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.

Are Autistics empowered during pregnancy and labour in line with the ICPD?

Today (11th July 2020) is World Population Day which “this year calls for global attention to the unfinished business of the 1994 International Conference on Population and Development” (ICPD).[1]

The ICPD met in Cairo in 1994 and 179 governments adopted a Programme of Action relating to reproductive health and the empowerment of women. ICPD is “often used as a shorthand to refer to the global consensus that reproductive health and rights are human rights.”[2]

[Before I continue, I’d like to thank Hayley Morgan for her guidance and direction to some of the only academic articles out there regarding this matter.]

Despite this consensus, many Autistic women (and those non-binary and otherwise gendered people who have given birth), report that the support (or lack of) they received during pregnancy and birth from their medical teams was not reflective of their needs. A study of women with intellectual and developmental disabilities conducted in 2015 by Potvin, Brown and Cobigo found that a “high level of available support was not always perceived as beneficial” and that “social support is perceived as most effective when three conditions are met: (1) support is accessible, (2) support is provided by individuals expressing positive attitudes towards the pregnancy, and (3) autonomy is valued.”[3] The study concludes that there’s a lack of accessible information for developmentally disabled women, and that maternity care providers should “be aware of stigmatizing attitudes and respect the autonomy of pregnant women with IDD as they prepare for motherhood.”

For pregnant Autistics, not only is there a lack of accessible information for those who need it, there’s a lack of information full stop. If you Google ‘pregnant and Autistic’ or ‘Autistic pregnancy’ the results include a plethora of articles speculating about whether or not you can ‘prevent autism’, articles listing the ‘risk factors for having an Autistic child’, a small handful of academic research papers which are often behind paywalls, and (from the first 10 pages of the Google search results) a couple of articles containing the experiences of actually Autistic people who have experienced pregnancy and birth.

Pregnant people often spend at least some time researching what to expect during pregnancy and birth – there’s an abundance of books, articles, websites and forums highlighting this fact – yet pregnant Autistics and Autistic parents have been accused of Fabricated or Induced Illness due to the volume of research they have conducted and their use of medical – rather than colloquial – terminology in appointments. This is discussed in a 2017 article by The Guardian in which Autistic women report their experiences of motherhood including fears of putting “professionals’ backs up and [being] accused of causing or fabricating their children’s condition” and being “terrified their children will be removed from them if social workers misinterpret their autistic traits as indicating potential harm to the child.”[4]

It’s also reported that the experiences of pregnancy and birth for Autistics are quite different from their non-Autistic counterparts, and that sensory differences (for example) were dismissed as ‘not possible’ by their midwifery team. An article on Tommy’s (the miscarriage and baby loss charity) website features Rachel, an Autistic mum who has experienced multiple miscarriages. Rachel talks about how she (along with “many Autistic mothers”) are “very aware of their internal body state and knew things about their pregnancy before the textbooks said they should” which meant that she was more acutely aware of pregnancies she had lost in the early stages of conception. Rachel also discusses the difficulties Autistics have with processing pregnancy loss, and that “some may not process what has happened immediately or even within the weeks and months that follow the loss.” This processing delay coupled with reduced social networks reported by Autistics (corroborated by Potvin, Brown and Cobigo’s aforementioned study) contribute to the “isolation and detriment [pregnancy and baby loss] causes to mental health.”[5]

A study published in Women and Birth in 2017 explores the sensory differences reported by pregnant Autistics alongside other reported challenges they face. The review of current literature and its supplementary anecdotal evidence from blogs found that Autistic women “reported that they needed to feel more empowered about the circumstances of their giving birth and that they relied on three factors during their experience—clear communication, sensory adjustments and change management.” It highlights issues faced by Autistic people more generally – hospitals being noisy environments and touch which “may bewelcomed by many patients can be the cause of pain or distress for the [Autistic person].”[6]

Therefore, Autistic UK recommend that the needs of Autistic women, non-binary, and otherwise gendered people who give birth are reviewed and recognised in accordance with ICPD. Midwifery teams need to receive clear guidance and training from Autistics with lived experience in order to ensure the needs of all pregnant Autistics are recognised and met. There are a number of Autistic professionals with experience in this area, including Hayley Morgan MSc, who are able to provide talks and training regarding the Autistic experience of pregnancy and birth in order to achieve positive outcomes for both the Autistic person and their baby.

References

[1] United Nations (2020), ‘World Population Day July 11’ (Online) accessed 9th July 2020. Available at https://www.un.org/en/events/populationday/

[2] United Nations Population Fund (2019), ‘Explainer: What is the ICPD and why does it matter?’ (Online) accessed 9th July 2020. Available at https://www.un.org/en/events/populationday/

[3] Potvin, LA, Brown, HK & Cobigo, V (2016), ‘Social Support Received by Women With Intellectual and Developmental Disabilities During Pregnancy and Childbirth: An Exploratory Qualitative Study’ Midwifery, Vol. 37, pp 57-64 (Online) accessed 9th July 2020. Available at https://pubmed.ncbi.nlm.nih.gov/27217238/

[4] Hill, A (2017) ‘Mothers with autism: ‘I mothered my children in a very different way’’ The Guardian (Online) accessed 9th July 2020. Available at https://www.theguardian.com/lifeandstyle/2017/apr/15/women-autistic-mothers-undiagnosed-children

[5] Rachel (ND) ‘Recurrent miscarriage and being autistic’ Tommy’s (Online) accessed 9th July 2020. Available at https://www.tommys.org/our-organisation/help-and-support/baby-loss-stories/recurrent-miscarriage-and-being-autistic

[6] Rogers, C, Lepherd, L, Ganguly, R, & Jacob-Rogers, S (2017), ‘Perinatal issues for women with high functioning autism spectrum disorder’ Women and Birth Vol. 30 Iss. 2, pp e89-e95 (Online) accessed 9th July 2020. Available at https://www.sciencedirect.com/science/article/pii/S1871519216301287

International Day of Disabled Persons 2018

by Errol Kerr 

It’s the International Day of Disabled Persons, and I don’t know what to say anymore. I was hoping to write something far more professional – but this day doesn’t feel like it’s ours anymore.

I’ve spent most of the day thinking about what precisely to talk about today in regard to autism and disability. I could use this time to talk about how media representation of autistic people is consistently poor, how it’s a symptom of the consistently poor representation of disabled people within the media. I could talk about how multiply-disabled people still find it hard to find their place within the autistic movement, how we’re still pretty dominated by white, cis-gender, male, straight and able individuals outside of social media. I could talk about how we are still forced to ‘debate’ whether autism, and other neurodivergent conditions, are in fact disabilities, or how we’re still bogged down in this needless conflict over person-first and identity-first language, when our views across the community are clear.

But I’ll do all of those throughout the month. Today, I’m going to take this day, tear it apart and put it back together.

We’re talked about but aren’t given the chance to speak. Businesses flash their purple emblems and their Disability Confident labels, whilst we can’t find work with them and they refuse to develop policies and implement support that actually allows disabled people to be a part of their workplace. Governments promote this day and show support our causes as they cut welfare and support. Charities laud this day whilst they put children like us in solitary units, forcing families apart and destroying our physical and mental well-being. Parents still want to cure those who do not want fixing, putting us through medically sanctioned torture in order to make us “normal” to them.

I recently had a conversation with a close friend about business events like “Purple Tuesdays” and “Autism Hours”. How, to me, they feel patronising and that it makes disabled people feel like they only exist for one day to these places. How autistic people and other neurodivergent people feel they’re allowed to shop by abled people for an hour every so often. How it’s another example of how our needs are only met when it’s convenient.

How this is an example of how we’re often treated in education – if funding isn’t there, if we’re doing academically okay, we won’t find support. How documents supporting educational support can be so easily taken away from disabled and neurodivergent young people. How this is a cruel way to make us realise that this is the life we’ll live, and how whether it’s an EHCP as a child, PIP as an adult, pensions as we get older, we’ve got to constantly fight just to have our needs recognised, never mind actually supported.

How do we feel comfortable supporting an international day of disabled people when people can’t even say “disabled”, or when “autistic” is a dirty word, a slur used across the board online and in public? We have to crowdfund to get access to materials that we need to survive – and people think lighting up purple is enough?

I’m multiply-disabled. For me that includes being autistic amongst other things. Today doesn’t feel like my day any more. I want to see and support disabled people, not companies with purple t-shirts. I want to see access improvements across the board. I want to see autism recognised as something acceptable globally. I want to discuss autism as something that’s more than white – because it is overwhelmingly white people like myself leading these conversations, and I recognise that.

This day is about us – our rights, our experiences. Outside of social media, it doesn’t feel anything like that. We’re an amazing bunch, and we exist every other day of the year.

I want any autistic and/or disabled person to use this post to promote themselves in any way possible. Tweet us (@AutisticUK) a link to your work or what you like to do. Join our Facebook group (Neurodiverse UK) and share your story on accessing benefits or accommodations. Email us (info@autisticuk.org) to send us a blog post for our web site to discuss disability and autism. We want this to be your space; your network. We want to promote you.

Statement: On the NAS’ removal and reinstating of Mermaids’ information

This is a statement regarding the National Autistic Society’s decision to remove information from Mermaids, a trans youth support network, from their website. This also discusses their decision to reinstate it after mass objection online. This occurred over the week commencing 01/10/2018.

Continue reading “Statement: On the NAS’ removal and reinstating of Mermaids’ information”