I discuss the physical and mental health conditions that often exist alongside autism.
Topics discussed also include:
If you'd like to know more about topics discussed in this episode, check out:
"Umbrella Systematic Review of Systematic Reviews and Meta-Analyses on Comorbid Physical Conditions in People With Autism Spectrum Disorder" by Rydzewska et al.
"Prevalence of Comorbid Psychiatric Disorders Among People With Autism Spectrum Disorder: An Umbrella Review of Systematic Reviews and Meta-Analyses" by Hossain et al.
"Autism Spectrum Disorders and ADHD: Overlapping Phenomenology, Diagnostic Issues, and Treatment Considerations" by Antshel and Russo
"Prevalence of Autism Spectrum Disorder and Attention-Deficit Hyperactivity Disorder Amongst Individuals With Gender Dysphoria: A Systematic Review" by Thrower et al.
"Autism Medical Comorbidities" by Al-Beltagi
Episode intro and outro music: "Autumn Leaves" by Maarten Schellekens (no changes or modifications were made)
Theme music: "Everything Feels New" by Evgeny Bardyuzha.
All episodes written and produced by Kristen Hovet.
To submit a question to possibly be answered in a future episode, please email firstname.lastname@example.org
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Happy New Year, everyone.
Thank you for your patience in waiting for me to get this season underway. A little update before we get going: The Other Autism podcast is now listened to in 41 countries. So I just want to say a huge thank you to the listeners. This is unbelievable. And this podcast has been one of the best parts of 2022. I mean that very, very literally. Also, I've received some truly touching emails from listeners, and they just make my heart so full. Thank you for taking the time to write me. And thank you so much for your words of encouragement. They mean more than you know. I also wanted to acknowledge, and I'm saying this based on emails I've received from listeners, I wanted to acknowledge that I know how tough this journey can be, specifically the journey towards diagnosis, and connecting all the dots and then putting the pieces together once you do have a diagnosis. Know that you're not alone and know that the journey is worthwhile, though it might not seem like it when you're in it.
I don't know about you, but 2022 was rough, for many reasons. In December, we're talking about actually exactly one month ago, my little brother, Jamie, who was five years younger than me, passed away. I dedicate this season to him.
Now I'm starting off the season a bit differently than I planned. If you receive my website updates from other dash autism.com, you'll know I was going to start with the first interview guest of the series, but that episode is still in the works. So today I'm answering a listener question about co-occurring conditions and autism. For some this might be a heavy or triggering topic. It's a lot to absorb and think about. It certainly was for me, so please take care. In the first episode of the first season, I talked about autism, food intolerances and mast cell activation syndrome. I also briefly discussed hypermobile Ehlers Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome, often shortened to POTS. P O. T. S. Ehlers Danlos is a connective tissue disorder that presents in 13 possible subtypes and POTS is an autonomic dysfunction. All of these conditions are known to frequently exist alongside autism, more so than in non autistic populations. If you missed that episode about mast cell activation, food intolerances, be sure to check it out. Again, it's the first episode from last season.
Why is it important to talk about conditions that occur or exist alongside autism? Well, some people find their way to autism diagnosis after first being diagnosed with other conditions or sets of conditions. Some doctors and specialists might see a pattern of diagnoses and suggest an autism assessment. Or perhaps the other way around. Autism might come first which might prompt looking into other conditions. For some they've been on long diagnostic journeys, often called diagnostic odysseys, and not just with autism. Getting the full picture helps autistic people get the care and support that they need. I've been made aware that some are really against talking about anything medical related when it comes to autism. And one person even reached out to me after that first episode, to say that they don't believe in co-occurring conditions and autism. They just don't believe in them. To them simply talking about this suggests or implies that autism itself is a medical condition. Well, my response is, this is reality. Autism is associated with several medical conditions. I'm not going to deny reality because it's uncomfortable. Another person wrote to say that, in their opinion, all conditions associated with autism are a result, like a direct result, of prejudice, ableism, inequalities, other unique psychosocial stresses that autistic people experience over their lifetimes, and so on. While I don't at all deny that autistic people often have stress related conditions, and that some conditions can be triggered by stress, it's a known fact that several of the co-occurring conditions are genetic, or have strong genetic influence in terms of either genetic predisposition, or genetic determination. That's fact, like medical, scientific fact. I don't think denying this helps anyone. You can have that opinion, and that's super cool, but it's not going to influence what I talk about, like dude, I'm in research communications, and I'm doing a Master of Health Studies. You're not going to get me off this topic anytime soon.
What's another reason to discuss co-occurring conditions and autism? Well, from my perspective, as a bonafide research nerd, and health enthusiast, it's just really interesting to explore this topic. At least it really is for me, and I hope it is to at least some of the listeners of this podcast. I tend to see autism as a neutral neurological difference. We're simply different, not better than others, not worse than others, just different. I'm not one of those who thinks of autism as a superpower, though I'll proudly report the strengths and abilities associated with autism. And I'm definitely not one who embraces the medical model of autism either. That said, I do know for a fact that autism presents several difficulties for people in several areas of their lives, and to varying degrees depending on the person. Autism especially presents unique challenges in a world that's built to best accommodate non autistic brains. Therefore, you could say my thinking is most aligned with the social model of autism. If anyone's interested in exploring any of these kinds of topics in more detail, like the social model of autism and how that came about, let me know. My email address is in the show notes. All right, then.
Co-occurring conditions are so common that it's safe to say that most autistic people have some form of co-occurring physical and or mental health conditions. Ewelina Rydzewska and her team conducted an umbrella systematic review of other systematic reviews and meta analyses and found that physical conditions more prevalent in autistic people than non autistic people include sleep problems, epilepsy (especially in autistic females), visual impairment (including nearsightedness, farsightedness, astigmatisms), obesity, atopic dermatitis, allergic rhinitis, and auto immune disorders (such as hypothyroidism, type 1 diabetes, rheumatoid arthritis, and psoriasis). These researchers note that there are likely many other co-occurring conditions with autism, but that there are only certain conditions that have been appropriately and rigorously studied, such as the ones they've mentioned in their own study, cited here. So in that case, we're probably going to learn about a lot of others in coming years.
And now for mental health conditions. Mahbub Hossain and his team conducted an umbrella systematic review, also of other systematic reviews and meta analyses, and found that mental health conditions more prevalent in autistic people than non autistic people include anxiety disorders, depressive disorders, bipolar and mood disorders, schizophrenia spectrum, suicidal behavior, attention deficit hyperactivity disorder, obsessive compulsive disorders, Tourette syndrome and other tic disorders, post traumatic stress disorder, and eating disorders, among others. In some of the reviews they looked at, personality disorders and substance use disorders were more common in autistic populations than in non autistic popular patients. Elsewhere, however, it's been reported that many autistic people are misdiagnosed with personality disorders and other mental health conditions that have characteristics best attributed to autism alone.
What is clear from Hossain and his team's study, however, is that autistics are very, very clearly more burdened by mental health challenges than non autistics. The researchers also noted that many studies they looked at showed higher prevalence of mental health conditions in autistic adults compared to autistic children and youth. One implication of this, they state, is that the continued burden of psychosocial stressors throughout the life course may add up over time to result in these mental health diagnoses. This, they say, means that the focus needs to be on preventive measures for autistic children and adolescents. In other words, start preventing it as soon as possible. They cite an unmet need for preventive and therapeutic mental health resources for autistic children and teens, which has only added to the occurrence and severity of mental health challenges in these populations. I'll also add that growing up with medical conditions or physical disabilities exacerbates or directly leads to the development of certain mental health conditions, such as post traumatic stress disorder, depression, and so on.
Some research I want to highlight is the research showing a very strong overlap between autism and ADHD (attention deficit hyperactivity disorder). Kevin Antshel and Natalie Russo state that autism and ADHD are both increasing in prevalence, and they're commonly seen together. That said, they say that while there's so much overlap, and so many similarities between the two conditions, including some sensory challenges or differences, executive functioning challenges, and also social functioning challenges, they are still two separate diagnostic categories. They're both sufficiently distinct to warrant having separate diagnoses. So this means a lot of things. For one, those who were diagnosed with ADHD as children and they weren't assessed or diagnosed with autism may want to consider being assessed for autism as adults. And just anecdotally, it might explain, you know, there's such an overlap between even socially, like I tend to befriend a lot of others who end up also being autistic or otherwise neurodivergent, including those with ADHD or learning disabilities or dyslexia is another one, Tourette's, etc.
I also wanted to talk about the overlap between autism and being trans. So many researchers and clinicians have noted a strong overlap between being autistic and being trans. If you're autistic, you're more likely to be trans. And if you're trans, you're more likely to be autistic. So much so that if you're trans, many say that, if you haven't already, you should be assessed for autism. Some have noted an overlap also with ADHD, but that's less studied, I believe, and definitely more is known about the overlap between autism and being trans. So in a study by Emily Thrower and her team, they conducted a systematic review and, in the studies they looked at, there was an autism prevalence of six to 26% in transgender populations, which is definitely higher than the general population [between 0.1% and 2%]. The variation between the prevalence percentage here can be explained by the different diagnostic tools they were using, and the different determinants that they were using in the studies, that the various studies that this group was looking at, were using. That said, they state that, generally, the evidence they found looking at autism and the transgender community was actually of low quality. So they suggest that more research needs to be done looking at the prevalence, more rigorously designed studies looking at this topic. Emily Thrower and her team conclude that, quote, individualized treatment and design of healthcare services for transgender individuals should consider assessment for and management of both ASD and ADHD in their protocols for gender affirming care, end quote. And, of course, ASD is their abbreviation for autism spectrum disorder. So all that to say there does appear to be a strong overlap. However, if we really, really want to confirm this, there needs to be higher quality research that includes control groups.
In terms of studies that have looked at autistic children and co-occurring conditions, Al-Beltagi notes that conditions such as fragile X syndrome, Duchenne muscular dystrophy, and tuberous sclerosis complex, among others, are more common in autistic children. Autistic children are also more likely to have cerebral palsy, migraine or severe headaches, and congenital abnormalities of the nervous system. 80% of autistic individuals, children included, have sleep problems or disorders and 50 to 80% of autistic children have chronic gastrointestinal problems. These can include chronic constipation or diarrhea, gastro-esophageal reflux, nausea and or vomiting, bloating, abdominal discomfort, inflammatory bowel disease, and or failure to thrive. Many inborn errors of metabolism have also been observed in autistic individuals.
Al-Beltagi notes that children who are in good health have an easier time learning. For this reason, it's so important that thorough testing is done for autistic children to get a full picture of their health status. This should be done as early as possible. You can imagine that a child who's struggling with allergies or bad headaches or chronic stomach pain will not learn as well or as easily as their peers who do not have to endure these constant physical disturbances. And this is on top of, you know, everything that comes with being autistic, including sensory differences. And those sensory differences, man, they suck sometimes in real big ways, especially in today's learning environments! Typical schools are kind of painful for a lot of autistic children. While many of us enjoy school and being around our peers, if our peers are nice and chill, the physical surroundings are just sometimes really too overwhelming. So consider that. Consider the most annoying or painful sensory things you've experienced, if you're not autistic. Just think of those things, those kind of scenarios, or those kind of feelings are every day for an autistic person, for many autistic people anyway. Now add to that these physical conditions, these medical conditions, allergies, gastrointestinal pain and problems and nausea, like it's very, very distracting. It's very disruptive. For some, I think it even underlies what we think of, what we see as, you know, oh, they're struggling with executive function, or they're struggling to pay attention, or they're struggling with learning this, that, or the other thing. A lot of it goes down to what's going on in the body. The brain, in many, many cases, could do just fine without these other things going on. Reduce the pain, the discomfort, reduce the sensory stimuli, the aggravating sensory stimuli. Get to the bottom of those things and you've solved so many of the difficulties, right out of the gate.
And for me, personally, as someone who does have other diagnoses besides being autistic, I have sort of a weird, or I guess, more conflicted is the better term, conflicted relationship with these co-occurring conditions. What do I mean by that? I guess, um, actually, a pretty huge part of my identity is just having been sick for a lot of my life, or having a lot of medical drama, I guess is what I call it, starting from the first years of my life, and even the first days and months of my life. I was born with club feet and had surgery as a baby for that, and physiotherapy and casts and special shoes and like a foot leg brace thing and was born with colic. And so I was screaming for, like, the first six months of my life and I remember having awful, awful stomach pains as a kid and just awful physical pains. I would have all these kind of nervous things, like biting the inside of my lips until, you know, I have like scar tissue from doing that. And these things, I kind of always tried to hide them. I wasn't very open about what I was experiencing, I guess because it was what I knew. And then I grew up to have a lot of strange reactions to foods and medications and was diagnosed with celiac and then mast cell activation issues and then hypermobile Ehlers Danlos. Before being diagnosed with Ehlers Danlos, before being diagnosed as autistic, I was diagnosed with cancer. So yeah. And even before that, I had gallstones, I had a really awful experience when my son was born, which I, it's too triggering to even talk about.
It seems like every few years, knock on wood, it seems like every few years I've had something and so that's just really part of my identity. And it's unclear like how much of that is related to being in this, you know, autistic body. And I have gotten more open about my medical challenges. But still, it's not something that I go into great detail about usually. There's like a few people on this earth who know a lot of the detail about what I've experienced, medically. I don't know exactly why that is. I guess it has something to do with, like I said, that's always been something I've known. I've always known that I'm going to have physical challenges, I'm going to have medical challenges, I'm going to have illnesses and weird things that other people don't seem to have as often, and that's just been a part of my existence. And also I was raised in a culture and in a family where you it's not cool to complain. It's not really acceptable, you just kind of like put your head down and you deal with it. So there's a few things going on. And also, I don't like people feeling sorry for me. I don't like that look of pity that people get. And I guess that's pride and also just not wanting to be seen as primarily an ill person or a sick person. And the other part of it is, like, my personality is one where I'm a very optimistic, positive person, despite all the things that have gone on in my life. I have gotten through, I think, in large part because I've just been like, you know, there's always the silver lining and gonna get through this, and it's gonna get better. And I've also experienced so many amazing things like truly, truly amazing things. And, you know, my primary mode, or my primary feeling going through life is one of gratitude. And one of just being in awe of life and of people and beauty. And I'm sounding totally silly right now, but that's the truth. I feel like the positives have far outweighed the negatives. I don't want to be seen as this sick, sad person who deserves pity or extra attention. I feel like I'm a strong person. And I feel like I am totally privileged and blessed. And I have had the privilege of meeting some of the most amazing people ever. I'm extremely grateful for my job and the people I work with, and my friends, my family. So it's hard. It's hard for me to talk about these medical challenges. It was hard for me even to record this podcast because I find the topic itself challenging. Clearly, there's, you know, some things I still have to process.
But, all told, I want to make it clear that, even though autistic people often have these co-occurring conditions, and it's going to be different for each autistic person, they're going to have like, I mean, I think a rare few don't really struggle with medical conditions, but most of them do. And also a huge, huge portion of autistic people struggle with mental health challenges, sometimes chronic, sometimes those challenges come and go. But we often are still able to live beautiful, amazing lives. And a lot of that has to do with the people around us and the social structures in place to support us. So, even, I want to say in spite of our challenges, but sometimes even because of them. I've made some connections with others, I've found direction in life based on my experiences. I'm in a job that I probably wouldn't be in had I not had some of the experiences I've had in medical challenges and seeing some of the difficulties that people have experienced medically. And I always can say, like, I'm lucky, I'm one of the lucky ones. I have a body that is healthy right now, generally speaking, in spite of having some of these, you know, weird conditions and things like that, that baffle me sometimes and get in the way sometimes and make life hard sometimes. I'm still able to walk around, I'm still able to exercise, I'm able to travel, I'm able to go hang out with friends and family, most of the time when I want to, I'm able to drive and, you know, do all of these things. So that's what I focus on is what I can do. So I want to provide that perspective. It's one that not everyone's going to agree with, and that's okay. I just wanted to share that though. This one was oddly hard to talk about. I didn't expect that really, but anyhoo.
That's all I have for you today. Thank you so much for being here.
Until next time, bye.