Nervous System Dysregulation – ASD vs ADHD

skateboarding picture 1
Sad boy sick of autism. Plays with yellow toy car while his mother is looking at him royalty free stock photography

I’m not an expert on ASD and ADHD – but there seems to be a lot of misunderstanding out there around the connections and differences between these conditions, so thought I’d put forward my 2 cents.

This is just my opinion based on what I’ve read and observed. Observations on ASD courtesy of myself and my son, and those on ADHD based on my (possibly undiagnosed ADHD) daughter and her (definitely ADHD) boyfriend.

So one connection between these conditions is they both involve nervous system dysregulation – but they differ in the details.

Let’s not get too technical. For one thing, I always get confused myself between the sympathetic and parasympathetic nervous systems. And where does autonomic nervous system fit in? Or the somatic? Better limit myself to one paragraph of explanation here.

So our nervous system is what allows our brain to find out what’s going on in the rest of our body and control how we respond. What I’ll be talking about here is the Autonomic Nervous System (ANS). “Auto” is the same root as in “automatic” and “autonomous” – it regulates involuntary processes like heart rate, blood pressure, digestion, and breathing (and yes, we can also exert control over breathing – more on this later*). Oh darn, I need another paragraph. Bear with me…

I’m going to talk about hyperarousal and hypoarousal. “Hyper” refers to an excess and “hypo” refers to a deficit (just like in diabetes, but referring to nervous system activation instead of blood sugar). This is to avoid talking too much about the 3 types of autonomic nervous system: parasympathetic (PNS), sympathetic (SNS) and enteric (ENS? – no idea). Because I figure we’re not doctors, we don’t need to know how it all works, we just need to know how it makes us feel and what it makes us do, right? Oh dear, I need one more paragraph. Or maybe two. But this will be the last technical bit, I promise.

To quote wikipedia:  the sympathetic nervous system is often considered the “fight or flight” system… it is a “quick response mobilizing system”. So when I’m talking about hyperarousal, that generally means the SNS is activated. (See why I’m confused? Why would a system that causes me so much trouble be called “sympathetic”, instead of “uncaring”, or even “downright nasty”?)

Wikipedia again: The parasympathetic nervous system is often considered the “rest and digest” or “feed and breed” system… it is  is a “more slowly activated  dampening system”. So the PNS brings us down from “OMG I nearly crashed the car!” to “let’s vegetate in front of the TV with a bag of crisps”. Hypoarousal would be when the the body stays in this resting state instead of upping its game when needed.

(P.S. “crisps” is “chips” to you Aussies. No, Brits, we don’t mean your kind of chips – those are “hot chips” here. Or “chippies”, which also refers to carpenters, just to make things absolutely clear. So I don’t mean hot chips, otherwise known as french fries, which are actually pommes frites, I mean chips which are cold and come in bags – and just because y’all call them chips doesn’t mean they’re not crisps to me. Glad we got that sorted. Don’t get me started on how to pronounce “yoghurt”.)

So if you’re still here, it seems like the dysregulation in ADHD is easy to understand. Basically, ADHDers spend most of the time in a state of nervous system hypoarousal. So don’t expect the best from them doing a mundane desk job or something repetitive, as they’re going to be hopping from one task to another, or else hopping from one foot to the other, trying to activate their SNS enough to maintain their attention. They probably won’t finish the task but it’s not their fault – it’s the way their brain is wired.

From my observations, it seems like ADHDers can up their attention levels and achieve good performance with a combination of:

  • stimulant drugs or caffeine. These may have a reverse, calming effect on behaviour
  • doing tasks with an active, physical component
  • doing tasks with a stimulating, social component
  • working when motivated by the stress of an approaching deadline, or
  • when intensely interested in the activity

I’ve also found that they crave sugary drinks and snacks – to their detriment, as the sugar rush they need will be followed by a whopping crash. (But try telling teenagers that).

Dysregulation in ASD seems to be a little more complex. I think we can exhibit hypoarousal similar to in ADHD, which is why there can be misdiagnosis, or confusion over whether a dual diagnosis would be applicable. But the difference is that we will also suffer hyperarousal under conditions that stimulate the nervous system. That’s why autistics are prone to meltdowns or shutdowns under conditions of stress or overwhelm. (This is not just my opinion – there’ve been scientific studies showing ANS dysfunction in autistics based on measurement of heart rate and the stress hormone cortisol).

As a personal example, my reaction to caffeine varies depending on the state of my nervous system. Typically I can handle a modest amount of coffee and it usually helps with concentration, but if I am in a hyperaroused state the caffeine will boost the SNS further and make things decidedly uncomfortable.

Autistics generally use repetitive body movements to help regulate our nervous systems. I don’t like the term “stims” (short for “self-stimulatory behaviours”) because it’s a misnomer – the movements may be used either to stimulate or to soothe; they are “regulatory behaviours” (“regs”? “lates”?). For instance, when I’m getting overwhelmed at work I will get up and walk around – but I might also get up and walk around to stimulate myself when I’m feeling bored. I play with my fingers when I’m nervous but might also do so when I’m trying to concentrate. I may not even know whether I’m hypo- or hyper-aroused, I just know that I don’t feel comfortable sitting still at that moment.

You can see that the nature of nervous system dysregulation in ASD means we have different (and often opposite) requirements to ADHDers to achieve good outcomes:

  • avoiding stimulants and caffeine, especially when stressed, angry or upset
  • doing tasks with an active, physical component – for short periods with calming rest breaks in between
  • avoiding or limiting tasks with a stimulating, social component
  • working without the stress of an approaching deadline

The only common factor to achievement within both groups is:

  • being intensely interested in the activity

In other words, whatever your neurotype, do what you enjoy!

*A final word, as promised, on the matter of respiration. Breathing is one of the few processes controlled by the ANS over which we can also exert conscious control. This works both ways – meaning we can use breath control to influence the state of our nervous system. Think of it as respiratory “stimming” (“regging”? “lating”? Hm, I need a better term). That’s why breathing is such an important part of practices such as meditation and yoga – and recommended for anyone who suffers any kind of hyperarousal such as anxiety or panic attacks or PTSD, as well as autism.

That’s all for now; hope this post provided a bit of intellectual stimulation (without triggering too much pacing!)

A tale of ills and pills

Hi all,

Just checking in and saying hi, sorry it’s been so long between blogs.

I’ve been having some issues on the mental health and medication front, which is why I haven’t sufficiently enthused about anything to blog about it. Since I’m here, and feeling a bit more myself now, I might as well tell you the story. If you don’t mind a blog of a personal nature.

So… these last few years something has not been quite right with my mental health but actually pinning down what it was and finding the correct ‘label’ has been challenging. It never fit the diagnostic criteria for anxiety, or depression, or PTSD, or perimenopause, though I would cycle through symptoms common to all of these.

And labels are important, you know? The first time I went to the doctor with foot pain I had to describe to her where the pain was and when it occurred and to what level and how that affected me, from which she gave me the label “plantar fasciitis”. Now if I start limping and someone asks me what’s wrong, I can tell them it’s plantar fasciitis (assuming I can get my tongue around the double i) and am delivered from the need to go through the whole story of when and how much it hurts.

Labels are the shorthand which enable us to give someone a sense of what we are going through and how they can help. Failing that, even when the person doesn’t understand what the label means, stating it with sufficient confidence and finality can still remove the obligation to explain one’s problems further (and place the onus on the other party to go look it up). Plus, of course, the label is important in obtaining the appropriate treatment.

So the story starts with me being given a tentative label of mixed anxiety and depression and being prescribed psychotherapy and antidepressants. The first antidepressant was mirtazapine which was actually quite good (not only for the effect on mood but because it had a sedative effect that helped me get enough sleep). I was on it for a few months, came off when I felt better, went back on when I started feeling bad again, came off again, went back on again. Then it stopped working; it pooped, as they say. I started feeling low and oversleeping and the sedative effect was no longer my friend but making me even more dopey.

Well the doctor was all for upping my dose (why do doctors do this? they push patients onto higher and higher dosages, with no thought of withdrawal symptoms when the poor person tries to come off). Instead I asked if I could switch to something else.

By this time, to be clear, I knew that I was not suffering from clinical depression. Or clinical anxiety, for that matter. After years of trying to find the right label I’ve worked out that it doesn’t exist – so I’m using my own. I’m calling it autistic stress disorder. Autistic because studies have shown that we on the spectrum have differences in the amygdala, the part of the brain responsible for emotional reactions. Stress disorder because it increases during stressful periods and manifests itself in a malfunctioning of the fight-or-flight reaction, which also occurs with anxiety disorders and PTSD, leading to periods of hyperarousal. Only we don’t have panic attacks we have meltdowns. Or we have shutdowns, which look like depression, because it becomes a struggle to engage with people and live our lives. In my case, as you’ve probably worked out by now, it also means losing the energy and motivation to write, or even blog, for long periods.

Getting back to the medication story, if you have any sense you are now wondering why I wanted to go onto another antidepressant, after working out I was not clinically depressed. And the simple answer is that antidepressants seem to help. They level out my mood enough that rather than get upset about anything and everything, the meltdowns get saved for the times when they are, more or less, justified by life events.

The important point in prescribing antidepressants for Apsergers/autism seems to be this: KEEP THE DOSE LOW.

I learnt this the hard way recently when the GP switched me onto an SSRI called escitalopram. This one was not for me, I could not live with the side-effects. At night my jaw was clenching up (out of my conscious control) making it hard to sleep, and I would wake with a headache every day. Apparently jaw-clenching indicates low dopamine levels, similar to Parkinson’s disease. It’s a rare side-effect of SSRI medication, occasionally seen at very high doses – not at the level I was taking, which was supposedly the lowest therapeutic dose.

I switched onto another SSRI called sertraline. As a medication approved for use with anxiety disorders and PTSD as well as depression, I thought it might be a better one for ASD. So far I’ve had no major side-effects, but I’ve learnt my lesson and am taking half the dose the doctor prescribed. And it seems to be working. (For which I am very thankful!)

The other medication I’m taking now is 2mg melatonin in the evening. As one heads into menopause oestrogen levels drop, and apparently oestrogen is important in the production of melatonin in the body (the hormone which makes you feel sleepy when it’s dark). So was it the perimenopause rather than anxiety to blame for me coming wide awake at 3am? Well, the melatonin is certainly helping me sleep through the night. Whether true effect or placebo, I’ll take it.

And the upshot of all this is that I am finally, after a rollercoaster 3 months or so, starting to feel more like myself again. Less overwhelmed by life in general, and looking forward to the drive up to Mareeba tomorrow for 10 days of fieldwork.

So that’s the tale of my adventures with a mysterious mental health condition and my quest for the fabled pill of eternal happiness, leading of course not to eternal happiness but to knowledge and personal growth, in the way of all the best fables. Thank you for reading!

Nothing to See Here

Do you want to know why I haven’t been posting?

Are you sure?

Are you sure you’re sure? It’s not going to be pretty.

OK – if you’re absolutely 100% sure you want to know – here it is, the explanation for my lack of energy / inspiration, complete with the trampling of a self-imposed rule not to talk about my kids online, and a general airing of my dirty laundry. But hey, I’ve got to vent somewhere.

So let’s start with my daughter. Everything always starts with A, she’s like that. So she had a bit of a mental health crisis and ended up spending a few hours at the hospital, and this time I pushed the staff a bit. As in, can someone please assess her for X (a condition she ticks all the boxes for – every single diagnostic criterion)? Oh no, she’s too young to be diagnosed, they tell me. But we can say she has “emotional dysregulation”. Fine, but will that get her the appropriate treatment, the one she needs, which was specially designed for people with X? Blank looks. It’s suggested we try general talk therapy as, after all, she hasn’t actually been diagnosed with X…. you get my drift.

And then there’s the gut issues. She’s always had pretty bad atrocious eating habits, but when she started staying home from school complaining of belly-ache, I thought it was anxiety, or just A being A. But recently it got really bad. As in, belly aches daily, frequent trips to the toilet, not eating properly. The doctor hasn’t been much help so far but after doing a bit of googling myself I can understand why. There are more causes of gut issues than blades of grass in my garden. It’s a big garden.

Anyway, I decided to get her to keep a food diary, and try her on an elimination diet. We knew she was lactose intolerant already but we got stricter with it – no more ice cream or that gunk they call ‘soft serves’, only lactose-free versions of milk and yogurt. Bacon and sausages were out too, because of the preservatives. And we went (mostly) gluten free.

A digression: I’d always thought gluten-free would be incredibly difficult, but once I’d (spent a small fortune and) stocked up on the right food it wasn’t that bad. We even had a bit of fun baking our own g-f muffins and cookies. Which leads me to the next part of the story:

The elimination diet failed to clear up the problem (although it was hard to be sure because A being A, she hadn’t kept the food diary, and she kept breaking the diet). But I did note a particularly nasty episode relating to a multi-coloured iced cookie, which I strongly suggested she not eat after seeing 33 additive numbers listed on the back, and that of course she ate anyway. And my brain went down a different path: food additives <-> processed food <-> excess sugar <-> gut imbalance.

So now we’re onto diet version 2. Gluten is back on, lactose and bacon are still off. Processed and packaged foods are limited, and sweet drinks are not allowed. The idea is to get her eating ‘real food’ – the stuff that comes from plants, or the animals that eat plants (with inspiration from David Gillespie’s book of the same name: Eat Real Food). She hasn’t got the hang of it yet. Thinking to ease her into it, I left a few packaged items on the ‘yes’ list, such as frozen pizza, plain crackers and sesame snaps – so, of course, those are what she’s been eating.

Then on Friday I had one of those (not unusual) calls from the school saying A was feeling ill and could she go home, to which I agreed. Got home from work that evening and she had a very large and obvious tongue-piercing. Can’t say I was very happy about that – even apart from thinking tongue piercings are gross, how exactly is having a painful hole through her tongue going to help get some order into her eating habits? A’s boyfriend proceeded to tell me a colourful story about the drug-using habits of his family, the moral of which seemed to be that he was proud to come from such a family because he loves them for who they are, and hence I should be supportive of all A’s choices because I love her. It was, I have to say, an outstanding piece of Gen Z logical rhetoric. But no. Believe it or not, we Gen Xers are actually capable of separating love of the person from love of the holes they punch through themselves.

As always happens in this household, all the drama with A has resulted in very limited attention being given to my son and his issues – and oh boy, does L have issues. It’s mind-boggling that he recently turned 20. It’s like he stepped into a time-warp at around age 16 and got frozen at the same level of development. So yeah, while I’m first to acknowledge he’s got a brain the size of a planet (with a nod to Douglas Adams), I’m not holding my breath for L to learn anything practically useful in life, such as how to drive or get a job. We’re still working on the regular showers.

Now here I have a bit of good news, a breakthrough! But only if you know the background. That is, the two previous times I’ve enrolled him a course of study, only to have him fail to submit his assignments, from some combination of not understanding what was expected, not wanting to ask, and fear of failure. That last one is a doozy, because every time he fails to submit something it reinforces his belief that he is incapable, which renders him more wary of trying anything, as he is sure to fail. Paralysis by over-analysis!

Anyway, back in February I heard about this TAFE course in Cybersecurity that would be right up his street. I mean, this is a young man who starts conversations by querying one’s method of password protection and wondering whether quantum computers are going to take over the world (or something… it all goes over my head). At first he was like, I don’t want you to waste your money again, but when I pointed out that it was government-subsidised and he only had to pay $48, he reluctantly agreed it might possibly be worth applying.

Fast-forward through 3 torturous months of asking L whether he’d submitted this, reminding him to check his emails, realising he needed to submit that, reminding him to check his emails again, not understanding whether he’d got accepted on the course or not, asking him to actually read through everything in the emails this time, and eventually finding out he was on the course. Then asking him where and when his classes were, discovering he had no idea, reminding him to re-read the emails over again to find out, or call the tutor, and realising he didn’t have a clue who his tutor was either, getting him to watch the orientation video, and now the breakthrough – ta da! He attended his first zoom tutorial.

But Jeez. How long am I going to be managing his life for him?

And speaking of failing to manage one’s life… let’s just say that a lot of L’s personality traits didn’t come from his dad’s side. We’ve got the blind autistic leading the blind autistic here. Which brings us to the ongoing saga of ‘what the heck is wrong with me?’.

I suppose you might think dealing with the aforementioned kids’ issues may be affecting my mental health, and it does get a bit tiring. But A and L have been a constant in my life and I’m used to dealing with their personality quirks; there’s something else going on. My latest theory (and I found a published study to back me up) is that peri-menopausal hormone changes are exacerbating my autism. (Try saying that quickly). So what looks like an anxiety attack followed by depression would be better characterised as a meltdown followed by a recovery period. Biologically, it’s my body not being able to regulate stress properly, so there’s too much cortisol in the body leading to an adrenalin surge (meltdown / freakout), followed by depletion of the adrenals and low mood (recovery period).

Of course, the meltdowns tend to happen in the place where I have least control over stressors or opportunity to self-regulate – the office. If the work is of a nature that keeps my brain happily occupied for hours at a time, the way I like it, I’m usually fine. But recently I’ve had not one project I can concentrate on but a series of requests and emails on multiple projects daily. This completely stresses me out; it’s not what my brain was designed for! At the end of last week I actually got so paralysed by the overwhelm of trying to work out what to do first that I could do nothing useful at all. Then a computer glitch leading to the loss of my timesheet entries (normally not a big deal) triggered me into a freakout, and it took me all weekend and then some to recover.

The conclusion to this long post being, I’ve been too distracted managing my health and that of my kids to get the headspace to post anything here. And I’m only posting this now as a way of processing things for myself.

Especially, right now, I’m processing the latest in the work issue. I admit, I’m proud of my abilities at work – I generally see it as the only aspect of my life in which I function up to a normal standard, or even a superior standard in some aspects. Vested in work is much of my self-esteem. So it was incredibly hard to do what I needed to do and ask for changes to help me maintain my mental health. I basically had to admit that there are aspects of the job that maybe I shouldn’t be doing.

My bosses are great, they really are. I believe we’ve come to an arrangement to get me a long-term project I can concentrate on that will hopefully minimise meltdowns. Plus more help with managing my work in the meantime. It’s a win, of sorts.

But there’s a lot of grief also. Because while I’ve known for a while now that I wasn’t going to get to a higher level at work but would need to stick where I was, I did believe I’d be OK there. I wasn’t expecting it to keep on affecting me like this. Plus I’ve never so openly explained my limitations before; I’ve only ever danced around it in the past, telling them issues I was having with the work but not fully explaining the root problem. I wonder how much respect I’ve lost now, and whether they’ll think of me differently.

Perhaps this was a necessary adjustment. Ultimately, when one is on one’s deathbed looking back, which will feel better: to have achieved success and acclaim at work, or to have put one’s best effort into giving one’s kids the love and attention they deserve? It’s a no-brainer, right?

Still, these last few years have given me a lot to process. And they leave me puzzling even more over how one is supposed to respond when people come up and ask: Hi Kay, how are you?

What on earth does one say? Fine, and leave it there? Do people understand the subtext, that maybe I’m not quite entirely fine, but I’m still alive and taking things a day at a time and remain optimistic for the future, so, I guess… nothing to see here.

Review – When the Body Says No

I just read this book “When the Body Says No (The Cost of Hidden Stress)” by Gabor Mate. It’s a bit old now, published 2003, but I hadn’t seen it before.

This is probably going to be the shortest review ever – because I can’t decide whether the content is profoundly wise or a load of codswallop. I’m actually hoping you, my lovely readers, would read the book and offer your own opinion in the comments.

Anyway, the premise is that modern medicine is problematic in separating the mind and the body, or mental health and physical health. The author uses case studies of patients to illustrate how aspects of their personalities and the ways in which they deal with life stresses may have contributed to the development of physical disease.

So far so good; I know from experience that mental and physical health are connected. The book clarifies how internal stress affects all kinds of neurological, endocrine (hormonal) and immunological pathways and thus can contribute to the development of disease. I can see this might be particularly relevant to autoimmune conditions such as multiple sclerosis (MS), Chrohn’s disease and rheumatoid arthritis, which together with cancers and motor neurone disease / ALS are the main topic of his case studies.

I was also interested in his thoughts on why some people with genetic or environmental risks for cancer and alzheimers disease go on to develop disease and some do not. I have sometimes wondered whether many of us might be carrying around early cancerous changes, and this book explains that we rely on fully functioning immune systems to keep these in check. And certainly it does seem to me as though doctors are still trained towards treating physical diseases without wholistic consideration of the life stress and coping mechanisms of the sufferer.

One thing that I am wary of, however, is drawing any conclusions from the few case studies examined in the book. In places, it reads as though the author is linking particular types of coping style with certain diseases, almost pointing to a “lung cancer personality” as being someone with repressed anger, a “rheumatoid arthritis personality” as being someone who looks after others and shows no weakness, or an “ALS personality” as being a driven perfectionist.

To me, that goes a bit too far. Extracts of his interviews with patients are presented which do illustrate the personality traits and coping mechanisms at play – but I had a niggling feeling that if one was to dive into the childhood/ family experiences of any one of us in a similar fashion, one would be able to find some kind of unhealthy coping mechanism. Do people even exist who have such maturity of outlook as to remain emotionally regulated through any life stress, and able to maintain the perfect balance of security and autonomy in their relationships?

No, I don’t think so either.

On the whole though, I found this book very interesting. It prompted a bit of soul-searching of the “do I have a problem with repressed anger?” type. But there’s no harm in that.

In fact, the book noted that positivity of the kind which stops us from examining the negatives in our lives can actually be harmful and lead to poorer outcomes. It is only by examining our own repressed emotions and harmful coping mechanisms that we can bring about change and healing.

OK, so not such a short review after all – and I’ve now decided I liked the book, even if I’m a bit wary of some aspects. Thoughts, anyone?

Inter-speak

Is this just me getting old, or are the internet and social media creating new words and phrases at an incredible rate? I frequent an on-line forum sometimes and all the talk is about the “woke generation” and “cancel culture”, terms which would have meant nothing to me one or two years ago.

I nearly called this post “Newspeak”, referring to a newly developing language – but of course that’s been famously used in the novel 1984. Newspeak was an imposed reduction in vocabulary designed to prevent people from being able to verbalise any thoughts deemed unacceptable by the authoritarian state.

What we have today is the opposite. Social changes driven by the overconnected masses are leading to the development of concepts which simply did not exist in the prior history of our language. New words are needed.

So, on the web, “influencers” are “gate-keeping” in case we are being “transphobic” or a “TERF” and “misgendering” people. In the US, the “MAGAs” and are still listening to the “fake news” delivered by the deposed “POTUS”. Globally, “anti-vaxxers” and those “covidiots” who refuse to practice “social distancing” are imperilling our goal of “herd immunity”. And, as it turns out, I’m “on the spectrum” or an “autie”, while most of you are “neurotypical”. It’s hard to keep up… but isn’t this linguistic-conceptual expansion actually quite wonderful?

I’ll tell you what brought this to mind. (Do I need a “trigger warning” on this part? I’m going to mention sexual assault, but only in an academic, linguistic sense).

I was just noticing that the news today was filled with debate over sexual assault allegations in the government. This is another of those things that society (and especially the “#metoo movement”) is becoming more open about discussing.

And it occurred to me that we don’t have an appropriate word to describe the women involved. We used to call them “victims”, but that fell out of favour for obvious reasons (though we still refer to “victim blaming”?) Now we have “assault survivors”. But does that not seem wrong, or at least illogical, if used to describe someone who escaped an experience that was traumatic, but unlikely to be fatal?

So I was left scratching my head, searching for the right word. Perhaps “assault sufferers” would be a better term? It would at least imply a recognition that a level of suffering may continue past the event itself. Yet it seems clunky.

But then I realised my linguistic failure didn’t matter. There are thousands (maybe even millions?) of people out there watching the same kinds of news and having the same kinds of thoughts. The odds are, within a year, Inter-speak will have provided a new word that fits.

Modern interwebbed society, eh? Equal parts batshit crazy and kind of wonderful.

Taboo Topics – 6.1 Parenting Solutions

OK, yes, I agree that my previous post on parenting problems was somewhat lacking in substance.

Firstly, I failed to explain that my topic was solely on the difficulties of being an autistic parent. Not an “autism parent” (parent of a child with autism), but a parent who is on the spectrum themselves. The post was not intended to address any of the complexities around raising autistic children.

Secondly, while I listed some typical autistic traits which can make parenting difficult, I failed to propose any solutions. Which, I have to agree, makes the post somewhat lacking for any fellow AS parent looking for tips, or for family and friends looking to offer support.

So let’s go a bit further.

Talking about the ways in which autism can adversely affect parenting still seems very dangerous, so I’m feeling the need to repeat myself here. Every parent in the world has issues that affect their parenting, whether they have ASD or OCD, NPD or PTSD, or are just plain immature. If you dare use my post to suggest that autism, of itself, prevents a person from being a good parent, I will personally come round and tie up your cat’s whiskers and kidnap your flowers, comprende?

Right, now I’ve got that out the way (removed my 1920s fedora, stubbed out my cuban cigar, and brushed off my lapels), here are some ideas on parenting strategies for those with AS:

Strategy 1: Enlist Partner Support

If you are lucky enough to have a supportive partner, enlist their help. Work out (for each of you) your parenting strengths and weaknesses – or list the parenting activities you enjoy, dislike, and absolutely can’t stand. Distribute tasks in a way that maximises enjoyment and minimises pain for you both, as far as you can.

That may mean some unconventional approaches, such as an NT (neurotypical) father arranging playdates instead of the autistic mother. It could mean an NT mother taking on spontaneous activities such as outings while the autistic father looks after those that can be regularly scheduled, such as meals and bedtime routines. The important thing is to go with whatever works for yourselves and the kids, rather than sticking with conventional gender roles.

It’s important to regularly check with your partner that they remain happy with your arrangement. The reality is that the NT partner, without personal experience of AS, may not appreciate the necessity of the support they are being asked to provide, which may be more (or different) than they had anticipated going into the relationship. They can start to feel unappreciated and resentful. So the autistic partner needs to be proactive in asking how their partner is going and being willing to negotiate changes to the arrangements.

On the other hand, where the NT partner refuses to provide the requested support or chooses to stick within the defined roles they may be more accustomed to, the autistic parent needs to be vocal on the level of difficulty they are facing because of their AS. There must be understanding that an autistic parent forced into performing according to normal NT standards without support is risking a burn-out or breakdown.

Strategy 2: Enlist External Support

This is what you will need to do if you don’t have a partner or s/he is not sufficiently supportive. I can’t say much about enlisting external support as personally I’m particularly inept at obtaining such and have typically muddled along without.

What I will say is that for an autistic person it is crucial that any support is regular and consistent rather than chaotic with respect to type, timing or duration. This means that it may need to be provided either by close family members who have sufficient time and motivation (such as retired grandparents), or by paid arrangement with a service provider. Many types of informal supports fall down through being of an ad-hoc nature which is insufficiently reliable, or through reliance on friendships or social networks, which an autistic may struggle to maintain.

If a parent is self-diagnosed and in need of external support, I do believe it is worthwhile seeking a diagnosis if that might improve access to formal assistance. However, do not disclose your autism to those involved in child welfare. There is too much scope to mistake your need for support as a parenting problem which might endanger the kids.

Strategy 3: Keep Trying (the power of persistence)!

Parenting is all about learning on the job – so it’s important to see oneself as capable of improvement. That doesn’t mean struggling to overcome autistic limitations and become neurotypical – because it’s impossible to overcome a neurological difference. “Improvement” means learning work-arounds and compensation strategies. Don’t try to break past your limitations; sneak around them while they’re looking the other way.

So whatever the parenting issue, keep trying strategies until you find ones that work. In fact, employing strategies to get around your AS in other aspects of life can also be a blessing by freeing up your energy to attend to your kids. What I mean is things like:

  • setting reminders and alarms to help you leave work on time and transition from work tasks to home tasks, or from housework to child care
  • have a written or visual schedule of childcare tasks to keep on track
  • sort out a system for keeping track of finances and paying bills on time with minimum fuss
  • streamline shopping trips to get as much in one go as possible, or shop online
  • if you’re struggling to understand the emotional needs of your kids, try to regularly ask them how they feel or get them to use emotion cue cards
  • indulge obsessions while the kids indulge theirs – read a favourite book or podcast at their athletics class. Or better still, encourage them to share your own interests so you can indulge them together
  • become comfortable with the kids’ social lives by setting rules over activities and durations and loosening these up over time as you gain confidence
  • as the kids get old enough to understand AS, be honest about your difficulties and enlist their support. They will come to appreciate the benefits of a less frazzled parent

Frankly, for any parent with AS, there are going to be times when you are too overwhelmed to do the right thing. There may be meltdowns or shutdowns when you yell at the kids or shut them out. Crushingly, there may be times when you have to deny the kid something important to them, because your limitations do not allow you to provide it. That is the nature of AS.

When it happens, don’t beat yourself up about it. nobody can be a perfect parent, or even a good parent, 100% of the time. And kids are resilient, as long as they know they are loved. Just look back afterwards and try to understand what went wrong and learn from it. Might there have been a work-around? What could you have done differently? Could you have enlisted help?

Ultimately, you need to give yourself a break – and recognise that it’s not easy being a parent with AS. As long as you have your kids’ needs at heart, you’re doing great. Just keep trying.

Taboo Topics – 6. Parenting Problems

I think I’ve procrastinated enough over this one and need to just write something…

This topic is more of a taboo than most – it’s rare for someone on the spectrum to admit to difficulties in the area of parenting. Sometimes that’s from lack of self-awareness (i.e. seeing oneself as a good parent no matter what). Often I believe it is from fear of being labelled a “bad parent”. It’s all very well being open about how one’s autism affects oneself as an individual, but so much harder to be open about how it affects one’s kids.

I’m hoping that what readers have taken from my previous taboo topics was not that autistic people have empathy deficits, that we struggle in relationships, become obsessive about our interests, tend to get fired from our jobs, and may be genderqueer. I’m hoping that the take-aways were more along these lines:

  • autistics typically have deep compassion for others, even if it doesn’t always show in our words or behaviour
  • we can maintain romantic relationships through mutual understanding of each other’s differences and needs
  • our obsessiveness, if channelled appropriately, can be a power for good in society
  • we will typically work our butts off for an employer who is accepting of our differences and willing to provide targeted support
  • unconventional gender presentation is only a problem as far as society believes it to be

My fear is that readers might come away from my posts remembering the negatives and not the positives. However well one tries to explain, this can happen. You can see it in the way the autistic deficit in cognitive empathy has morphed into a common misconception among the public that autistics “have no feelings for others”.

My fear is of the potential for discussion of parenting difficulties to morph into a sense of “autistics make bad parents”. I certainly do not wish to infer any justification for people in authority to use the fact of a person’s autism diagnosis to query whether they should be allowed to have children in the first place, and even whether their kids should be removed from their care.

So when I mention difficulties an autistic person might have with parenting I’m relying on you, my kind reader, not to jump to negative conclusions. Please read to the end of the post!

After all that, I have to admit that many autistic traits, even of the mild Asperger type, can be troublesome when it comes to parenting. Here are a few examples (but note that not every autistic will have all these issues):

  • sensory sensitivities to noise and smells (which may be triggered while looking after babies, for example)
  • difficulties in networking with other parents and finding social support
  • difficulties understanding and providing for the emotional needs of a child, particularly if the child is not autistic themselves
  • discomfort with providing for the social needs of a child, for instance, allowing friends over
  • conflict between the need to spend time with the children versus the need to attend to personal interests/obsessions
  • over-reliance of the parent on the child, as the social communicative abilities of the neurotypical teenager comes to exceed those of the autistic parent

So yes, there are challenges associated with being a parent on the autism spectrum. What I wish to stress is (and I think any parent would agree), there are challenges to being a parent full stop, whoever you are and whatever your neurological makeup.

If we were to look at conditions amongst the population with potential to lead to “bad parenting” what might we think of? Autism, yes. But what about physical disabilities which limit strength and mobility? What about mental health conditions such as schizophrenia or PTSD? Personality disorders such as narcissism and sociopathy? Would we count single mothers? Lower socio-economic status and poverty can certainly play a role, but so can high socio-economic status if it results in arrogance and entitlement.

So basically, if we were to search for people with the potential to be bad parents, we might be looking at the entirety of humanity.

I hope you get what I’m saying. Parenting is challenging for everybody, in one way or another. It is entirely dependant on the individual whether they can work out positive ways to rise to that challenge, within their ability. Some can and some can’t. Why assume that autistics are incapable of recognising and working around their difficulties, or in seeking support if necessary? Autistics can make good parents or bad parents (or more likely, land somewhere in between), just like anybody else.

One more thing before I sign off. Have you heard of the “double empathy theory”? In recent years there’s been research carried out studying the interactions between neurotypicals (NTs) and autistics and between autistics themselves. To paraphrase the findings, it was noted that NTs and autistics tend to misunderstand one another. However, autistics in general had a better understanding of other autistics than the NTs did. In other words, the cognitive empathy deficit goes both ways. It is not just autistics failing to understand NTs, but NTs failing to understand autistics.

What this illustrates is that the discourse on autism has historically been based on negative traits, observed and assessed from a majority NT viewpoint. It is only recently that people have started looking from the autistics point of view. What they discover is that many of these so-called negative traits seem perfectly normal and acceptable to the autist. To us, it may be the NT behaviours which appear insensitive and lacking in understanding and compassion.

I would suggest looking at autistic parenting in the same way. Traditionally, it is the NT majority who have come to a concensus on what type of parental behaviour is good or bad. Yet autistics are frequently appalled – utterly apalled – at the way autistic kids are treated by NT parents and people in authority.

[That was a meltdown not a tantrum – can’t you see the child is not misbehaving, they are overloaded and have no control. They need a quiet safe space to be left alone. What do you expect to happen when you yell at someone in a sensory meltdown? Or yank the arms of someone who is sensitive to touch? Why do you punish a child for behaviour that is out of their control? Have you no empathy at all?]

In other words, perhaps it is autistic parents who should be the authorities on how best to parent an autistic child. In this case, it is worth considering whether an autistic parenting style which seems different, or even wrong according to conventional wisdom, may be just what is needed.

That’s all I wanted to say – over to you.

Meteoropathy

Well, I googled it, and what do you know – sensitivity to low pressure weather systems is actually a thing.

Apparently, reduction in barometric pressure can lead to migraine headaches, painful joints, sluggishness and feelings of depression. Sounds about right. Some people are more sensitive to it than others. Meteoropathy is what the scientists call it when they induce it in their lab animals (poor mice!)

See, I’m not a hypochondriac after all!