Autonomy in the face of Ageism.

My 89 year old mother-in-law fell two days ago. She waited on the ground for two hours before an ambulance came. When the paramedics picked her up off the floor, she refused to go with them to the hospital. As it happens she fell again today and this time she consented to going with them.

My husband is angry. At the paramedics. For not “talking her into” going to the hospital the first time. That, at her age, she doesn’t know what’s best for her, even though she shows no signs of cognitive decline. I have no idea why she didn’t go, but I suspect it had to do with the fact that she waited 16 hours on a trolley in a corridor the last time she was brought by ambulance to hospital.

I’m sure she knew what the risks were, weighed up the options and decided to risk not going. And this time decided it wasn’t worth the risk. And I’m thankful the paramedics respected her wishes and didn’t try to convince her “for her own good”.

At the same time, my son decided he couldn’t endure another second of school and decided not to go. My daughter followed suit, as she’s hated school since her very first day. They have thoroughly researched their options and decided they want to be home educated. Unfortunately their father doesn’t agree, even though I do. As he can’t exactly drag them kicking and screaming, we have found a short term solution where they go just one hour a day and hang out in the resource teacher’s room.

Both my husband and the teachers say that the children cannot possibly know what’s best for them. That they need to go to school “for their own good” and that we cannot allow them to “dictate” how their education should go.

But I know the kids have thought carefully about things. They have weighed up the risks. Especially as it’s a matter that may have serious consequences if it doesn’t work out.

In both the above cases, people are told they are either “too old” or “too young” to know what’s best for them. Attempts to “talk them into” changing their minds are seen as a good thing. Yes, at least they are not being dragged kicking and screaming to hospital or to school. But subtle pressure is pressure nonetheless and has damaging effects.

And while I don’t believe that every whim of a person should be entertained, I do believe that once someone is aware of the risks and possible consequences of a course of an action that effects them directly, they should be allowed to make their own mind up, whatever their age.

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“You don’t look it.”

Last night I watched the documentary “Unrest” by Jennifer Brea, on Netflix. It documents the lives and struggles of people, like herself, who have been diagnosed with CFS/ME. The people in the film are mostly those with the severe form, who often don’t leave their homes or their beds. The ones who are hidden from view, the #MillionsMissing.

I have a lot of thoughts about the film, and I’m sure I will write about many topics inspired by watching it. But right now, I want to write about Jennifer’s face. Huh? What does her face have to do with anything? Let me explain.

The film starts with her lying in the floor, unable to move. All we can hear is her breath. Slowly she inches her way into bed. And all we can really see is her face. And it looks awful. We can clearly see how exhausted she is, how difficult it is for her to do anything. Throughout the film, there are numerous closeups of her face. During her difficult moments, the pain, grief and trauma is etched upon her face. If someone said “this lady has CFS/ME”, nobody would doubt it. We can see it, because we have the privilege of seeing, in this film, something that usually remains hidden: her worst days.

But at other times in the film, her face is smiling, beaming even. She has maybe managed to walk a little, or met up with some friends, left her bed and her house. During these moments, if someone pointed out that she has CFS/ME, I can imagine some folks would doubt it. They might not say it out loud, but they would be thinking “she doesn’t look it”. Because they are only seeing her at her best.

And this is a situation that occurs to me, and the vast majority of disabled people, especially those with more “invisible illnesses” when we speak up about our diagnoses. “You don’t look it”. Because we are often actively trying to mask how tired we are, how much in pain, or how we don’t quite understand what’s going on. We hide our stims and our distress. Because we know they upset you. Or maybe we’re having that rare day where we are feeling less tired, less in pain, or are actually enjoying ourselves. You may be seeing us on the rare day we have managed to leave the house. You are seeing us at our best.

And so you judge us. Call us fakers. Think things can’t be “that bad” or that we are somehow “cured” now. But if you could peek into our lives, our bad days, if we recorded them and broadcast them to the world like Jennifer did, you would realise how wrong you are.

And so, I love this film. The rawness. The bad days. The despair. Because it shines a light on what too often gets hidden. On who gets hidden. And shows that there is so much more going on than what we portray when we leave our homes, what you choose to see.

And if we “don’t look it”, it’s simply because you’re not looking closely enough.

A little autistic?

“Everyone is a little autistic” is a sentence guaranteed to anger a lot of autistics. It is often used by non-autistic people to belittle us, to imply that our struggles are not so bad or so different from theirs. The usual retort by understandably angered autistics is “nobody is a little autistic. You’re either autistic or you’re not”. Unfortunately, that not entirely accurate.

I have taken a lot of “Are you autistic” type tests. And although I always scored highly on them, I often wondered about the cutoffs used in these tests. “If you score above X you are probably autistic”. What about those people who score just one or two points below X? Five points below? Who defined the cutoff as X and how? I realised that whether or not someone is autistic is not black or white. The same problem exists with the criteria used to officially diagnose autism. There is a grey area where someone can have some traits but “not enough”. I call these people “grey autistics”. In my opinion, that are autistic if they think they are. And often they are more autistic than they realise, as they may develop more traits as they get older or circumstances change, or they may have more traits than they realise, subtle traits.

There is a group of people defined in scientific literature as belonging to the Broader Autism Phenotype (BAP). These correspond with my “grey autistics”. They are close family members of autistics, often parents, who have some autistic traits but not enough for a diagnosis. At the moment, most research about them focuses on demonstrating the genetic nature of autism.

If these people wish to define themselves as “a little autistic” then I believe that is their right. However, this is not the same as saying “everyone is a little autistic”. Given that the prevalence rate of those belonging in the BAP is currently about 5%, and that of diagnosed autistics is around 2%, it is clear that 93% of the population is clearly not “a little autistic”.

(There are also “autistic cousins” who are not in the BAP but have some autistic traits. I have written a bit about those here.)

ARFID: an Autistic eating disorder?

A conversation amongst some autistic friends on twitter about eating issues, reminded me that this blog post is long overdue. These are just my personal thoughts into the links between autism and ARFID, as there hasn’t been much research in this matter, though there is an ongoing study into autism and eating disorders at Kings College London. (And if you’d like to take part, you can find the survey here)

Though you will find studies linking anorexia and bulimia to autism, not much has been written about those of us who are autistic and have eating issues unrelated to fear of weight gain. That said, it is common to find many of us with such issues. A Twitter poll I ran last year had over 200 respondents, 86% of whom said they had such issues. Obviously, a Twitter poll is in no way scientific but I do find them useful for seeing if I’m on the right track with an idea.

There are many eating issues that autistics have that fall under the umbrella of ARFID. If you need a reminder of what ARFID actually is, I wrote about it here.

One of the issues, often mentioned by parents of autistic children as being of concern, is the subset of ARFID that is known as Selective Eating Disorder. This is where the individual only eats a very limited range of foods. Obviously, many adults also have this issue, but some have been able to expand the number of tolerable foods over time. The reason behind this eating issue is often sensory. We intensely dislike certain tastes or smells or textures. It’s more than just being picky or not liking it very much, we will often choose to starve rather than eat the food in question.

Another subtype of ARFID is that caused by an “apparent lack of appetite or interest in food”. This is an issue that I have not really seen written about but that comes up time and again when autistics talk amongst ourselves. Quite often it is in the context of our special interests, when we are so focussed on these that we simply forget to eat, or don’t realise that we are hungry. This can happen at other times too, like when we are stressed or anxious, or often for no discernible reason. We often don’t have strong hunger cues until it is too late and blood sugar issues are what finally remind us to eat.

A lot of the autistics I speak to don’t have a diagnosis of ARFID, and most don’t realise they may have an eating disorder. They simply have “food issues”. I don’t necessarily think a formal diagnosis is needed or particularly helpful as it is not clear if the newly-developing strategies for ARFID are helpful for the autistic population. We often don’t react in the expected way to psychological therapies that help non-autistic people. It is certainly an area where a lot more research is needed.

I want to end this little piece by saying that if you’re autistic and have any of these food issues, you are certainly not alone. Although not talked about enough, I do think the issues with eating that autistics have are finally getting some recognition. I’m guessing that most autistics struggle with eating at various points in their lives. Not all of them will struggle to the extent required for a diagnosis of an eating disorder. But it can be a problem all the same. And I think that we autistics will be the ones to develop strategies that will help us to eat in a way that is healthy for us.

And the first step towards this is by talking out loud about it.

[image of a child with elbows on a grey topped table, with their cheek resting on one fist, looking glumly into the distance. Beside them is a pile of raw, whole vegetables such as tomatoes, peppers, lettuce and kale.]

Exploring 2018

I saw this Calvin and Hobbes comic strip this morning and it sparked something in me. I have always loved Calvin and Hobbes but hadn’t seen this one before.

And yes, it hasn’t snowed here. It probably won’t this year, besides a few fleeting showers of feeble snowflakes that never last long. But I still like the sentiment.

And so, this year, I’m going to go exploring. Not just the great outdoors, but also in every other way. I’m going to try new hobbies, explore new foods, read more books, explore both offline and on.

Online exploration might include using Google Earth to literally explore new places. Or I might follow new people and learn more about their world. Explore music. Art. Architecture. Gardens. All within the comfort of my home.

And I think I’ll write about all the things I discover while exploring, as I’d love to take you all in this journey with me.

The Failure of The Last Jedi

Warning, this post contains spoilers. Obviously enough.

To me, The Last Jedi, like most other movies in the franchise (not counting the ridiculous episodes 1-3), is about Luke Skywalker. I mean, come on, it’s literally in the title. Luke *is* the Last Jedi, in the sense of a formally trained Knight of the Jedi Order.

If The Force Awakens is about “the hunt for Luke”, “where is Luke?” “What happened to Luke?”, The Last Jedi is about “ok, we’ve found him, now what?” Yes, sure, there are other characters, a whole cast of diverse ones, and whatnot, but to me the movie still hinges around the same white dude they all have. The farm boy who fulfills his destiny, and learns lessons along the way.

In this episode, the lesson that Luke learns is a vital one. And it is his old master Yoda that teaches it to him. Not Rey, with her love of his heroics and pleas for him to save the day. Not Chewie and reminders of past battles and friends now gone. Not even his sister, both in her holographic past self message from A New Hope, brought to him by the ever faithful R2D2, or in her final hours. None of these were enough to get him to do what was needed.

No, it was Yoda and his message of failure that did the trick. Yoda taught him that without failure there will never be success. That to be truly great, we must embrace our failures. And only when Luke finally learnt that message was he able to do what was ultimately required, and to finally die in peace.

Though, Yoda’s return also reminds us that, in Star Wars at least, nobody truly dies, especially not Jedi masters. So, although Luke made the ultimate sacrifice, I would not be at all surprised to see him, at least for brief ghostly moments, in future episodes. As long as Mark Hamill remains with us, Luke will as well.

For me, underneath the special effects, the epic battles, the love stories, Star Wars episodes have been a series of parables. And the lesson in this one, the one that Luke finally learnt, is important for the perfectionist in me. I do believe it’s one of the most important lessons for us all. Do not be afraid to fail. Failure is not a moral weakness. Embrace your failures and learn from them. Otherwise we can never truly learn anything at all. And otherwise we can never truly be at peace.

New Year’s Reflections

So….it’s 1.32 am so officially 2018. And I’m a little tipsy and actually quite awake, so perfect time to write a New Years post, right?

Not going to be long, but want to document my thoughts on the last year and my hopes for the next.

2017 was the year that Twitter really came into its own. When I learnt so much about myself, my neurology, my gender, my sexuality, my queerness. I read up, I listened, I learnt. I made mistakes. I made amends. I made amazing friends. Still haven’t figured everything out but I guess I never will. There is always more to learn.

And my wish is that this trend continues for 2018. That no matter what life throws at me, my friends will have my back. That my inner strength and self-knowledge will continue to grow. And that I can give back to the community that has given me so much.

And that’s it really. I could say some words about the state of the world, about Trump, about Brexit. But it’s all been said before, by folks more able to write about such things. So I’ll leave it on a personal level and wish the best for me and all those I love.

You know who you are. Xxx