Autistics Against ABA

Kat Williams has given us consent to re-post her article Autistics Against ABA. The original dated 2nd May 2020 can be found on her website, CerebrationofKat.

Today (2nd May 2020), I was asked to write about ABA, providing evidence as to why it should not be promoted. While I’m willing to do this, particularly because I haven’t actually written a post specifically on ABA before (I mean, let’s be honest, I’d be adding to the hundreds already out there), this does not negate the time, mental energy, and sheer frustration that comes with (yet again) a person from a marginalised group being asked to do the leg work when a simple Google search would provide all of the information.

That said, I did offer to educate and this is a more permanent form than just replying to a Facebook post. From here you can expect references to ABA, abusive practices, and suicide. Therefore, if you will find any of these topics triggering I suggest you stop reading. I do hope, however, if you’re a non-Autistic (or non-disabled in general) person, you do read this in its entirety. It’s taken a lot of hard work, and I don’t really want it to be wasted.

There’s already so much literature out there so I’ve added a list of articles where you can read about this in more depth at the end of this article. I’ve marked those which are (in my opinion) the best ones to get a full overview of why ABA is – in all its forms – abhorrent. It doesn’t matter if it’s original Lovaas ABA ‘bad ABA’, or if it’s ‘good’ ABA which doesn’t use punishment such as electric shocks, or if it’s something used on Autistic people, or (as I’ve learned today) with children who have Cerebral Palsy. It’s all bad. Period. It would not be acceptable practice with non-disabled children, and gay conversion therapy (which is based on ABA) has been declared unethical, so I cannot fathom why it’s still considered appropriate to use ABA to try to ‘normalise’ disabled children.

Very often people who don’t know much about ABA outside it being ‘controversial’ will say things like “I can’t judge another parent’s choice,” or “People can choose how they want to parent their children.” My counter argument is simple: if I were to suggest that you could smack the disability out of a child you would judge. Rightly so.

“Your character is based on the way you treat the people you’re ‘allowed’ to mistreat” – David Sedaris

So, why is ABA bad anyway?

There are a number of reasons, but I will confine my answer to the top 10. I’m going to refer to Autistic people in this article, but please know that it doesn’t mean that these issues are solely Autistic related. If you’re using ABA with a person who has Cerebral Palsy or any other disability my points still stand:

1. It teaches the person they’re ‘wrong’ They need to be fixed

Repeat after me: Autistic people are not broken non-Autistics.

We have just come out of the other side of Autism Awareness (Acceptance) Month, yet we still have to tell people this. Disability does not diminish a person’s worth. The whole premise of ABA is to make Autistic children indistinguishable from their peers. This in itself should be a ‘red flag’ as therapeutic practices are supposed to help the person being treated. Therefore, ABA’s “goal of specific beneficence is to help individual people, […] is undermined by making people into someone they’re not” (Wilkenfeld & McCarthy 2020).

Well-meaning parents and professionals typically look at this (and the other arguments) and respond with “but you didn’t have ABA, so how do you know it’s abusive?” To paraphrase Chris Bonnello (Autistic Not Weird) if people can educate themselves to know that smoking is bad for you without trying it for themselves, they can educate themselves about ABA.

Another frequent argument is “you’re not Autistic like my child.” I’m not going to delve into this fallacy here, I’m going to take it at face value. Yes, I have a slightly above average IQ. Yes, I’m mainly verbal (sometimes I’m not, but I write about that in other articles). However, intellectual/learning disability and apraxia of speech are not valid arguments for ABA. Parents and professionals often claim that their Autistic child/patient ‘can’t communicate’ so needs ABA to learn how to do so. However, “it commonly turns out that “non-communicative” autists frequently communicate perfectly well—they merely communicate in ways to which people might not typically be sensitive” (Wilkenfeld & McCarthy, 2020).

Parents often want to know why their child behaves in different ways to their non-Autistic peers. I’ve been there, I do understand to a certain degree. However, “researchers do not tend to study why neurotypicals don’t behave in certain ways” (Wilkenfeld & McCarthy, 2020), and this approach just feeds into the premise that the Autistic way of being is wrong; it’s something to be studied, unpicked, and rebuilt. Regardless of how distressing the process of ABA is for those subjected to it, “perhaps a greater injustice is in simply treating ASD as something that merits elimination in the first place” (Wilkenfeld & McCarthy, 2020). Despite the difficulties faced by Autistic people in a world not designed for them,

“we would do well to focus our energies on eliminating the basis of that burden rather than in eliminating the underlying trait.” – Wilkenfeld & McCarthy, 2020

2. ABA addresses ‘symptoms’ not underlying causes

Behaviourism focuses on just that: behaviour. Meltdown? Behaviour. Stimming? Behaviour. Aversion to sound? Behaviour. Co-occurring conditions such as pica or ARFID? Behaviour.

The function of ABA is to eliminate these behaviours to make the Autistic person appear more ‘normal’. However, the underlying reason for said behaviours is not addressed.

Let’s take eye contact as an example. I’ve chosen this because it shows how Westernised ABA is too – eye contact is considered part of polite social interaction here, in parts of the East, it’s considered rude. Eye contact can be at best distracting, at worst physically painful for an Autistic person. Auditory processing disorder could mean it’s essential for one Autistic person to look at someone’s mouth to understand what they’re saying, and for another, looking in the opposite direction could mean they’re taking in what’s being said rather than getting lost in the multiple shades of green which fleck the hazel eyes of the person speaking to them.

This is one area in which the ABA practitioner doesn’t try to find the whys. They insist on eye contact, and the child can only have their reward when they do. This leads me onto…

3. It removes and destroys autonomy  

In a world in which people are being told to ‘be themselves’ and children are being praised for not ‘following the crowd’ it seems nonsensical that Autistic children are being taught the exact opposite. Conformity above all else. No is not an option.

As ABA tightens its noose around the Autistic’s individuality by using operant conditioning and behaviourism, it begins to “alter children’s identities by preventing them from forming and pursuing their own passions;” it’s “teaching them how to blend in rather than exercise their own unique capacities” (Wilkenfeld & McCarthy, 2020). A lack of sense of self is often reported by Autistic adults, and it’s easy to see why. If they’ve been subjected to ABA it’s been trained out of them, if they haven’t they’ve often forced themselves to mask to try to fit in. Very rarely do I meet an Autistic adult who can state unequivocally that they’ve been their authentic self for their entire life.

“An ABA intervention will be considered a success if and only if it results in a desired behavior, regardless of what is going on in the mental life of the child. [… T]his is done in a way that overrides the child’s natural inclinations and does so via at least moderately coercive methods. To paraphrase one person with whom we spoke, if “ABA” just involved giving praise when the child does something good, you would be able to forgo years of training in favor of a lesson that could fit on a greeting card. There might be someone somewhere who practices ABA using only positive words of encouragement, but this is simply not what past recipients of ABA have reported (Kupferstein 2018).” – Wilkenfeld & McCarthy, 2020

4. ABA leaves people open to abuse

Once you teach a child that no means they will be punished until they say yes – either in the traditional sense in which something negative happens to them, or solely through the withholding of a wanted item – you are leaving them open to abuse.  

Parents will share memes like this:

Meme teaching a child about bodily autonomy: "Don't force me to kiss or hug. I am learning about consent and support on this will help me keep safe for the rest of my life"

while defending (or at least not criticising) ABA.  This isn’t just ironic, it’s ludicrous.

ABA is teaching an Autistic child that their body isn’t their body. They’re being taught that they must have physical contact with someone, even if they don’t want to. They’re being taught that they are not allowed to give or deny consent. The proponents are preventing that Autistic child from being able to keep themselves safe for the rest of their lives. At best they’ll be unable to spot toxic friendships until it’s too late, at worst they will be abused.

5. Many people who were subjected to ABA meet the PTSD diagnostic criteria

Scientific evidence to support this is still in its infancy. This isn’t because it’s not out there, it’s because it’s taken this long for a) the first wave of Autistic children subjected to ABA to become adults, and b) for those people to be listened to. That said, research is being conducted, and an early study “noted PTSS in nearly half of ABA-exposed participants, while non-exposed controls had a 72 percent chance of being asymptomatic” (Kupferstein, 2018). This supports anecdotal evidence from the Autistic community in which Autistic adults, both those who are speaking and those who are non-speaking, have written extensively about how they have been traumatised by ABA. I have included many of these articles in the further reading list at the end.

“Respondents of all ages who were exposed to ABA were 86 percent more likely to meet the PTSD criteria than respondents who were not exposed to ABA,” and that “Exposure to ABA predicted a higher rate and more severe PTSS in participants, but the duration of exposure did not affect satisfaction with the intervention in caregivers.” – Kupferstein, 2018

This alone should demonstrate the potential harm, yet ABA practitioners and parents vehemently try to deny the claim. This in itself is abusive as it’s (again) telling the Autistic person that their experiences are wrong and/or not real. Just like ABA in practice, in which Autistic children are taught that they don’t really detest the feel of jelly, they just need to touch it every day for several hours to get over it. Both the ABA practitioners at the time and the people denying the resulting PTSD are gaslighting the Autistic person.

6. ABA teaches masking, which is a proven suicide risk

Let’s be clear: ABA does not make an Autistic person non-Autistic. Its ‘success’ is in its ability to make an Autistic person mask their Autistic way of being (or traits). Masking is not only exhausting and a completely unauthentic way of living, it is one of the “risk markers for suicidality unique to ASC” (Cassidy et al, 2018).

Suicidal ideation and completion of suicide is already overrepresented in the Autistic community:

“In a large sample of 374 adults newly diagnosed with Asperger syndrome (AS; autism without language delay or intellectual disability), 66% had contemplated suicide, significantly higher than the general population (17%) and patients with psychosis (59%); 35% had planned or attempted suicide [2], higher than previous estimates of attempted suicide in general and university populations (2.5–10%).” – Cassidy et al, 2018

and as this study shows, Autistics who mask are at higher risk again. ABA is designed to force the mask on when we should be encouraging our Autistic young people (as well as the adults they become) to take the mask off and love and embrace themselves for who they are.

7. Length of time a child is in therapy

Autistic children who are in ABA are often subjected to 25-40 hours per week of intensive practice. Children start ABA as young as 2 years old. That’s 25-40 hours in which they cannot make a free choice. They’re not playing as they want to. They are having to conform to hours of operant conditioning while their non-Autistic peers are playing in sandboxes, having naps, and scribbling with crayons. They’re being robbed of their childhood, working hours which would floor most non-Autistic adults.

8. It’s not ethical

Behaviourists have to equate autism to cancer to get ABA studies past ethics boards:

“When a judge, or Dr Maurice, or any behaviourist yells cancer, any ethical consideration for autistic people obediently hurries to the nearest exit.” – Dawson, 2004

This is because they know it’ll eliminate the ethical questions of consent – “a project presuming to transform the nature of unconsenting clients through behaviour interventions must be challenged as to its ethics” (Dawson, 2004) – and ABA gone wrong, such as those Autistics “injured and killed in restraints” (Dawson, 2004). If autism is presented as equal to a disease which kills without radical, objectively harmful to the body, treatment, then the suggestion of intensive hours and removal of autonomy doesn’t seem that bad. If it ‘cures’ the Autistic child of this ‘thing’ that’s stolen their life, then ‘the ends justify the means’.

This is, of course, a strawman. Autism doesn’t kill. Autistic people often get killed too young, but it’s not being Autistic that’s done it. It’s how they’ve been treated (when they die by suicide) or the lack of support (why they die by the hands of their caregivers).

Therefore, the ethical questions need to be placed back on the table. However, when questioned about obtaining consent from Autistic people regarding being subjected to ABA, Dr Gresham, a pro-ABA doctor, “found the idea of autistics being involved or consulted in legal, research, or treatment decisions absurd–like consulting with the mentally-retarded” (Dawson, 2004). If this is the public opinion of ABA proponents, I shudder to think about what their actions are when alone with vulnerable Autistic children.

“Challenging the autism-ABA industry’s ethics requires that autistics are seen as human beings with human rights. We do not live in a society that acknowledges this. We are in a society in which autistics have rights only if and when we resemble non-autistics.” – Dawson, 2004

A black and white cartoon saying 'wrong direction' with a child running towards a wall. His shadow has angel wings.

9. It’s not about the needs of the disabled person, but the needs of society

Something I invite the pro-ABA (or undecided) parents reading this article to ponder is this: are the things you’re trying to ‘fix’ problems for the Autistic child, or problems for you? Are they truly issues which need remedying, or are they being seen as issues because of societal norms? To the Autistics subjected to it, ABA “at least appears to have inherited its foundations’ interest in societal benefit at the expense of individual rights” (Wilkenfeld & McCarthy, 2020).

A huge amount of behaviours seen as being without purpose, such as intense interests and stimming, are immensely helpful for Autistic people. Therefore, having interests withheld until the Autistic child performs a task they are either finding physically difficult or just really mentally don’t want to do is cruel. Preventing an Autistic person from stimming only serves to dysregulate them. The ABA practitioner isn’t doing anything to help the Autistic person, they’re making them more palatable to society. (Yes, I know that not all ABA practitioners stop children from stimming. Please don’t #NotAllABA me, the rest of what they/you do is awful anyway.)

Other things ABA practitioners work on are Autistic children eating appropriate foods. Performing self-care tasks in a manner society would approve of. Getting them ready for the outside world, rather than getting the outside world to at least meet the Autistic in the middle. At no point are the views of the Autistic person considered. Nobody is using their wellbeing as a unit of measurement for success. “Making decisions for patients for the sake of bettering society seems immediately suspicious from a modern perspective … as doing so places comparatively little emphasis on good of the patients themselves” (Wilkenfeld & McCarthy, 2020).

“ABA places an undue burden on autistic children is by defining therapeutic success primarily in terms of autists’ ability to fit into normal societal structures.” – Wilkenfeld & McCarthy, 2020

10. It doesn’t really work

Even with the unhelpful measures of success, ABA doesn’t work in the way it claims. Yes, it forces some Autistic people to act less Autistic, but it doesn’t ‘cure’ them of autism, how could it? You cannot change who someone inherently is, but you can force it into a dark cavern of their mind, a place they’ve learned to hide it and be ashamed of it.

A literature review of ABA effectivity studies was conducted in 2013. “Most of the literature review papers conclude[d] that the intervention programs are controversial, expensive and dependent of external variables” (Fernandes & Amato). They found that control groups were often not used – something which is essential to determine whether or not what is being tested is effective, or whether there is a placebo effect.

A more recent study shows that “conflicts of interest are prevalent but under‐reported in autism early intervention research” (Bottema‐Beutel et al, 2020). This means that there is a lack of transparency and the claim that ABA is evidence-based needs to be challenged.

“There is not enough evidence of ABA’s preponderance over other alternatives.” – Fernandes & Amato, 2013

To sum up

ABA has been described as “an extremely negative experience” (Wilkenfeld & McCarthy, 2020) by a huge number of Autistic adults who have been subjected to it. Chris Bonnello (Autistic Not Weird) did a huge survey in 2018 which showed that the Autistic community is against ABA, with 34.16% of all respondents and 53.48% of Autistics saying they would not recommend its use. Please note that the vast majority of the remaining percentages weren’t pro-ABA. A large percentage of the respondents abstained from answering. Only 13.92% agreed with ABA overall, and 5.19% of Autistics.

As “the standard measures for autists’ success make very little mention of the subjective well-being of [Autistics]” (Wilkenfeld & McCarthy, 2020) it is hard to claim that any outcome is an objective success. Sure, the Autistic child may now give eye contact, eat a few more things without vomiting, and communicate by speaking, but is a lifetime of thinking that they’re inherently ‘wrong’ worth it? Is a lifetime of PTSD the price you’re willing to pay for conformity?

Reference List

Bonnello, C (2018), Autistic Not Weird (online) https://autisticnotweird.com/2018survey/

Bottema-Beutel, K, Crowley, S, Sandbank, M & Woynaroski, TG (2020) The Journal of Child Psychology and Psychiatry (online)  https://onlinelibrary.wiley.com/doi/abs/10.1111/jcpp.13249

Cassidy, S, Bradley, L, Shaw, R & Baron-Cohen, S (2018), Molecular Autism (online) https://molecularautism.biomedcentral.com/articles/10.1186/s13229-018-0226-4

Dawson, M (2004), No Autistics Allowed (online) https://www.sentex.ca/~nexus23/naa_aba.html

Fernandes, FDM, & Amaton, CAH (2013) Scientific Electronic Library Online (online) https://www.scielo.br/pdf/codas/v25n3/en_16.pdf

Kupferstein, H (2018), Advances in Autism (online) https://www.emerald.com/insight/content/doi/10.1108/AIA-08-2017-0016/full/html

Wilkenfeld, DA & McCarthy AM (2020) Kennedy Institute of Ethics Journal (online)

https://muse.jhu.edu/article/753840

Further reading

https://neuroclastic.com/2019/03/27/is-aba-really-dog-training-for-children-a-professional-dog-trainer-weighs-in/amp/ If you read nothing else, read this!

https://neuroclastic.com/2019/03/28/invisible-abuse-aba-and-the-things-only-autistic-people-can-see/ – includes videos which are important to watch, but are disturbing and upsetting

https://tania.co.za/non-speaking-autistics-thoughts-on-aba/ – views of non-speaking Autistics

http://www.astraeasweb.net/politics/aba.html

http://www.thinkingautismguide.com/2017/04/if-not-aba-then-what.html

https://web.archive.org/web/20160313110407/https://www.realsocialskills.org/post/120453082402/aba-therapy-is-not-like-typical-parenting

http://strangeringodzone.blogspot.com/2017/05/analysing-responses-to-aba-critiques.html

https://www.psychologytoday.com/us/blog/the-homework-myth/202001/autism-and-behaviorism-0

 

Advocacy and Autistic UK CIC

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.

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”

Spinnaker Tower, Going Gold!

Autistic UK is proud to announce that the Spinnaker Tower in Portsmouth, Hampshire will be lighting up and Going Gold on April 2nd, World Autism Awareness Day.

This is an open invitation to any who wish to join us there to celebrate the day and show their support for Autism Acceptance. We extend a welcome to all Autistic persons of all ages along with their parents, families, friends and supporters.

Wear something yellow/gold or bring balloons of that hue. Paint a picture, your face or whatever you want as long as you are there to wear, display or hold your choice of showing support.

To find out more about the Going Gold campaign, go to our website at the address below. There will be more detail about the running order when we are better able to know how many people will be coming, so keep an eye out on https://autisticuk.org/going-gold-for-autism-acceptance/

Directions to the Spinnaker Tower can be found on its website here; https://www.spinnakertower.co.uk/plan-your-visit/how-to-find-us/

We hope you will come on the day and join us in first thanking the Spinnaker Tower for their support on this.

We will see you there!

 

 

link to the event; https://www.facebook.com/events/2233686840206985??ti=ia

Going Gold For Autism Acceptance

Julian Morgan

Why a Gold Infinity symbol?

Over the last year or so, I and a few others have been ghosting our way around the online autistic community with good intentions. Not to be all stalker-y here, honest, but we wanted to find a constant thread that the authentic, Actually Autistic voice spoke. I’m the one who got the job of sticking his head above the parapet and revealing our efforts and their results. I always get the short straw; Is it ‘cos I is Autistic?

This is not intended to be just for April. The idea is to have a common thread that runs through all groups, advocates and supporters that was easily recognised, different and came from the autistic community, not from those who think they speak for us.

The Gold Infinity is for use on ANY work, event, campaign, fund raising, whatever! It is meant as a symbol of authenticity, declaring support for acceptance all year round and stating this message came from an authentic autistic voice. We can self-police those who may abuse it. Social Media is a wonderful thing…

So how did we get here?

Âû

The Âû suffix has become quite common in its use as it uses the Autis(tic)(m) = Au* = Gold idea to self-identify and as a community had started #LIUG, Light it up Gold, in response to Auti$m $peak$ (A$). This was not the only use of Gold or Au we found, but it was the most common and seemed to have struck a loud chord in many groups and individuals in other countries as well as the UK.

*Au is the International Chemical Symbol for Gold from the Latin name Aurum.

The only other colour in serious contention was the Red Instead idea, also formed as opposition to A$, but without the larger base of support Gold had acquired. Nor did we really find a reason for red past expedience, its opposition to blue (A$) and it makes for a great hash-tag. There was no direct symbolism with Autism we could find amongst its supporters.

 I should take the time to make it very clear that the idea here is not to replace or ignore others efforts and campaigns and symbols. We support them for their commitment to acceptance and the work they do to achieve this. We ALL contribute to the whole; we ALL support efforts in raising awareness of Acceptance from any who support Actually Autistic people.

A rainbow coloured infinity symbol, the symbol of the neurodiversity movement.
The rainbow infinity symbol, which denotes neurodiversity

The use of the infinity symbol came from the growing popularity of it in spectrum colours to promote Neurodiversity. The idea of endless possibilities and untapped potential resonate through this symbol providing a simple and recognisable concept in one.

Autism is itself a spectrum, but we were looking for a unique identifier (without needing to ‘cure’ it). So the idea of combining the two came to the fore. If Autistics use Gold, then other Neurodiverse communities can use their choice of colour too. Slap it on an infinity symbol and it makes up part of the Neurodiverse Spectrum.

We hope this concept is also pleasing to the other unique Neurodivergent communities out there.

At the end of the day, you can design your own version and use it how you wish as long as it is an authentic voice using it to promote acceptance and abides by the guidelines. It is Gold and it is an infinity symbol. It is for Acceptance.

A gold infinity symbol with hands clasping in the middle

Autistic UK and other organisations and advocates have banded together to support ‘Going Gold’ for Autism Acceptance.

However, there are guidelines…nice and simple ones.

    1. You use the gold infinity symbol on ‘Going Gold’ campaigns and fundraising stuff. Design and size does not matter just as long as it is gold and an infinity symbol. I have put Autistic UK’s version, which reflects our logo, below as an illustration, design your own if you like.
  1. Call for Autism Acceptance. Awareness is spreading and UK local authorities and housing associations and Service Providers etc have finally got the hang of awareness, so time to turn to the next, Acceptance.

Please Note; The autistic community does not support ANY abusive, quack ‘cures’ like MMS/CDM, GcMAF, Chelation, turpentine, ABA (Dog training for kids-see research on PTSD below) or any other abusive therapy used to obviate our autistic identity. If you support any of these things, please do not use the gold infinity symbol as you will be stealing our voice for your own purposes and not benefiting autistic people at all.

Finally, and not a guideline but a constant; No one person or group owns this campaign.

It is a gift to all user led groups, autistic advocates and allies whoever they may be from a collective of autistic groups and individuals. This symbol comes from a collective autistic voice and is given freely to the autistic collective out there.

So grab your gold infinity symbols and start pushing. Have a Gold theme to your events, Go Gold and spread the word, wear gold and share on social media, it is up to each group and individual to spread the symbol, message and colour of acceptance as they wish.

There are no political boundaries here, so anyone in any country who supports Autism Acceptance is invited to participate.

One last request; please do not put your gold infinity symbol on a puzzle piece or combine their use. We don’t like puzzle pieces. Like awareness, they are sooo last year!

Poster advertising the Autistic UK Re-Launch on 27 January 2018.

Autistic UK Launch

Tickets available at the link Below!

https://www.eventbrite.co.uk/e/autistic-uk-re-launch-and-information-day-tickets-41470904592

Autistic UK is transforming from an unincorporated voluntary organisation into a Community Interest Company. This means we will be able to expand greatly on what we can do to further equal rights for autistic people and educate society about us. The possibilities really are limitless!

Obviously, the event will be an update of what we have done over the last year, plus lots of information about the conversion to a CIC and lots of opportunities to ask questions. There will also be opportunities to sign up to become a member of Autistic UK during the event. This is a great chance to join Autistic UK as we start an exciting new chapter in our organisation.!

We will have a few stalls available for information/vending, so if you know anyone who would like one, tell them to get in touch.

We will be meeting at St. Thomas Centre, Ardwick Green North, Manchester, M12 6FZ from 10:30am to 4:00pm. The building is fully accessible and we will have the main hall as well as two quiet rooms at our disposal. Detailed information about the venue is available below.

Venue

The venue is St Thomas Centre, a Grade 2 converted church. Although it is close to Manchester City Centre, it is in a green and peaceful area. The unofficial name for the street is “voluntary sector row”, as many voluntary organisations have their headquarters there.

Wi-Fi is free and smoking is not allowed in the building.

The website of the venue is here http://www.stthomascentre.org.uk.

You can take a “virtual tour” of the venue via google street view by clicking on this link http://www.stthomascentre.org.uk/our-rooms and selecting the “Tour” tab. The Event will be held in the Main Hall, which is directly down the corridor from the reception.

Address

St Thomas Centre, Ardwick Green North, Manchester, M12 6FZ

Reception number:

0161 277 1010

Co-ordinates: 53.4742427,-2.222962

Parking

There is on-street parking around the St Thomas Centre, but this can get really busy. Therefore, the venue has secured dedicated car parking space approximately 5 minutes’ walk away for visitors to the St Thomas Centre. The parking charge is £2.50 (all day). When arriving at the Power League Car Park, you will need to pop into their reception for two tickets; one to be displayed in your car, the other to hand in with your payment of £2.50 on arrival at the St Thomas Centre.

The Power League Car Park is on 20 Union Street (Postcode is M12 4JD) To get from there to the venue, go down Brydon Avenue (the street opposite the entrance to the car park), then turn left down Cotter Street when you reach the end of the avenue, and right when you reach the end of Cotter Street.

Directions by Car

Leave the M60 at exit 12 and join M602 at Salford. At the end of the motorway follow A57 Manchester (Eccles New Road becoming Regent Road). Drive for 3 miles then fork right under railway and join A57(M) Mancunian Way. Continue along Mancunian Way following signs for A6 Sheffield/Stockport/Ardwick, turn right at traffic lights, pass under fly-over, and travel approx. 200 metres, turn left at Ardwick Green North, turn first right, keeping the park on your right. The St Thomas Centre is approx. 100 metres on your left. Please see the map below.

Map to the AGM

Map to the AGM

Directions by foot

On Foot – (0.5 miles / 12 minutes) take the Fairfield St exit from Piccadilly Station. Walk straight ahead and cross Fairfield St by the pedestrian crossing (ignoring the crossing to the right). Follow London Road under the railway bridge. Continue past the McDonald Manchester hotel following the sign for the A6 to Stockport. Cross under the flyover (Mancunian Way) and London Road becomes Downing Street. Continue past Storage King and the School of Sound Recording until you arrive at Ardwick Green North. Turn left past the army base and follow the road around to the right behind the park. The St Thomas Centre is the church building on the left set back from the street next to Cotter Street. Please see the map below.

map to the AGM Venue

Map to the Venue

Directions by bus

Take the Fairfield St exit from the station (signed “local buses”). As you leave the station by the taxi stand the bus stop is immediately on your right on the same side of the road. You can take any of the bus nos. 192, 196, 201, 203, 204, or 205 and ask for Ardwick Green. The journey takes less than 5 minutes and is operated by Stagecoach Manchester.

Directions by Rail

The closest railway station is Manchester Piccadilly, which has direct train services to most parts of the U.K.

If you arrive in Manchester Victoria, Piccadilly Station can be reached by tram.

Train timetables can be found on www.nationalrail.co.uk.

Directions by Coach

National Express stops in Shudehill Interchange Coach Station, there are frequent Tram Services from there to Manchester Piccadilly Station.

www.nationalexpress.co.uk

www.megabus.com

Nearest Airports

The closest Airport is Manchester Airport which has a direct rail link to Manchester Piccadilly which takes around 20 minutes. From Liverpool John Lennon Airport, you can take the 86a bus to Liverpool South Parkway, which has many trains to Manchester Piccadilly. Total journey time is 60-90 minutes.

Local Accommodation

There are many accommodation options in Manchester City Centre, ranging from a bed in a hostel dorm to five star hotels. The cheapest accommodation for single rooms is easyhotel in Newton Street (£44 per night) and Ibis budget on Pollard Street (£49 per night). Cheaper accommodation may be found further away from the city centre.

You can find local accommodation on websites such as www.hotels.com www.booking.com www.lastminute.comwww.trivago.co.uk www.laterooms.com and www.hostelbookers.com.

Accommodation books up very quickly in Central Manchester though so if you need to stay anywhere overnight, please make your bookings ASAP.