Book Review: Autism…What Does It Mean To Me?

I bought this book for my son, to use with his teacher, and my daughter was so impressed she insisted I buy her one too. So I did. Her teacher did not use it enough but at least we can give it to her next one. So, before we go Back to School and I have to give them to the school, I thought I’d share this book with you. 

First of all, it’s a Workbook, for the autistic person to fill out themselves, mostly by circling, highlighting or underlining what’s true for them. Chapters include an Intoduction, which includes pages such as ‘What is Autism?’, ‘Neurodiversity’, Person first and identity First Language. Other chapters are: The Sensory Experience, Ways of Thinking, Talent & Creative Expression, People, Understanding, Thoughts, Communication, School, Friends, Feeling Upset, and finally Happiness. As you can see, it’s pretty extensive!

Each chapter starts with worksheets on various sub themes related to the chapter. Then it goes onto a section entitled: Especially for Older Readers. This is more geared towards teenagers or even adukts and expands a bit more on the topics. Some of these expanded topics include ‘Internet Aquaintences’ ‘Depression’ and ‘Love’. So, good topics but I’d have liked some pages on Sex and Sexuality too. The final section of each chapter is: For Parents, Teachers and Therapists. It provides down to earth advice, both in how to get the most from this book but also in general. 

The entire book seems very respectful of autistics, which makes a refreshing change from other books also written by non-autistic writers. I really like it and would recommend it to autistics of all ages. And their parents, teachers and therapists, friends, family, grannies etc. I’ve enjoyed reading what my kids have filled in and written about their own experiences of being autistic. Especially as they have often written such different answers to the same questions. I’ve no doubt this book will continue to help them as they get older. 

Finally, I love the dedication, which reads:

“Dedicated to the autistic community, whose time has come.”

I wish I’d known

I wish I’d known I was autistic. That there was a reason I never fit in. 

I wish I’d known I was bisexual. That I didn’t need to have had a girlfriend, ever, to be so. 

I wish I’d known I was aromantic. That falling in love wasn’t a prerequisite for being human. 

I wish I’d known I was genderfluid. That I could sometimes be a girl and sometimes not. 

I wish I’d known I was NB. That I could be something other than a girl or a boy. 

I wish I’d known that I could be polygamous. That monogamy wasn’t the only option. 

I wish I’d known I had a chronic illness. That there was a reason I was so tired. 

I wish I’d known I wasn’t lazy. That laziness is a concept foisted on us by others. 

I wish I’d known these things and more. But, at least I know now. 

[image of a lot of multicoloured balloons, each tied with string to paper containing a wish written on it. The balloons are floating off into a deep blue sky.]

July Tiger Haul

Last day of July and I finally got to sneak off to Tiger and buy some stuff. 

The usual food I like (Dutch waffles, pretzels and nougat) plus Coconut chips (salty caramel flavour) and wasabi peanuts to try out. 

Other items I bought, clockwise from top left: 

A noteblock shaped like a tin of sardines. This is a joke for my husband as he’s obsessed with sardines at the moment. 

A magnetic board with the days of the week on it. Plan to put on fridge for meal planning. 

Set of pencils of various colours with built in pencil grips. 

Children’s scissors with a cover in the shape of a green crocodile, and another in shape of a pink mouse. 

A ‘magic die’ trick. My daughter is into magic tricks at the moment. 

Two pens, one pink and one green, with built in labyrinth game. 

Two pencil sharpeners, one green and one blue, shaped like bicycle bells. 

Two sharpeners with glass jar bases, one with seagulls painted on it, the other with pufferfish. 

A fidget spinner. Because you can never have enough. 

A pair of children’s gardening gloves. 

An ‘office hammock’ to try out on my kitchen chair to see if it will make me more comfortable. 

Midwitch cuckoo

I recently received a copy of All the Weight of Our Dreams , an anthology of pieces by autistic people of colour that I intend to review soon. Naturally, the first piece I read was my own, a short essay I’d written in 2015. And in it was an anecdote about my childhood. 

Back in the ’90s, an Irish journalist (who coincidentally is in trouble today for having written a misogynistic and anti-Semitic piece in The Sunday Times) interviewed my mother. It was published on the back page of The Irish Times Weekend Supplement, as far as I remember. I was quite young at the time, maybe eight or nine, though possibly younger. But I remember it well. Huge photo of the family, sitting on the sofa in the living room, surrounded by the Turkish carpet cushions my mom liked to sew. 

The interview itself was nothing special, I think. Discussed her life and her poetry and that sort of thing. But, he did add a comment about me and my siblings. We had sat in on the interview, as we always did. Sitting quietly and listening, as was our style. And, there in print, he referred to us as “Midwitch cuckoos”. I had no idea what that meant. My mother explained it was a sci-fi book about alien children. 

What she failed to mention was that it was a horror story. That the children were not only alien, but menacing and “evil” and the only way to save humanity was to murder these children. I have never been able to bring myself to read the actual book. But naturally, I went and read up on the book that we reminded him of.  Reading summaries of it was enough. But those two words lingered on in my brain for years after, and returned today upon seeing the journalist’ name all over Twitter. Midwitch cuckoo. Midwitch cuckoo. Midwitch cuckoo. 

What was it about us that put those words into his mind? Was it our shockingly blond hair? Our incredibly pale skin (thanks EDS!)? The way we just sat there silently and stared at him? I don’t know. All I know is that he picked up on something, (our autistic way of being?) and it reminded him of the alien children from that book. 

And, what must have been two throwaway words to him, two words in the few hundred words of his article, that he’d no doubt forgotten about soon after writing, have remained to haunt me to this day. Is it any wonder that autistic children and adults are treated so badly, when just sitting in our sitting room, minding our own business, gets us compared to evil, murderous aliens? 
[image of cover of the book The Midwitch Cuckoos]

We do not outgrow our autism

*Note: for some reason the WordPress app I use is not allowing me to insert any links. So, I have quoted some bits out of the articles etc I wanted to link. If and when this issue resolves, I’ll insert the links to the original pieces. 
Nearly a year ago, I read an interview with Toni Braxton in which she claimed her autistic son now showed “no signs of autism”. In fact, she claimed he was now a “social butterfly”. 

Of course, eyebrows were raised amongst the autistic community, especially when she went on to praise the founders of Autism Speaks and interventions such as ABA for the change. 

A few months later, I came across a study of some autistic children that achieved an “optimal outcome” (OO)of now being indistinguishable from the “typically developing” (TD) children in the study. Except, for this part 

OO were indistinguishable from TD, with the exception of greater extraversion (e.g., increased talkativeness), a potential tendency to be less emotionally stable, and pragmatic language deficits such as getting sidetracked in conversation. Overall, OO individuals are not showing BAP characteristics, but may be subject to other mild ADHD-like characteristics.

So, again these kids were “social butterflies” (increased talkativeness, less emotionally stable, getting sidetracked in conversation) and infact some researchers remarked that they now seemed the “opposite” of autistic. 

And, again, one factor that seemed to set these children apart was the fact that most of them received intensive interventions such as ABA from an early age. 

Also, note the mention of “mild ADHD-like characteristics”. Another study that followed autistic children who “no longer met the criteria for autism” showed:

Two-thirds displayed a language/learning disability, while nearly half were diagnosed with attention deficit hyperactivity disorder, oppositional defiant disorder, or disruptive behavior disorder. About a quarter showed signs of a mood disorder, an anxiety disorder, obsessive compulsive disorder, or selective mutism.

So, that’s an “optimal outcome” then, is it? Looks like something else is going on, to me. 

Lots of autistics talk about “masking”. It’s where we are able to “pass” as non-autistic, through various coping methods. But, we are still autistic. We appear to not be autistic, but it is all an act. And often, it is an unconscious one. And, it takes its toll. Years and years of actively suppressing autistic traits leads to exhaustion and break downs. I have yet to meet an autistic who masked for a long time and suffered no ill consequences. 

And so I worry. I worry for these kids who have now lost their diagnosis. Who don’t get the support and community they may need. Who now have the “diagnoses” mentioned in the passage above, which to me is their autism “breaking through” despite their suppression. Or who are “social butterflies”, which in my mind is them “trying too hard”. I worry for Toni Braxton’s son and what negative effects he may encounter in the future. 

And so, I contend that we do not outgrow our autism. We are still autistic. 

We may act less autistic, through the effects of intensive intervention, through masking, through various coping strategies. 

But, at what cost?

Autistic packing. 

As kids, we used to spend the entirety of our summer holidays in Turkey. And seeing as this was the 80s, and virtually impossible to find ‘Western’ stuff such as suncream and paper nappies, we used to bring A LOT of stuff. Bags and bags and bags. And as kids get their own baggage allowance, mom would fill our bags with stuff too. I felt like a mule. (Not a drugs mule!! Just an animal forced to carry heavy loads). So, I determined, once I had control over my own packing, that forevermore I would travel LIGHT. And so, I developed an obsession for travelling with as little as possible. Turned it into an art-form. 

Of course, now that I have kids, and disabilities, it adds a whole new layer of complexity, and an added challenge. And a lot of anxiety. And so, I have developed rituals and systems to counter the anxiety. So, I think I might go through my method in case it helps anyone else. 

First of all, usually a few weeks in advance, I write a long and detailed list. I may write and re-write it several times. This year, however, I picked up this pre-made list at my local Tiger store:

Once I have my list, I start gathering all the items into a pile. I also make sure I have cases etc to pack everything in. Most of the stuff goes in my carry-on wheelie and red bag. Did I mention we only ever travel with carry on luggage? Not only saves money, but also we hate waiting at those conveyor belt thingies. 

Now that the kids are older, they have their own wheelie bags and backpacks, though those are mostly filled with toys and snacks. I also bring a spare backpack as they are handy for drinks and snacks when sightseeing. 

Next, what to actually pack? As I know it’s going to be hot where we’re going, it’s easier to travel light. I pack one pair of shorts each for the kids, plus four t-shirts each. I also pack a pretty dress for my daughter. Also swimsuits just in case we end up at the beach. We don’t do beach holidays as the kids prefer city breaks, but you never know! The swimsuits for me and the kids are always of the separate shorts and tops type, no bikinis for us! But also easier to get in and out of than one-piece styles. As we have rounded shoulders, we also need tops where the straps can’t fall off. I also bring prescription goggles as I can’t see a thing without them! 

As for me, I pack three light dresses, which don’t need ironing. This year I seem to have an abundance of suitable dresses to choose from. 

I then roll all the clothing as tightly as I can and put in one layer in my suitcase. 

Next layer is as much socks and underwear as I can find. It is my experience that you can never have too many of either of those. 

Finally, the spare backpack and a light shawl/scarf. Plus night clothes, always on top so it’s easy to reach when arriving somewhere tired. 

The other side of the case contains non-clothes items. I will detail them next. 

First, I only bring as much meds as I need, I take them out of their boxes and put together in a toiletry case. This works ok as I’ve no meds that might require ‘explanation’ ie opiates. It’s mostly paracetamol, antihistamines of various types, and the essential melatonin for the kids. Also I bring a box of Diotalyte in case we get dehydrated. 

Next, I have tissues, various wipes including deodorant wipes and anti-bac wipes. Because we only bring hand luggage, I try to bring the least amount of liquids as I can. So, wipes are great instead. 

I bring my travel razor, just in case i freak out and decide to shave my underarms or legs. 

I bring a travel Tangle Teezer, so my daughter doesn’t end up with too many knots in her hair. 

So, that’s it for the main bag. Now onto my red handbag and the kids bags. 

I bring mini bottles of insect spray, suncream, toothpaste, mouthwash, and China Balm (copy of Tiger Balm) from Tiger. I also bring Mi Wadi Mini to add to water as my kids and I hate plain water but need to stay hydrated. I also bring small bottles of Calpol. I pack these into clear travel pouches, one in my red bag, and one in each of the kids wheelie bags. 

Other things in my red bag: a bag of Chupa Chup lollies, for takeoff and landing during the flight. 

A bag of Wether’s toffees, and a bag of pretzel sticks. So, sweet and salty snacks!

My trusty, foldable, cane/walking stick:

Tissues and ‘nappy bags’. Never leave home without tissues! The bags are great for rubbish, used wipes, but also for any clothes that get wet or vomited on during the trip. 

Speaking of vomit, my kids can get pretty travel sick, so I pack Dramamine too. And mints for nausea. 

I bring these empty spray bottles. I give one to each of the kids and keep one for myself. Handy for filling with water and spraying ourselves to cool off. We are all very heat intolerant. 

The kids also have these handcranked travel fans. We used to bring ones with batteries but these are better plus they treat them like stim toys.

We also bring baseball caps. A plain one for me and these Minecraft ones for the kids. They often wear matching clothes or accessories so easy to describe them if they get lost. 

I also got these lanyards to use in a Dublin airport. They are a discreet way of indicating you need extra help, and allow us to go in shorter queues. You need a letter from your GP stating autism diagnosis and they are very easy to apply for. 

As for the kids bags, they pack soft toys, either Mario, Minecraft or Pokémon characters. They also pack the Switch and/or 3DS. And chargers. Also we pack socket adapters if going to Europe. Also I bring my iPad and iPhone. 

I am also very careful about our Travel Outfits. I always wear baggy trousers with pockets and a long-sleeved top, plus light jacket. The kids wear similar. Because no matter how hot it is at our destination, it will always be raining when we arrive back in Dublin! And no good getting wet while trying to find the car. Plus we wear runners or shoes with special insoles. I don’t pack extra shoes as I’ve never found we needed them. 

And so, I think that’s everything? Knowing me, I’ll remember a few other things last minute! My husband handles the passports, tickets, cash and travel insurance etc. And so, here’s everything for one disabled autistic adult and two disabled autistic children for seven days in France: 

(Not) Missing You Already

I have recently noticed something about me that I assumed was just another one of my peculiarities, but then I noticed some other autistics mentioning it, and had another of those ‘me too!’ moments. And that ‘something’ is: I don’t miss people when away from them. Out of sight, out of mind, as it were. 

I first noticed this when I moved to Japan for a year. I didn’t miss my friends, I didn’t miss my family, and I didn’t even miss my boyfriend. (I did miss the sex though!) And now, when I’m away from my kids, I may worry about them and hope they’re ok, but I don’t miss them. 

And, just like being aromantic, it’s something I have hidden from others up to now. Because, I’m afraid people will misunderstand me not missing them for me not caring about them. So, of course when people ask ‘did you miss me?’ I affirm that I did. It’s an automatic reflex at this stage. 

But, I’m trying to talk about this a bit more, admit it, explain it, and hopefully people will see it as just something else that’s a part of me. I’ve no idea if it’s more common with autistics, or maybe we’re more willing to admit it? I recently told a friend I wouldn’t miss them if we ever fell out. And I then tried to explain what I meant by that, and that it was just a fact and something I had no control over. I *think* they got it. At least, we’re still friends. 

I think not missing people also can have advantages. It made leaving my friends, family and boyfriend behind and moving halfway across the earth a lot easier, I’d imagine. It also means I can get over toxic friendships and relationships a lot easier. It makes bereavement easier for me, as I equally don’t miss people after they die  And I can be quite content in my own company. I miss having friends, but I don’t miss any friend in particular. 

So, there you have it. Another facet of me that I’m finally coming to terms with! 

[image shows a tropical beach with palm trees and beach umbrellas in the distance. The sea is a vivid blue. The light blue sky has a few wispy clouds. It is deserted, with no people to be seen. ]