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.

My Best Friends Have Four Legs

Many people rely on their friends for emotional support and to be a listening ear. They seek comfort from those close to them and turn to them in time of need. This is not always easy for me. I have never really connected that well with people and always feel a bit of a burden if I share my challenges with others. Add to this several chronic health conditions and my ability to socialise is limited. 

For this reason, my animals have always been my world. Throughout my life they have been my best friends and my comfort, there have been times when they have kept me going when I felt completely alone in the world and they keep me on track by having to take care of them.

My happiest times are when I am curled up on the sofa, wrapped in a blanket with a dog at my feet and a cat purring on my lap. The closeness of an animal lowers my anxieties and makes me feel less alone. That is when I feel safe and when I feel calm.

I didn’t understand until I received my autism diagnosis just why my animals had been so important to me, now it makes complete sense. I realised I could connect with them in a way that I could not connect with people, my animals loved me unconditionally and did not place excessive social demands on me. They knew when I was sad and needed to be loved, and we didn’t need verbal communication, we did not need words. On top of that an animal does not judge me if I haven’t brushed my hair or changed out of my pyjamas, an animal does not expect me to be anything other than I am.

Following my diagnosis in 2014 I launched the Autistic Women’s Empowerment Project. I had initially planned that it would only be an online project as I was socially isolated, dealing with a serious eye condition, struggling to leave my home and to take care of myself but I still felt the need to do something even if it were just to raise awareness. In June 2014 I was invited to attend The Autism Show in London alongside a company that was training service dogs to work with autistic children. The founder invited me along to promote The AWE project on her stand and instead of being excited I was filled with fear. I had no idea how I would interact with that many people and in such a loud and busy environment, but I was passionate about the recognition of autism in females and I really wanted to do it, so for three weeks I prepared myself. I wrote myself scripts for every possible scenario you could think of and worked out my own social story of what to expect. I watched virtual films of the venue and used google maps to explore the surrounding area to try and prepare myself. I had never visited London or a large exhibition centre before, so my anxieties were huge. Right until the last minute my brain was telling me to run away and presenting me 1000 reasons why I could not and should not even attempt it.

However, despite the overwhelming anxiety, I did manage to push myself beyond my limits which was an amazing achievement for me as I find social interaction difficult and crowded environments extremely overloading. The service dog that attended with us was amazing support. The support of a dog lessened my anxieties. I spent two days with her before the show so that she could learn my ways and her handler worked with me on strategies to lessen my anxiety and to help lessen the sensory overload that would be inescapable.

I didn’t think I would make it, but I did it I overcame my fear. We went over and over the plan and so we were prepared for what to expect. With the dog’s support I made it through the whole show and even managed to have a browse around the stalls. Whenever I had to go outside or walk-through busy environments she was there; she instinctively knew that I had a blind side and steered me away from people and objects. With the help of dark glasses and ear defenders and the interaction of my new canine friend I got through the weekend.

The first day I mostly spent on the floor with the dog interacting with the children especially those who were non-verbal as I have a good knowledge of Makaton. It was heart-warming and inspiring to see the children interact with her; she spent hours playing ball with what seemed like 100s of children. We were by far the busiest stand in the show and we got many repeated visits. 

By the second day I felt comfortable enough to begin interacting with the parents as well as the children and I listened to their stories which is one of the biggest reasons I became a campaigner and advocate. I know I could not have done it without the support of that wonderful pup. 

I have had dogs and cats all my life. Animals have always played a big part in our family; more than just pets they are members of the tribe. Both my son and my daughter are autistic, and their pets have been their best friends whilst they have been growing up. We have had many cats and dogs throughout the years. Many of whom have been rescue animals that no one else wanted.

When I was younger, I volunteered for the Cats Protection League and rehomed many old or unwell cats who were often overlooked when people were looking to home a rescue cat. My home often looked like a retirement home for cats. Many of the dogs my children had when youngsters were also older dogs who just needed a family. It was not just about the love the animal gave to us, it was the love our family gave to the animal and the skills having a pet taught my children. Now that my children have grown up and have their own lives and homes, my pets have become not just companions but also my emotional support.

I had always thought of myself of more of a cat person. I currently have four cats all with very different personalities and they too are wonderful company and emotional support. They help me have a routine no matter how much difficulty I am having with executive functioning they will remind me they need feeding, which then reminds me I need to eat. They keep me company when I’m working, me the computer a line of them sit intently watching; I usually having to push one of them off the laptop. The one limitation of a cat is they don’t like being on a lead and are not very keen on sightseeing. So, after my experiences at the Autism Show I knew I had to get me a dog.

I needed to find a way to overcome my anxieties and to calm my sensory system and for me the answer was my dog. I have always had dogs that complimented the personality and needs of my children. This time I chose my dog specifically for me. Boo the Welsh sheepdog came home when he was eight weeks old. He came from working stock from a Denbighshire farm, Mom and Dad were both working sheepdogs, but he was the runt of the litter and had been bullied a bit which led to him been of quite an anxious nature and we hit it off immediately. He picked me which made up my mind. He understood my anxiety and I understood his and our bond just grows stronger every year. He has loved having me at home all the time during lockdown, though he has missed the new toys that came when I returned from business trips.

Boo is far more than just a family pet. He has been with me six years now. He is very loyal and intuitive, and he has grown into an amazing companion. He learnt quickly that his barking was painful for me and will now only bark if there is something dangerous, such as a smell of smoke or if someone attempted to get into the house. He has learnt to recognise when I am anxious or sad and when I am in sensory overload and he interacts dependent on my mood. I need proprioceptive pressure when I am stressed to regulate my system, just the weight of the dog on my legs relieves the stress and the pain, and he knows intuitively when I need that. 

He is not registered as a service dog, so there is a limit to the places I can take him but despite this he has encouraged me to explore many places that I wouldn’t have gone alone. Each day he learns another skill that helps me and him interact with the world. He encourages me to go out and get fresh air and his presence lowers my anxiety. I really feel a dog gives me a sense of safety and security but also a true sense of companionship that I don’t get from other people. I often find that having a dog encourages communication with others, even if it is just talking about our dogs and how lovely they are. I struggle with communication but it’s easier to make conversation over a shared interest and I never have a problem talking to my dog. He doesn’t care if I stammer or stumble over words. He is often my audience if I need to practice a talk or presentation and as he is getting older he is getting quiet vocal himself.

The best thing about my work with Autistic UK being done at home is not having to leave Boo. He really deserves the label of wonder dog. He is amazing emotional support. He rarely leaves my side. I know he sees himself as an assistance dog. I just never thought it would be an admin assistant. He has become really interested in my work and loves nothing more than joining in a Skype call or even Autistic UK team meetings and he is very good at giving me a hint at 1am that it really is time to go to bed. In fact, he is looking at me and trying to rush me along now.

Both Me and Boo have been a bit lazy since lockdown last March and haven’t been out much. We have spent lots of time in the garden, but I haven’t had much time for walks. Despite barely stepping outside my house since March of last year I have actually been busier than ever and Boo’s walks have been a bit neglected. Luckily Boo is also a bit of a television addict and a couch potato and he is more than happy to curl up on his chair with a doggy film on while I am working away, and we have thoroughly enjoyed watching the Disney channel together. But all this sitting around has had an impact on both our waistlines, and we do need to get some exercise and fresh air. So, we are going to use #Walk your Dog Month to get outside a bit more. 

Here’s a few photos of my boy. We would love to hear your stories about your animal buddies.

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: willow’s Blog

I am an Autistic advocate and a lived experience advisor, and this means that I am expected to put myself out for public scrutiny. There are those who think that as an advocate you have to share every aspect of your life there are also negative individuals in the world who will create their own version of your story to point score and turn people against you or just to create drama and scandal.

This week is anti-bullying week and at Autistic UK CIC we have a hash tag:

#IHaveABully

We are going to be sharing useful information on the different types of bullying, and we are also putting together a list of up to date resources to add to the Autistic UK CIC website. We will be delving deeply into this subject looking at everything from definitions to long term impacts.

Some of us feel strong enough to share our stories on our blog and this is my attempt to put my thoughts together in a clear way. This has been such a difficult post to write and it has led to a lot of flashbacks and tears. I have c-PTSD from years of bullying and trauma because of my differences, and I am not ashamed to say that I still have scars.

It’s not easy to talk or even write about bullying as an adult. It’s one of those unspoken subjects; a taboo.

As an advocate I have many people who share their stories of bullying with me and some of these cases have been extremely distressing. In five short years I have heard of multiple cases where bullying has been relentless, and it has had long term impacts on individuals’ wellbeing. Sadly, I know of several cases where bullies have pushed individuals into taking their own life.

People often perceive bullying as a childhood problem, but many of the experiences shared with me have been by adults who are experiencing bullying now. Just as Autistic children grow up into Autistic adults, those who were bullies during childhood carry their ways on through to adulthood and one bully can affect many people. They do a great deal of damage and adult bullies become very good at hiding their attacks, often presenting either as a perfectly charming individual or even portraying themselves as a victim themselves to gaslight their victim and observers.

Being out as an Autistic person makes me open and it makes me a target. I think this is something that we as advocates don’t talk about enough.

During my years as an advocate, I have become very mindful of the fact that there are different types of bullying and have seen it playing out in too many environments. It has become ingrained into our society and I am not immune.

I was bullied as a child, so I know the long-term impact this has on an individual. Since becoming an advocate I have had a couple of bullies who lurk in the shadows waiting for when I am at a low ebb to have another stab with their knifes ,usually in the back may I add.

One thing I am always very mindful of is that there are two sides to every story and those who are so quick to throw stones often live in glasses houses. I am the type of person who collects all the stones that people have thrown at me to build a protective wall because I have learnt all about bullying. I use that knowledge to protect myself now, but it shouldn’t have to be like this.

Grown up bullies use covert methods as bullying often becomes more strategic in adult bullies (think of corporate bullying and competitor bashing). Often there is an ulterior motive especially in employment settings, business, and not forgetting the world of social media which is a subject all of its own.

I am seeing so many of my friends and colleagues having to deal with bullies and witch hunts across social media that I have absolutely no motivation to reach out to anyone on these platforms other than those I trust. I haven’t been attacked directly yet, but some close to me have and I know it will only be a matter of time. I won’t even go onto Twitter because in my opinion it has become the modern-day version of the stocks. One thing I have noticed is those who criticise tend to do it late at night when the person receiving the criticism is either asleep or, when awake, in a less resilient frame of mind so are less likely to challenge the perpetrator.

For a long time, I let other people’s negativity, bitterness and narrow-minded perceptions stop me from sharing my views and using my voice. I would let the things people said really get to me and would spend days worrying about how people perceived me.

I have removed a lot of people recently from social media as I have constantly had people trying to draw me into their arguments and group attacks. That really does not work with my mindset. People who know me will understand why I need to protect my own health and well-being and will actually make the time to engage in discussion rather than just lurking around for when they want to throw in negative jibs. I have a really strong scaffold of people around me but over the last few months I have definitely pulled away from more and more platforms which are become toxic an inhabited by trolls.

Our whole lives do not need to be shared on social media for us to be active citizens and advocates. There is a big difference between giving up your time to bring about systemic change and spending your whole life attacking and criticising on social media, just because another person’s experiences don’t fit into your narrow experience.

I find it especially distressing during this time that people feel they have a right to criticise and condemn without even checking their facts first. So many people are dealing with challenges created by COVID-19. We don’t know what anyone is having to deal with behind closed doors, and all this nastiness and underhand bullying is just adding to the stress levels.

It’s really not clever eating your own, especially when you only have half facts and hearsay to base your defamation campaigns on. The pandemic has already divided communities and that is the last thing we need. We can’t allow  our social structures and support systems to break down because it lessens our voice.

Those who are buying into this mindset of ganging up on others are not helping anyone. While people are fighting amongst themselves, they are not focusing on the good of society or the future issues that we are going to have to deal with. I refuse to interact anymore with people who are purely  focusing on their own personal vendettas.

We all have a choice of paths we take in life and I choose the one that leads to compassion and empathy, not criticism and condemnation.

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.

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

Gopul, a young man with black hair wearing a dark jacket and trousers, is standing on a path in a park with trees and grass in the background.

Living on Borrowed Time

Gopul, a young man with black hair wearing a dark jacket and trousers, is standing on a path in a park with trees and grass in the background.
Gopul in the park, aged sixteen

Gopul
Anand was sixteen years old when he and his family moved to the UK. His father,
a highly respected expert in economics, sustainability and social development,
was asked to join Oxfam in their Oxford office to be their Global Resilient
Livelihood Advisor. Gopul settled in quickly and loved his new life.

A Turn for the Worse

Unfortunately, when Shekhar, Gopul’s father, tried to renew their visa after five years, the Home Office rejected their application, despite Oxfam still needing him to do his vital work. The family were told they would have to leave the life they had built for themselves. Because of this, Gopul’s world spun out of control and his health took a dramatic turn for the worse. Shekhar filed an appeal, then the family heard nothing from the Home Office for two and a half years.

The extreme stress of this uncertainty caused Gopul to deteriorate quickly and he spent ten months in an Assessment and Treatment Unit; languishing until his parents won a tribunal for his release. He still has nightmares of the abuses he suffered there. Gopul stopped being able to go to his social groups and his impulsive behaviours increased. He stopped being able to take public transport, even with two support workers helping him and his world shrunk to his family home, spending time on his computer and drawing.

Rejection

A young man with black hair and a serious look on his face is standing in an Underground station.
Gopul in the Underground station, aged sixteen

The Home Office eventually wrote to the
Anand family, telling them that their appeal had been rejected and that they
had to leave. Shekhar asked for an exemption based on medical grounds, that
Gopul was by this time in no fit state to travel. While they await the answer
to their appeal for an exemption, the Anand family cannot travel as their
passports are still being held by the Home Office. They were not even able to
visit Shekhar’s mother when she underwent heart surgery.

Evidence

Along with the application for
the exemption, Shekhar submitted evidence from Gopul’s psychiatrist and social
worker that clearly stated that a plane journey would cause Gopul to be a
danger to himself and possibly others. They also pointed out that the support
and treatment that Gopul was receiving was not readily available in India and
his physical and mental health would suffer tremendously.

Running Out of Time

Two young brothers in formal Indian garb. One boy in vibrant red and a smaller boy, Gopul, in blue.
Gopul, aged seven, and his brother

The
Anand family find out if their exemption will be granted at the end of January.
If the answer is no, they have no further options, they will have to leave
despite the risk to Gopul’s health and the possible risk to other passengers on
the flight.

Please Help

We are asking everyone to sign
the petition linked below asking the Home Office to grant Gopul the medical exemption
that would allow him and his family to stay in the UK and continue to receive
the support and treatment he needs to stay safe. Please share this article to
help us spread awareness.

If you are able to do so and
wish to do more, please contact your MP, any journalist you know, anyone you
think might be able to help, and tell them what is happening. The more people
know about Gopul and the more they protest at his inhumane treatment, the
better chance we have of the Home Office deciding they need to accept the
appeal and grant his exemption.

https://www.change.org/p/home-office-please-don-t-force-my-severely-disabled-son-to-leave-uk?recruiter=410764766&utm_source=share_petition&utm_medium=copylink&utm_campaign=share_petition

An Appeal to Stop the Inhumane Deportation of Gopul Anand

by Errol Kerr and Kat Humble

Gopul Anand, 23, is fascinated by computers. He loves to explore science, music and art and has an immense interest in learning as much as he possibly can about the world. His brother, currently studying computer science at university, shares information on what he is studying with him as well as playing the odd video game or two.

Gopul is an autistic and multiply disabled young man currently living in Oxford with his father and mother and his younger brother visits him during term-breaks and weekends. He receives round-the-clock care from his family after his health deteriorated drastically in 2013. He was sent to an ATU (Assessment and Treatment Unit) in 2015. After 10 months, his family were forced to go through a mental health tribunal to have him released and Gopul still struggles with nightmares and flashbacks about his experience there.

Due to his many conditions (autism, learning disability, epilepsy and schizophrenia), Gopul needs a significant amount of care. His medication often leaves him sedated to such an extent that he is unable to carry out a regular daily routine without support. He is assisted by two support workers when he needs to use public transport or go shopping. Feelings of anxiety manifest in outbursts and meltdowns, but Gopul often finds ways to stim in order to stem these.

Visa Troubles and Stress

Gopul’s family moved to the UK as his father, Shekhar, started working at Oxfam on a five-year intra-company transfer visa. This had previously been extended and was to extend further, as Oxfam were hoping to keep Shekhar working with them due to his immense experience and talents. However, as the rules around visa extensions changed as part of the policy on immigration, Shekar and his family were planning to return to India. Unfortunately, after Gopul’s health deteriorated in 2013, it is now impossible for him to travel safely.

Medical professionals, including his doctor and social worker, have stated that Gopul is unfit to travel, and that both his safety and the safety of the other passengers would be at risk should he have to leave his current environment. Should Gopul be forced to leave the UK, his family and medical professionals report that not only would his condition will suffer irreparable damage and extreme anxiety, but it could also make him dangerous to other passengers during travel, also affecting his mental health and well-being in the long run.

His current care plan has been thrown into uncertainty because of the protracted situation with the Home Office. Gopul and his social workers have spent many months building trust and a strong relationship with one another and, after his experiences in the ATU, family support is key. Gopul’s friends, family, medical team and possessions are all here, in the UK. Here, he is in a safe environment with appropriate support and medical treatment. This support would be unavailable should Gopul and his family be forced to leave.

Human Rights Violation

Because his health conditions are not obviously physical – i.e. either because they are invisible disabilities or mental health conditions, the Home Office has elected to ignore all medical evidence provided. The family’s solicitor, Sugina Mehra, affirmed that the level of medical evidence supplied by Gopul’s psychiatrist and social worker was ample. This, of course, is a grave breach of Gopul’s human right to not be discriminated against because of his disabilities. Disabilities should not have to be visible to be counted as real.

This situation has deeply affected his mental health. He has stopped attending regular social groups due to the intense stress he feels about his family’s situation and he is now less able to control his impulsive behaviour as his stress increases. Gopul considers the UK his home. It has been his home for the past seven years.

Please Help

We are hoping that, by publicising his case, it will encourage the general public to contact the Home Office and their MPs to register their disgust at the decision and to state their support for Gopul and his family. We are also hoping that you will sign the petition at https://www.change.org/p/home-office-please-don-t-force-my-severely-disabled-son-to-leave-uk?recruiter=410764766&utm_source=share_petition&utm_medium=copylink&utm_campaign=share_petition to join the thousands who have already signed it to show their support. Thank you.