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Mar 5 2024
Restrictive practice and autism in the inpatient setting

Restrictive practice refers to any intentional action take to restrict the movement or liberty of an individual (according to this presentation given for the NHS). The aim of restrictive practice is to reduce the risk of immediate harm to the person or those around them. It includes various forms of restraint or seclusion. It is clear, however, that rather than being a tool for use in crisis situations, it has become a means of behaviour management. We have seen from the report on restraint and seclusion in English schools (International Coalition Against Restraint and Seclusion [ICARS], 2023) that such techniques are used frequently in school settings, it is unsurprising that this issue is also prevalent in mental health settings. In the context of autism, this also raises questions over the abuse of power within inpatient settings.

What are the most common forms of restrictive practice?

According to a report by the Health and Social Care Committee (2021) for the House of Commons, the most common forms of restrictive practice are the following:

  • Physical Restraint– This includes “pinning” a person down or using mechanical restraints that physically restrict the movement of an individual.
  • Chemical Restraint– The use of sedatives and tranquilisers, including antipsychotics, to “calm” a person down.
  • Segregation or Seclusion– The use of isolation to keep the individual away from others, usually in “prison cell” like conditions.

Each of these types of restrictive practice come with a level of risk, and are supposed to be used as a “last resort” where their is a significant risk of harm to the individual or others.

What are the risks associated with these practices?

The above mentioned 2021 report indicates that one of the particular types of physical restraint being used is the “prone” restraint. According to the Care Quality Commission this involves holding an individual face down on a surface regardless of whether or not they have placed themselves in this position. One of the major risks associated with this type of physical restraint is a reduction in the individuals ability to breathe. It has been associated with a number of deaths, including that of Max Benson who died at the age of 13 after being restrained for 2 hours by teachers at his school.

With regard to chemical restraint, there is a risk of complication from the medications involved. Antipsychotics are often used, and these come with a risk of Neuroleptic Malignant Syndrome (NMS). Symptoms of NMS include: High fever, stiff muscles, autonomic dysfunction leading to excessive sweating, changes in blood pressure and excessive saliva production, and altered states of consciousness. NMS can and does take lives.

Segregation and seclusion comes with a risk of traumatisation, particularly where a person is isolated for extended periods of time, which many Autistic people in inpatient facilities are (according to the aforementioned 2021 report for the House of Commons).

Is restrictive practice being used too frequently?

Finding accurate statistics on the use of restraint and seclusion in inpatient settings is problematic due to inconsistent recording of such events (Out of Sight Report, for the CQC, 2020). Almost anyone who has been an inpatient will have experienced or witnessed restrictive practice. The frequency of such anecdotes leads me to believe that such practices are being used with relative frequency in the inpatient setting. Particularly concerning is the number of Autistic individuals who believe that restrictive practice is used more for the purpose of behavioural intervention or punishment rather than as a means of ensuring safety. Should this ultimately be found to be true, this will be deeply concerning when we consider the risk to life that we have just discussed.

Does restrictive practice help?

The general consensus is that such practices, when used on Autistic or learning disabled people, do not help. They become a frequent occurrence. They cause the person to become more dysregulated which in turn increases the likelihood that an individual will need to be restrained or secluded. Chitty (2020) found that when used within forensic service inpatient populations, restrictive practice was associated with increased distrust of staff and frustration with a controlling system. Neither of these feelings are conducive to a reduction in the use of restraint or seclusion.

Is there any legislation around the use of force in inpatient settings?

Yes. The Mental Health Units (Use of Force) Act 2018 has established a number of requirements in law for inpatient units using restraint. The act requires a high standard of record keeping for incidents of restraint. The law (named Seni’s law, after Olaseni Lewis who died as a victim of restraint) also requires that every measure be taken to de-escalate before force is used.

The problem is that a law is only as good as it’s enforcement. We know that many people still experience an overuse of restrictive practice, particularly Autistic people, and that record keeping is inconsistent at best. It is clear that better enforcement of this law is required, and for staff to be trained not just in the use of force; they also need to be trained in how to work with Autistic individuals.

Final Thoughts

Restrictive practice continues to be an underdiscussed and dangerous phenomenon that, in my opinion, is indicative of societal attitudes towards the neurologically different. Having been a vicitim of restrictive practice myself, I continue to argue that we need to work towards a world with zero restraint or seclusion. For more on my own experiences of chemical restraint, click here.

David Gray-Hammond 0 Comments
Mar 4 2024
A reflection for Weird Pride Day

Weird Pride Day is born of the desire to stand unashamed in the face of a world that seeks to minimise us. It should come as no surprise then that I, an Autistic, ADHD, and Schizophrenic man, find this appealing. Society has sought to contain people such as myself through medicalisation, institutionalisation, and erasure, for a long time. Whether it be containment in the socio-political sense, or in the very real sense, the world has done it’s best to alienate the weird. Today, then, is a day where we escape the shackles of such a world.

What is Weird Pride?

Like most contemporary forms of pride, weird pride is not born of a desire to be special, or more valuable than others. It is a refusal to be ashamed. It is the words we use to embrace our own experience and give ourselves permission to take up space. Put another way, weird pride is our attempt at a right to exist. The world has historically seen us as unpredictable, caging us like an animal that could tear through the masses if given the opportunity. We are dangerous, but not to the average person. We are a risk to the status quo. However, to admit this truth, the arbiters of normality would first have to admit that the world is designed to exclude many of us.

What does this day mean for us?

March 4th, Weird Pride Day, is the day when we fly our freak flags high. If Halloween is the day when the veil between the physical and spiritual world is thinnest; Weird Pride day is the day when the boundaries between perceived mundanity and a colourful truth become a bit blurrier. This is the day when we dismantle the normativity of a world that desires uniformity and assimilation rather than the rainbow of difference that exists. March 4th is a day to fly your freak flag high and without shame.

Where does Weird Pride get us?

Every time we embrace our own weirdness, we chip away at the bonds of normativity. Every March 4th brings us one day closer to a world where we no longer have to contain ourselves for fear of retribution. Weird Pride is one key to the many locks that hold us inside the stone chamber of the status quo. It’s a day when we can do justice to the many weird people who have lost their lives to normativity. It’s a day when we push back against normative violence.

How can you get involved in the Weird Pride movement?

You can start by visiting the Weird Pride Day website. You can also post on social media using the #WeirdPride abd #WeirdPrideDay tags. Do what feels natural to you. Be you, unashamedly. You can also support your fellow weirdo’s by amplifying their words and expressions on your platforms. Share and rejoice in the beauty of weirdness.

In case you haven’t seen it, here is a previous article I wrote on Weird Pride Day.

Illusttation of person sitting on a chair in front of a rainbow staircase. Text reads- Weird Pride day Just Be You And iif people don't like it, find new people.
David Gray-Hammond 0 Comments
Feb 28 2024
CAMHS & Parent Blame: The impact on the Autistic family

I have written extensively on the impact of Child and Adolescent Mental Health Services (CAMHS) failures on Autistic children and young people. I would be doing a disservice however if I did not talk about the wider reaching impact for the whole family unit. When our children suffer, we suffer. The injustice of services failing to uphold rights of our children can have a detrimental effect on our own wellbeing. However, it can be worse than simply being told “no”. In some cases (more than people care to admit) we face being blamed for our children’s suffering. This has become an entrenched issue in the UK and wider western society, and if left unaddressed it threatens to cause intense harm to Autistic people and their families.

Parent carer blame existed long before CAMHS

Parent carer blame has been an issue for most of the past century. Most famously it can be seen (with regards to autism) in the work of Bruno Bettleheim through the 1950’s and 1960’s with his concept of the “refrigerator mother”. Bettleheim posited that autism was caused by emotionally distant mothers with a detached parenting style. He further popularised this concept with his book The Empty Fortress which was published in 1967. Over the years such parent blame has shifted and changed as knowledge has grown, but it usually focused on mothers, and always engaged in developmentalism; by which it is suggested that there is a “typical” rate of development that all should be measured by. It is also suggested that development is located in the parental relationship (again sounding reminiscent of Bettleheims “refrigerator mother”). The words may have changed over the years, the effect remains the same.

The effect of neoliberalism on parenting

Neoliberalism is based in the idea that individuals should be self-reliant while contributing to wider society. This obviously has ramifications for the capitalist economic system that prioritises productivity over personal wellbeing. Neoliberalism suggests that while supports for our welfare may exist at the state level, individuals should be frugal in their use of them. It is the basis of exclusionary gate-keeping policies, and contributes heavily to parent carer blame. In a world that asks you to rely on yourself, asking for help is seen as a failure.

Understanding parent carer blame in professional services

Parent carer blame has become somewhat of an institutional practice (Clements & Aiello, 2021). It is centered in the belief that development is placed within the domain of parenting. It is also upheld by the neoliberal approach to parenting (Tabatabai, 2020). In this context, it involves the practice of denying supports for disabled young people and then criticising the parents or carers for any negative outcome. This is particularly concerning as it can lead to both implicit and explicit accusations of Fabricated or Induced Illness (FII) (Hollingworth et al, 2023). In short, parent carer blame has become a means of denying support and vilifying parents who oppose services failing to meet legal requirements.

How does CAMHS engage in parent carer blame?

Research suggests that strong parent-professional alliance is a predictor of better outcomes from therapeutic approaches (Kazdin & Blase, 2011). Despite this, CAMHS are well known for breaking the trust between parent’s and professionals by placing blame on parents for their child’s mental health concerns. This starts with smaller things such as referrals to parenting courses, and extends into safeguarding referrals and FII accusations. In particular, Jackson et al (2020) found that parents were made to wait for long periods of time for support. This feeds into parent carer blame where services are denied for long periods, and then parents are held responsible for the negative outcome.

What is the impact of CAMHS parent blame on parental mental health?

Jackson et al (2020) found a wide range of impacts on the mental health of mothers. While the study looked at mothers specifically, I believe it’s findings are applicable to all in a parental position. The study looked at accessing mental health services for their children, but is indicative of the parent carer blame that is rife in UK institution. Two of the primary outcomes were feeling alone and as though they were responsible for their child’s struggles. As you can imagine, this is not conducive to healthy parenting due to the impact on ones confidence and self-esteem.

The study also mentions the vicarious traumatisation of parents through fear of losing a child to suicide. Having a suicidal child is possibly one of the most terrifying experiences that a parent can experience, and yet services in the UK are failing to act on this in a timely manner. They go on to mention the breakdown in parent-professional relations with many parents feeling “rejected”. If we can not trust a service, how are we supposed to safely engage with them?

What does this mean for Autistic parents trying to engage CAMHS?

Autistic people live in a world of constant invalidation and rejection. Many of us have experienced traumatisation via poor professional attitudes from a young age. Parent carer blame then represents a thematic resurgence in the same attitudes and associated feelings that have been thrown at Autistic parents since childhood. When we are trying to integrate and create equality for disabled people, parent carer blame is the antithesis of support for this. In order to have Autistic people feel safe in this world, it’s not enough to simply provide mental health support, we need the whole family unit to feel safe to come forward, without fear of being held responsible for actions outside of their control.

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References

Clements, L., & Aiello, A. L. (2021). Institutionalising parent carer blame. The Experiences of Families with Disabled Children in Their Interactions with English Local Authority Children’s Services Departments. Cerebra. University of Leeds.

Hollingworth, D., Ferguson, L., Schaub, J., & Kempson-Byrne, S. (2023). Autism and Parental Blame: A Systematic Literature Review.

Jackson, L., Keville, S., & Ludlow, A. K. (2020). Mothers’ experiences of accessing mental health care for their child with an autism spectrum disorder. Journal of Child and Family Studies, 29, 534-545.

Kazdin, A. E., & Blase, S. L. (2011). Interventions and models of their delivery to reduce the burden of mental illness: Reply to commentaries. Perspectives on Psychological Science, 6(5), 507-510.

Tabatabai, A. (2020). Mother of a person: neoliberalism and narratives of parenting children with disabilities. Disability & Society, 35(1), 111-131.

David Gray-Hammond 0 Comments
Feb 19 2024
School and CAMHS failed me; This is what happened

There are two domains that come up time and time again in UK neurodiversity circles. The first is education, in particular the lack of appropriate Special Educational Needs and Disabilities (SEND) provision. With over half a million Education, Health, and Care Plans (EHCP’s) currently active as of January 2023 (UK Government, Accessed 2024) one might think that resources would be directed to this area, but no, they are not. The other domain is mental health, in particular Child and Adolescent Mental Health Services (CAMHS). There has been an ongoing campaign for over a year now. This includes a petition with over 200,000 signatures calling for action to be taken on the failure of CAMHS to support Autistic young people (also the topic of my most recent book). It seems as though nothing ever changes. A great deal of harm is done, and I intend to lay that out by talking about my own experiences.

Why are school and CAMHS such important topics for Autistic people?

I have previously written about the disturbingly high rates of suicide and suicidal ideation in Autistic young people. School and CAMHS play a role in this. Not only is school a place where we learn skills for adult life, it is a place where our neurodivergence is often identified. Harmful school environments and low-quality training in neurodiversity mean that many young people are going undiagnosed and eventually being represented in suicide statistics such as the 10% of suicides that were people with likely undiagnosed autism (Uni of Cambridge, 2022).

For those identified by the system, there is a great deal of exclusion from services such as CAMHS who often reject referrals of Autistic young people. This means that Autistic children are struggling through childhood and education, entering adulthood with unaddressed mental health needs, and at increased risk of poverty because of their experience of education (Tian & Ma, 2023). School and CAMHS set young people up for a life of struggle on multiple fronts.

How did school fail me as an Autistic person?

I was the weird kid. When other boys were off playing football, I was doing 5 dance classes a week at a relatively prestigious dance academy. I was bullied from the age of 6. Teachers would argue that the bullying was my own fault for being different. If I would just try to be more like the other boys, they said, I would be so much happier. It seemed that they were only interested in stamping out my individuality rather than nurturing my interests. Despite me being at odds with my peers. Despite my obvious differences. Despite the please of my mother. They failed to identify my neurodivergence. I was was doomed, it seemed, to struggle through school.

At the age of 10 I made my first suicide attempt. A GP would write letters trying to get me support and hold my school to account, but those pleas fell on the ears of ones who would rather not listen. I spent my entire time in the school system without any kind of learning support. I was also experiencing trauma outside of school that went unnoticed and unaddressed. It seemed that I was solely responsible for the outcome of my life, even when I was too young to truly understand the ramifications of that outcome. By age 15 I had enough and had what was described as a “nervous breakdown”. I now know it was Autistic shutdown secondary to burnout.

How did CAMHS fail me as an Autistic person?

CAMHS didn’t see me after my first suicide attempt, in fact they didn’t see me until several months after the “nervous breakdown” I had at age 15. By this point I had been having night terrors for years, waking nightmares where the world ceased to exist and was instead replaced by things generated by my mind. This was perhaps the first indication that something more than depression was going on, and yet no one identified those concerns. CAMHS were no help. After months of waiting, I got to see a psychiatrist for 5 minutes who discharged me for not wanting medication after 5 minutes of consultation. Through out my childhood, CAMHS had multiple opportunities to intervene and help, they chose not to. Again, it was down to me to be more “resilient”. It didn’t matter that the world was throwing punches at me. Services wanted me to be better at taking the punches.

What was the result of these failures?

I left school with too few GCSE’s to study my A-Levels. Despite being academically gifted, I could not cope with the pressure. I did catch up eventually and get into university, but I still struggled. In my third and final year of sixth-form college I began to hear voices and experience paranoia. Knowing that service would fail me again, and too scared to admit what was happening to me, I turned to cannabis and alcohol.

Over the next few years this would escalate into daily use of morphine, diazepam, and spice. Coupled with anything else I could get my hands on. My addiction got so severe that my friends and family planned my funeral while I was still alive. My life was over in the eyes of so many. The failures of institutions of my childhood had led me to become a drug-addicted, and (at the time) undiagnosed Schizophrenic. It took many years to reach a place of safety.

Why am I telling this story about school and CAMHS?

My story is not an isolated incident. Autistic children and young people are still being failed by these institutions. Education and mental health services are exacerbating these outcomes by failing to appropriately support us. So, in part, I am telling this story to hold them to account. I left school in 2006. These issues with education and CAMHS are still happening in 2024. 18 years on and I am still seeing my neurokin suffer. What upsets me the most is that our government knows this is happening, and has done nothing to fix the problem. So I am laying my pain onto the page in the hopes it inspires others to join this fight. To hold services accountable, and make a difference to the countless Autistic young people living in this country.

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David Gray-Hammond 0 Comments
Feb 12 2024
CAMHS in the words of it’s own staff

I have talked extensively of the failures of CAMHS (Child and Adolescent Mental Health Services) to support Autistic young people. There have been a great number of tragedies at the hands of a service that is not fit for purpose. I have explored my own experiences, parliamentary evidence, research, and the lived experiences of families involved with CAMHS. Sadly, I have also discussed inquests where young people have lost their lives. What I have not done yet is discuss the opinions of those staff working on the frontline of CAMHS. Now, thanks to a report from the Association of Child Psychotherapists (ACP), I intend to take a look at CAMHS in the context of the people working for it.

The Care Quality Commission has significant concerns

“Just this year, the Care Quality Commission (CQC) rated 39% (26 services) of specialist CAMHS as requiring improvement.”

ACP Report (2018)

The Care Quality Commission is the regulating body for services in the mental health sector. Their findings were very worrying. the CQC gives four ratings:

  • Outstanding
  • Good
  • Requires Improvement
  • Inadequate

Almost 40% were rate inadequate, meaning that they were not performing as they should, and that they have been given instruction on how to improve. As of the 2021 State of Care report, the CQC still had significant concerns over CAMHS. That was 3 years after those ratings.

It is clear from these reports that something is incredibly broken. Services are failing to meet need, and seem incapable of providing timely and effective support.

CAMHS own staff have concerns that need to be addressed

“61% said that the main NHS service they work in was facing downsizing”

ACP Report (2018)

This particular statistic is unsurprising, and I believe it is reflective of ongoing political discourse that is leaning towards the gradual privatisation of the NHS and restriction of public funding for NHS services. Services can not afford to expand to meet need. This is concerning because services are downsizing while demand is increasing. This means that staff have larger caseloads to manage on fewer resources.

“72% said that the threshold for access to services has increased in the past 5 years”

ACP Report (2018)

Again, this statistic is unsurprising. Thresholds for access to services will inevitably rise in the absence of resources. The UK operates a crisis-driven intervention model. The issue with such models is that waiting until a young person is in crisis results in caseloads that require more resources that simply don’t exist.

“33% described services as mostly inadequate or completely inadequate”

ACP Report (2018)

A third of surveyed CAMHS staff describe their own service as inadequate. To me, this is deeply concerning. Staff retention in inadequate services is going to be limited, resulting in inconsistency for young people. Not to mention that inadequate services may be doing more harm than good.

“64% reported negative changes in the number of practitioner posts, 62% in sessions
per client and 65% in the frequency of sessions”

ACP Report (2018)

This statistic tells me that staff numbers are reducing, alongside sessions with clients. This is happening at a time when CAMHS services are experiencing increasing demand. As demand increases, the service is at risk of sinking and taking young people with it.

“38% felt there had been a large negative change in staff morale”

ACP Report (2018)

I don’t think I need to tell you that staff with low morale are going to be less effective than staff who are enjoying their job. We want passionate and engaged staff, instead we experience a culture of defensive practice and professional toxicity.

Something that stands out to me in these statistics is that a lot of attention is being given to staff feelings, with less thought to the young people suffering at the hands of ineffective and uncaring services. The primary concern should always be those accessing CAMHS, and yet there is no direct mention of this in the statistics.

What does the Children’s Commissioner say about CAMHS?

According to the report for the 2021-22 period, the state of mental health services for children and young people is somewhat bleak.

“Of the 1.4 million children estimated to have a mental health disorder, less than half (48%)
received at least 1 contact with CYPMHS [Children and Young People’s Mental Health Services] and 34% received at least 2 contacts with CYPMHS.”

Children’s Commissioner (2023)

Less than 700,000 of the 1.4 million children with a mental health problem have had any contact with CAMHS. This is concerning, particularly for Autistic children and young people, 7 out of 10 of whom are estimated to have a mental health problem (Young Minds). We can infer from this that a large number of Autistic young people are not getting support for their mental health. The following statistic highlights this further.

“The percentage of children who had their referrals closed before treatment has increased for
the first time in years. In 2021-22, 32% of children who were referred did not receive treatment
compared to lower numbers in 2020-21 (24%)”

Children’s Commissioner (2023)

We know that a lot of these children are Autistic. Autistic young people are regularly turned away from services for no reason other than their neurocognitive style. Services claim that they are unable to support Autistic young people or that their mental health problems are a part of being Autistic. Not only is this factually wrong, it is like to contribute to the significantly elevated suicide risk among Autistic young people.

CAMHS professionals and regulatory bodies are losing faith in the system

We are at a critical point in the life of CAMHS as a service. No longer is it just Autistic people who have concerns. It’s not even the general CAMHS demographic. The professionals that populate CAMHS and the bodies that oversee it are themselves criticising the system. If the system is recognising it’s own failures and still not changing, we have reached a point where it’s existence is in jeopardy. It’s time for something to change before more lives are lost.

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Don’t forget to check out David’s new book on the failure of CAMHS to support Autistic young people!

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David Gray-Hammond 1 Comments
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