Autism is often conceptualised as a condition which nullifies a person’s ability to socialise. Because of this, Autistic people are often viewed as asocial and devoid of community. Despite this, the Autistic community is a rich and vibrant place with a sociality all of it’s own making. As I discuss in my book The New Normal, Autistic people can be better conceptualised as being AuSocial than asocial, with a culture, language, and social customs that are far too often ignored by those who wish to paint us in a tragic light.
In terms of community, we know that humans are inherently social beings, indicating that the belief that we lack sociality and community is one of the many ways that Autistic people are dehumanised by normative society; but just what is it about the Autistic community that is so vital for us?
Community and wellbeing
Jose, Ryan & Prior (2012) indicated that in adolescents, there was a positive relationship between social-connectedness and perceived wellbeing. Across the domains of family, school, peers, and neighbourhood, increased connectedness improved the wellbeing within those studied. It is clear that being part of a community is positive for many people, but this is where it is complicated for Autistic people. We are a minority group that often finds themselves at the periphery of communities.
Due to perceived asociality, we find ourselves ostracised within the above mentioned domains due to the stigma associated with being Autistic (Kasari & Sterling, 2013). This extends to family with increased stress levels among the parents of Autistic people correlating to social isolation for the same reasons (Dunn et al, 2019). Loneliness has become such a feature of Autistic lives that national charities like the National Autistic Society are publishing information pages specifically about loneliness.
Loneliness can have a significant impact on our mental health, the charity Mind mentions the increased risk of depressive or anxiety issues, even indicating a relationship between our finances and loneliness. Lee, Cardigan & Rhew (2020) found that increased loneliness during the COVID-19 pandemic has a causative relationship with increases in rates of depression among young adults. An interesting anecdote to mention here is the number of Autistic people who reported both a reduction in loneliness during this time as people connected virtually, and an increase in wellbeing that was as a result of the move to online socialisation.
Minority Stress
Minority stress is conceptualised as the increased social stress that minority groups experience through systematic exclusion and oppression within normative society (Botha & Frost, 2020). Issues such as difficulty accessing affirmative healthcare, social isolation, employment discrimination, and hate crime all contribute to minority stress (this is far from an exhaustive list). These individual factors come together to form a great deal of the negative and traumatic experiences that Autistic people have as a minority group.
What is interesting in the context of community is that Botha (2020) found that community-connectedness, that is, being a part of a community of supportive peers, actually decreased the effects of minority stress. This could be because of the knowledge of shared experience as well as increased self-advocacy, coupled with the ability to socialise AuSocially.
The Autistic Community
The Autistic community has provided a space for Autistic people to experience real community connectedness outside of deficit based models of autism. This is a space where we are less likely to experience discrimination based on our communication, and more likely to find shared experiences. Through knowledge exchange, we are able to push back against stigma and discrimination while learning how to advocate for our own rights.
I believe it is clear why this is so important to Autistic people who have historically had their narratives written for them by people with no lived experience of their identity. Giving Autistic people the power to form their own connections in their own time and space allows for the rewarding feeling of friendship and self-actualisation. Without this community, I believe our wellbeing would be significantly decreased. For me personally, it has been life saving, and has fundamentally changed the trajectory of my life.
This is why people exploring an Autistic identity need to be encouraged towards Autistic community spaces. It allows them to mitigate the minority stress that is so much more intense when we feel isolated from our peers. This is why it is important that members of the Autistic community are providing education around autism with schools and other professional environments. We are able to signpost Autistic young people towards helpful community spaces and mitigate the discrimination and social stress that they will inevitably experience.
Without this community, many of us wouldn’t make it. This is why it is important for us to make this a place that is accessible and welcoming to all, and not to gatekeep it from those who may have a harder time accessing it.
Psychiatric wards are a challenging environment for patients. Staff often forget that they work where a person is very often forced to live for an extended period of time. At the best of times, patients on psychiatric wards can feel very restricted, with some being monitored on a one-to-one basis 24 hours a day. It’s also no secret that a number of abuses have been brought to light in the last few years. In particular there was the abuse taking place at the Edenfield Centre, one of the UK’s largest psychiatric facilities.
As if abuse of patients’ rights is not already a significant enough issue, the NHS is now seeking to roll out something called Oxevision in all inpatient psychiatric facilities. Oxevision uses cameras and infrared detection to measure vital signs, monitor a patients movements with their room, and alert staff to anything unusual. It can even tell staff how long a patient has been in the toilet. More information from the people who designed this can be found here.
The first counterpoint to any resistance against this technology is likely to be that patients have to consent to monitoring. My response to this would be that consent only works if you can trust staff. Between the frequent stories of abuse, and the mature of the types of distress patients in psych wards experience, I believe consent is meaningless.
As an Autistic and Schizophrenic individual who has been a psychiatric inpatient, I can tell you that I would not trust staff to honour my consent or lack thereof. The use of oxevision has the potential to make patients feel incredibly unsafe in an environment that is meant to help them.
We also need to consider a patients rights. Both the Mental Health Act and Mental Capacity Act require staff to use the least restrictive option. The use of Oxevision restricts a patients human right to privacy, and thus, their liberty by allowing staff to intervene whenever they see fit. There is a fine line between patient safety and deprivation of liberty.
It is fundamentally wrong for patients to be under 24-hour surveillance in their private space. Patient liberty is already heavily restricted in psychiatric settings. How does the NHS justify this?
This is a flagrant abuse of patient rights, and as with many of the abuses in the psychiatric system, it’s being sold with a helpful smile.
The other day, I wrote a response to this article about how such irresponsible reporting puts ADHD and otherwise neurodivergent people at risk. Since then there has been growing concern about the ethics behind the article and associated BBC Panorama documentary.
The first thing to note is this article written by the NHS consultant front Leeds who disproved the diagnosis of the three private diagnosticians in question. In the article, the doctor details how the situation being reported on is created by a history of underdiagnosis coupled with a lack of ring-fence NHS funding for ADHD services.
They comment on the fact that the Panorama documentary risks bolestering the arguments of people who falsely believe ADHD is overdiagnosed or that it isn’t a real diagnosis. I believe this is a very measured response to what is a massive failure by the BBC to ensure they meet good journalism standards.
However, there is more to this situation than improper reporting. A whistle-blower on Twitter believes that the reporter in question may have used a fake account to gain access to a female only space regarding ADHD in order to create the documentary and associated article.
The tweet is by Emily Mckenize on Twitter and details some concerning behaviour from the reporter behind this scandal:
Let's expose the unethical journalistic practices that went into making #Panorama – ADHD Clinics Exposed. It appears that @RCars0n1 went undercover in a private group for ADHD women and then messaged people pretending he was doing a piece on #ADHD diagnoses "within the NHS". pic.twitter.com/makk2WblUg
In particular I would like to highlight the end of the thread:
Maybe the real exposé here is the BBC enabling a male reporter to pose as a woman and tell multiple lies in order to gain access to a space intended for women, many of whom are legally classed as vulnerable. #Panorama#ADHDPanorama#ADHD
This highlights a significant breach of boundaries and trust. This reporter appears to have posed as a woman to gain access to a female only space and then solicited information under false pretences. Is that not a flagrant disregard for journalistic ethics and integrity?
One thing is clear from this situation. The journalist, and perhaps the BBC themselves, had decided on the narrative they wanted to portray before actually investigating. They were willing to behave unethically and mislead vulnerable people in order to abuse a position of trust, just to sell this story.
They didn’t care what harm they were doing. They didn’t care that they were focusing on the wrong aspects of ADHD diagnoses. To make it worse, they have taken a space that felt safe for many vulnerable people and made them feel unsafe. This is not okay.
The BBC and the team at Panorama need to be held to account. The impact that this has had on a vulnerable community is unacceptable and highlights the ongoing ableism and uncontrolled privilege existing within the media. I would ask that everyone make a formal complaint to the BBC and request that they make reparations for the damage they have done.
Neurodivergent people deserve safety and support, not subterfuge and invalidation of their identity.
When we consider the world of inpatient psychiatric care, we often think about types of neurodiversity like schizophrenia and bipolar. While it is true that these individuals represent a considerable number of admissions, there is a darker side to admission to hospital. Detainment and admission is not solely the realm of traditional psychiatric “conditions”; Autistic people are being locked away for months or even years.
According to the National Autistic Society, as of January 2022 there were 1,185 Autistic people held within the inpatient psychiatric system. Of this, around 1 in 7 (165) were under 18 years of age. It’s not just Autistic adults being detained, it’s our children too. This represents a stark departure from the so-called schemes of “care in the community” that promised to empty asylums and create a community culture of caring for our most vulnerable.
Instead what has happened is the systematic incarceration of Autistic adults and young people for no other reason than not having the correct services in place to support them in their independence. This becomes even more concerning when you consider the current rate at which care home and inpatient units are experiencing scandals around the mistreatment and abuse of those they are supposed to care for.
Autistic people are being abused daily in these settings, despite evidence to suggest that inpatient units are inappropriate settings for Autistic people. What we are seeing is the systematic practice of locking away people because our society is unwilling and unable to give them meaningful support at home. To my mind this is against the Mental Capacity Act (2005), in particular principles 4 and 5 of the Code of Practice:
“An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests”
Principle 4, Mental Capacity Act Code of Practice
“Before the act is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person’s rights and freedom of action.”
Principle 5, Mental Capacity Act Code of Practice
Given that inpatient treatment does not improve outcomes for purely being Autistic, there is a significant and unresolved risk of abuse, and the overt removal of a person’s freedom, I would argue that both principles 4 and 5 have been failed. One might argue that the Mental Health Act (1983) should take precedence which allows for the detention of people who are at risk to themselves or others.
First I would bring your attention to this section of the Code of Practice:
“The MCA should be central to the approach professionals take to patients who lack capacity in all health and care settings (including psychiatric and general hospitals). The starting point should always be that the MCA should be applied wherever possible to individuals who lack capacity and are detained under the Act.”
Section 13.11, Mental Health Act Code of Practice
We have to consider what is being classed as risk, and whether the deprivation of a person’s liberty is necessary. I posit that in most cases, Autistic people remain in inpatient settings because services have no resources to appropriately address their dysregulation in the community.
An Autistic person’s freedom should not be decided by government funding.
To boot, the prinicples of the act itself state that professionals should use the:
“Least restrictive option and maximising independence”
In what world is indefinite detention in an institution the least restrictive option? Since when does detention be decided by community resources? This is a dangerous precedent to set, it opens up the entire neurodivergent community to facing detention.
When we consider the Royal College of Psychiatrists disturbing statistic that Autistic people are nine times more likely to die by suicide, and combine that with the fact that according to The Nuffield Trust there were 1,357 suicdes in 2019 amongst people who had been in contact with mental health services. Something is going very wrong, and I suspect that, in part, it is the number of Autistic people being detained wrongfully under The Mental Health Act.
It is clear that this situation is out of control. Autistic people should be supported to freely live their lives, not spend years locked in seclusion rooms suffering chemical and physical restraint as a daily practice. Sadly, until such time that our government supplies appropriate funding and resources to services, we are going to continue to witness the systemic mistreatment and killing of Autistic people.
We are Autistic, not monsters to be hidden away from society.
The International Coalition Against Restraint and Seclusion have just published their report into the use of restraint and seclusion in English schools and the results are terrifying. With Autistic children being the most likely to be the victims of inappropriate restrictive practice, it is clear that normative violence is taking far more overt forms than the micro-aggressions we are used to. For this reason, I am going to explore the findings of the report, using screen shots taken directly from the summary deck.
Ask this question to the layperson and you will receive different takes depending on the person’s career and privilege. I however feel it’s necessary to highlight the definition within the report, which itself is quoted from the Equality & Human Rights Commission 2019.
So, restraint is an act carried out with the purpose of restricting and individual’s movement, liberty and/or freedom to act independently.
This can be done in a number of ways. Most common is the use of holds and mechanical restraints that physically restrict movement of the body. One can also be chemically restrained. Most common in hospital inpatient settings, this involves administering sedative and/or tranquiliser drugs with the purpose of subduing a person into a state where they can no longer exhibit the behaviour that is being modified.
That is what restraint is. It is behaviour modification through the use of force. Where the more insidious behavioural interventions are not successful, the use of restraint gives a person no choice but to comply in order to have some semblance of liberty. Something I find most concerning is that legislation such as The Mental Health Act (1983) and The Mental Capacity Act (2005) incorporate the use of “least restrictive options” in their code of practice, and yet in the schools of England, children are being exposed to unnecessary and traumatic uses of physical restraint that are far from being “the last resort”.
Statistics found by the report
This report had a sample size of 560 respondents. The following are the statistics arising from the experiences of the participants.
81% of those experiencing restraint were Autistic
34% were ADHD
17% had a diagnoses of Sensory Processing Disorder
15% had anxiety
13% were PDA
13% had a Specific Learning Difficulty
47% of children were psychologically harmed by the use of restrictive practice.
43% were physically and psychologically harmed.
5% were physically harmed
2% of respondents disclosed harm of an unknown nature
3% did not note any harm
This means that of the respondents, 81% of children experiencing restraint were Autistic, and 97% of them experienced some kind of harm. This begins to raise questions around why Autistic people are over-represented in this sample, and why we feel it is okay to expose them to harm without good monitoring or reason.
On the topic of whether or not restraint was necessary in its use, we have the following statistics.
3% of respondents said that restraint was necessary
86% Said it was not necessary
8% were unsure if it was necessary
3% said it was sometimes necessary
Again, 97% of cases of restraint did not have a clear rationale or were a situation where restraint was not always necessary. 97% of the time, the hugely over-represented Autistic students were being exposed to restraint that could have been handled differently.
Restraint has a tendency of occurring in situations of dysregulation. The primary factor in Autistic dysregulation is an environment that does not meet the needs of the Autistic person. In the context of Children and Young People, this is very often a school environment that is under-resourced within it’s own SEN provision. In support of this, I give you this data from the ICARS report.
2% of respondents said that, Yes, their child’s needs were being met.
91% said that there child’s needs were not being met.
6% said their child’s needs were somewhat being met.
This means that in 98% of cases, the needs of the child were not being met appropriately enough for the parent/carer to give a solid “Yes” as a response. Where we have unmet needs, we have dysregulation, which in turn raises the risk of restrictive practices being used. Rather than adjust the environment to the child, the child is being forcibly coerced into “appropriate behaviour” through the deprivation of their physical liberty.
Where restraint is used on a child, caregivers should always be informed. This leads me onto the last couple of statistics I will share, these are perhaps the most troubling statistics in my opinion.
52% of respondents had not been notified about the use of restraint on their child.
20% were sometimes notified.
28% were notified.
72% of the time, schools could not be trusted to accurately report the use of restraint on children. This represents significant issues in accountability for schools and the scrutiny that they may face if all uses of restraint were made known to caregivers.
So perhaps you are wondering why parents don’t just withhold permission for the use of restraint?
6.3% of respondents were told that if they did not give permission, their child would not be afforded a place at the school. This is in direct conflict with a child’s right to education, and highlights a belief among staff that restraint is a necessary weapon of forced compliance.
Commentary
This statistics are horrifying. They represent a discourse around Autistic and learning disabled children that implies a lack of humanity, and the use of physical restraint to coerce them into normative standards of behaviour. I myself have written about neuroqueering education, and this report highlights to me the distinct importance of decentering normative values, and instead placing the rights of children centre place.
Children deserve space to work through difficult feelings and dysregulation without the fear of coming to physical harm. As you will see in the report, some of the restraint used has restricted children’s breathing and caused significant psychological harm. I am very much of the opinion the the use of restraint outside of preventing serious injury or death is child abuse. If it would be illegal to do it to an adult or romantic partner, then why is it okay to do to a child?
Children do not exist to serve pre-existing power structures and institutions. None of us were born to be boxed into idea’s of normality and acceptability. While I recognise that dysregulation can lead to a significant risk of harm, restraint needs to truly be a last resort. Where restraint has to be used, it needs to be documented in a way that allows for public scrutiny.
If having your use of restraint on public display makes you worry that people will not send their children to your school, the issue is not the child, it is the culture you have developed as an educational institute.
I have extensively explored my Autistic relationship with addiction thus far. I have considered and lamented the inappropriate treatment services, the suffering, and rejoiced in the moment that I came out the other side. I have listed numerous reasons that contributed to my active addiction, but what I have not done is really drive home the core point of why I kept coming back to drugs. I need you to know what gave me that drive to persevere with something that could have very well cost me my life.
I was undiagnosed Autistic for the first 26 years and 7 months of my life. I know that many, if not most of you, will understand the isolation and alienation that comes with such an existence. It seemed as though everywhere I turned, I was met with condemnation and assertions of my inadequacy. It extended far beyond bullying. It was more than abuse. The world taught me that who I was, the very essence of me, was only as valuable as my ability to assimilate into the culture of my local environments.
I had never wished to enter into the culture of normality. I felt that my lack of desire to fit in reduced me to a non-person. In a world where I could be anything, I would give anything to not be me. My fluid identity was more akin to vapour at this point than it was to any tangible form. Society constructs our sense of Self through our interactions with the environment. My environment rejected me like a gangrenous limb.
Perhaps then you can start to see where the twisted beauty of drugs seeped into my life. Not only could I alter my perception of the environment, but I could also alter the way those in my environment perceived me. Different drugs allowed me to put on and take off identities like clothes. They allowed me to explore the inner workings of my mind. I could manifest the Self in whatever way I saw fit.
Much like the sculptor trying to free the art from its marble prison, I was able to shed the constraints of human thought. Drugs allowed me to rewire my bodymind. I was no longer the necrotic manifestation of the universe, but instead the explorer. I was attempting to neuroqueer without even knowing it.
Sadly, this lifestyle was not sustainable. In order to explore the fluidity of one’s identity, it is necessary to be at some level of peace with your Self. At least in my experience. My attempt to neuroqueer my way to peace was fundamentally flawed. I wanted to subvert myself, not normative attitudes. I was trying to diverge into neurotypical performance.
Perhaps that is why I kept returning despite the dangers. Neurotypicality was a performance that I could never manage. What is it they say about try8ng the same thing over and over and the definition of insanity?
The irony in this story is that at almost seven years of tee total sobriety, I can now see that my journey through that time has actually made assimilation not just less possible; The thought is abhorrent to me. For my safety now, I steer clear of “recreational drug use”. My days as a self-confessed psychonaut are over, and quite honestly? I’m okay with that.
Some people falsely believe that addiction is an illness. Personally, I believe that given the right environmental ingredients, it becomes an inevitability. For me, addiction has been a necessary evil. It was necessary for me to deconstruct the Self that had been built on the rotten foundation of subjugation and childhood trauma. That deconstruction allowed me to make space for the infinite possibilities that lay within my neurology.
The world needs us to regularly deconstruct that which society has built. It’s often a violent and painful process, but necessary as we explore what it means to be neurodivergent. Perhaps more so, what it means to be human.
If I could ask one thing of you, dear reader, it is this; when you see a person suffering, do not offer them vague pity and generic platitudes. Offer them your hand to place a new foundation, upon which all can stand to explore the fluid nature of human identity.
TRIGGER WARNING: This article contains detailed discussion of harmful “cures”. It also mentions ABA, MMS, Chelation, and has in depth discussion around normative society and the murder of Autistic people.
For as long as I have been an advocate, many of my fellow Autistics have spoken out against cure culture. From Applied Behavioural Analysis (ABA) to Miracle Mineral Solution (MMS), there are myriad “treatments” that claim to purge the autism from autistic people. I could speak at length about the direct harm that these quack interventions inflict, but there is a deeper level of conversation to be had.
We are engaged, at present, in a culture war. On the one hand, we have Autistic culture which teaches us to be neurologically queer in every sense of the words. Be ourselves, connect with the self and express it in a way that honors our neurocognitice style. On the other hand, is cure culture.
Cure culture teaches us that who we are is broken, deficient, unrelentingly burdensome. Curists would have you believe that our lives are empty, broken, that we are trapped in a living death. Alive but somehow non-existent. The discourse around autism “cures” is dominated by non-autistic people who believe they are performing acts of mercy by pouring bleach solutions down our throats, and chelation drugs into our veins.
All of these things are a form of violence against a minority group that simply wants to live in peace. A minority group that intersects with many other oppressed demographics.
This is why Autistics get angry, this is why our lives revolve around our Autistic identity. Not only do we have to be Autistic in a world that desires normativity, we have to justify why we shouldn’t be tortured and murdered by people that are often (incorrectly) described as “well-meaning”. We constantly have to justify our existence. We are begging to be allowed to live while the world at large seeks to destroy us.
And yes, my Autistic self is defined by that which they seek to remove. Remove the autism, and you remove the person. Autism doesn’t even exist, only the Autistic-self exists. I am Autistic, not a person with a fucking carry-on bag where I store my quirks.
Do you want to know why pretty much every Autistic person you meet is at some level of burnout? It’s because we are dealing with this bullshit every second, of every minute. Every hour, of every day. By their nature, our lives require us to educate people on why we should be allowed to carry on existing. Have you tried to every account while teaching literally everyone you meet why being Autistic is not something to be grieved and/or corrected? It’s exhausting.
This is the culture war that we are fighting. We have no choice but to join the frontlines. We have to raise our voices above those who would speak over us.
After all, isn’t the whole point to leave a better world for our progeny?
This article was co-authored by David Gray-Hammond and Tanya Adkin
Trigger Warning:This article contains strong language and discussions of fabricated or induced illness, ableism, discrimination, bigotry, child abuse, medical abuse, systemic abuse, institutionalised bullying.
Fabricated or Induced Illness (FII) is defined by a set of “alerting signs”, written in guidance produced by the Royal College of Paediatrics. From the horses mouth itself-
“FII is a clinical situation in which a child is, or is very likely to be, harmed due to parent(s) behaviour and action, carried out in order to convince doctors that the child’s state of physical and/or mental health and neurodevelopment is impaired (or more impaired than is actually the case). FII results in physical and emotional abuse and neglect, as a result of parental actions, behaviours or beliefs and from doctors’ responses to these. The parent does not necessarily intend to deceive, and their motivations may not be initially evident.”
RCPCH Guidance, 2009 (updated 2021)
Parent blame and insinuations of FII are becoming common place, and this is where it gets interesting. Let’s talk about what isn’t FII. It isn’t Munchausen’s Syndrome by Proxy, and it isn’t Factitious Disorder Imposed Upon Another (actual mental health diagnoses). It isn’t a diagnosis, there is no diagnostic criteria, it doesn’t appear in any diagnostic manual; in fact there is no evidence to support the need for FII to even exist as a form of child abuse. Yet as advocates and professionals working with neurodivergent children and their families, this is a daily occurrence for us.
FII was created by the Royal College of Paediatrics. There own guidance states that-
Literature in this field recognises that there is a gap within the existing evidence-base surrounding the incidence and prevalence of PP [Perplexing Presentations] and FII. We acknowledge that there is a lack of data in this field, in particular for perplexing presentations, and the exact incidence and prevalence is therefore unknown.
RCPCH guidance, 2009 (Updated 2021)
This exists despite the fact that in the past eight years, there have been no deaths involving children where FII is even mentioned, except for two cases, one by heart failure (from a pre-existing condition) and one by suicide (Bilson, 2021), it’s probably a fair assumption to say that it was likely caused by a failure to accommodate the child’s needs. Had professionals spent their time investigating these children’s needs as opposed using parent blame as a way to alleviate them from their duty of care, these children may very well be alive today.
What are professionals looking for when they suspect FII?
Not all of the “alerting signs” are relevant to Autistic children, but in particular the following are quite concerning-
In the child
• Reported physical, psychological or behavioural symptoms and signs not observed independently in their reported context
• Unexplained impairment of child’s daily life, including school attendance, aids, social isolation.
RCPCH Guidance, 2009 (updated 2021)
In the parent
• Parents’ insistence on continued investigations instead of focusing on symptom alleviation when reported symptoms and signs not explained by any known medical condition in the child.
• Inappropriately seeking multiple medical opinions.
• Child repeatedly not brought to some appointments, often due to cancellations.
• Not able to accept reassurance or recommended management, and insistence on more, clinically unwarranted, investigations, referrals, continuation of, or new treatments (sometimes based on internet searches).
Not letting the child be seen on their own
• Talking for the child / child repeatedly referring or deferring to the parent.
RCPCH, 2009 (updated 2021)
If you know anything about the Autistic experience, you will know exactly why the above specifically targets Autistic children and their parents (who are often Autistic themselves). Where does this consider masking? Where is the consideration for situational mutism, Autistic burnout, extreme anxiety (often experienced by Autistic children). This is not withstanding the fact that most “professionals” have not even heard of Autistic burnout let alone have more than a generic and stereotypical understanding of Autistic people that is based on outdated and largely debunked theories.
It gets worse.
The next instalment in this shitshow of a pamphlet (that is directly responsible for the removal of scores of children from their families, and the untold trauma that comes with such things), sounds like it was directly quoted from a right-wing news channel-
Parents who struggle with the management of their child may seek an inappropriate mental health diagnostic justification in the child such as Attention Deficit Hyperactivity Disorder (ADHD) or Autism Spectrum Disorder (ASD).
Material gain includes financial support for care of the child, improved housing, holidays, assisted mobility and preferential car parking.
RCPCH guidance, 2009 (updated 2021)
I bet these were the type of people who were having wine and cheese parties by accident in the middle of a pandemic.
Now, we’re not going to waste our spoons on explaining why this is utter ableist, classist, racist horseshit (really all the forms of bigotry you can think of). What we will say, is that for anyone who has filled in a DLA form, submitted the plethora of evidence needed to justify a childs disability, for what is effectively a small amount of pocket money compared to the actual cost of caring for a disabled child. Preferential parking and preferred housing? Clearly these people are so far removed from any semblance of qualification to discuss or have any impact on the lives of neurodivergent people, or disabled people in general, that they buy into the propaganda peddled that disadvantaged people are trying to steal resources.
Back to our broader discussion.
Here’s another golden nugget of guidance-
“The second motivation is based on the parent’s erroneous beliefs, extreme concern and anxiety about their child’s health (eg nutrition, allergies, treatments). This can include a mistaken belief that their child needs additional support at school and an Education Health and Care Plan (EHCP).”
RCPCH guidance, 2009 (updated 2021)
Big issue with this one. Schools are effectively financially penalised for seeking further SEN support for children. It’s common place for schools to have to fund the first £6000 of an EHCP. £6000 that doesn’t actually exist. Not withstanding the fact that school teachers are not qualified to decide whether or not a child is “fine in school”. If this was the case, why do we even require needs assessments in the first place?
Then there is the level of paperwork that is required to support a child with significant SEN, and the staff hours that takes. All of this results in schools routinely downplaying children’s needs and presentations, not knowing what they are looking for, and assuming that if little Johnny isn’t smashing up the classroom, he must be fine and there are no needs to meet.
Medical professionals are relying on these reports of “fine in school” from underqualified mainstream education professionals to then decide that it must be FII, that the parents are making it up… and the cycle continues.
So, the pièce de résistance in this spectacle-
“Autism Spectrum Disorder (ASD) in the parent may underpin fixed beliefs about the child’s ill-health.”
RCPCH guidance, 2009 (update 2021)
So there you have it people, if you are Autistic, if you seek an EHCP, if you seek specialist advice (because the NHS is woefully underfunded, and uneducated on Autistic experience), if your child masks, if you seek a private diagnosis, if you challenge professionals, if your child is situationally mute, and (finally) if you are poor. You are ticking a lot of boxes as a child abuser; as profiled by the RCPCH guidelines on Fabricated or Induced Illness.
How does this contribute to institutionalised parent/carer blame?
Institutionalised parent/carer blame was researched by Professor of Law, Luke Clements (2021). The following is a quote regarding the research report.
“I am very concerned to hear of the continued problems with the way many Children’s Services Departments in England are treating parents caring for disabled children: a problem that was highlighted in a Disability Law Service report last year. The current report points to defective Department for Education guidance as a root cause of this problem, which is leading to parents being blamed when they ask for care for their disabled children, instead of receiving the help and support they deserve. I call upon the Education Secretary to address this issue as a matter of urgency.”
Rt. Hon. Sir Edward Davey, MP, Patron of the Disability Law Service, 2021
The reports key messages were as follows-
“National and local social care policies in England create a default position for those assessing disabled children, that assumes parental failings. This approach locates the problems associated with a child’s impairment in the family.
The national guidance that directs the process by which disabled children are assessed by English Children’s Services Departments (‘Working Together 2018’) is not fit for purpose and arguably unlawful. Its focus is on safeguarding children from parental neglect / abuse and it fails to address the distinct assessment and support needs of disabled children for whom there is no evidence of neglect or abuse.
Unlike the national guidance concerning the assessment of disabled adults, ‘Working Together 2018’ contains no requirement that those assessing the needs of disabled children have any disability related expertise, skills or experience.”
Luke Clements, 2021
We can then see how the rhetoric of parent/carer blame is perpetuated. We have education, health, and social care, working symbiotically to impart accusations of FII onto parents and carers of disabled children, absolving themselves of responsibility for that child’s wellbeing.
If we were cynical, we could comment on how this has been beautifully engineered for one sole purpose; TO SAVE MONEY. If there are no needs identified, then there is no responsibility for education, health, or social care to meet those needs.
If we intimidate and gaslight parents and carers enough, they may well stop advocating for their child’s needs. Is this the social care equivalent of off-rolling? Where schools and local authorities threaten parents with social care referrals and fines if their child does not attend school, or offer them the alternative of home education, absolving them of any legal (and financial) obligations for the child’s education.
All of the above heavily contributes to Autistic suffering by using these convoluted systems to deny access to much needed support and accommodations. It’s an inside joke amongst Autistic parents and carers that they are waiting for a FII referral.
“One whiff of neuro- and they’ll have you for FII”
It’s all based in the ableist assumption that Autistic people are incompetent and incapable child-abusers. Maybe the commonly held (and debunked) theory that we don’t have empathy contributes to this?
Seeking support for your disabled child has effectively been criminalised.
What can be done about it?
Here’s the tricky part, because these accusations, and infringements on private family life grind us down. Really the only thing that we can do about it is to tick every box that’s listed as an “alerting sign”.
Request an education, health, and care needs assessment from your local authority.
Be prepared to appeal every unlawful decision.
Seek professional advocacy.
Keep all communication in written format.
Keep everything as evidence.
Get very good at filing, very quick.
If you are able to access private specialist assessment, do it.
If you are being accused of FII, consider commissioning an independent social care assessment.
Expect parent/carer blame.
Do not take it personally.
Do not give up.
We realise there is cost involved in the above advice, and it’s not cheap. Unfortunately, it’s just another fine example of how policies and systems are designed to penalise poor and disabled people. There are a few things you can do if you are on a low income though.
Learn as much as you can! The fight for your children’s right’s and your own never goes away, the sad fact is you will always be battling to get what your child needs and is legally entitled to, you just get better at it and it becomes less overwhelming over time.
Evidence– You can submit subject access requests to schools, local authorities, doctors etc. This should give you evidence of your child’s difficulties and what has been done to meet their needs.
Legal Aid – If you are a low-income family, you may be able to access legal help to appeal local authority decisions regarding EHCP’s. Legal help will also fund independent reports, usually Educational Psychology, Speech and Language and Occupational Therapy, I have known them fund independent Social Care reports before however it is not common place and you will have to put together a good argument as to why it is necessary from the perspective of an EHCP. You can access legal aid information here.
Make use of free resources – IPSEA have a range of templates for all things EHCP related and a free helpline although, it can be difficult to secure a spot. Look for free Q&A’s on Facebook. Scour the files section of face book groups.
Finally, access the Autistic community online, many of us have been down this well-trodden path before and can give some really sound advice. Many of us are professionals working within this field.
It’s not always called FII, mostly it is implied rather than explicitly said. The default position is always that there is a fault with the parent/carer. Especially if you are Autistic.
Bibliography
Bilson, A. (2021) Education Magazine – Episode 6 – Fabricated or Induced Illness. Sinclaires Law. YouTube.
Clements, L (2021) Institutionalising parent/carer blame. Cerebra.
Davey, E (2021) Institutionalising parent/carer blame. Cerebra.
RCPCH guidance (2009; Updated 2021) Perplexing Presentations (PP) / Fabricated or Induced Illness (FII) in Children. RCPCH. https://childprotection.rcpch.ac.uk
Edit to add disclaimer: Despite Simon Baron-Cohen telling us that there will be a police presence, A member of the protest team has since spoken to Cambridge Police and confirmed that no police presence is booked for the protest, although they may now send one or two officers to make sure everything is alright. In our opinion, Baron-Cohen told this lie in a direct attempt to try and stop the protest from happening. Please do still read the article as we believe this lie makes the content even more important.
This article was co-written by members of the Boycott Spectrum 10k team; David Gray-Hammond, Tanya Adkin and Bobbi Elman
Trigger warning: This article contains discussion of violence by law enforcement professionals, and discussion of systemic trauma caused by the criminal justice system.
Anyone who has followed the Boycott Spectrum 10k campaign will be aware that we are holding a peaceful protest outside the Autism Research Centre on the 29th October 2021, in Cambridge. This is the workplace of Simon Baron-Cohen, and the main research centre where the Spectrum 10k study will be housed. For more information on why we are protesting, please see our collective joint statement here, and another article discussing the study here.
Since it has now been confirmed by Simon Baron-Cohen that they have opted for a police presence on the day of the protest, we felt it necessary to have a discussion about why this is problematic, and the recent stories of police brutality against Autistic people. This is not to say that people will be at risk at the protest, this is a peaceful protest, and the whole event will be livestreamed, but police brutality is a very real issue that we feel someone like Simon Baron-Cohen should be, and probably is, aware of.
In fact, he said it himself.
Text reads “Autistic people are vulnerable to being misunderstood and to ending up in the criminal justice system, accused of crimes when they have had no criminal intent. It is vital that they have well-informed advocates and legal advice and that the police and the courts are well trained to make reasonable adjustments for an Autistic defendant. Autistic people deserve proper support, especially when they make mistakes, given their disability. Professor Simon Baron-Cohen, Trinity College, Cambridge, President of Internatiibal Society for Autism Research”
We all know the stories from America. Police brutality is well documented in the States.
Unfortunately, due to the extreme nature of the violence and discrimination against minority groups in the US, and the voyeuristic nature of the UK media, what is happening on our own soil often goes unreported. One might understand this, when you consider that police in the US are literally killing innocent minorities. However, police brutality still exists in the UK, and Autistic and otherwise disabled people have often been on the receiving end.
“At least we’re not being shot”
This is a response often heard from people speaking from a place of privilege. It is also a response from those of us who have been so gaslit and bullied that we are willing to accept a certain level of mistreatment as normal, and be grateful for it. For example, Autistic children in mainstream schools are always “coping”. It’s considered acceptable to be treading water, despite the fact that one day we will run out of stamina and begin to drown.
In fact, our children are often victims of police brutality, in the very schools that claim to keep them safe.
Said police officer threatened to kick the boy, and dragged him along the ground, before turning to another child and saying “you’re next”. This didn’t happen in the US, this happened in Merseyside, UK. And the courts? After convicting the police officer of assault, merely fined him.
“The IOPC said PC Kemp attempted to handcuff the teenager, but when this was unsuccessful, he used CS spray less than a metre from her face. “Within seconds he started using his baton and then struck her several times,” it said.”
The stories above are just three very recent examples of police brutality against DISABLED CHILDREN. These are the ones that are privleged enough to have formal recognition of their neurodivergence. These are the ones who were lucky enough not to be institutionalised. What about the people labelled as “naughty”, “aggressive”, “feral”, “defiant”. What about those mislabelled mentally ill? If we are left unrecognised (read more here) and with these labels for long enough, we can develop mental health conditions. It’s inevitable, you can read more about this here.
What about those at the intersection of multiple marginalisation?
It’s well known that Autistic people are more likely to be gender non-conforming, there is a significant overlap between the Autistic community and the LGBTQIA+ community. It’s also known that very few of us fit the white, male, cis, heterosexual, middle class stereotype that the DSM-V criteria are based on, and what has been perceived as accepted for decades. In fact there are three of us writing this article right now and we can’t think of one Autistic person between us that fits this stereotype. Contrary to popular belief we have very wide reach and pretty busy Autistic social lives.
There are multiply disabled Autistics, non-speaking Autistics, Autistic people practicing a wide range of religions, or no religion at all. Like every human, we are everywhere, just like everyone else, we just have a different neurology to those with the dominant neurotype.
When we consider the different intersections in the Autistic community, there is one very significant intersection that we need to talk about with regard to police brutality. We need to consider how this impacts Autistic people of colour. It is widely publicised, the insidious prejudice ingrained into the world institutions and society itself.
Existing on this intersection places Autistic people of colour firmly near the top of the list when it comes to risk of police brutality.
“The police need to know that a Black person stopped by them for whatever reason, already has it in their head that they may not make it out from this stop alive. So nervousness, lack of eye contact, not reading body language and facial expression and all the other signs of what could be a condition like autism, could simply be a neurotypical person’s terror that they may never see their family again. Now imagine that same scenario in the head of someone who already has communication difficulties? Devastating.”
Of course, police brutality doesn’t always look like physical violence. Sometimes it is the systemic violence that unfairly incarcerates Black Autistic individuals. This was made obvious by the case of Osime Brown, A Black Autistic teenager, unfairly convicted and jailed, for a crime he didn’t commit, under the discriminatory joint enterprise law. Not only was he imprisoned, he was scheduled for deportation. It took a great deal of campaigning and protesting to have Osime freed and his deportation cancelled.
“Black people statistically struggle to gain access to assessments let alone diagnosis. Instead of getting the academic and social support he needed then, Osime, like many of us, was wrongly seen by his teachers as troublesome, stubborn and stand offish. Covering his ears due to sensory overwhelm was seen as rudeness. Meltdowns due to sheer frustration at not being able to communicate his needs was seen as bad behaviour…
…As a society we need to unlearn our biases, and develop better ways to support Black and neurodivergent people.”
Finally, let us consider the research surrounding Autistic people and their experiences with the police.
Research tells us that natural Autistic expressions of self increase the likelihood of a person encountering the criminal justice system at some point in their life (Tint et al; 2017).
Research also tells us that Simon Baron-Cohen has been espousing harmful views regarding Autistic people and criminality since at least the 1980’s, claiming that Autism is a risk factor for violent crime and terrorism (Baron-Cohen, S; 1988). perhaps now it is easy to see why he feels it necessary to intimidate us with systemic aggression. This is a man who has believed that our existence is dangerous for decades.
Simon Baron-Cohen knows exactly what he is doing by inviting the police to a peaceful protest, led by Autistic people (whom he professes to serve the interests of?) trying to defend their right to exist. He is hellbent on perpetuating the myth that we are violent, dysfunctional criminals. This is dehumanising. Autistic people are most likely to be victims (for a wider discussion of this, see Aucademy’s video here), not perpetrators.
Not only is this evidence of Baron-Cohens disdain for Autistic people, but also a prime example of his privilege. He’s so far removed from the daily lived experience of his “research subjects” that he genuinely thinks this is an appropriate response, does he read any research beyond his own self-serving and incredibly biased theories, that Autistic people disprove by merely existing?
This is all-the-more reason to attend this protest, we need to show in voice and number that we will not stand for the discrimination and prejudice that so called “autism researchers” continue to pour upon us, infecting every aspect of our daily lives.
Simon, just because you keep repeating something doesn’t make it true.
Sincerely,
Boycott Spectrum 10k Team
For more information on the protest, please see the event listing on Facebook here.
Tanya Adkin (she/her)
As a late identified Autistic/ADHD adult, a parent to two children with multiple neurodivergence, and a professional working within the voluntary sector from a young age, I have unique insight from all perspectives
I have worked within the voluntary sector, starting within the disabled children’s service, progressing on to mental health, healthcare funding, youth services, domestic abuse, and much more.
For the last six years, I have developed a specific interest both personally and professionally in special educational needs and disabilities, particularly around neurodivergence and the challenges faced by families when trying to access support.
I am dedicating to educating in neurodivergent experience in order to help families thrive by providing insight, reframing, and perspective in an accessible and personable way
My work includes specialist consultation and direct work with Autistic CYP and their families that others describe as “complex” and “difficult to engage”, ranging from those experiencing psychosis, addiction to high risk Children Vulnerable to Exploitation, County lines and Sexual exploitation.
I work as a specialist alongside social workers ranging from assessing capacity, neurodivergent parenting, disabled children and child protection.
tanyaadkin.co.uk
Bobbi Elman (she/her)
Bobbi is an Autistic mother of two Neurodivergent young adults. Bobbi and her children all have hypermobile EDS with many of the conditions that accompany it, like PoTS. High anxiety (exposure anxiety). Bobbi is a University of Birmingham graduate with a degree in SEN children Autism and has worked specifically with Autistic children/young people for over 19 years and believe in low arousal, child/person-centred approach. Bobbi has over eight years of experience working as a high-level specialised Autism one-to-one TA and experience working on a LA Autism Advisory team, which included key work.
Bobbi does not support ABA/PBS. (Applied Behaviour Analysis and Positive Behaviour Support).Bobbi continues to deliver training to staff and school, and will happily deliver training toanyone who works with or has contact with an Autistic child or adult on the Autistic experience. Bobbi is available for consultancy, advocacy, and training.
autismadvocate.co.uk
Bibliography
Aucademy (2021) Autistic, gender, & sexuality diversity – growing list of resources. aucademy.co.uk
Aucademy (2021) Autistics respond to media reporting of violence & victimisation by neurodivergent people Aug 2021. Aucademy, youtube.com
Baron-Cohen, S. (1988). An assessment of violence in a young man with Asperger’s Syndrome. Journal of Child Psychology and Psychiatry and Allied Disciplines, 29(3), 351–360.
Boycott Spectrum 10k Team (2021) Collective joint statement from Autistic people on Spectrum 10k. Emergent Divergence, emergentdivergence.com
Dalmayne, E. (2020) Fighting police abuse and racism. workersliberty.org
Dalmayne, E. (2020) Deporting An Autistic Black Man Exposes This Government’s Hypocrisy On Racism. Huffington Post, huffingtonpost.co.uk
Fallon, C. (2021) Call for police to get mandatory neurodiversity training after officer assaulted young autistic boy in school. Channel 4
Gray-Hammond, D. and Adkin, T. (2021) Creating Autistic suffering: Failures in identification. Emergent Divergence, emergentdivergence.com
Gray-Hammond, D. and Adkin, T. (2021) Creating Autistic suffering: In the beginning there was trauma. Emergent Divergence, emergentdivergence.com
Powell, J. (2021) Mum slams school as autistic son, 12, handcuffed by police on first day of term. The Mirror
The Guardian (2021) Met police officer dismissed for hitting vulnerable girl ‘more than 30 times’ with baton
Tint, A., Palucka, A. M., Bradley, E., Weiss, J. A., & Lunsky, Y. (2017). Correlates of police involvement among adolescents and adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 47(9), 2639-2647.
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