Advocacy and Autistic UK CIC

Logo of Autistic UK - the word autistic with a capital A. There are a pair of clasping hands forming the point at the top of the A and in the cross bar of the A, there are the letters UK. Above the word Autistic, there is the slogan, "Nothing about Autism without Autistics."

It’s national advocacy week, so we thought it was an ideal opportunity for us to talk about what advocacy means to Autistic UK, and how we let that focus our work. The West Virginia University Centre for Excellence in Disabilities cite three types of advocacy:

  1. Self-Advocacy – advocating for yourself
  2. Individual Advocacy – advocating for individuals g. assisting someone in a medical appointment
  3. Systems Advocacy – advocating to change policies or laws to benefit the wider community

As stated in the About Autistic UK CIC section of our website, we do not seek to represent Autistic people, rather we aim to ensure that Autistic people can represent themselves. Our aim is to equip Autistic people with the tools for them to be able to self-advocate, to provide training, advice, and signposting to reduce the need for individual advocacy, and our main focus is on spearheading wider change through systems advocacy. We believe that society needs to move away from the idea that other people need to speak for the Autistic community, and we are working to develop systems to enable Autistic people to speak to us to ensure as many Autistic voices as possible are heard.

Autistic UK believes that organisations – be them public or privately owned – should be transparent. We also believe that we are not exempt from this. Therefore, we want you to know what we’re doing to work towards our goals, and how we’re doing it.

We think it’s important for everyone to know our set up. We have seven executive directors and are chaired by Willow Holloway. All directors are neurodivergent, most are Autistic (6/7), most of us are also parents/grandparents of Autistic and otherwise neurodivergent children, and we are all working on an unpaid voluntary basis. At present we are also completely unfunded, and the directors are paying to keep the company operating as the coronavirus pandemic has meant that funding streams are particularly difficult to find. This means that while we would love to be involved in everything we’re notified about, we have to ensure that we don’t spread ourselves too thinly, which would affect how effective we are at what we do.

Autistic UK believes that the term advocacy is often misunderstood by wider society, and we are therefore refocusing on the term representation. In order to be effective systems advocates we must adhere to four approaches: engagement, representation, co-production, and participation. In order to break down the representation barriers with the Autistic community, we must listen to the Autistic community.

Engagement

Autistic UK is user-led and we engage with the Autistic community in a number of ways to ensure this happens. We are always looking for new ways to ensure we reach – and listen to – as many people as possible. During the pandemic we have been unable to engage with the community face-to-face, so our engagement has included:

Representation

A number of our directors sit on advisory panels and forums who want us to represent the views of the Autistic community. As our aim is to ensure the community can represent itself, we use the information gathered during our engagement with the community (with consent and anonymised unless otherwise requested) to inform our responses, both to written consultations and in the meetings we are part of, and use co-production (which is expanded on in the next point). Some examples of where we help Autistic voices be heard are:

  • National Institute for Clinical Excellence
  • National Health Service England and Wales
  • Welsh Government
  • National Police Autism Association
  • Various Disability Organisations
  • European Council for Autistic People

Co-production

Co-production is a crucial element in getting Autistic voices heard, particularly by those who have ignored them. Autism research, for example, needs to be led and driven by the Autistic community to ensure that outcomes aim to makes lives better for Autistic people (social research) rather than being focused on cause and/or treatment which can lead to eugenics (medical research). Therefore, we are working with universities and other research bodies, such as the Ministry of Defence, to ensure they are prioritising the needs and expectations of the Autistic community.

For Autistic UK, co-production doesn’t end with other companies and organisations giving us a seat at the table. We want to ensure that other Autistic organisations and individuals have the opportunity to have their say. For example, if we hold a stakeholder position which allows us to respond to consultation documents, we welcome the opportunity to submit a collaborative response to ensure those who do not have their own channels can use ours to make sure their views are included.

Participation

In order for us to stay true to our principles, we are expanding on the ways the Autistic community can participate in the work that we do, particularly for those whose voices are currently not heard. We are in the process of writing our application form for our advisory groups which will be split into three categories:

  1. Autistics in professions such as teaching, medicine, accountancy etc.
  2. Autistic led organisations
  3. Individual Autistic advocates

These will be advertised across our social media once the forms have been finalised.

 

Over the next few weeks, we will be releasing articles giving more information about the work we’ve been doing. If there’s anything you think we should be getting involved with, or that you’d like to bring to our attention, please send us an email to info@autisticuk.org.

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)