Posted in information, musings

POTS: adding another diagnosis to the stack

Shortly after things closed down for the pandemic back in March, I was biking on the stationary bike in the garage (since I was no longer biking to commute to work, since I was now working from home) when I started feeling very lightheaded, shaky, and queasy. It was similar to, though more severe than, the times I’ve had low blood sugar events, so I decided to eat something and rest; I don’t think the eating helped very much, but the rest certainly did.

I would have written this off as dehydration, not eating enough, biking at too high of an intensity, or so on if it hadn’t initiated chronic lightheadedness, dizziness, and fatigue. On good days, I would get a rush of lightheadedness when standing up; on bad days I would have lightheadedness just from sitting upright, reading aloud, or singing, and fatigue from just walking around the house interacting with the kids. But I could always just argue that it was one or two bad days, and that it isn’t that abnormal to get dizzy when standing up. Maybe it was just the hot weather arriving and I needed to drink more water… but I didn’t seem dehydrated otherwise.

My family finally convinced me to see a doctor after this had continued for just over a month, and because my EKG at the primary care office had an abnormality (and all my lab work was normal), I ended up seeing a cardiologist who ran a variety of tests and diagnosed me with Postural Orthostatic Tachycardia Syndrome (POTS for short).

I’d never heard of it before, so I’m guessing most of you probably haven’t either. Here’s how it works (in abbreviated terms!). Normally, when a person stands, the brain triggers the autonomic nervous system to constrict blood vessels in the lower part of their body to help blood return to the heart, and at the same time tells the heart to beat faster to help pump that blood against gravity up to the brain. In POTS, the heart beats faster like it should, but the something goes wrong with the autonomic nervous system and the blood vessels don’t constrict the way they should. The brain, not getting the oxygen it expects, continues to send out ever more frantic messages to the heart and the nerves – and so the heart ends up beating faster and faster since the nerves aren’t responding.

What does that look like for me? Well, on a good day, my heart rate will go from mid 70s when sitting to 100-110 when standing, and stay that high even after the initial rush of lightheadedness passes. On a bad day, it will go up into the 150s just from standing. It makes standing very tiring… cooking a meal for the kids or washing dishes after a meal can be one of the hardest parts of the day because of the time spent just standing in the process. Interestingly, walking can be easier to handle than standing, because the movement of the leg muscles helps push the blood back to the heart despite the lack of assistance from the ANS. In addition to the tachycardia, which is the primary symptom that defines the syndrome, I may have chest pain, lightheadedness, dizziness, fatigue, headaches, nausea, body aches, tingling arms and/or legs, and feelings of clumsiness and/or muscle weakness.

Unfortunately, medicine hasn’t yet determined the cause of POTS or a reliable treatment for it. The primary recommendations are to wear compression socks/stockings (to help push the blood back up), exercise (to strengthen the skeletal muscle that can help push the blood back up), and drinking tons of water and eating lots of salt (to avoid dehydration and also increase overall blood volume). There are also a lot of medications that can be prescribed off-label that help some people, but while my cardiologist prescribed one for me he didn’t realize it was contraindicated by other aspects of my medical history so for now I’m trying to manage with the home remedies.

So, the last few months I’ve been mentally processing this during my free time, instead of spending my extra energy thinking and creating and writing for the blog. It doesn’t help that the amount of extra energy I have has been depleted both by the POTS itself as well as by trying to learn a new dance of pushing toward growth without triggering a crash. In a way, it’s similar to the balancing act of living with autism in a neurotypical world, but with a new set of triggers and symptoms (as well as some overlaps; bad POTS days definitely make me more sensitive to sensory input). But I think I’m finally ready to emerge from this hibernation! I’ll probably write a few more articles about POTS, as this is really just a brief introduction, but I also have so many amazing hikes to tell you about from this summer, and so much learning to share as the kids have started our homeschool program for the year. Thanks for still being here to share this little corner of the Internet with me 🙂

Posted in family life, information, musings

responding to an autism diagnosis

We received Rondel’s clinical report today, with his official diagnosis of autism spectrum disorder. It was definitely not unexpected, and in many ways it is a huge relief to finally have it on paper with a physician’s signature and notes.

But it is also very hard to read through the report and take in the medical assessment of my child, who I see in all his brilliance and originality and intelligence, and who is being evaluated in light of his struggles and deficits. It is the very embodiment of the pathology paradigm, particularly given the list of recommendations at the end of the report that includes ABA, a therapy that is consistently attacked by autistic adults who experienced it as children. It reminded me of why we used the NODA app for diagnosis in the first place: so that Rondel wouldn’t need to be exposed to the pathology mindset, but would still be able to obtain a diagnosis for support, self-advocacy, and understanding. I just forgot that I as the parent would still have to deal with all of that negativity on his behalf, and buffer him against it.

In an ideal world, doctors could still assign the autism label without calling it a disorder. There are definite differences between the way the autistic mind functions – in the way it perceives the world, in the way it processes information, and in the way it prefers to interact with other people and objects – and the way the majority of minds (neurotypical minds) function. What people often miss, including doctors and therapists, is that the autistic wiring comes with its own unique strengths as well as its own unique weaknesses. A diagnostic process that sought to exist within the neurodiversity paradigm rather than the pathology paradigm could look for examples of both these strengths and these weaknesses, to generate a complete picture of the individual, and to help develop specific plans of support for the individual. In other words, for example: you have autism, and so you struggle with sarcasm and implied humor, you have difficulty reading facial expressions, social interactions and small talk take a lot of energy because of how hard you have to work to keep up and fit in, and certain noises and smells make you want to curl up into a ball or run away – but you also have a mind like a steel trap, the ability to make connections between information and ideas, unique ways of solving problems, and intense loyalty towards the people you are attached to. How can we craft your daily routine to take advantage of your strengths without putting too much pressure on you in your areas of weakness? That would be useful and practical support, without pathologizing the condition.

The pathology paradigm shows up in other places than the medical profession, though. Even a shift in the diagnostic process would take a while to seep through the culture – and until the culture changes, a diagnosis of autism is still going to be met by attempts to sympathize over the tragedy of it, doubt (because your child doesn’t look like he has autism), pseudoscientific “cures”, and even blatant disbelief.

What I wish I could tell everyone I know is that I am not sad or upset at all by Rondel’s diagnosis. His mind is different, and it is different in a beautiful and wonderful way. Will he struggle in a neurotypical society because of those differences? Probably so. But with love and practical support, he can also flourish and give to the world using his unique gifts and talents. He has the focus and the interest to immerse himself deeply in a topic and absorb everything there is to know about it. He has the imagination to see past the status quo and envision new ways of being and doing. And he has support around him to help develop his emotional awareness and executive functioning (two things that were a struggle for me well into adulthood).

What I wish everyone knew is that autism doesn’t just look like one thing. It might look like a mostly non-verbal ten year old communicating in one or two word phrases, dumping out every toy box and taking apart every Duplo tower, standing with the outdoor curtains blowing against his cheek to calm his body down, dancing to his favorite music videos, wanting to be part of the social action around him even as it overwhelms him. It might look like a very verbal twelve year old swinging endlessly because the sensation is so enjoyable, singing the same made-up song over and over again because the repetitive loop is comfortable and fun and transitioning to something else is hard, identifying what day of the week any date falls on, and communicating the love of God in profound and beautiful words. It might look like a four year old melting down because the color he used on his picture doesn’t look the way he expected, talking nonstop to manage auditory input, mimicking the meter and pattern of books and songs in his own games with new characters and situations, wanting a parent to snuggle with him every night at bedtime, or demanding animal documentaries at every possible moment. It might look like an adult struggling to focus on assigned tasks at work because their mind is stuck on other less-prioritized projects, getting into arguments with their spouse because of missed non-verbal cues, falling apart at movies because the emotions and sensations are just too strong and overwhelming, crying because they are running fifteen minutes later than they wanted, or developing a new system of project tracking for their lab from scratch and becoming a source of expertise without formal training because of their analytical skills and desire to learn.

Labeling all of those individuals as autistic helps them to obtain the support they need for the shared weaknesses that accompany the condition (weaknesses partially but not entirely due to living in a neurotypical society), but it doesn’t predict what they will do with their strengths and how their lives will play out. We are just as unique as neurotypical individuals in that regard! I believe – and this is why I think the neurodiversity paradigm is so critical – that if we can stop thinking of neurodivergence as disordered we can create better conditions for autistic and other neurodivergent individuals, a culture where all people can receive support in their areas of weakness and be given the opportunity to explore, develop, and contribute in their areas of strength.

What I wish everyone could see is that the autistic way of seeing and perceiving the world is also beautiful. That a person’s thoughts and feelings are equally valid whether they prefer to speak them, write them down, sign them, or use an assisted communication device. That the same processing circuits that cause us to flap our hands or scratch our arms or chew on our clothes to stay regulated are the same ones that allow us to retain incredibly detailed information and connect seemingly unrelated data in relevant and insightful ways. That the honesty and authenticity that keeps us from betraying or lying to the people we love makes up for our tendency to laugh at the wrong moments in a conversation or our inability to pick up on all your sarcasm or implied humor. That while we may experience and exist in a different way than you do, our differences do not make us less than you.

As an autistic adult (without an official diagnosis yet) raising an autistic child (now with an official diagnosis, hooray!), my plan for “treatment” consists mostly of helping Rondel to understand himself and to understand the world around him, cope with the things that are difficult and embrace the things that give him passion and fulfillment; and of prizing the wonderful individual that he is, and giving him the support he needs (right now, practically, speech therapy and mindfulness practice) to keep his areas of weakness from overshadowing and hindering his talents and strengths. It does not and will never include considering him to be disordered because his mind doesn’t function within that narrow range deemed “normal” or “typical” by the DSM.

Posted in family life, musings

the value of a diagnosis

As we proceed with Rondel’s diagnosis (since the school district is unable to provide an actual medical diagnosis in their evaluations), we’re using an innovative diagnostic app developed by a local children’s hospital, which involves capturing multiple videos of Rondel’s actions and interactions in specific situations. I like the concept a lot, as it lets the doctors see into Rondel’s everyday life and observe him unnoticed for far longer than would be possible in an office setting! However, as I’m going through the videos to trim and upload them, I keep wondering if the specialists will see the differences that we believe are present – or if they will tell us that his struggles are due to something like poor parenting. Maybe if I were stricter, or reinforced acceptable behaviors more consistently, or provided him with a more stable routine, or cleaned up our diet, or or or or…

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…then maybe he would be fine, maybe he would be normal, maybe he would fit in with all the other kids instead of sticking out uncomfortably.

He just isn’t so significantly different that it’s obviously a medical problem to a layperson. His differences are hidden, partially masked, behind his gregariousness and intelligence and creativity, until he’s used up all his energy on coping and he falls apart. So when people see him melting down or acting out, it’s easy for them to assume he is doing so willfully, or to think that he is simply being “spoiled” and “self-centered.” Even I, who see him every day, wonder sometimes if the difference is truly there, all the way down, no matter what, or if I could find some parenting technique that would work better for him and “catch him up” to his peers.

But I wonder that about myself also. Do I fail to maintain relationships or engage in neighborhood community-building because I am selfish, lazy, and don’t care about other people? If I were a better Christian, could I overcome my introversion? Many people do, after all, and are able to make time to recharge themselves. So am I guilty of using my social anxiety as an excuse to cover up for my vices or inadequacies?

Similarly, before I was diagnosed with depression (and honestly sometimes still), I would tell myself that if I just tried harder – if I prayed more, exercised more, ate better, spent more time in self-care, spent more time with close friends, practiced the right mental exercises, etc – I could get through the negative feelings and be fine. Getting the diagnosis was one of the best days of my life, because of what it meant to me: that I wasn’t an awful person taking advantage of the people around me, just a sick person who was trying as hard as possible to find joy and light but needed some extra help.

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And my hope is that a diagnosis will be a similar gift to Rondel: a confirmation that his differences are real, and valid, and significant; a reminder that some things will be harder and it will be ok to seek and use help and support; and a shield against the barbs of guilt and shame that always accompany deviations from social and cultural norms. The alternative – refusing to acknowledge and name the neurological differences that give rise to his behavioral differences – is only a recipe for disaster as he grows older and begins to notice his differences without a framework for comprehending and addressing them. How much better to provide him with a framework of informed understanding, acceptance, support, and unconditional love!