mealtime routine and a specific place to eat worked wonders. Incorporating her preferred foods into balanced meals or forcing her to try new foods? Not so much. This resulted in spending money I didn’t have on food that got wasted.

    Throughout the process, I learned that patience, positive reinforcement, and a well-timed joke worked wonders. And when all else failed, McDonald’s was a reliable backup.

    Walk a Mile in Our Shoes: Seeking Empathy for Families Facing ARFID

    Living with ARFID is like navigating a minefield blindfolded. Judgment and unsolicited advice only add to the challenge. A little empathy goes a long way. Before you suggest “just making her eat,” try understanding the complexities we face daily.

    Support isn’t about offering solutions; it’s about listening without judgment. Educate yourself about ARFID, offer a helping hand, or simply be there. Creating an inclusive environment where individuals feel understood and accepted is invaluable. Trust me, after years of raising a kiddo on the spectrum, this kind of acceptance is still hard to find, yet it is so appreciated.

    Reflecting on Our ARFID Journey: Lessons Learned and the Road Ahead

    Our journey with ARFID has been a mix of tears, laughter, and a lot of McDonald’s takeout. (I can feel you judging me—stop it)! Understanding the disorder empowered me to advocate for my daughter and seek appropriate support. It’s a continuous learning process, but one filled with hope and resilience.

    Sharing our story is a step toward building a community of support and understanding. I invite others to share their experiences, ask questions, and foster a compassionate dialogue around ARFID and its impact on families. Let’s navigate this journey together, one bite at a time.