Not broken or special, it’s just how I’m made

There’s a lot of hullabaloo happening right now in the autistic community over a film called Music by Sia (due to be released in early 2021 but there is a trailer at large, hence all the fuss) about an autistic “girl”. Amongst the issues raised are strong criticisms of how the “girl” (the term used in the film) is portrayed, the fact the woman in the role of the lead character isn’t autistic herself, when there are so many autistic actors willing and eager to take such parts (this has been the substance of a fairly “lively” thread between the autistic community and Sia on Twitter). Also because of poor handling of the subject material, in such a way that the “girl” (really, a young woman…so please call her that) is infantilised and made out to be special in her autism, all of which is presented in an abhorrently saccharine way that has been found to be deeply offensive to the autistic community. For more on this discussion, I will add links below.

Without getting lost down the avenue of the current controversy, which is being seen by the autistic community as a grim reflection of a major cultural sticking point around the whole topic of autism, I want to use this as a launchpad for the topic of, not only the general cultural ignorance around autism but, for most of my life, my own since no one told me I was autistic (or, indeed, anything about what that entailed), and so I have had to work this out, slowly and painstakingly, for myself after years of endless struggles with feeling oddly different to the norm; mentally, emotionally and even physically. In fact, it took 50 years for me to realise I was on the spectrum, another one and a half since that to research the hell out of it to where I am now (with still very much to learn) and, most importantly, to realise that in using it as the central piece of my health jigsaw, I was finally able to make some progress with putting that highly scrambled picture together at last.

As a result, I find I now know much more about myself and the why’s and wherefores of what is going on in my health than ever before, a summary of which I will offer in my next post, just in case it nudges anyone else towards greater clarity in this minefield. However, here I mainly want to pose the question, why has it taken me so long, why didn’t these things come up before, say, when I was a child or young adult surrounded by vigilant family members, teachers, people who thought me or my ways were a bit odd and doctors who saw me with alarming regularity. Why was autism, the linchpin, never offered up as a foundation to my own, and everyone else’s understanding of what I had going on?

Well, of course, a big part of it is that nobody knew since autism is only just starting to be understood a little better than all the abject confusion that was rife when I was a kid and, of course again, girls were not believed to be even capable of having it back in the 70s when I was at assessment age in school. Added to this, there is a culture of talking about autism as though it is an ailment of childhood. Even the excellent MCAS expert I subscribe to mostly refers to treating “the child with autism” rather than the adult examples she usually gives. Its as though we autistic adults are simply deemed to have no health problems at all, or to drop out of the picture altogether as soon as we come of age (thus, finding relevant protocols and advice relating to chronic health issues in the case of adults and, specifically, adult females with a foundation of autism is near impossible at the present time, as far as I can tell). The best I have been able to do is to try and keep on top of new science as it comes out and extrapolate studies that are invariably focussed on autistic children into my own scenario, remembering as best I can how issues that I still have first started to arise when I was a kid and then hypothesising what it would look like if those traits continued to be overlooked for another several decades. Its useful, but arduous, work!

Second, although autism information is expanding, the link between autism and health is probably the slowest part of the puzzle to come to light and a lot of what was thought to be confidently known on this front is now being challenged by functional nutritionists specialising in chronic health conditions. This article about Mast Cell Activation Syndrome (MCAS) and autism was a great help to me; it estimates that as many as 75% of autistic people have MCAS and then “mast cells are concentrated in the joints and are involved in these hypermobility disorders that are common in autism” so you can follow the trail). EMFs (one of my biggest trigger-factors) come into the article too:

EMFs from cell phones, tablets, computers, even from Bluetooth in the car, TVs, and refrigerators are another big trigger – There is an unpublished study by Dr. Theoharides where he exposed mice to just the amount of radiation emitted from initiated a cell phone call and there was immediate brain mast cell degranulation – meaning the mast cells starting releasing inflammatory molecules.
Autism and Mast Cell Activation Syndrome – Mast Cell 360

Its right at the cornerstone of those areas under challenge by such nutitionists that I find my own symptoms, my own paradoxes, all the grey areas that seem to present contradictions to the normal run of the average chronic health condition, such as IBS, not least because some of the very remedies or supplements suggested for neuroptypical people in those cases may actually make symptoms much worse in our case because of the autism overlap (see that same article; THIS IS IMPORTANT guidance on some common vitamins and foods considered helpful that are not so in the case of autism). In other words, without knowing the autism part of the equation, people like me might be inadvertently making themselves much worse by diligently pursing health modalities, supplements, lifestyle or diet changes and even ways of thinking about their chronic health issue that don’t work or apply in our particular scenario because we are simply not wired the same as neurotypical people, and that includes the way our autonomic nervous system works, which is still pretty virgin territory for researchers. Remember, that word “divergent” is in the picture for a reason; we don’t tend to be diverse in just one or two ways, it tends to run all the way though us!

However, an undeniable part of this topic, why was this not picked-up earlier, is that very-real obstruction regarding how autism is regarded in our culture, which not only makes people without it hold it in a fairy dim, narrowly stereotyped and often quite a derogatory light but which has also affected how amenable (or not!) I have been to considering it as a trait in myself. I count myself as a pretty open-minded and curious person who likes to consider all the evidence on a fairly level playing field in order to get to “the truth” and yet I now see how I have so diligently skirted around the suspicion, or even distinct possibility, that I am autistic for many years. I just didn’t want to know and managed to push those metaphorical fingers in my ears pretty deeply, but why? Yes, this is partly because of severe lack of information about adults with autism and especially women, particularly women who seem to have good intellectual capacity and fair executive skills to show for themselves. In other words, if we seem to be fairly articulate and capable of completing higher education, holding down a job or raising a family, most people (including the medically trained) will poo-poo the very idea that we are autistic and I guess I became one of them. Which is to ignore that its called a “spectrum” for a reason; not meaning that there are some people smugly positioned at the top and others languishing at the bottom of that spectrum but that the very same person who has a shining intellect and was able to run a small business for a number of years before they burned out might struggle…and I mean really REALLY struggle…in the context of some other fairly basic and highly necessary life skills, and that, my friends, is very much ME!

However, a BIG part of the problem was that, like many other people who suspect they are autistic, I simply didn’t want to be “one of those” because of the way autism is so widely depicted and held in such an unflattering light by the kind of people you have to mingle with every day of your life. It is stigmatised to hell and back and, over the last year or so, I have encountered a kind-of flinch that people do when I raise the topic, even amongst some of the people I have known for a very long time, yes even family (and even amongst those who I suspect are on the spectrum themselves). This sticking point is one massive stumbling block to anyone looking to get to the root of all the ways in which they are NOT so very typical, and that might include that they are NOT so typical in the presentation of a chronic health condition, or the potential to recover from it. For over a decade and a half, none of the ways my chronic health issues have presented has turned out to be very run-of-the-mill so that, even as more information comes to light, I still find myself on the fringes. Well, the missing link might be here; it could very-well be autism, once again!

This mindset of wanting or even NEEDING to avoid being autistic at all costs because it is stigmatised, thus not a good premise for survival in our present culture, is based on an extremely distorted stereotype of what autism looks like and is utterly false…so, long overdue, I would say, to be addressed head on, by me in terms of my own preparedness to “come out” unflinchingly (in the face of other people’s flinches…) about my own traits and by all of us together as a culture. This is why I began this post on the topic of the brand new film causing so much controversy, which seems to have been born straight out of the same stuck mindset. In the autistic community, misguided ideas such as autism supposedly meaning that you are a faulty neurotypical person, “special” abilities or charmingly childlike as an adult (said in such a way that is wholly patronising), are well known to be outmoded and grossly mistaken and unhelpful, but the world at large has clearly got a way to go to catch up. In other words, the way autism is presented is still extremely misleading (and it sounds as though this new film is unlikely to make the situation any better). Surrounded by such wrongly portrayed stereotypes, how are people meant to identify themselves as autistic if they are, especially if no one else is likely to point it out to them, either as a child or as an adult? Would I even want it pointing out to me by anyone but myself if I hadn’t already worked it out; there’s an awkward question? Well, in a paradigm where it may lead to false or patronising belief systems being applied to who and what I am, how I perceive the world or what I am capable of then, vehemently, no…and this leads into another way that autism gets missed.

Its now a well-know trait of girls with Asperger’s (from all the many books I’ve read on the topic; see the Asperger’s Resources tab) that they tend to overcompensate for their autism and squirrel their differences away under carefully learned-and-practiced “normal” behaviours rather than submit themselves to the likelihood of being identified as “different”. Inevitably, this contributes to the high proportion of females that don’t reach diagnosis until they are well into their adult lives (as per me). This is in comparison with boys, who have been demonstrated to be far more likely to indicate that they are struggling by either leaning heavily on others or noticeably isolating in their struggle and thus be diagnosed (which assures them of at least some help) from an early age. Reasons for this are open to speculation but seem to be both external (as in, girls already feel disadvantaged and thus tend to be far more competitive with each other as a result; so they instinctively avoid demonstrating additional traits that might expose or compromise them further) as well as to do with differences in internal wiring based on gender. So, girls learn to do this over-compensation thing at an extremely early age, as though they would rather work harder at life’s challenges than have anyone pick up on them being any different to the pack, which just goes to show how desperately pressurised the matter of “fitting in” to societal norms has become in our world and how it is still stacked heavily against the females. Did I notice this? I certainly felt it in my family setting, was not prepared to risk that my academic ability (which meant such a lot to me) be overshadowed by any of my other perceived shortcomings and I would rather have perished than own up to how much I sometimes really struggled with ordinary (usually physical or social/behavioural rather than intellectual) things that others took for granted.

As I dive deeper into the area of functional approaches to healing from conditions such as MCAS, I am reading (of course, obvious really) that when an autistic person presents with subtle, as in not overtly visible to others, health anomalies because of their autism, they may also tend to work harder than anyone else to overcompensate for them, as in to normalise what to most people would be deemed as an anomaly needing to be addressed. This sounds to me like a version of what Asperger’s females often do with those other autistic differences, as in, to seemingly iron them out or normalise them, through overcompensation and learning to put on a “normal” act, so that nobody realises they are struggling, rather than speak out about, or inadvertently expose all the various ways that they might be perceived as being different to their peers. Pushing through these episodes of physical symptoms, rather than listening and responding to them as appropriate, can then feed straight back into the loop; by launching more excesses of mast cell activation and inflammation. No longer a spark but a forest fire. I had no idea, until reading the linked article, that “it takes over a year for over-active mast cells to die off” Imagine what this looks like after several decades of being in the loop; a chronic health issue in the making.

One rather key area that they may do this is in the domain of Dysautomia symptoms, which are commonly present alongside autism for reasons that are still in the early stages of research, and the MCAS that often coexists with this. So, imagine a child with autism (diagnosed or otherwise) has odd symptoms such as a habit of shallow breathing and other difficulties regulating breath, moments of dizziness or lightheadedness, sudden nausea, frequent stomach aches and sore or upset bowels or bladder, weird body sensations, pain or weakness when they do their physical exercise or play with the other kids, a kind of tunnel vision in certain situations or periods of intensely blurred vision that later passes, peculiar heartbeats, spacial and coordination challenges, trouble concentrating in busy environments or singling out the appropriate person to listen to when there is other distraction going on, floored by sudden changes in pace, prone to very sudden bouts of wipe-the-floor exhaustion, odd sensitivities to food or environments, the chlorine in swimming pools, smells, surprises, sounds or bright lights and allergic reactions with no obvious trigger. What, then, if they learn to play these symptoms down or “try to live with them”, rather than make a fuss or draw unwanted attention to themselves. What happens when those symptoms go on and on through all the years of school and exams, through higher education, through trying to hold down a job or build a career, through pregnancy, though generally trying to be an adult in an adult’s world…and what if the symptoms only get worse, more erratic, made more pronounced by poor diet and lack of supplements or even, paradoxically, made worse by attempts at popular health diets and lots of supplements (because they don’t realise that some of these approaches simply aren’t appropriate, are often much too aggressive, for people with autism)? What does their life and health look like by the time they have gone though menopause and after several years of not-so subtly trashed health, on and on, yet with no one able to make head or tail of their symptoms, feeling more and more alone and misunderstood; say, by the time they are in their early to mid fifties?

They look a lot like me! I was that kid who played down all the bizarre symptoms and the “funny feelings” I was always having because I was all too aware they made me sound like a moaner or drew unwanted attention to the shy kid, the by-far youngest in the family, that I was. The last thing I ever wanted was to be different or a nuisance, so when differences cropped up I did my absolute utmost to absorb them and to work even harder, to impress and please other people more, ignoring my entire cacophony of odd symptoms and bizarre challenges and even telling myself that everyone must secretly have the same problems that I did (although I knew, deep down, that most of them didn’t). Inside, I felt like a weakling and I felt like a canary in a coalmine that no one would want to hear tweeting, so I kept my problems shtum. When others my age seemed fitter than me, to have more all-round resilience, to be able to eat what they want with no consequences, etc, I told myself I must be the faulty one. Part of my cover-up process was to make excuses, to drop out of physical or social activities where my differences really showed up, to become the geek, to lose myself in my solitude and to focus on the world inside my head. Later, I tried to overcome or hide social ineptitude by drinking way too much with people too “merry” to pay any attention. I doubt that I knew very much at all about autism for most of the first two to three decades of my life but, if it had cropped up, I would have run a mile from it, such was the stigma (my brothers used to call me autistic when I was little; it was a cat-call I never forgot, feeling its intended meaning, even without knowing what it really was and I doubt that they did either). I made a life’s mission out of blending in and over-compensating with how much effort I put into other things. I guess the burn-out was inevitable and, whilst the inherent health traits would always have been there, its the stress they’ve been put under that has led to the word “chronic”.

So, with all this coming together, I strongly suspect autism is now overdue for its own kind-of “me too” movement; as in, people rising up to declare that they have it in quarters where they are used to keeping politely quiet; perhaps also that they used to be one of those people utterly stigmatised, even petrified, into muteness regarding their innately wired differences because that’s how terrifying it has been to be perceived as different to the so-called “norm” until now. It really comes down to being a core survival issue when you look at how this one distortion of self-perception can really affect you at your root; we take it all inwards so as not to have to deal with it out there under the scrutiny of others, and then the damage that sets in to our souls can feel extraordinarily deep by the time we spot it languishing there. Autism is also overdue to add its own part to the diversity conversation, because the kind of portrayals that it currently gets in the media and our society at large are well-and-truly in need of an overhaul. The world is ripe for achieving a whole new level of acceptance of diversity, in all its many forms and those with autism need to take a seat at that table.

Perhaps once this starts to happen, information will become as eagerly sought after, as freely available and as transparent (without judgement or agenda) as it needs to be for diverse situations to be caught early on in a person’s life; not in order to stigmatise them like we have been doing, but to tailor early life experiences according to need and with total fairness towards every single unique person in the world. This would help ensure that lives get onto the appropriate track in the very early stages of a person’s existence rather than, belatedly, at the point when many decades have now passed and you are left looking out of the back window, wondering how it would have been “if only you had known sooner”.

As for what I am now starting to grasp (at last) about the progression of my health issues from being born with autism and Ehlers Danlos, including a propensity towards Dysautonia due to my differently “wired” autonomic nervous system and high sensitivity which (left unaddressed, thus exposed to numerous triggers that don’t affect most other kids) led into MCAS and a cycle of histamine over-reactions which (again left unattended or inappropriately handled, at least for this autistic person, by many years of over-vigorous approaches) led into more chronic inflammation and pain, I will come back to do my best at shedding light on that progression, with some of the best articles and science I have come across in another post. This one felt necessary as a stand-alone post because something touched a nerve when I read about the Sia controversy (just as it seems to have touched upon many nerves in the autistic community) and it then served to remind me that, above all things (and probably as a crux to my healing process) I really owe it to my long-silent autistic self to give it a clear and unhesitant, authentic and wholly acceptant voice from now on.