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

 

Statement regarding the allegations of abuse at Ty Coryton

Please note that this article may be distressing and contains details of the alleged abuse.

On Wednesday 9th June 2021, it was reported by the BBC that four former employees have claimed that residents – Autistic children – are abused by staff.

Ty Coryton, based in Whitchurch, Cardiff in South Wales, is a facility providing both residential care and specialist schooling for Autistic children. The children attending – either as residents or as day school pupils – have extremely high support needs, most have co-occurring learning disabilities, and many have been failed by previous education establishments who were unable to accommodate their needs. These are children who are extremely vulnerable, are likely to be experiencing educational trauma, and who deserve to be treated with dignity, support, and respect.

Ten years have passed since the Winterbourne View scandal, it’s been five years since abuse at Mendip House was exposed, yet lessons are still not being learned. Autistic people – particularly those who also have a learning disability – are subjected to humiliation, physical and verbal abuse, and neglect. Restraint, including highly dangerous prone restraint, are being used regularly, often as a first response. Following evidence provided during the Winterbourne View review, both the National Institute of Clinical Excellence (NICE) and the UK government responded by updating guidance regarding the use of prone restraint in hospital and care settings. These advised that it should only be used if other de-escalation methods have failed (though at Autistic UK we do not condone any use of prone restraint), that there should be on-site access to lifesaving equipment such as defibrillators and oxygen, and it should be used for the shortest possible time – Autistic UK places this at zero seconds.

Despite these already conservative reformation attempts, prone restraint is often used as first response, and as mentioned in the Ty Coryton article, children are being restrained in this manner for prolonged periods of time, in this example 20 minutes. Prone restraint can kill. While this should be reason enough to ban its use, it also does nothing to de-escalate a situation; it provokes a fear response, either fight, (attempted) flight, freeze, or submit.

In addition to dangerous restraint, Ty Coryton, like with other institutions, have been accused of abuses such as secluding residents by locking them in their rooms, staff being verbally abusive, restricting access to food, and withholding money from the residents. While it’s easy – and typical – for individual staff members to be held accountable, these people are scapegoats for a wider issue. If it were simply a case of ‘a few bad people in the wrong job’ these horrific abuses wouldn’t be as widespread, nor would they span decades. Yes, individuals should report safeguarding concerns, but those who do are often managed out of their positions, or leave because no changes are made.

We spoke with a person who worked at Ty Coryton on a temporary basis in 2019 in the school. They have asked to remain anonymous, but informed us that they submitted a safeguarding report to their agency following their time at the school. While they stress that the staff they worked with genuinely seemed to care for the pupils, they were overworked, underpaid, and – due the environment being distressing to the pupils – often injured.

They told us that there are no safe areas for pupils in meltdown to de-escalate, and that the garden is used in lieu of breakout rooms, meaning “Regular disruption to the pupils’ routines, which can lead to meltdowns.” When speaking further of the unsuitable premises, they told us, “They bring in builders during school hours to carry out essential repairs (meaning workmen and tools all over the place),” adding that a pupil they were working with “Repeatedly tried to enter the construction areas and touch dangerous equipment including drills and nails. … He even managed to pick up an electric drill, but thankfully I was able to swiftly remove it from him.” 

Alongside this unsuitable physical environment, the school was missing one-page profiles (documents containing essential information about pupils’ support needs), plans change without warning (including taking pupils on trips or swimming at short notice), and the staff are regularly burned out and distressed. Such a changeable environment would be damaging to anyone, and this is where children with some of the highest support needs are educated. There’s no wonder that meltdowns are prevalent. With prone and supine restraint being the go-to ‘solution’, our source added, “There was a boy who was restrained like that so regularly that, when he could feel himself getting agitated, he would lie on the floor because he knew it was coming.”

In order to prevent future incidents, there needs to be an immediate shift in societal attitudes towards disabled people, in conjunction with a change in ethos from care providers. While those who control these homes still fail to provide adequate training, policies, staff renumeration, facilities, and support, these incidents will keep happening.

Autistic UK believes that a trauma informed approach should be adopted by all facilities, together with a strengths-based attitude towards their residents. In order to provide the care that vulnerable members of society deserve, as a minimum care homes and specialist schools should:

  • Use the trauma informed principles of safety, trust, collaboration, empowerment and choice
  • Provide appropriate communication tools to all residents/pupils, including AAC where needed – this should never be removed for any reason
  • Ensure that the sensory needs of residents/pupils are met
  • Ensure that residents/pupils are treated with dignity and respect – this is particularly important when working with residents/pupils with personal care needs
  • Recognise that disability (including learning disabilities) does not mean a person is a ‘younger person/baby trapped in an older person’s body’ – this is ableist, infantilising, and unacceptable – provide access to age-appropriate information in a stage-appropriate format
  • Reject and ban the use of prone restraint
  • Use person-centred planning, and ensure the needs of all residents/pupils are met
  • A change to the management culture to one that encourages and supports an easy to use, transparent and robust complaints process based on risk management principles. It should be designed to prevent repeated incidents together with protection for whistle-blowers, whether they be family members, residents, pupils or staff.

These points are not unreasonable. Many people reading them may wonder why we’re ‘pointing out the obvious’, yet care providers regularly fail to meet any of these points, then label their residents as having ‘challenging behaviour’ rather than acknowledging they’re failing their duty of care. It is worth remembering that placements are funded by local authorities; the state is footing the bill for this level of abuse. Would a ‘one strike and you’re out’ policy for company misdemeanours ensure that the owners ensure they protect the human rights of their residents? Perhaps the knowledge that they will be ‘hit in the pocket’ will be more successful than appealing to their humanity.

We contacted the Care Inspectorate for Wales for comment, as yet this has not been forthcoming.

Glossary

AAC – Augmentative and Alternative Communication. This can be in the form of letter boards, picture systems, or computerised software to aid communication for those who struggle with speech.

Prone/Supine Restraint – The restraint of a person in a lying position (face down and face up respectively), often on a floor, with one or two people on top of them. This has been the cause of death of care home residents, school students, and people detained by the police. More information and an image can be found in this article. An article in the Nursing Times contains information in standard English as to why floor restraint is dangerous, providing academic references for further reading.

I Will Not Stand By This

I will not stand by this.
Written by Bex Ryan

Today marks the month and the week
I must do something so important to me
Do you wonder how much I feel in my body?
Do I do what people think what I am doing
I leave that with you to think about that.

I thought so long to saying this
A new month will be the beginning of my journey
The steps I take in and the words I hear I breath out
I meant every word what I just said.

This week has finally come
I must do something about that
Something I really care about
Do you know what that could be?

The strength I take in
That thought came to me just in time
I feel this is the right time for me to write this
I do wonder myself if this is the right time for me to
do this now.

I will not stand by this no more
I will strive my best at work
I will join in
I will come to you and you come to me
You brought this to my attention.

We will be together
We will have each other
We might have more friends we thought we did
We will have the world and the people
For month and week, we all care about it.
This is important that we all take part in this.

Anti-Bullying Week 2020: United Against Bullying

I started writing a piece about how our online community looks after its members and where improvements are desperately needed, saying bullying should be called out at every opportunity. About half way through my third paragraph (bullies using the internet as a shield), when I found I needed to write about something I have never admitted in public before.
 
I have a bully.
 
Our community is blighted in a way rarely spoken of, particularly on social media. This Autistic community is made up (mostly) of vulnerable adults Yet too often, we see these personal attacks and hide to avoid being collateral damage. The bullies only see a self-satisfying, point scoring exercise in cancel culture and one-upmanship; whilst the silent majority remains that way out of fear. We all have enough problems IRL without some troll behind a keyboard doing their damnedest to destroy you, in order to satisfy their own twisted, selfish desires.
 
My bully thinks of themselves as a paragon of virtue, a person to be respected; a self-appointed Crusader who enjoys bullying through selective PMs suggesting inside knowledge, posing as a victim, posting slander, hints of wrongdoing without proof. Most advocates and activists find this this device to be anathema, but it is the mainstay of this bully’s armoury. I make no claim as a paragon of virtue. I’m Autistic. I’m as human as the rest of you, so I’ll not name my bully just yet, but you know who you are. Don’t you?
 
My bully came about when a group I was in tried to discipline them for bad behaviour. I wasn’t involved the second time, but it didn’t matter. With two others, I was targeted. The bully’s emails were accusations of damaging their reputation and engineering their expulsion over the informal warning they received from others. Complaints of how we had done this out of jealousy of their success. This became weeks of personal abuse, accusations and threats, usually many times in a day. They claimed innocence of all wrongdoing,, demanding full retractions of this and past ‘false’ complaints, demanding a public apology from us for suggesting they had behaved badly. The fact we could do nothing didn’t matter to them.
 
Think on that.
 
To prove their innocence, they relentlessly bullied 3 uninvolved persons for weeks, making baseless accusations and repeated, dire threats, to satisfy their Ego. Reminding them their accusations meant we could not deal with their complaint had no effect, those who gave the informal warning were ignored. Finally, we 3 made a bullying complaint and they resigned to avoid exposure. So started an online campaign of innuendo, hints of wrongdoing and insider information with no facts involved. Just constant, malicious gossip.
 
This continues to this day.
 
The effect on my health was stark. Some colleagues helped, some hid and pretended they ‘knew nothing about that’. I had MH problems, I became hyperalert and unable to avoid meltdown, suffered insomnia and inertia with 4 months off work this last year.
 
I’ve had enough of being a Troll’s victim. I thought “publish the emails, drag ‘em into the light”, so they can be exposed, removing their power. Then I thought, unannounced like that would be unkind. perhaps even bullying, so I keep to common decency. Something my bully lacks. Meanwhile, if anyone has ‘learned’ anything about me recently they want clarifying, just ask. I will answer honestly. My bully relies on my silence, which I now break.
 
Dear Bully, you are warned.
 
I’m fed up of being disparaged by this bully. I work bloody hard for our community and don’t get paid very much or often. This work, which mostly happens out of sight of social media, in the NHS and various Strategic Authorities, doesn’t make me special or important. I am only one of thousands who do this month after month across the UK. My work has finally got me to where I can do some lasting good; and the bully is back. For some reason, they need prove they’re ‘better’ than me; little more than Ego with a dash of narcissism. They can’t bear people they dislike having success, so they go about pulling those they perceive as competition down. A bully.
 
This stops now, as I will go public if they continue. I give fair warning. Got that, Bully?
I’m standing up to my bully and suggest others do, too. A bully’s power is nothing when they’re exposed. We all make mistakes. FFS we’re Auties, it’s in the job description! However, no-one deserves to be bullied for them. I prefer collaborative, constructive effort and the internal satisfaction good results brings. I don’t do this work for online celebrity and I certainly don’t do it for the money!
 
So; next time you are offered a PM or asked to join a private group to hear insider information or gossip about someone you may not know or have not met, that the PMer won’t discuss openly or include their victim in the conversation, think:
 
Am I helping a bully?
 

Getting away with murder; and why it should not happen

Photo credit: USA-Reiseblogger available free on Pixabay

Like all of our community, we are deeply saddened by the death of an Autistic child whose mother has been subsequently charged for his murder.

The greater tragedy surrounding the murder of this little boy is that it is unfortunately far from being an isolated case. This is rarely reported in mainstream news, and all too often when it is, the blame is laid at the feet of the murder victim as a burden to society.

This victim blaming culture is most visible on social media, where people flock to express their sympathy and empathy for the perpetrator, raising them to the status of a martyr. Phrases such as “mercy killing”, “they are in a better place”, and “what else could they do?” flood our newsfeeds, while the Disabled community’s voice is dismissed as “not understanding how hard it is to be the parent of a severely Disabled Child”.

Disabled people are parents too. Generations of families live with severe genetic conditions, many of which are hereditary and vary in their severity of their presentation. We are quite aware of “how hard it is to be the parent of a severely Disabled Child”.

At Autistic UK, we believe we echo our community’s voice in condemning these insidious attitudes often voiced by those who are not parents of Disabled Children.

Our current societal culture has developed the ability to see Disability as a reasonable excuse for murder. The pervasive view that the caregiver has no other choice needs to stop. There are always choices; even the perceived failure of giving up your child is preferable to murder. Murder is never acceptable.

We would suggest that other options include:

Seeking professional help:

  • taking the child to hospital
  • taking the child to a police station
  • taking the child to a fire station
  • taking the child to social services
  • dialling 999 if you feel you are about to harm your child
  • calling your GP and telling them you can’t cope
  • contacting disability charities and their associated support networks

These services and routes all lead to a Safeguarding Duty. Everybody in the public sector has responsibility under this duty. Duty holders must act in the best interests of the child.

Informal help:

  • seeking help on social media and/or websites – there are lots of support groups out there whose members will have similar difficulties
  • family and friends
  • contacting disability charities and their associated support networks
  • finding a local support group
  • open your web browser on any device and search “help with <insert name of disability>” – there will be a number of results providing details of support networks

Where specific support organisations don’t exist, there is always Unique, a Charity dedicated to supporting families of children with extremely rare genetic conditions.

For further information about this, please visit https://blog.theautismsite.greatergood.com/caregiver-murder/.

 

If you are distressed or affected by  the issues discussed in this statement, you may wish to contact one of the following support helplines:

Samaritans: Telephone 116 123

Shout: Text “Shout” to 85258

Papyrus: Hopeline UK Telephone 0800 068 41 41

National Domestic Abuse Helpline: Telephone 0808 2000 247

Childline: Telephone 0800 1111 (they also take calls from adults concerned about a child)

Cruise Bereavement: Telephone 0808 808 1677

Most of these organisations also have a chat function on their websites. In order to maintain your confidentiality, many of their telephone numbers will not show up on statements and may not be traced back to them in your call logs. You can find details of this on their websites.

Statement regarding the ‘Oliver McGowan Mandatory Learning Disability and Autism training’

This article was written collaboratively by Julian Morgan and Kat Williams

To start, Autistic UK would like to add a grateful acknowledgement of ALL those of us who have been pushing, campaigning and demanding formal learning disability and autism training to be nationally available. The announcement made today that all health and social care staff in England will receive mandatory autism training is the outcome we were all rooting and campaigning for, and is – on the surface – a huge step in the right direction.

But as ever, the execution from the NHS and Government never fails to disappoint.

Though medics may not be required to take the Hippocratic Oath, the statement “first do no harm” should still apply. The Oath was replaced by the General Medical Council’s (GMC) “duties as a doctor,” which many universities use as part of their medical graduation ceremonies as a ‘pledge’ to uphold, and all doctors must adhere to.

Now the Autistic community in England (not the UK as headlines suggest) finds out the ONLY autism related organisation that will be implementing ‘Oliver McGowan Mandatory Learning Disability and Autism training for all health and social care staff’, as announced, is one which has a history of exploiting those Autistics who contributed to its past online training packages. It’s also rather short of paid Autistic employees too; unpaid ‘volunteers’ and ambassadors it has in multitude. Other contributors include learning disability charities – all of which are parent focused or led – and this news has sparked a high level of concern within the Autistic community.

The “duties as a doctor” states that medics should “Never abuse your patients’ trust in you or the public’s trust in the profession.” Handing a training contract over to a parent-focused charity with such an atrocious history of death and neglect in their own care homes has deftly broken that trust in one fell swoop.

Medics must “Listen to, and respond to, their concerns and preferences,” yet they refuse to listen to the Autistic community who, for years, have been telling them that training should be directed and delivered by Actually Autistic people who have lived experience. The NHS employs lived experience advisers in many areas, yet autism seems to be a category in which “mother knows best.”

One of our Directors – who also sits on the NHSE Advisory group on Learning Disability and Autism – was promised that the NHS-wide training on autism and Autistic people would be co-produced and developed by lived experience advocates. Were they actually listening, or just saying things they thought we would like to mollify us?

They promised that what we referred to as ‘The Usual Suspects’ would not be their go-to choice for autism as they were heavily biased in their experience towards learning disabilities, and had no real experience of Autistic people other than ‘as learning disabled’ and were wedded to the medical model of care.

‘NO!’ they said, ‘Local implementation! Lived experience all through. Not all learning disability charities doing it…’

Despite promises to stop the standard practice of treating Autistic people as learning disabled, we now have a selection of learning disability service organisations telling medics and care staff what Autistic people need, without any meaningful Autistic consultation or input. We asked for separate, independent, Autistic advocates and organisations to be included in designing the bid and training, yet the infantilising of Autistic people (especially those with learning disabilities) means that it is presumed we are unable to know what we need and desire, let alone deliver this training ourselves. Of course, our betters know better than we do about what Autistics want.

The NHS has broken its pledge that ‘lived experience advisors will be used in all decision making and implementation processes in all areas.

What happened to Nothing About Us Without Us?

The chances of Autistic people who do not “toe the line” with the service provider in question contributing to this massively important work, has basically slipped to zero. Thanks NHS and Government. Notice how Autistics do not even make the headline on this official announcement from a national provider to the Care Industry?

The GMC’s duties of a doctor also states that they must “Work with colleagues in the ways that best serve patients’ interests.” We’re going to go a little off the path with this one, but realistically colleagues does not solely include other doctors. This includes the trainers, the administrators, the managers etc. Working with trainers who have demonstrated that they do not serve Autistic patients’ interests, yet again, goes against this ethical guidance.

Medics must also “Protect and promote the health of patients and the public.” They cannot protect the health of Autistic patients while simultaneously working with an organisation which has actively harmed Autistics, particularly as they then attempted to cover up said harm. Do they think we have forgotten Mendip House? Forgotten the cover up? This is especially pertinent as the NHS and Government’s working relationship involves them teaching medics and care staff how to better care for a portion of society they harm.

How do you feel about an organisation that still sends schoolchildren to secure units and ATUs telling care staff how to look after autistic children and adults?

An organisation that uses and promotes ABA and PBS for all? (If you don’t know why that’s a bad thing, please read this article written by Kat Williams on her site)

Have you forgotten the whistle-blower(s) and the denials of responsibility?

Do they think we have forgotten the abuse?

Does their track-record demonstrate that they’re up of this job? That further deaths will be prevented?

This is the organisation that will now train others to care for YOUR loved ones. A fine example of vanity and hubris above and beyond the call.

This organisation veils itself using the Social Model of Disability in its public image, yet follows the Medical Model of Disability behind closed doors. The thought of an organisation that treats the Autistic community as an income stream is not representative of that community. Its unwillingness to advance the Autistic cause through meaningful coproduction (rather than public-facing tokenism) is chilling. This is an organisation that practices ABA (as are the others which are involved). This organisation incarcerates children and abuses its charges. The NHS has already had ABA/PBS snuck through the back door through the Transforming Care Programme, and this new contract will see systems that Autistics have been campaigning to reform move back into behaviour-led thinking led by organisations whose training will be coloured by their own negative opinions.

The GMC code also states that medics must “Take prompt action if [they] think that patient safety, dignity or comfort is being compromised.”

Therefore, to the NHS and Government, we invite you to take prompt action now. Your Autistic patients’ safety, dignity and comfort are all being compromised with this union.

“You are personally accountable for your professional practice and must always be prepared to justify your decisions and actions…” Can you justify this?

Feel free to express your opinion to the National Autistic Society, Mark Radford at Health Education England, NHS England, and Minister for Care Helen Whately.

Whorlton Hall Panorama Report – A Statement

From the Directors of Autistic UK

Written by Errol Kerr and Kat Humble

Within the past few months, the revelations as to how the most
vulnerable of our community are treated at the hands of healthcare
professionals have been horrifying, though unsurprising, to us at Autistic UK.

Whether it’s Winterbourne View, Whorlton Hall or who knows how many
others, there is the level of contempt amongst those who provide care for
autistic and learning disabled people. Our long-term physical and mental health
needs go unmet, thus shortening our lifespans and damaging the lives that we
and our families live. There is a very good reason why the suicide rate amongst
autistic people is nine times higher than the national average. This number,
combined with those who die from neglect or incompetence is a canker in the
heart of our society that is being ignored.

Denial of Rights

Some deny us our right to adequate support for being “too expensive” to meet our needs locally. Some attempt to deny us support because it’s too much effort and keep passing it on to another agency. Then there are those, like the gang of staff members at Whorlton Hall, denying us support in favour of constant abuse and victimisation because they do not see us as fully human. We are “other” to them and therefore fair game.

This is not new. It is not a surprise, at least not to us. It is an
obvious outcome of a society that does not value difference. A society that not
only doesn’t value difference but fears it. A society where people feel they
must distance themselves from others who don’t conform to their definition of
normal. It is also the obvious outcome of a system that is not only corrupt,
but essentially unmonitored despite the existence of the CQC. An organisation
that is rapidly proving itself unfit for purpose.

The inhuman abuses that our people have regularly suffered at the hands
of those meant to care for them will shock the general public for a little
while and then, when we are no longer front page news and people have forgotten
about us, another revelation will happen. But, as incredible as this
investigative programme was, it alone will not change what is happening.

Panorama

In 2011, Panorama shocked the nation with the revelation of the abuses
at Winterbourne View. The CQC investigated the rest of the homes operated by
that company, Castlebeck Care, and found a “systemic failure to protect people or to
investigate allegations of abuse” and accused Castlebeck of misleading
them. Shortly after, the CQC came under scrutiny itself when it was discovered
that they had received numerous allegations of abuse dating back to 2008. The
head of the CQC resigned following the investigation. Sadly, that appears to
have been the sole outcome.

Now, eight years later, Panorama has
found another vile example to shock the public, Whorlton Hall. And again, they
have done a stellar job of showing the extent of the horrors that have
happened. Yet there have been numerous discoveries of such abuses between these
two investigations. One example was Mendip House, run by the NAS, who were
accused by the resident’s relatives of hiding the abuses suffered by their
loved ones for years before acting.

The Cover Up

Evidence in the report by the Somerset
Safeguarding Adults Board showed that the NAS had conducted internal
investigations which revealed extensive degradation of the people under their
care but did not alert the CQC or the police of these crimes. The report observed that it was “remarkable”
that, five years after Winterbourne, these abuses were not brought to light for
so long. The NAS was fined £4000 by the CQC for the financial abuses committed
by the staff, but not the perpetrators of the physical and mental abuses that
occurred. Despite these findings, the CQC stated that no other action was
required of them. No criminal charges were brought and the residents of that residential
care home were left without justice, like so many others. And so it continues.

Fit For Purpose?

A watchdog with no protective instinct is
useless. In a 2017 report by John Burton of the Centre for Welfare Reform, it
is shown quite clearly why the CQC is so ineffective. Instead of listening to
residents and loved ones directly, these worried people are directed to a call
centre where staff have no knowledge of who that home’s local inspector is or
how to reach them. All this call centre can do is essentially take a message
and put it on the home’s file. Reports of abuse and concerns of neglect are
left to pile up between inspections. Even then, those reports are often not
regarded, as the CQC rely most heavily on documents like care plans rather than
digging beneath the polished surface presented by a care home that knew they
were going to be inspected.

These abuses will not stop until the CQC
is reformed from the ground up. Autistic and Learning Disabled people are
speaking, CQC, are you listening?

A photo of a large cream-coloured two story house.

In Response to the Shocking Verdict of the CQC Regarding the Mendip House Abuses

Content Warning: this article discusses depictions of torture and abuse.

To all of you who read this:

It doesn’t matter whether you are autistic or not, whether you’re an ally or an advocate, whether you consider autism a disability or a difference, whatever language you may use to talk about autism or autistic people.
It doesn’t matter whether you’re affiliated to an organisation or not. It doesn’t matter if you’re a parent, carer, aunt, uncle, cousin or other relative of an autistic person. It doesn’t matter whether the closest autistic person you know is a classmate, a teacher, or a neighbour. It doesn’t even matter if the closest you’ve come to an autistic person is seeing Anne Hegerty on The Chase.
To any healthcare worker, professional, or commissioner who is as appalled as we are that their profession is benchmarked by the CQC’s ruling – a ruling that says it’s acceptable to abuse vulnerable adults in your care.
To anyone who abhors this ruling that downplays the atrocities that occurred in Mendip House, a ruling that says that a few thousand pounds can absolve the trauma faced by the most vulnerable.
To anyone who is disgusted by the idea that when you’re caught abusing vulnerable people – if indeed you are – you can avoid the worst of the charges brought against you by paying a paltry sum for the least of these charges while claiming sympathy for victims and promising change, time and time again.
To anyone over the age of eighteen, with a shred of human decency, this post is for you.

So many of us wish for the organisations responsible for permitting and covering up this abuse to be held accountable, and to ensure this is done we need to ensure our anger is directed to the right places. The actions performed by Mendip House are atrocious – the fact the Care Quality Commission (CQC) has all but absolved their acts is an unforgivable betrayal.
Whilst physical direct action and targeted protests will help focus the media and public’s attention toward this travesty, and whilst social media is a fantastic tool for organising our actions, it will be just as effective to focus the CQC’s attention on our actions by providing a torrent of formal complaints concerning their actions regarding the abuses suffered by the vulnerable residents of Mendip House.
As the CQC seems to believe it will shelter in silence during this storm, as no-one ‘who matters’ seems to be paying attention, we should ensure we bring the storm to them.
Below, you can find a link to the complaints page of the CQC, which contains all of the information you will need to make a full formal complaint through multiple formats, including an easy-read version and several languages. You can also find their contact details, separately, at the bottom of this post. It’s possible that the CQC may only accept complaints from the UK, however there is no harm in attempting contact from abroad.
You will note that this page is not for making a complaint to the CQC – it is to make a complaint about the CQC. To have the greatest impact, we should each submit our own complaints through any means most suited to yourself, whether as an individual or through a network or organisation. We should encourage anyone who is as angered by this abhorrent ruling as we are, to also submit a similar complaint.
Whether your complaint is made via email, in writing, or via phonecall, ensure that this is done – and ensure that, as the CQC requests, your complaint is directed for the attention of the Chief Executive. After all, to whom else should we indicate our anger that the Organisation they run appears to consider abuse in a care setting more acceptable than theft? To whom else should we express our disgust at this ruling, even though the CQC states on their website they have the option of “prosecuting cases where people are harmed or placed in danger of harm”?

As you take on this fight, be sure to direct others to the complaints page alongside this article from the Guardian that can be found below, discussing the events we are enraged at. Whether you share this post or the links themselves, whether you have this discussion publicly or privately with others, be sure to bring everyone together in this Share this with your friends. Share it in any page, group or network with any vague interest in disability, neurodiversity, human rights, or any political or social movements. Share it because you can.
Most especially, share it because many of us – those of us who may be most hurt by this ruling – may be unable to do so themselves. Share it because those who can’t share it are often the most vulnerable of us, those who we should put our rivalries aside for to uphold the rights of, and to inform those responsible for defending their rights – our rights – of just how angry we all are.

In solidarity,

Julian Morgan & Errol Kerr

Complaints Page:
https://www.cqc.org.uk/cont…/how-complain/complain-about-cqc

Postal Address:
CQC National Customer Service Centre
Citygate
Gallowgate
Newcastle upon Tyne
NE1 4PA

Phone:
03000 616161

Email:
enquiries@cqc.org.uk

Opening Hours:
8.30am – 5:30pm, Monday to Friday