My favourite posts by #ActuallyAutistic bloggers in 2017

These are not in any order, as I find it impossible to ever assign “number one” slots etc. They are just blog posts that caught my eye, and my heart, this year. By autistic bloggers who have done the same.

This post is just brilliant, as is the other autscriptic blog post. Captures a lot of what I wish I could say to people who go on about “mild” autism. Mild autism

Ryan Boren wrote a really good gift-guide just before Christmas. What I really appreciated was his review of vaporizers and other things linked to medical marijuana as it’s one product often left out of such guides. Gift guide for chronically ill

As always, Kassiane’s sarcasm and dark humour shines through this almost unbelievable post. If my kid could do that…

Here Anna describes something that happens to me a lot and that often prevents me from writing this blog. Lost for words

I would recommend every single blog post written by autistics criticizing To Siri With Love. Hard to pick out just one but it really liked this post by Liz that touches on broader themes. To Siri With Love: The oppression of…

I cannot resist criticism of Simon Baron Cohen and Max has captured a lot of my feelings about a recent paper he wrote. Dr Simon Baron Cohen does not understand…

And finally, not a blog post as such but a great resource for finding autistic bloggers. An Autism Observer

To sum up, I really love all these bloggers and you should read their other posts too.

And I really must update my blogroll. Another job on my “improve my blog” to-do list for 2018!


Our autistic Christmas

Lots of autistic folks are writing blog posts sharing tips on how to survive Christmas, which can be a very difficult time of year for us. I’m not going to do that, but rather just describe my plan for today. It’s a plan and routine that I have honed over the last few years and that suits me and my family.

Right now, I am in my freshly-tidied library room, chilling on the sofa and writing this.

As soon as they woke up, the kids came into my bedroom, woke us up, and chatted and cuddled for a while. And then we went downstairs and I made coffee and we opened the presents. My husband tidied away the wrapping paper as we unwrapped things, because he doesn’t like having it strewn all over the floor!

[image shows my sitting room. There is a yellow chair on the left and a tv on the right. In between is a Christmas tree with its lights on. Under the tree are presents of various shapes and sizes]

For brunch I will cook a full Irish breakfast, consisting of sausages, bacon, eggs, toast and freshly squeezed orange juice. After that we will spend many hours playing video games together as a family. MarioKart to start and plenty of breaks to recover. At some stage I will read the new book my husband got me, while he reads the one I got him. The kids will play with their new toys.

We will eat chocolates and snack on cheese and crisps and various other things. Then I will start preparing the dinner. Experience has taught us that it’s better if everyone stays out of my way as I do this. Once dinner is ready, the kids will come and eat in the kitchen with us. It’s the only time they ever agree to sit at the kitchen table, as the kitchen is usually uncomfortable for them. So, we get an annual concession.

The hamster and zebra finches will be given raw Brussels sprouts for their Christmas dinner. While the dog gets lots of leftover turkey. He also got a new squeaky toy and some dog treats. We may take him for an extra long walk if it ever stops raining. Other than that, we are not leaving the house.

We may play some more video games after dinner, or watch tv in front of the fire, or go back to reading our books. We may hang out in the same room, or each hang out in different rooms.

And that is it. No visiting, no visitors, no pressure. Just an incredibly chilled out day.

“But how will we find them?”

One of my more popular tweets advised NT parents that, no matter what problem or issue their autistic child is facing, there is an autistic adult who has faced the same thing and can advise them.

A line that often gets thrown in our faces when we try to advise parents on helping their autistic kids is “you are not like my child”. And yes, it is true that I may not have faced the exact same problems your child has. But I can guarantee that there is an autistic out there who has had a pretty damn close experience.

Non-verbal? There are many adult autistics who were non-verbal as children. Many still are. Some have learnt to type and are willing to describe their experience.

Epileptic? I know many autistics who have co-morbid epilepsy. They have helped me so much with my own questions on the subject.

Stomach issues? Many of us have those, for myriad reasons. We can point you in the right direction to get some relief for your child.

Self-harm and self-injurious behaviour? Yep, so many of us have been there, done that.

Problems with activities of daily living? Eg brushing teeth, haircuts, getting dressed. We can advise on tips and life hacks and ways of getting to the heart of the issue.

Food issues? School issues? Executive dysfunction? Finding and keeping a job? Burnout?

There is no issue your child is facing that an autistic adult hasn’t. Might not be to the exact same degree, but we can at least help you help them. Offer ideas and solutions if we can. Work with you and your child, to help them in the most positive way we can.

My tweet did get one reply that at the time I thought was a parent being lazy. It was “but how will we find them?”. It annoyed me because I thought the answer was self-evident. But I now realise that not everyone knows the right words to search for, the right hashtags etc.

At the time, I pointed to the #ActuallyAutistic hashtag as a way of finding adult autistics. But now, thanks to @NeuroRebel we have the brand new #AskingAutistics hashtag specifically for this purpose. It’s gaining popularity, both by NT people asking for advice but also by #ActuallyAutistic people too. It’s a way of asking “hey, anyone have experience with X?”

A lot of us are spending time looking at the questions linked to that hashtag. And if we can’t answer them ourselves, we pass them onto those who can, or ask around and share. It seems to be a wonderful resource developed from the ground up.

So, there you have it. Have a question about autism? #AskingAutistics is the way to go.

Or if you don’t use twitter, it may be used on Facebook too. I know @NeuroRebel uses Facebook, but I don’t so I’m less clear on that part. Or you can contact us via our blogs too!

To Judith With Love…or maybe not.

Dear Judith,

I know you won’t mind me writing about you without asking you, or even telling you, beforehand. You’ve made it perfectly clear that that’s a fine thing to do. Maybe one of your supporters will tell you and you’ll get a nice surprise.

And I’m sorry I won’t be describing your looks. I can’t call you a Manic Pixie Dream Girl, because, quite frankly, you’re not. But even if your looks suggested you were “gamine”, I wouldn’t use such a sexist and infantilizing description. But if I did use a descriptor for you that you objected to, then ooops, I’m sorry if you’re offended. I was only trying to pay you a compliment without actually stopping to think about what the words actually mean. You should be grateful to me. I may even send some fans your way because you obviously can’t manage very well without me misrepresenting you.

And if you or anyone else objects, especially if they belong to a group of people that I’m writing about, a group that I’m not part of and know next to nothing about apart from my preconceptions, then I’ll simply block you all. Because I’m “very friendly”. And if you object to anything I write, then you’re simply a bully and a troll and lack Theory of Mind.

I’m sure you won’t mind if I write a book about how I want to sterilize you. Because I simply can’t fathom how someone like you could be a parent. Yes, I have decided you shouldn’t have children. And I’m going to tell the world of this fact. Pity I don’t also have your porn search history, as that would make a lovely addition to my book. Help to keep it real.

And I’m not going to ask your consent to write about you. Or ask you your thoughts. Do you even have thoughts? Are you capable of such things? I have no clue but I’m just going to make up a load of shit about people like you. Maybe throw in some out of date research to pretend my thoughts have some legitimacy. Maybe I’ll say that you are brain damaged. That’s always a good way to get pity from the public.

And if other people like me read my book, maybe they will get the genius idea to have annoying people like you sterilized too. And if they do, I will claim I’m horrified by the idea. That I was just talking about you and not anyone else and how could they think such a thing. I’m quite good at faking outrage as it happens. Anything to drive up book sales.

But you know, dear Judith, I’m not going to do any of those things. Because I actually care about peoples privacy. And don’t promote eugenics.

Inclusion, in the context of education.

I got into a debate on Twitter today, about the segregation of disabled children into so-called “special schools”. I think some people misunderstood me, so I want to see if I can write out my views a little more clearly. I’m also going to speak only of my personal experience, of having a sister in a segregated school and children in a mainstream school.

I do not believe Segregated Schools are the best option for any child. But, right now, they are often the only option. Or the best out of available options. And that, I think, is a problem.

Right now, the only options available, in Ireland at least, are segregation, a special “unit” (usually only for autistic kids) in a mainstream school, “inclusion” in a mainstream school or home education. And, right now, none of these options are ideal.

Segregation into “special schools” used to be the norm for disabled children. My mother-in-law was a “special needs” teacher. I hate those terms but they’re what is used here so I’ll go with them for this post. She was interviewed by the police a few years ago relating to if she knew anything about the widespread abuse, including sexual, of the children at the school she worked at. She was shocked and horrified, but I fear also very naive. And though there are now better safeguards, disabled children still get abused in these places.

Another problem with these schools feeds into more generalized isolation and segregation of disabled children. My sister went to a Special School. She enjoyed her time there and did well. But she still complains that she never got to meet any non-disabled children, except for the few friends from the neighborhood that she’d had since childhood. At the time, it was the best school available to her. But since then, the school we had originally wanted to send her to, where all her other siblings went, has become much more adapted to and inclusive of disabled children. Unfortunately this happened about 10 years too late for her.

Some schools in Ireland have what are known as “ASD units”. These are segregated classrooms for autistic children, but within a mainstream school building. Some of the children spend time in mainstream classes, but have the option to move back into the unit if they need to. I’m not really sure how good these units are, as I’ve no personal experience of them. They may suit some children. But I do know some teachers in them don’t have specialized training and I’ve heard mixed reports from parents. Plus, there simply aren’t enough of them. My children’s school doesn’t have one, for example.

So, moving on to my experience of having disabled children in a mainstream school in Ireland. The first thing I need to say is that their school “does not cater for” those with complex medical needs. Yes, they have a handful of kids with ADHD and dyspraxia. A few hearing impaired children. Asthmatics. Diabetics. Autistics. The only “visibly” disabled children are the girl with the bright purple hearing aids, and the little boy who uses a wheelchair. So, already, we can see that a lot of disabled children are excluded.

And, although the school does it’s best, even the few disabled children in the school aren’t fully ‘included’. There are staffing issues, with support teachers coming and going, and having their hours cut. There are lots of accommodations that could be made, but aren’t. There are lots of small things that could be improved but aren’t. And almost none of the teachers have specialist training.

A lot of disabled children in Ireland end up dropping out of formal schooling altogether and end up being educated at home. This can work well, but one parent needs to be available to do this and many families simply cannot afford it. And again, unless the supports are there, the child, and indeed the parent, can become isolated from society.

So, the above are the current educational options for disabled children in Ireland. And I’m not happy about that. I have a vision, a dream if you will, of fully inclusive education for disabled children. Imagine, if you will, a school with al, the supports available to Special Schools, but that all children, abled and disabled, went to. With more than adequate staffing levels. Where every teacher was trained in teaching disabled children. Where there were lifts and ramps and “changing places” type toilets with hoists. Where there were sensory rooms and quiet areas. Where there were small class sizes and teachers could teach to ability of each child. Where there was investment in the mental and emotional well being of all children. Where bullying was simply not a thing. This would benefit all disabled children, both diagnosed and not yet diagnosed, as well as benefitting abled children. A fully inclusive environment for all.

Al the moment, no such school exists. Not any I’m aware of at least. I realize it’s a pipe dream, a utopian vision if you will. But I believe that we should still fight for truly inclusive education for all children. It might not happen in my lifetime, but maybe it will for future generations.

And so, I’m not on some crusade to ban segregated schools. It’s simply not realistic, and in fact would be cruel, to close them down and force the kids into mainstream schools that simply are not prepared for them. This is what happened when adult institutions were closed down before any provisions had been made for those inside. We need to develop a culture of inclusive schools first, and then hopefully more parents will be able to choose to send their children to them.

Most parents are only trying to do the best for their children. They pick what is the best out of the available options. What needs to happen is that the range of available options is increased, not decreased. And then maybe more disabled children will be able to benefit from being included in society.

The next step in human evolution? Give me a break! 

There is a trope that gets bandied about every now again. Not just by ” Shiny Aspie” and “Aspie Supremacist” types, but by prominent autistics such as Temple Grandin and non-autistics such as Tony Atwood. And it is the throwaway comment that “autistic peoole are the next stage of human evolution.”

I’m not even sure where to start with this one. I’m not a geneticist or an expert on evolution. But I did study it in university and I’m pretty sure I have a grasp of the basics. And I believe that trope is wrong. Very wrong. 

I can see why those people would feel comfortable throwing the trope around though. It’s got a nice ring to it. It makes them feel like somehow autistics are superior. That at last we have a good thing going on.  But, really, that’s not how it works. 

First, let’s look at an image that a lot of people think depicts “human evolution”:

It shows a progression, from left to right, of what looks like a gorilla, to a more upright ape, to a “caveman” style early human, to a “modern” white man. I’m sure you’ve already spotted the racism and sexism in this image so I don’t need to point it out. Also, early humans who wore animal furs are actually no different, genetically, from modern humans so I don’t know why that’s there. Unless the artist meant to depict a Neanderthal, but we haven’t evolved from them so that’s totally wrong. Though we, or at least certain humans, may have some Neanderthal DNA somewhere. 

These type of “progression” images are actually quite wrong. Evolution isn’t some orderly progression from more “primitive” forms to more “advanced” forms, with humans at the very end. That is not how it works. Evolution is driven by adaptations to the environment in which the organism finds itself. So, if a “modern” human found itself somehow back in time to when the ape on the left was found, the ape and not the human would be the creature best adapted to the environment there. 

For a species to evolve, there has to be an advantage (or at the very least, a neutrality) to the traits that are passed on through natural selection. Right now, yes, some autistics might have an edge to using technology. But that’s not enough of an advantage. Many non-autistics are also adept at using, designing and working with technology. Let’s not pretend that those are exclusively autistic traits. 

Those traits would have to also form the basis of some sort of selection criterion for mating. Given how so many autistics have trouble finding a partner and having children, I’m not sure this is the case. Yes, more autistics are finding partners due to the internet and technology. This is a wonderful thing. But even if we all started having a heap more children, and even if more of our children were also autistic, perhaps due to us marrying other autistics, it’s not going to make enough of a difference to lead to any sort of “human evolution”. And unless we segregate the different neurotypes and prevent them from having children together, there is no chance whatsoever of any form of speciation. Non-autistics are just too well adapted to this environment for any autistic genes to ever dominate. And autistic genes will always form only a tiny percentage of the overall human gene pool. 

Is our environment right now slightly better for us autistics than it previously was? Certainly. Has technology played a big part in that. Of course it has. But please don’t mistake those small changes with us now somehow living in an environment where there is an evolutionary advantage to having autistic genes. That will probably never happen. 

And of course, environments change. Things like a possible nuclear war, and the disruption that will come with climate change, mean that we have no idea what an ‘evolved’ human race may end up looking like. If we don’t go extinct first, the next evolution of the human race may look more like a creature that can tolerate extreme weather and perhaps a radioactive athmosphere. And can fight other creatures over scarce resources. And I’m not sure autistic genes necessarily confer those advantages.