Underdogs

I loved this book (dystopia is my ‘bag’) and it was refreshing to read about neurodivergent written by an actually neurodivergent author. It was far more relatable, didn’t smack of ‘inspiration porn’, and was an honest account of the pros and cons having particular neurodivergencies brings to life, particularly in post-apocalyptia.

I’d say the target audience is 13+, but as with all good YA fiction, adults of all ages will enjoy it too (if the genre is what they’re in to). The pace was fast enough to keep my ADHD brain interested, but the plot was developed enough that you didn’t feel short-changed at the end. It also left me really wanting to read the sequel, which is the hallmark of a great book.

As I told the author when I first read Underdogs last year: regardless of the fact this novel is set in post-apocalyptic Britain, the heroes are all disabled children, and they had access to quite impressive weaponry, the most unrealistic part of the plot was that all of those children were in a specialist school, so must have all had statements/EHCPs. It’s a stark reminder of how the real education system is failing a cohort of children similar to those found in this book, and it makes me wonder if that specialist input and nurture is what gave them the tools to try and save the world.

The Guide to Good Mental Health on the Autism Spectrum

This book is really good. It’s straightforward, has a great layout, was clearly well-researched, and lifts up Autistic voices. Yenn Purkis has contributed so much great insight and knowledge regarding the intersection of autism and mental health, and this book is a credit to them.

It loses half a star for using person first language, and references to functioning labels (including lots of the use of Asperger’s). I’m guessing it’s more a symptom of when it was written (and possibly done to please the publishers), but some would find the language used frustrating and/or triggering.

I love what the book is doing though, and have learnt from it.

NeuroTribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently

This is one of the most comprehensive, objective, and eye opening books about autism I’ve read. I read a lot about autism (research is my ‘special interest’), and this has blown most things out of the water (see – we can learn figures of speech).

What I love about this book is that it doesn’t pick a side. It’s not written with a political agenda, nor is it preaching to people to conform to a certain way of thinking. It’s facts, it’s research, it tells all of the theories and gives them all the same amount of paper and ink.

Now, anyone who reads it and still thinks ABA is a good idea, or that autistic people should still be in institutions awaiting a cure, is either heartless or didn’t understand what they were reading. If it’s the latter, I suggest you read it again, and listen to actually autistic people in your lives to find out why those things are the opposite of what you should strive for. Silberman has provided the facts, the research, and the testimonials; it’s up to you to use your critical reasoning skills to make an informed choice.

I went through many emotions whilst reading the book, from joy right through to physical pain. I read the section about eugenics aloud to my boyfriend, and I was sobbing so much he invited me to stop reading. I didn’t. In my opinion, it was essential to embrace that upset and discomfort so that I (and he) can ensure that we don’t get back to that place; something which is frighteningly possible with the likes of Autism Speaks at the forefront of autism research and promotion.

This, I feel, is essential reading for all. Not just autistic people and their families, not just those who work professionally with autistics; everyone. Unfortunately that brings me to my only negative. The book is extremely well written, however the language is overwhelmingly high brow. I’m an English student with an obsession with reading all things neuroscience, and there were a lot of words I had to look up to fully understand. I fear this will exclude a lot of people from accessing the book, and I wonder if there’s a way around this. Perhaps a simplified (but not patronising) abridged version would be a potential project in the future.

Odd Girl Out: An Autistic Woman in a Neurotypical World

I absolutely loved this book, and read it in two days.

As I read, I saw myself in the pages far more than I ever have before. I know that being autistic gives us a commonality, but I didn’t expect to see so much of my experience in a book written by someone I follow on Twitter. From the time I read that Laura finds sameness an anchor, and that she can’t listen to music while needing to concentrate because the lyrics mix with thoughts “and it becomes a confused mess,” I knew I was going to enjoy the book.

I relate to the way Laura’s sensory issues make the world so confusing, and often assaulting, to live in. I agree that silence to others isn’t actually silent, and like Laura, sensory bombardment has led me to leaving wherever it is I’m supposed to be. For me that’s usually the supermarket.

I have the same (possibly obsessive in my case) need to research things immediately. I cannot let it go, and my phone is constantly at my side so I can Google whatever pops into my head. I too need to be distracted from the millions of thoughts whirling around my brain, and use compulsive checking of messages and social media as a distraction from them.

I always thought people were being metaphorical when they told you to “picture a beach,” or similar, when leading a guided relaxation practice. I’ve since found out about aphantasia, and though I do see fleeting images, I empathise with Laura’s struggle to form a mental picture of those you love.

I too create a sort of ‘social story’ whenever I need to go somewhere new by looking up everywhere I go – hotels, offices, train stations etc – on the internet so I know what they’ll look like. I recognise Laura’s need for clarity and to know what’s happening, coupled with a need to be in control without wanting to be controlling.

I share her relief of finally getting the answer in adulthood as to why I was so different. I have also experienced the feeling of not wanting to exist; to have not been born. I also find talking exhausting when anxious, and her description of the weight of words resonated with me, as did her inability to stick to things if she doesn’t get immediate results.

This is, at the time of writing the review, the book about being autistic I have related to the most. The most glaring difference between our experiences is that I feel emotions at an almost unbearable level, to the point that I have wished I could stop feeling altogether. I do often struggle to accurately label them though, and therapy has taught me that I feel them so explosively because I don’t recognise the build up – only the climax.

I was slightly uncomfortable at the inclusion of person-first language, though this typically surrounded input from professionals working in the ‘autism business’, so it could be over-spill from their wording. I also cringed at the amount of input Tony Attwood had (considering how unhelpful he’s been for the autistic community in the past), but I must admit I agreed with what was included in the book, so that’s more my problem than anything else.

I would highly recommend this book to autistic women, their partners, and those who love them. I’d also recommend it to professionals, particularly those who still maintain that women can’t be autistic, and those who equate those who can work, have a relationship, and be a mother as having no support needs. It’s clear that Laura has some quite significant support needs (as I do) yet it’s much harder to get them recognised.

I’m sad that I got the book on Kindle. I couldn’t find a print copy on Amazon, but I’d love to buy a print copy so I can lend it to people, but so it can also sit on my bookshelf as I feel a need to have physical copies of books, particularly ones I love. This would have taken residence next to Neurotribes, my favourite ever book about autism, though this is a very close second.

Autistic Community and the Neurodiversity Movement. Stories from the Frontline

This is a comprehensive book in which (mostly) Autistic (including non-speaking) members of the Neurodiversity Movement write about how they, and the organisations they work with, have contributed to creating a world which better caters for Autistic people’s needs.

While this book chronicles the Neurodiversity Movement, there aren’t any entries which come from outside the autism world. While the title is prefaced with ‘Autistic Community’ so this shouldn’t come as a shock, it would be good to see a similar piece of work which includes a wider range of contributions from people with other Neurodivergences (NDs). That said, there are contributors (such as Monique Craine) who have multiple NDs, therefore there is some representation.

I agree with Knapp’s decision to edit with a light touch so that each author’s style isn’t lost and NDs (such as dyslexia) are not hidden, it did mean I enjoyed reading some chapters more than others, despite each having an interesting subject matter. There were some author’s styles I just didn’t get on with, but I haven’t dropped the star rating because they held my attention, and I think that it’s a personal preference matter rather than because they were inherently ‘worse’ than the chapters I enjoyed reading more.

I learned a lot of history about the Autistic community which I didn’t know, such as the Autistic involvement in the DSM-5 revisions, and I was impressed with how involved we’ve been in some incredibly important pieces of work – truly nothing about us without us.

I was fortunate to be involved in a webinar this week hosted by the European Council of Autistic People through my director’s role with Autistic UK, and a number of authors and organisations from the book were also in attendance. I’m looking forward to working with them in the future, perhaps as we pioneer the next big positive change for Neurodivergent people in Europe.

If you’re interested in either the Autistic or Neurodiversity Movements, I highly recommend you read this book. If you’re a teacher, medic, work in government or third sector roles steering policy, or are an autism (or other ND) researcher, you *should* read this book to help you understand why we repeat: Nothing About Us Without Us.

Note: This book is open access. You can access it here.

Diary of a Young Naturalist

This book is one of the most beautiful pieces of poetic prose I’ve read in a long time, and I’m studying literature. Beginning with Saturday 21 March – spring – Dara takes us through an entire year of his life as an Autistic naturalist.

I bought the book to add to my collection of works by Autistic authors, and while I’d read a lot of praise prior to reading it, I didn’t realise just how excellent it is until I’d started reading it myself. By the time I reached May I bought a copy for a friend of mine who has an Autistic son who is also fascinated by (and very well-versed on) nature, not only because it’s an excellent book but also because her son reminds me of a younger version of Dara and I thought he’d enjoy it too.

Though I wasn’t diagnosed until I was in my 30s, I can relate to Dara’s experiences of school (in his first school anyway) and I too sought solace in wild places, though this changed when I moved from my grandparents’ house in the countryside to the city I live in now. There was a large period of time where I lacked a connection with the natural world, yet even when my visits were sporadic and fleeting, I’ve always found a sense of calm when surrounded by green and cocooned by a canopy of trees.

Since reading, I’ve encouraged my children to spend time searching for nature wherever we can find it. Our tiny concrete courtyard garden is filling with pots of tangled plants and trailing vines because I forgot to buy trellis (I’m not a natural gardener), but it’s also full of woodlice, butterflies, ants, bees, and finches. Through taking the time to explain the wonders of the natural world, my older boy (also Autistic) is no longer frightened of bees, accepts that wasps do have an important role in the circle of life, and will go for walks in the woods without much complaining. My younger son (also Neurodivergent) has always been a nature lover, but we’ve spent more time together watching nature documentaries, going on bug hunts, and searching for “baby ducks” whenever we’re near water. One of his proudest moments during lockdown is helping me rescue a ladybird from drowning in a water feature, and then checking on it regularly to make sure it was still okay.

This book has made me appreciate the world around me more freely and openly. In a world where we’re constantly rushing, it became too easy for me to forget to really see what it has to offer. I’ve seen more butterflies, birds, and bees since reading Dara’s diary, and I don’t think it’s purely because there are physically more of them. I’m looking for them. Watching them. Truly appreciating and connecting with creatures which used to flit past my peripheral vision.

The beauty of Dara’s words match the beauty of nature, and I’m genuinely sad that the book had to end.

Underdogs: Tooth and Nail

Somehow, Tooth and Nail managed to be even better than the first book in the series, and I’d already given that one five stars.

I read the first book in a day and initially thought this would be the same. I was wrong. Not because it didn’t grip me (it did); not because I didn’t want to know what was going to happen next (I did), but because I needed time to process what I was reading.

I was far more invested in the characters. I really cared about them, and I needed space to think about what they were going through before I could move on to the next part. At one point I actually rage quit because I couldn’t see something coming, and it really shook me.

I can’t write too much without inadvertently spoiling the series so far, so I’ll end with this: I wish I had the Underdogs series growing up. I love the books as an adult, but pre-teen/teen me *needed* them.

I highly recommend this series, and I can’t wait to read the final two instalments.

Autism, Bullying and Me

This is a great little book for pre-teens and teens who are affected by bullying. It’s aimed at Autistics, however I think anyone would find it useful, particularly if they have any sort of neurodivergence.

It’s refreshing to read a book which doesn’t pretend that you can change anyone other than yourself. While for a couple of minutes I got a little defensive over it being my responsibility to change reactions and thought patterns (I was bullied for pretty much my entire school life), actually it’s the only thing that you have have any control over, so it makes sense.

Resilience has become a bit of an attack word as bullies now use it to try and make their victim feel worse, but actually the meaning, feelings, and actions behind resilience absolutely need to be taught to our youth – not because being bullied is their fault (something Emily makes abundantly clear throughout), but because *they* will feel a whole lot better about themselves if they can protect their well-being and think those three positive things in the midst of upset (you’ll have to read the book to find out what I mean by “those three positive things”).

I could have done with this book being around when I was younger, and despite it being mine, I’m going to slip it into my twelve-year-old’s bedroom so he can look at it in his own time. I’m also going to get a copy for his school and my younger son’s school (despite it being primary) because I think that it’s a good resource that lots of children may not get access to in any other environment.

National Play Day 2020

Due to the COVID-19 pandemic, rather than organising collective events across the UK National Play Day 2020 is focusing on children’s rights to play at home. We’re increasingly being told about the importance of play, and there’s copious research into why this is, however when you’re Autistic and/or the parent of an Autistic child, most sentences which include the word “play” in relation to your child are telling you about how they’re “not playing correctly,” or they’re “only doing parallel play rather than cooperative play,” all heading to the climactic “we need to teach your child how to play.”

Wait, what?

Numerous dictionary definitions state that when people play they’re spending time doing enjoyable things; doing things for pleasure; doing things for fun. So how on earth can anyone be doing it wrong?

National Play Day state that:

Playing is fun and is central to children’s happiness

Playing helps children’s physical, mental and emotional health and well-being

Playing boosts children’s resilience, enabling them to cope with stress, anxiety and challenges

Playing supports children to develop confidence, creativity and problem-solving skills

Playing contributes to children’s learning and development.

Nowhere does it state that playing is prescriptive and must follow a set pattern. Neither does it state that “proper play” means pretending to drive a toy car down an imaginary road rather than lining it up, while also meaning that a banana is also a phone and not always just food.

I’d planned to write an article about the differences between non-Autistic and Autistic play, citing research as well as my own experiences as an Autistic parent of Neurodivergent children, however when I started to do search for things to back up (or disprove – I’m not shy about being told I was wrong) what my (and others I know) experiences are, all I could find were research documents pertaining to non-Autistic children, and hundreds of articles about how to “make” your Autistic child play like everyone else. At this point the plan went out of the window – I could say I threw my toys out of the pram, but that wouldn’t be very appropriate of me, would it?

Instead I want to use this as a springboard to start a discussion:

  • How did you play as an Autistic child?
  • How do you play as an Autistic adult?
  • What are your Autistic child’s favourite games?

Before going further, I just need to say it loudly for the people at the back:

Forcing Autistic children to “play appropriately” is a contradiction of play. You are making them work.

Play is important for so many reasons. It helps children practice skills they’ll need later in life, and current pedagogy uses play with younger children as the main basis of teaching: Learning Through Play seems to be the tagline of most Foundation Phase (KS1) departments. Play is so important that it’s article 31 in the UN Convention of the Rights of the Child which is enshrined in law in Wales.

Among the research, common themes of play being important for recreation and relaxation dominate the results, so why when we have Autistic children – who are often autonomy seekers in a world where they have to work hard to conform – do we turn their play into another therapy/learning opportunity/social skills lesson? Why can’t they play the way they want? Why must we steal what little autonomy and self-regulation they have?

Play is also described as a cathartic activity in which people (particularly children) express their feelings, get rid of negative emotions, and replace them with positive ones. Do you think that by telling a child that they can’t solo-spin on the playground because they should be playing tag with the rest of the class is cathartic for them? Are they going to be able to express their feelings? Or are they having to ignore their needs for the sake of your tick box exercise?

Instead of changing the Autistic’s method of playing, join them! Spin, jump, flap, line up toys, play a couple of hours of Minecraft, whatever it is that they want to do. The main focus should be on having fun.

 

References

National Play Day (2020), Home Page, [online]. Available at https://www.playday.org.uk/ (Accessed 03/08/2020)

Oxford Learner’s Dictionaries (2020), Play [Verb], [online]. Available at https://www.oxfordlearnersdictionaries.com/definition/english/play_1 (Accessed 03/08/2020)

International Day of Friendship – 30th July 2020

Today is the International Day of Friendship, and to mark to occasion I wanted to write about some of the myths surrounding friendship and Autistic people.

If media and outdated medical opinions are to be believed, Autistic people can’t make friends. We’re aloof, bluntly honest to the point of being rude, don’t like the company of others, and only tolerate people if their presence is of benefit to us. Except the media and medical opinions are complete nonsense, and actively damage our community.

One of the most common reasons parents are given by medics who refuse to give their child an autism diagnosis is, “he/she is too sociable,” or, “but they have friends.” Our social communication differences have somehow become equated with an inability or desire for companionship, and despite Autistic adults protesting this theory, it seems to have stuck. A plethora of adults have been refused diagnosis because they’re able to have romantic relationships and are, heaven forbid, even married!

This assumption has caused deeper wounds for those who are more able to mask their differences or become social chameleons, regardless of the damage it does to their wellbeing. As this typically affects females in higher proportions to males (both trans and cis women and girls), understandably a lot of work has been dedicated by advocates and some professionals into establishing a set of ‘female’ Autistic characteristics due to their under-diagnosis. However, this has meant that those who present as male in clinic have missed diagnosis when it’s possible they would have received one if measured against ‘female’ characteristics.

Those Autistics who do get diagnosed while young – possibly because they are happier alone, or because they have had difficulties making and keeping friends in school – are often placed into therapies or social skills classes which have a primary aim of making the Autistic person change the way they interact with people to meet the needs of non-Autistic people. They’re told, “this is the only way to make friends,” and that their methods of interacting, communicating, and (in many cases) playing are wrong. Being made to follow programmes designed by non-Autistics to get Autistics to ‘fit in’ mean that these Autistics either join the huge numbers of us who mask, or continue to feel isolated while also developing self-esteem and mental health difficulties. Wouldn’t you if you were told the reason you don’t have friends is because who you are is inherently wrong? Remove the focus from social skills classes to helping Autistics find their community – friendships will then naturally bloom and flourish.

Why do the non-Autistics get to be who they are? Why is it okay for other children to be lifted up, told to be proud of being different, and that they can be who they want to be, when the Autistics get the addendum: but not like that? Is it any wonder that by the time we reach adulthood, regardless of when we were diagnosed, most of us have at least one co-occurring mental health condition?

However, it’s not all doom and gloom, for the arrival of social media (and the internet in general) has changed the face of friendship for so many of us. I don’t dispute that there are toxic elements to social media, but for Autistic people – especially those diagnosed late – it’s where we finally find our tribe. There are a huge number of Autistic social groups online. From hashtags on Twitter (#AllAutistics #ActuallyAutistic and #ADHDAutism to begin with) to Facebook groups (Neurodiversity UK, Autism Inclusivity, Autism Late Diagnosis Support and Education are all good starting places), these are places which – often for the first time – Autistic people feel supported and find people they can relate to. For so many of us most of our friends are online, so please don’t assume that we’re being antisocial for looking at our phones.

During the COVID-19 pandemic, many Autistic people have said that they have been able to socialise and keep up with friends more than they did pre-pandemic. Not having to go into the office and/or commute means there’s more mental energy for time with friends, and its online nature (including online quizzes, virtual pubs, and gaming) means that participation is far easier, so they feel more connected. I know I’ve socialised more with some of my non-Autistic ‘mum friends’ far more regularly than I would if it was in person.

When we branch out of the digital realm and meet fellow Autistics in person, we rarely have the same level of awkwardness, anxiety, and misunderstanding as we do when we try to socialise with non-Autistics. This is seemingly at odds with the assumptions non-Autistics have of us which were discussed at the start of this article, and is why Autistics believe that it’s not completely accurate to state that we have social communication difficulties, rather social communication differences. We can often communicate extremely well with others who share our neurotype, regardless of whether or not we speak. We may not always understand what non-Autistic people are trying to communicate, but actually they also don’t understand us. Communication is a two-way street, and of course we’re going to be exhausted by trying to maintain friendships with non-Autistics who expect us to walk a ‘one-way road’ to communicative harmony: at least meet us half-way!

Don’t assume that Autistic people have no desire to make friends. Educate people when they claim that Autistic people cannot make friends. Understand that online friendship and companionship is valid, and can be just as fulfilling (if not more so) than in-person relationships, particularly for Autistics. On this International Day of Friendship, if you are friends with a neurodivergent person, ask yourself: are you making them do all of the work? Are you expecting them to change their communication style without thinking about adapting your own? Do you make assumptions about their abilities, needs and desires based on their neurotype? If so, please consider whether or not you could help your friend further and make life easier for them. And please, at the very least, meet them half-way.