The Best Laid Plans…

I recently asked on my FB page what the worst thing about chronic illness was. I got a lot of answers, with a lot of similar themes and a lot I identified with. I thought I might write today about one of those themes, and the one that effects me quite badly.

Making plans. And then having to cancel them.

The thing with chronic illness is that it’s highly variable. It ebbs and flows. One day you can be kinda ok and actually do a few things. Other days it’s the opposite. And the exact timing of this is so unpredictable.

Last Monday I was supposed to go to a talk. I was really looking forward to it. But instead I woke up with a migraine. That just got worse and worse throughout the day. So I stayed home.

Today I made plans to go to the cinema with my husband. Something I rarely do anymore. I felt pretty much ok all day. And then, one hour before we were supposed to head out, I started feeling really dizzy. And my peripheral neuropathy started acting up in my legs, causing intense pain and burning all the way to my knees. Probably set off by the ten minutes of hoovering I did earlier. Or maybe it would have happened anyway and I need to stop feeling like I caused it in some way.

At the end of March I’m giving a talk at a conference. I’m really looking forward to it. Although I haven’t written it out yet, I pretty much know what I’m going to say. And although I’ve never presented at a conference before, I’m not too worried about that part. What I am worried about, though, is if I get a flare up of my chronic illness symptoms on the day.

I can take certain mitigating steps to lessen the damage. I can try and have as comfortable a journey as I can the day before. I can go to bed early the night before (though that might be difficult due to excitement plus children who don’t sleep well away from home plus wanting to stay up and chat to friends I don’t see often.) I can take painkillers in the morning. I can make sure I’m well hydrated. I only have to talk coherently for 30 minutes and I can go hang out in the Silent Room afterwards. And I am sure the adrenaline will kick in during those 30 minutes anyway.

But still there’s the fear that the pain will be too bad to go ahead with my plans. That, with the best will in the world, I may need to duck out. Tiny chance of that but there’s still a chance.

That, for me, is the worst part of having a chronic illness. Shit happens. And though I’m getting better at accepting that, it would be so nice to make a plan and then not worry about it.

There’s a Muslim phrase that’s used a lot by my relatives and friends in Turkey. Inshallah. God willing. It kinda means that “it’s likely that something will happen but don’t get mad if it doesn’t”. I’m not religious but these days I silently add it to the end of any plans I make. Because there really are no guarantees in life.

To sum up: Shit happens. And when you’re chronically ill, shit happens chronically. And I’m getting more ok with that.

The Autistic Doesn’t Fall Far From the Tree.

I’ve been thinking a lot about the parents of autistic children recently. Seeing I am one myself. And, in the way that I do, I’ve begun to notice patterns.

One of things I’ve noticed is the sheer amount of parents who recognised that they are autistic themselves via their child(ren)’s diagnosis. It seems to be a very common pathway to adult diagnosis. My own experience matches this. I found myself sitting in the assessment office, answering a questionnaire about my son, and thinking I could give the exact same answers about myself. And I hear this story, this lightbulb moment, over and over. These parents are the ones most likely to jump straight into autistic self-advocacy.

Another common pattern I have noticed is parents who come out with things like “I’m a bit quirky myself” or who notice similarities between their children’s experiences and their own childhoods. They haven’t had any sudden lightbulb moments, and either haven’t yet realised they’re autistic or are just not quite ready to acknowledge it yet. They may use phrases such as “slightly on the spectrum” as they explore the possibility that they are autistic. These parents need help and encouragement to do so, a gentle push as it were.

And then there are the parents who strongly insist that they are definitely not autistic. And yet…. I get the feeling that they are protesting too much. They are masking really heavily but I’m getting better at spotting when their mask slips. They are often very ableist, and often fall into the category of “Autism Parents”. I used to react very negatively to them, often recoiling from them. But these days I feel more open to trying to connect with them. I see them as lost souls, whose internalised ableist prevents them from ever accepting themselves. But there is still hope that, given time, this may change.

The above are examples of the vast majority of parents I come across who have at least one autistic child. I do occasionally encounter a parent who isn’t autistic in any way, shape or form. But if you dig deeper you find that the other parent of the child is. Or at the very least is neurodivergent in some way.

The vast majority of these parents are undiagnosed. I don’t believe that they need a diagnosis necessarily. But I do think that if they can recognise that they too are autistic, they will connect with their children better. And connect better with the autistic community. Their peers.

And if we, who are firmly planted in the autistic community, can stop and think “maybe this parent is autistic but doesn’t know it”, it might help us respond to them in a more compassionate way. Internalised ableism, fear and panic, are so much harder to deal with when you feel you are in a “us vs them” situation.

Recognising that most autistic children have at least one autistic parent may go a long way towards building an inclusive autistic community. Which ultimately helps us all.

Brain teaser.

I was diagnosed with something that was called a syndrome at the time but now, under new criteria, I would be diagnosed with a “spectrum disorder”.

It used to be thought to be very rare but now some expert estimate it’s prevalence at 1-2%

It is hereditary but so far no genes for it have been definitively found, just some preliminary candidate genes. It is probably caused by many different genes.

It can effect people in very different ways, even within members of the same family.

It effects every single part of me and I cannot separate it from “me”.

Assuming all of the statements above are true, what am I describing?

Where’s the proof?

When someone tells you something is a certain way, how do you know what they’re saying is true? Do you just accept whatever they say, or do you go looking for proof? What constitutes proof for you? In the absence of proof, do you just go along with what the majority say? Is consensus always right? In the absence of proof, is something automatically wrong? Should it matter?

I have been doing a lot of questioning lately.

Accessing Disability Supports for Children in Ireland

I have just read some comments by the mother of autistic children here in Ireland saying that by claiming that autism is not a disorder, autistic advocates are going to get disability supports taken off her children and others like them.

This is simply not true.

I know autistic children who had access to OT, SLT, physiotherapy and psychologist support, without a diagnosis. They just needed a referral from their school and their GP, based on their perceived needs. In fact, these same children had their supports taken off them AFTER getting a diagnosis of autism, as they were then transferred to “autism specific” services, which currently have a waiting list of over two years.

Likewise, if your child needs to use a laptop in school, an OT will do an assessment to see if they qualify. No diagnosis needed. Same for supports needed during state exams. You don’t automatically get these supports just because you have an autism diagnosis. The criteria are stricter than that.

Same goes for access to an SNA (Special Needs Assistant) in school. The school has to submit a robust application stating why the child needs one. Diagnosis alone isn’t sufficient. And many children with SNAs don’t (yet?) have a diagnosis.

Also, if you are applying for DCA or carer’s allowance, you need to prove that your child has needs significantly greater than their peers. No specific mention of needing a diagnosis is made. Again, I know of children without any specific diagnosis whose parents have qualified for these allowances. And judging by how hard it is to qualify, having a diagnosis may make proving your case slightly easier but it is by no means enough just to have one.

Same goes for the Incapacitated Child Tax Allowance, which again isn’t based on any specific diagnosis but on the judgement of your GP on whether your child will ever earn an independent living.

Recognising the difficulties with accessing diagnosis, many Irish autism charities help children irrespective of whether or not they have an official diagnosis. That is not going to change. (Except for the fiasco that is AsIAm’s autism card which demands a diagnosis).

So, for those parents freaking out over whether autism is or isn’t a disability, it doesn’t actually make any difference. Here in Ireland at least. In either case, we are left fighting for whatever scraps we can get. But these scraps are handed out based on assessments of needs and not on any official diagnosis. So if your child is disabled, they are disabled. Whether or not they are also autistic. Nobody is saying they shouldn’t get services based on their needs.

And anyone arguing that we are saying otherwise either misunderstands our argument or is being disingenuous.