Anatomy of a Near-Meltdown.

I feel awful just now. Got that tight feeling in my head that warns of imminent headache and meltdown. My whole body aches and I’m exhausted. Sitting here on sofa, wrapped in a blanket, with a glass of cold juice, trying not to cry. I feel like I’ve had a horrendous day. When in fact, all I did was walk into town, with my family, buy a few snacks, and walk home. Sounds so simple. Yet was anything but. Let me break it down…

First of all, I didn’t sleep too well. My son woke me at least six times, with nightmares and vague feelings of being unwell. I then woke up with a mild headache.

I’d wanted to go into town to buy certain snacks my son likes. But it was raining. So we waited for the rain to stop. By the time we realised it wasn’t going to stop, it was four o’clock. So we decided to head out anyway, armed with umbrellas. Now, I normally don’t use umbrellas as I hate having to hold them, I have one less free hand, and because I’m so short it’s hard to walk by people without fearing poking their eyes out. But it was raining so much that I decided to risk it. Plus I didn’t want to be the odd one out.

Then we walked into town a slightly different route to normal. Only a tiny deviation but enough to put me off-kilter. I have my routes planned out very carefully, for example to minimize number of roads crossed etc. When we got back onto the normal path, I realised that the road had a huge puddle in it, the way it normally does when it rains. And because I was walking with others, I was unable to dictate the pace we walked at. On my own, I’d race past that section before a car came and splashed me. Luckily no such car came, but it did leave me a little on edge.

Next, we had decided to stop off at the market to get some food at one of the stalls. I was so happy to see the stall still there as I know he closes up around five. But my joy changed to upset when he told us he was sold out. The only good thing was the kids took it well. But there went our food plans and I was starting to get cranky.

So we headed on to the supermarket to buy the snacks and maybe food for dinner. As soon as we set foot inside the door, I realised that I was too tired to deal with all the brightness. But I marched on. I nearly freaked out when I thought they’d changed the layout, but then realised I was simply in the wrong aisle. So I found the snacks (a certain brand of pretzel sticks) and got a few more things. And went to the till. Luckily not much of a queue. Unluckily there was a bag-packer, who started filling my bag without even asking. But it was for a homeless charity so I had to smile and give her some change. I really hate when someone else packs my bags for me.

Then I realised the bag was actually a bit heavy. And because I had the umbrella, I could only hold it with one hand. I remembered we were out of coffee so went to the one place that I buy coffee beans. And because they don’t have the beans I buy on display, as they are the special blend they have in the cafe, they had to go to the store room to get it. I normally am fine with this, but again it added to my stress, with the extra waiting required. They then put it into a paper bag. Which added to my distress because of what happens to paper bags in the rain.

So we walked home in the rain. My husband had gone to get a haircut so it was only me and the kids at this stage. Trudging home in the rain, two bags in one hand, an umbrella in the other. And my feet started aching around the stage where they always ache. When we’re nearly home but still have over five minutes to go. And every step is agony. And I started feeling dizzy.

And when we got home, I fumbled with the keys. I dropped the paper bag. I nearly forgot the code for the alarm. I was done.

So, here I am, needing to get up and start cooking dinner. It’s getting late. I should light the fire too. But instead I’m fighting a meltdown. I’ll be playing catch-up for the rest of the evening. All from just a quick trip into town for about an hour.

So, next time you wonder why an autistic person, or someone with a chronic illness (or both) may have a meltdown from something that’s “easy” for you, just remember that they may be coping with a lot of stuff under the surface. And that each “little” thing that goes wrong in their day can really add up.

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Rightful Lives – Something About Us

I was lucky enough to meet British autistic advocate Dinah Murray a few months ago. She had some good advice for autistic people in Ireland who are trying to get their human rights respected.

And then, just today, I came across this video curated by her, and made by autistic people. Although it was made ten years ago, it’s still very relevant today.

Something About Us

The Commodification of Autism

A study was published this week, stating that the average cost to families, in 2014-2015, of caring for an autistic child was over €28,000 in Ireland. With an additional €14,000 being spent by the government. Obviously, this included quite a wide range, from children who don’t cost much more than Neurotypical children, to ones who need quite a lot of specialised supports. A more useful figure, perhaps, is the median cost, which was just over €6,500.

Putting aside the glaring statistic that families are paying the brunt of the costs (75% of the total costs, as opposed to the 5% from a similar study in the UK), it is a rather shocking figure. The costs included things like home adaptations, and lost income (though only for those who actually worked, lost income from a parent giving up their job to become a full time career was not factored in).

Almost a fifth of the costs were “medical costs” and the bulk of these were assessments and “private therapeutic interventions”. Seeing state services such as occupational therapists and speech-and-language therapists are so hard to access, most parents seem to opt for private forms of these. And with prices as high as €100 an hour, it’s not hard to see how the costs can rack up. Unfortunately I suspect ABA practitioners may also be taking a chunk of this cash.

It really does seem that when Autism is involved, parents are seen as cash cows. They have been scared into thinking all these therapies and other expenses are vital for the wellbeing of their children. And that rather than wait on the scandalously long waiting lists (up to three years for some services), that they need to pay these rip-off prices.

Add to that all the “autism specific” items and accessories that no autistic child could possibly survive without. One such product I recently came across was an Autism Empathy Doll , costing £68!! It’s basically just a slightly creepy looking cloth doll. But pitch it at parents of autistic kids and it seems cost is no object.

And then there’s the cost of off-label medications such a melatonin. The liquid variety, for the many autistic kids who cannot swallow tablets, can cost hundreds of euro a month here, even though you can buy it over-the-counter in the US for a fraction of the cost. And it’s one of the few medications not subsidized by the government. I won’t even mention all the supplements and snake oil and quackery sold to “cure” autism. Those can end up costing a fortune.

Personally, we don’t spend anywhere near the numbers quoted in the study on anything “autism specific” for our children. Our chemist has, after a lot of searching, found us a cheapish generic melatonin. We have never opted for private therapies, and although we did get a private assessment for our daughter, the price was very reasonable. We bought a few sensory toys and things like fidget spinners. But not in “special needs” shops. We bought a weighted blanket off a lady in Waterford who makes them at home. I am very careful to avoid anything that sells itself as specifically “for autism”. They smack of marketing and exploitation.

What autistic children need is not expensive private services, products or supplements. What they need is something money can’t actually buy. It’s love, acceptance and respect for their basic human rights. And that’s something my children get daily, and I truly wish it for all autistic people, children and adults, worldwide.

On Empathy

There is a myth out there that all autistic people lack empathy. Due to the stigma attached to a perceived lack of empathy, there has naturally been a backlash amongst autistic people and their allies against this myth. There are whole blogs dedicated to debunking this myth.

But it’s not as simple as that. Some autistics, myself included, do genuinely have low empathy. Rather then being an autistic trait, however, it seems to be a part of alexithymia. Studies show that autistics who also have alexithymia are the ones who show less empathy. Autistics who don’t have alexithymia have typical, or even high, levels of effective empathy.

I have spoken to other autistics who have low levels of empathy. And their feeling, which echoes mine, is that in the backlash against the myth that autistics lack empathy, we are being erased. There is such stigma against not having empathy that the pendulum has swung the other way, with a myth growing that all autistics have “normal” or even high levels of empathy, but might have trouble showing it.

The only way to counter either of the two myths, is to remove the stigma against having low empathy. Lack of empathy does not make us monsters or psychopaths. It does not mean we don’t care about others. Intellectually I know that it is wrong for humans, and other living beings, to suffer. I don’t want them to suffer, or even be sad, and will do what I can to help them.

I’m getting tired of people assuring me that “actually” I do have empathy. Of telling me about the “double empathy problem” and that it’s only NTs I can’t empathize with. (Sorry but I have low empathy for other autistics too) Of telling me about the different types of empathy as if I can’t do my own research. Of “empathy-splaining”.

I have low empathy for others. And I will no longer pretend that this is not true. I will no longer mask this side of me. I will no longer feel ashamed about it, that I’m “perpetrating the myth” or “letting the side down”. I will no longer be erased.

Alexithymia

I was having tea with an autistic friend today, and the subject of Alexithymia came up. Like so many other things common in autism, (like my prosopagnosia) I’d skimmed through the literature on this condition, thought “that sounds interesting. Glad I don’t have it though” and moved on. Only recently have I realised that, actually, this is something I have quite strongly.

Alexithymia is defined in Wikipedia as:

a personality construct characterized by the subclinicalinability to identify and describe emotions in the self. The core characteristics of alexithymia are marked dysfunction in emotional awareness, social attachment, and interpersonal relating. Furthermore, people with alexithymia have difficulty in distinguishing and appreciating the emotions of others, which is thought to lead to unempathic and ineffective emotional responding.

I can’t identify my feelings beyond “happy”, “angry”and “sad”. And even then, happy and sad are rare enough. I know I’m anxious only by noticing physical symptoms like sweaty palms and a strange feeling in my stomach (butterflies). When others are in a bad mood, I read it as “angry” even when they’re not. In fact, seems my default description of any emotion in myself or others is “angry”. And it’s usually wrong.

Something I hadn’t realised was part of alexithymia is lack of imagination, especially in dreams. And yes, I struggle to “make up” imaginative tales, like bedtime stories for the kids or the creative fiction part of my school English exams. My dreams, those that I remember, often involve things like being back in school and not having studied for my exams, having my teeth crumble and fall out, or trying to find a toilet that’s clean and not broken. (And when I wake up from the last one, inevitably my bladder is extremely full). I never dream of things that are surreal, like flying (except in a hot air balloon or glider).

I now realise that alexithymia might be a factor in my being aromantic. I think maybe I do “fall in love” but just can’t recognise it or describe it? It also explains why I believe I have lower empathy than a lot of people. How can I respond to other people’s emotions when I usually have no clue how they are feeling?

As usual, my next port of call was reading what other autistic people wrote in the subject. These included Musings of an Aspie and Unstrange Mind. I also read research papers on the topic. Finally, I did an online Alexithymia questionnaire . As you can see from the below image, I scored 151 points. Which means I have “high alexithymic traits”.

So, yet another aspect of my personality that I am only now discovering. Yet another “oh, that explains X,Y and Z” about me. One more piece of the puzzle that is me.

Barriers to Accessing Healthcare

It has often been stated that autistic people face barriers to accessing healthcare that others don’t. In order to further study this, an autistic doctor has come up with a survey. There are three versions of the survey, one for autistic adults, one for parents of autistic children, and a control (for non-autistic people without autistic children).

If you have a few minutes to spare, I’d really appreciate if you could take part.

https://docs.google.com/forms/d/e/1FAIpQLScRhcyQ5aC13kWCLTSh-TBcG9Op91ONIe5T5Pk-yg5K9U3EKA/viewform

Perfect Day for a Change of Routine

Like a lot of autistics, I’m a creature of habit. So, when I get stuck in a rut, I find it difficult to change my routine. I know I need to change, but have a hard time starting.

I also have a strange fascination with numbers, dates and doing things on certain days. I find it so much easier to start a new routine on the first day of a new month, or on a Monday. And so, because today is both a Monday and the first of October, I think it might be a good day to start a fresh routine.

I haven’t finalized the details yet, but I do have a list of things I want to work on, namely:

  • Eat more
  • Try new recipes
  • Stay hydrated
  • Go to bed earlier
  • Get better at managing my budget
  • Get better at managing the housework
  • Spend at least five minutes outdoors every day
  • Write/work on a blog post every day

I think this post covers off the last item in that list, for today! Now to go update my Bullet Journal and try and incorporate some new habits.