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

A critique of the use of Applied Behavioural Analysis (ABA)

Posted with permission from Dr. Damian Milton, originally written as the Appendix for the Labour Party Autism / Neurodiversity Manifesto Steering Group, 2018


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

“…right from the start, from the time someone came up with the word ‘autism’, the condition has been judged from the outside, by its appearances, and not from the inside according to how it is experienced.” (Williams, 1996: 14).

This report looks into the commonplace implementation of Applied Behaviour Analysis (ABA) and Positive Behavioural Support (PBS), criticisms of these approaches, and why they are not usually supported by neurodivergent communities, before concluding with some recommendations for future practices.

ABA can be defined as the application of techniques based upon the philosophy of radical behaviourism (pioneered by B.F. Skinner and others). ABA seeks to utilise these theories of learning in order to alter behaviour. Contemporary theory and practice, despite moving beyond the ‘methodological behaviourism’ that prioritised behaviour modification, to the use of ‘functional assessments’ of the ‘antecedents, behaviour, and consequences’ of behaviour within a context (or ABC method), still primarily focuses on reducing behaviour deemed ‘aberrant’ or ‘inappropriate’ and increasing behaviour deemed socially ‘valid’ and ‘acceptable’. By following the principles of radical behaviourism, thoughts and emotions are treated as behaviours operating in the same ways as observable actions (Research Autism, 2018). Such a philosophy is criticised by other schools of Psychology or Philosophy of Mind (Stanford Encyclopedia of Philosophy, 2015). Proponents of ABA suggest that it is a ‘natural science’ of behaviour, rather than a ‘social science’ dependent on hypothetical constructs.

“Behaviour Analysts are not distracted by the many different theories of the causes of autism.” (childautism.org.uk, 2018).

Critics would suggest that rather than being an objective natural science however, it rather uses a flawed set of conceptual concepts at the expense of excluded concepts that have developed through other disciplines and perspectives. Despite being a general theory and practice, it is often incorrectly assumed to be a specific intervention used with autistic people (by both some proponents and critics). The history of ABA is not without significant controversy outside of working with autistic people though. One of the pioneers of using ABA to make autistic people ‘indistinguishable from their peers’ was Ivar Lovaas who also utilised the method as a form of ‘conversion therapy’ for transgender children:

“Rekers and Lovaas conducted the treatment in response to the parents’ concerns not the child’s. Furthermore, they challenged all four of the reasons Rekers and Lovaas stated for going forward with the treatment, including the need to relieve the boy’s suffering, the idea that the “problems” would continue into adulthood, that an early intervention may be the only treatment that worked, and that “the parents were becoming alarmed.”” (Wilhite, 2015).

These remarks are eerily familiar with regard to the reasons given as to why ABA is often administered upon neurodivergent people. In the UK, a somewhat less extreme version of ABA has taken shape in the form of Positive Behaviour Support (PBS):
“Another way to decide what to teach a child with autism is to understand typical child development. We should ask what key developmental skills the child has already developed, and what they need to learn next. The statutory curriculum in the countries of the UK also tells us what children should learn. Then there are pivotal behaviours that would help further development: teaching communication, social skills, daily living or academic skills that can support longer-term independence and choices.” (Hastings, 2013).

Despite contemporary behaviourist theorists such as Hastings (2013) who favour PBS claiming to use a non-normalising social model approach, it is clear from the above passage that a normative approach to child development and education is being utilised. Such a view can be contrasted with autistic and wider neurodivergent and disabled activist accounts regarding behavioural intervention. A recent multicentre, cluster randomised controlled trial conducted by Hassiotis et al. (2018) however found no ‘treatment effects’ in terms of reductions in ‘challenging behaviour’ between those being cared for by staff trained in PBS compared to those who were not, and that further research should: “…endeavour to identify other interventions that can reduce challenging behaviour.” (Hassiotis et al., 2018:1).

According to the UK Society of Behaviour Analysts, the use of ABA should be based on a number of values, including a focus on the ‘individual’ and on ‘skill acquisition’. “Behaviour analysts ensure that the goals, methods, and outcomes of any intervention are important, understandable, and acceptable to the person whose behaviour is being changed, as well as to those who care about the person (e.g., parents, carers, teachers).” (UK-SBA, 2018).

Given that ABA is practised upon young children and less verbally articulate autistic people, coupled with the lack of understanding often found in non-autistic people’s interpretations of autistic ways of being and actions (Milton, 2012, Chown, 2014, Heasman and Gillespie, 2017, Sasson and Morrison, 2017), these values cannot be ensured. The ethical decisions as to what behaviour is to be addressed and why is left to carers and professional advisors. It is also notable that the behaviour often deemed in need of change by professionals for ‘social validation’ are not as important, understandable and acceptable to the autistic person expected to perform and comply.
Similar issues would also be pertinent with all neurodivergent identities.
“Any decisions made about how behaviour will be assessed or changed are sensitive to the individual circumstances of the person and are aimed at improving quality of life.”
(UK-SBA, 2018).

Yet, when quality of life is defined in normative terms and without the input of neurodivergent people, or even deliberately not addressing critique, it can only too quickly become ableist oppression. Behaviour analysts suggest that ‘skill acquisition’ should be seen as primary goal of intervention. This places the pressure on the neurodivergent person to conform to society, whilst not making the same effort in return (Milton, 2014, 2017) “…to address quality of life issues by improving skills that can remove barriers to learning and facilitate independence and best practice utilises methods based on ABA…” (Keenan et al. 2014: 167).

The narrative presented by some leading advocates of ABA see autism and other neurodevelopmental ‘conditions’ as barriers to learning, and ABA as a way of facilitating independence and improving skills, and that this will all lead to a better quality of life. This statement is however highly normative, and unsympathetic to a social model of disability. Criticisms of ABA are often misrepresented by ABA proponents as a caricature, without attempting to engage fully with those criticisms. This is particularly relevant when such practices are implemented on potentially vulnerable people.
“One expects lobby groups to give vent to fixed and emotionally charged views, but one expects more from scientists. Tolerance of scrutiny, acceptance of criticism, and objectivity in experimental approach and the interpretation of outcomes are expected. A discipline that makes extravagant claims of its methods, overstates its scientific status and has difficulty agreeing on definition of its terms will struggle to achieve scientific credibility.” (Hughes, 2008).

For many neurodivergent activists, the normalisation agenda inherent in such approaches is not a caricature, but a felt experience of living in what is perceived to be an inherently ableist society. Who gets to define what is ‘appropriate’, ‘challenging’, ‘disordered’, and ‘socially important’, is always imbued with unequal power relations (Mason, 2005). A denial of the directly felt harm of those that have had such methods implemented on them is often met with increased anger and frustration from members of the neurodivergent communities, as well as some parents (for examples see: realsocialskills, 2018, Omum2, 2018, Dalmayne, 2018), yet despite this, activists have attempted to explain what their contentions are, even making distinctions between differing experiences of ABA (Unstrangemind, 2018). The impasse between these perspectives is not just over the ideological purpose that a method is set to, but also the processes of ABA-based practices.

Although Milton (2016) found that interventions akin to PBS were popular amongst parents, this was contrasted with the views of autistic people. Tensions between these views are likely to persist, but a greater understanding of the reasoning behind why differing stakeholders are attracted to differing ideologies and practices can help all to build a common language in which to debate the issues. Such a way forward is being held back by those with a dogmatic adherence to ABA however, and a focus purely on the reduction of so-called ‘challenging behaviours’.

“…the whole ABA movement appears increasingly more like a cult than a science: there is a charismatic leader, a doctrine, a failure to engage with criticisms, inquisition and denunciation of any who criticise (however mildly), misrepresentation of critics, and proselytising exercises to gain more converts and spread the word.” (Jordan, 2001, cited Fitzpatrick, 2009: 141).

A study by Remington et al. (2007, cited Fitzpatrick, 2009) compared those who had home-based ABA to those who did not, over a two-year period. Using measures of intelligence, language use, daily living skills, and a statistical measure of ‘best outcomes’, the majority made no significant advances. Magiati, Charman and Howlin (2007) found no significant differences in a range of outcome measures either, although large differences were found regarding outcomes within both control and experimental groups. Hogsbro (2011, cited in Milton, 2016) found that on average, ABA provision had a negative impact on a number of standardised measures. Yet, the parents of children on such programmes were found to hold the highest expectations for their children’s educational progression, and professionals and parents using this model subjectively rated improvements higher than all other groups. Similar findings were also found by Kupferstein (2018).

“I had virtually no socially-shared nor consciously, intentionally expressed, personhood beyond this performance of a non-autistic ‘normality’ with which I had neither comprehension, connection, nor identification. This disconnected constructed facade was accepted by the world around me when my true and connected self was not. Each spoonful of its acceptance was a shovel full of dirt on the coffin in which my real self was being buried alive…” (Williams, 1996: 243).

In this quote, the late Donna Williams (1996) suggests that by learning by rote how to act as a nonautistic person can produce a ‘masking’ effect and be detrimental to long-term well-being and mental health. Williams (1996) directly criticised the use of behavioural techniques such as ABA for only working on function and appearance, and for their lack of fit with autistic perceptions. For Williams, such techniques:
“…may feel like a senseless ritual of abuse, regardless of its ‘good’ intentions.” (Williams, 1996: 51).

Kupferstein’s (2018) recent study regarding the potential links between ABA, post-traumatic stress disorder (PTSD) and autistic people found that respondents across all ages who were exposed to ABA were 86% more likely to meet the PTSD criteria than respondents who had not been exposed to ABA practices.

Major issues with the ABA theory and practice:

– What behaviours are reinforced and deemed as functional and of social importance and relevance is chosen by an outsider
– ‘Reinforcements’ may be inappropriately given (e.g. the bombardment of emotionally laden praise, and hugging, and punishments being potentially internalised as rewards such as timeouts)
– Rote learning can lead to training people to behave as if their problems do not exist, or lead to ‘autopilot’ responses
– The claim that ABA will suit everybody as an applied method – it clearly does not
– The focus on behaviour at the detriment of subjective understanding and cognition
– Often focuses on compliance and founded on normative assumptions
– Reduces opportunity for natural curiosity and exploration
– Utilises ‘reinforcements’ that are often extrinsic rather than intrinsic motivations for activities
– The lack of generalising of newly learnt ‘skills’
– Sometimes punishment is endorsed as a ‘last resort’
– The intensity of programs (often suggested that one works on ABA programs for forty hours a week).

Instead, it is recommended here that practices should:

– Take a holistic and person-centred approach which therefore takes into account neurodivergent sensibilities, sensory perceptual differences, subjective accounts, cognitive theory, and a social model of disability
– Building understanding and communication between all involved
– Enabling environments to be more accessible
– Reducing direct confrontation
– Ethical considerations must be built in to every step of the process of acquiring professional competencies
– Use of dangerous restraint methods and forced seclusion should be seen as disciplinary offences
– Rather than focusing on perceived weaknesses and absent skills, utilise strengths and interests
– Neurodivergent perspectives must be built in to every step of the process of acquiring professional competencies
– Building local expertise and communities of practice, drawing upon multi-disciplinary expertise, but places the neurodivergent person at the centre of considerations.

Although similar criticisms can be made of other normative interventions that are administered upon neurodivergent people, few have as poor a track record in terms of participation as ABA and PBS. Although individual practice by parents and indeed professionals may not seek normalisation in the use of ABA, the flaws in its theory and implementation mean that we should be looking beyond its scope. Therefore the endorsement of PBS by the Care Quality Commission, alongside the widespread use in schools and mental health services needs urgent review. As a way forward, it is suggested here that the person-centred and socially sensitive approaches being developed by groups such as Studio3 and AT-Autism are promising and that these need to be tested with high quality research.

References
Child Autism UK (2018). ABA and autism. Accessed online at: https://www.childautism.org.uk/aboutautism/applied-behaviour-analysis-aba-and-autism/
Chown, N. (2014). More on the ontological status of autism and the double empathy problem. Disability and Society. Vol. 29(10): 1672-1676.
Dalmayne, E. (2018). Applied Behavioural Analysis: First-Hand Accounts, Accessed online at: http://www.autismdailynewscast.com/applied-behavioural-analysis-first-handaccounts/27715/emmadalmayne/3/
Fitzpatrick, M. (2009). Defeating Autism: A Damaging Delusion. London: Routledge.
Hassiotis, A., Poppe, M., Strydom, A., Vickerstaff, V., Hall, I. S., Crabtree, J., and Cooper, V. (2018). Clinical outcomes of staff training in positive behaviour support to reduce challenging behaviour in adults with intellectual disability: cluster randomised controlled trial. The British Journal of Psychiatry, 1-8.
Hastings, R. (2013). Behavioural method is not an attempt to ‘cure’ autism, Accessed online at: https://theconversation.com/behavioural-method-is-not-an-attempt-to-cure-autism-19782
Heasman, B., & Gillespie, A. (2017). Perspective-taking is two-sided: Misunderstandings between people with Asperger’s syndrome and their family members. Autism, published online July 2017: http://journals.sagepub.com/doi/abs/10.1177/1362361317708287#articleCitationDownloadContainer
Hughes, M-L. (2008). ABA – Giving Science a Bad Name? Accessed online at: https://thepsychologist.bps.org.uk/volume-21/edition-5/letters
Keenan, M., Dillenberger, K., Rottgers, H., Dounavi, K., Jonsdottir, L., Moderato, P., Schenk, J., VireusOrtega, J., Roll-Pettersson, L. and Martin, N. (2014). Autism and ABA: The Gulf Between North America and Europe, Review Journal of Autism and Developmental Disorders. Vol. 2(2): 167-183.
Kupferstein, H. (2018). Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis, Advances in Autism, Vol. 4(1): 19-29.
Magiati, I., Charman, T. and Howlin, P. (2007). ‘A two-year prospective follow-up study of community-based early intensive behavioural intervention and specialist nursery provision for children with autism spectrum disorders’, Journal of Child Psychology and Psychiatry. Vol. 48 (8): 803-812.
Mason, M. (2005). Incurably Human. Nottingham: Inclusive Solutions.
Milton, D. (2012). On the Ontological Status of Autism: the ‘Double Empathy Problem’. Disability and Society. Vol. 27(6): 883-887.
Milton, D. (2014). So what exactly are autism interventions intervening with? Good Autism Practice, Vol. 15(2): 6-14.
Milton, D. (2016). Educational discourse and the autistic student: a study using Q-sort methodology [doctoral thesis]. Birmingham: University of Birmingham.
Milton, D. (2017). Challenging the ideology of idealised normalcy. in: Milton, D. and Martin, N. eds. Autism and Intellectual Disabilities in Adults, Vol. 2. Hove, UK: Pavilion Press.
Omum2 (2018). ABA and Autism – the thorny problem of control and consent, Accessed online at: http://smallbutkindamighty.com/2015/06/16/aba-and-autism-the-thorny-problem-of-control-andconsent/?utm_content=buffer71bf8&utm_medium=social&utm_source=twitter.com&utm_campaign
Realsocialskills (2018). ABA therapy is not like typical parenting, Accessed online at: http://realsocialskills.org/post/120453082402/aba-therapy-is-not-like-typical-parenting
Research Autism (2018). Applied Behavioural Analysis, Accessed online at: http://www.researchautism.net/autism-interventions/types/behavioural-anddevelopmental/behavioural/applied-behaviour-analysis-and-autism
Sasson, N. J., and Morrison, K. E. (2017). First impressions of adults with autism improve with diagnostic disclosure and increased autism knowledge of peers. Autism, published online November 17th, 2017: http://journals.sagepub.com/doi/abs/10.1177/1362361317729526
Stanford Encyclopedia of Philosophy (2015). Behaviorism. Accessed online at: https://plato.stanford.edu/entries/behaviorism/
Unstrange Mind (2018). ABA, Accessed online at: https://unstrangemind.wordpress.com/2014/10/07/aba/
UK Society of Behaviour Analysts (2018). Behaviour Analysis. Accessed online at: http://uksba.org/behaviour-analysis/
Wilhite, C. (2015). Trangender people and behavior analysis’ dark past. Accessed online at: http://www.bsci21.org/transgender-people-and-behavior-analysis-dark-past/
Williams, D. (1996). Autism: An Inside-Out Approach. London: Jessica Kingsley.

Original publication can be found on https://neurodiversitymanifesto.com/

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.

International Day of Disabled Persons 2018

by Errol Kerr 

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

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

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

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

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

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

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

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

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

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

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

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

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

Statement regarding the Resignation of Autistic and Disabled MP Jared O’Mara from the Labour Party

The following is a statement regarding the resignation of autistic and disabled MP Jared O’Mara from the Labour Party. This comes shortly after his reinstatement after being temporarily banned from the party after allegations were made of homophobia and misogyny online.

[A link to the BBC article concerning this can be found here.]

It is true that disabled people, autistic people, and people who fit into the wider neurodiversity umbrella – are not given a voice within UK politics as a whole. Mental health, too, is a topic only recently brought into discussion.

For this reason and this reason only, it is a shame to see a disabled and autistic member of parliament resign from their party.

Autistic UK believes that O’Mara’s resignation from the Labour Party, and his continuation to serve as an MP for Sheffield Hallam, is a failing on his part to uphold his role to represent his constituents, his party, and to autistic people as a whole.

As a representative of the UK, O’Mara – like all MPs – is to be held responsible for his past and present actions by the public. Whilst, as stated, his actions were not necessarily “criminal”, to excuse discriminatory actions in the form of harassment and victimisation online as such is disgraceful.

There is a notable difference between behaviour that is considered “poor” because autistic people misunderstand a society that does not work for them, and discrimination. There’s a notable difference between laughing during a cinema screening and discriminating against women and LGBTQ+ people. Discriminatory, cruel and vindictive behaviour is not due to an autistic person’s relationship with society and is, like neurotypical people, entirely upon themselves.

Autistic UK stands against all forms of discrimination. We will never condone an individual using their place in one discriminated group as an excuse, however veiled, to discriminate against others.

It is true that people do change and a person should not solely be judged by their past. However, any individual must be held responsible for their past actions if they have not openly done so already. To refuse to acknowledge your past only causes more harm to those you have harmed and failed.

Through his recent actions, he has – whether consciously or not – made his prior comments, his resignation, and his treatment by the party as a whole, about being autistic. A decision that undermines autistic and disabled people as a whole.

Using your place within the autistic community – or any marginalised community – to excuse discrimination is incredibly dangerous and is a method used widely within certain circles to excuse white, often male, violence against women. Using the fact you are autistic as an excuse for poor behaviour only serves to damage the reputation of all autistic people.

It is deeply hypocritical to accuse a political party of not sharing a “commitment to the true definition of equality and compassion” when suspended for misogynistic and homophobic comments that go against the exact beliefs stated.

The fact an individual is disabled, mentally ill, neurodivergent or a mixture of these neither explains or excuses behaviour that is abhorrent, and O’Mara’s unwillingness to accept a formal warning and attend any form of training shows an unwillingness to accept and learn from his past wrongdoings.

We, too, would like to suggest reading about autism. However, we would also particularly like to highlight the use of autism and autistic people as a scapegoat for wider discrimination.

Interview with Steve Silberman


We are delighted to be able to bring to you our exclusive interview with Steve Silberman, the author of NeuroTribes!

If you wish to purchase NeuroTribes, it is available on Amazon.co.uk.  Just click here!

Without any further ado, let’s dive into the questions:


Photo of Steve Silberman and Keith Cockburn at their wedding.
Photo by Mike Mermin

AUK: What led you initially to decide to write about autism and its history?

Steve Silberman: I tell the whole story in great detail in the introduction to NeuroTribes, but here’s a short version. In 2001, I wrote one of the first articles about autism in high-tech communities for Wired magazine, called “The Geek Syndrome.” I wrote it when the hysteria about vaccines was at its height, but instead I focused on genetics, and on the notion that places like Silicon Valley might offer social and romantic opportunities for people with autistic traits that had never before existed in history, which was contributing to an increase in the prevalence of autism.

Because the article came out right after 9/11, I assumed it would be overlooked and forgotten, but instead, the opposite happened. I got emails about that article nearly every week for at least ten years. These emails mostly came from autistic people who recognized themselves in my writing, and from the parents and relatives of autistic kids. Most of it had to do with lack of access to basic services for autistic people and their families – long waiting lists for diagnosis, lack of employment and housing, lack of health care, lack of transition programs.

Meanwhile, the media was perseverating on vaccines, because the rise in the estimated prevalence of autism that began in the early 1990s had never been explained. It was clear that the concerns of the media and the concerns of the people on the front lines of autism – that is, autistic people and their families – had drifted really far apart, and at the nut of it was this unexplained apparent rise in autism prevalence. As a science journalist, I had the gut feeling that something had gone wrong with our understanding of autism history somewhere, so I set out to find it. That’s how I decided to write NeuroTribes.

AUK:  Were you surprised to win the Samuel Johnson Prize in 2015 and be propelled into the position of Autism Guru and advocate for Autistic Rights?

Steve Silberman: Heh. Yes, I was completely surprised to win the Samuel Johnson Prize. All the finalists were asked to make videos about their books, so you had footage of Emma Sky, author of The Unravelling, running heroically through flaming landscapes in Iraq, and films of Robert MacFarlane, author of an exquisitely written book called Landmarks, striding through the forest, looking like a handsome ginger Thoreau – and then you had chubby me, babbling away in a bookstore in San Francisco that turned out to be amazingly noisy because mums with screaming babies kept coming in, ignoring the “QUIET PLEASE – FILMING IN PROGRESS” sign. I figured my only prize would be a trip to London – which I would have been very grateful for! – and that would be the end of that. But when it became clear at the ceremony that NeuroTribes was the winner, I wept. The previous winner, Helen Macdonald, author of the beautiful memoir H is for Hawk, sweetly whispered in my ear, “You’re going to have a very busy year.” I wish my father Donald, an English professor who taught Samuel Johnson’s work, had lived long enough to see me win the prize.

I don’t consider myself an “Autism Guru” at all. I’m an autism scholar and historian. That said, I’ve made a few friends over the years who I consider my personal autistic gurus – people who really helped me understand how autism feels from the inside. I’ve also met other neurotypical allies who helped me understand the trajectory of the research across the decades. You know who you are out there, and I’m in your debt.

Becoming an ally myself just felt like a natural outgrowth of my research. Back in 2001, when I wrote “The Geek Syndrome,” I was still looking at autism primarily through the lens of the medical model, but even then I started to ask questions about some of the things that clinicians were telling me. Then when I took the full plunge into history for NeuroTribes – which made clear to me how much suffering had been inflicted on autistic people over the decades because of bogus theories of autism causation or very limited ideas of what people on the spectrum are capable of — adopting the perspective of the social model of disability felt like the morally right thing to do. The fact that I’m gay, and that my identity had been considered a psychological disorder by the medical establishment up until the 1970s when I was in high school, undoubtedly hastened this evolution in me.

AUK: You recently took part in the filming of the Chris Packham Documentary ‘Aspergers and Me’ for the BBC. What was your favourite memory of the time you spent with Chris?

Steve Silberman: Let me just say up front, Chris is the coolest – brilliant, unpretentious, cheeky, gorgeous, observant, a font of knowledge about the natural world, and truly hip. We had a marvellous afternoon driving around Silicon Valley, talking about autism and neurodiversity when the camera was on, and about seeing punk bands back in day and other fun stuff when the camera was off. But one of my favourite things happened after we stopped filming, when we stopped for lunch.

Suddenly, right in front of our table, a robin fell out of the sky, hit the sidewalk hard, and started thrashing around. Normally I might such a thing happen and think, “Oh, how sad,” and just try to forget it, feeling that there was no way I could help. But Chris immediately jumped to his feet, cradled the robin, groomed it confidently, and moved it from the sidewalk to a patch of grass where it would be safe. As he did these things, a crowd of girls walking home from school collected around Chris on the sidewalk, astonished. It was as if Superman had appeared just in the nick of time to save the bird. It was a beautiful thing to witness.

AUK: What does the word “disability” mean to you, and do you consider autism to be a disability?

Steve Silberman: One of the best definitions of the word “disability” is that it describes a mismatch between the amount of support a person needs from their environment and the environment they’re in. If you live in a wheelchair in a town with no kerb cuts in the sidewalk, no accessible public transit, and no accessible classrooms, bathrooms, stores, and restaurants, you’re highly disabled — but if your town has these things, you can get around quite well. In other words, disability is not located solely in the person; it describes a relationship between the person and society.

But it’s important to acknowledge that all forms of disability cannot be eliminated, even through remediation. Autism is certainly a disability in neurotypical society. In autistic spaces like Autreat that I described in my book – where the environment is created by and designed for people with atypical neurologies – I got to see autistic people be much less stressed out, much less in edge-of-panic mode, just hanging out with other members of their tribe. These included non-verbal autistic people and those usually described as ”low functioning,” though I avoid the use of functioning labels myself. When autistic people are allowed to go with the flow and stim to their heart’s content – or even to rock and wail – without being judged by neurotypical observers, they’re functioning in a way that‘s natural to them. At the same time, however, my autistic friends tell me they would still have issues with executive functioning and anxiety, even in a highly supported environment.

Because society has tended to view autism as a psychiatric disorder, a distinctive aberration of modern times, or a mysterious plague, it’s still early in the development of accommodations for cognitive disabilities, whether it’s autism, dyslexia, or ADHD. I think autism is best understood as a relatively common cognitive disability, and most of the research devoted to ensuring success for autistic people, particularly in adulthood, is yet to be done.

AUK: What benefits do you think autistic and other neurodivergent people bring to the rest of society?

Steve Silberman;  People with autistic traits helped us get to the moon, built a free global amateur radio network that anticipated the Internet, predicted the existence of antimatter, and made us feel the exquisite beauty of Bach — and that’s just a few random examples from one category of neurodivergence that I happened to run across for my book. If you think of how many major cultural advancements have been made by people who were bipolar, schizotypal, or chronically depressed, you start to realise that neurodiversity is not just about the contributions of individual geniuses, but about the whole texture of human culture. How do we treat the people who are working with us, but who may not think like us, on the grand project of advancing human culture? That may be the essential question of the early 21st Century.

AUK: Can you tell us your favourite story about your hero and former teacher, poet Allen Ginsberg?

Steve Silberman: I have a lot of them, but here’s one I don’t think I’ve ever told in public before. Back in the 1980s, I spent a couple of days with Allen near San Jose in California. He had a round of TV interviews and book-signings scheduled during the day and a huge sold-out reading to do at night. We’d been running around all afternoon and I felt exhausted, so when we got back to his hotel room, I flopped down on his bed and groaned aloud. Allen – who was 31 years older than me and in his 60s by that point – looked down at me with a pitiful look and said, “Oh, are you gonna faint or something?” It was a little harsh, but he made his point and it stuck with me. Since then, I’ve tried not to drag around, feeling sorry for myself. There’s work to be done!

AUK: Do you have any plans to write further books about other areas of autism?

Steve Silberman: I don’t think so, though I’m sure I’ll write articles here and there. I made my contribution. Autistic people should be leading the conversation.

AUK: What, in your opinion, would be the single most effective change that society, professionals or parents/carers could make to improve the lives of autistic people?

Steve Silberman: To change the primary focus of research from “How can we prevent autism?” to “How can we help autistic people and their families lead happier, healthier, and more secure lives?”

AUK: In your opinion, how can parent/professional-led organisations best help with shifting the discourse away from cure talk and towards acceptance and inclusion of autistic people?

Steve Silberman: It has been my pleasure in the course of my travels for NeuroTribes to meet autistic people who have taken leadership positions in parent-professional groups like ASPEN in New Jersey and research organisations like Autistica in the UK. It’s just so obvious that autism organisations benefit from adults on the spectrum helping to set their agendas for the future. Who better knows what autistic people really need to improve the quality of their lives? The invisibility of autistic adults in previous eras has created a huge pool of untapped talent in the world of advocacy, and the autistic qualities of relentlessness and intense focus can come in very handy when you’re trying to effect social change. That’s the way to make your autism organisation more effective: hire autistics in policy-making positions, not just as token spokespeople. We’re long past the time when it’s OK for the societal conversation about autism to unfold behind the backs of autistic people.

 


From all of us here at Autistic UK, we would like to say a huge thank you to Steve Silberman for giving up some of his time to answer the questions we put to him. We very much appreciate your continuing work, and everything you have done for the Autistic Community. You have been one of our strongest and most steadfast allies, and a giant source of encouragement for so many of us.

 

 

Hans Asperger.

Read the full story here:

We understand this story is causing considerable debate, and also will cause a lot of strong emotions from within the community. That’s perfectly natural, and we hope the debate that ensues will be respectful and productive. 

For those who feel upset, hurt, angry or worried about this story, that’s absolutely understandable. We’re feeling that way too. And we’ll be here to support anyone who wishes to find others to talk to about this news.

 

 

 

we will publish a longer statement in due course.