Search for:
The UK government knows CAMHS is failing Autistic children and they still aren’t fixing it

As you may know by now, there is an ongoing campaign to get CAMHS to open up their doors to Autistic service users. CAMHS have long been known for inappropriate support or complete lack of support when it comes to Autistic young people experiencing psychological distress. One might be forgiven for thinking that our UK government is going to change this, however it seems as though they have been aware of this issue for some time and still fail to fix it.

In particular, this article will highlight a document produced for the house of commons, looking into CAMHS treatment of Autistic young people. The document, written in 2014, details some worrying failures that are yet to be properly addressed. The document is titled “Written evidence submitted by the National Autistic Society (CMH0163)”. I am going to go through it and deconstruct it’s content.

We begin at the introduction.

Introduction

To begin with I would highlight the following:

“Our research found that whilst we know that one in 100 children has autism, more than seven in ten children with autism also have a co-occurring mental health problem. Many of these problems are entirely preventable, with the right support.”

Section 1.4 of document

It is clear that Autistic people experience a higher rate of mental health concerns than the general population to anyone that has contact with the Autistic community. There have been numerous suggestions for the cause of this, but my opinion is that trauma and lack of access to appropriate diagnostic and post-diagnostic support is a big driving factor.

Support is more than mental health services. To appropriately support Autistic people we need a holistic approach. Much of my work as an advocate is facilitating knowledge exchange with schools and other young people’s professionals on how to appropriately support Autistic young people. Mental health support is a vital lifeline, but would not be as necessary if a child’s needs were met within their environment.

I would next highlight this:

“Our researched showed that unfortunately, once these mental health problems develop,
children with autism aren’t getting the necessary support from CAMHS.”

Section 1.5 of document

One might argue that there is currently no meaningful mental health provision for Autistic children and young people, with learning disability services often being more focused on life skills training than addressing the fallout of a neuronormative society.

“When the right support is not provided at the right time, the impact on these vulnerable
children and their families can be devastating. The You Need To Know report investigated the
impact of mental health problems on children with autism and their families. Our research
found that:
– 71% of children with autism have at least one co-occurring mental health problem,
while 40% have two or more.
– 1 in every 10 children who access CAMHS has autism.
– Just one third (32%) of parents of children with autism believe that CAMHS have
improved their child’s mental health.
– 9 out of 10 parents told us that the mental health problems faced by their child had
had a negative impact on their own mental health (88%) and on the family as a whole
(91%).”

Section 1.6 of document

It is evident from these statistics that mental health is a big area of concern for families of Autistic individuals as well as the Autistic people themselves. Despite this, only 1 in 10 children accessing CAMHS is diagnosed Autistic. Would this figure be higher if Autistic people were given proper access to such services, and in which case, what does support for an Autistic person look like in CAMHS?

We also need to consider the harm that is done to the family unit when Autistic people are not given appropriate support. Parenting is difficult, navigating neurodivergent experiences is a steep learning curve. Throwing mental health issues into the mix risks the wellbeing of all involved and potential breakdown of the family unit. What are CAMHS doing to support the families of Autistic young people? If the family environment is struggling, the Autistic young person will also struggle.

“The You Need to Know report showed that 44% of parents found it difficult to get a first referral to CAMHS for their child. Once the referral is made, 25% waited over 18 week for their first appointment. This means that families are often left for several months to support their child with little or no mental health support.”

Section 2.2 of document

This highlights that even 9 years ago, parents of Autistic young people were raising concerns about accessing CAMHS and having success with referrals. Despite this, the government has made no meaningful difference in representing Autistic young people’s best interests.

“L received one appointment with CAMHS, the next appointment was cancelled. L’s case was
allocated to another staff member without the family being told. L had one more appointment
one month later, and the worker who saw L spoke to him only very briefly. Staff seemed to
have little experience or no understanding of autism.”

Section 2.4 of document

This is not an unusual story, the interviews I conducted highlighted many of these sorts of situations occurring within the walls of CAMHS units. While we now have the Oliver McGowan Mandatory Training (OMMT) for NHS staff, they still lack a great deal of the competence needed to effectively support Autistic people.

Lack of specialist support

“J had to wait 12 months before he was seen. By then he urgently needed support after he was involved in a severe incident at school. This lack of support resulted in J completely shutting down, and caused him to be out of education.”

Section 3.4 of document

Part of my day job is working as a young person’s mentor in alternative provision. Time and again I see young people excluded from education because the support they need to thrive does not exist. The National Autistic Society’s School Report 2021 found the 1 in 5 parents reported that their child had been informally excluded from educational settings. This means that 20% of families had Autistic young people unable to access the educational setting.

Services like CAMHS failing to support Autistic people cause these kinds of issues. When Autistic people don’t have a good sense of wellbeing, they are likely to struggle more accessing the world at large.

“J’s family say they have given up on CAMHS. They have twice reached crisis point, but during the last one, they didn’t try to get a referral back to CAMHS. By being denied the specialist help at a younger age, J’s mental health deteriorated rapidly, having a terrible and traumatic affect on him and the family especially his younger brother.”

Section 3.9 of document

Childhood is an important part of everyone’s life. Things going wrong in the earlier years of our life can have a huge impact on Autistic people’s lives. At this point I would highlight the research of Weir et al (2021) out of the University of Cambridge that found Autistic adolescents and adults were significantly more likely to report self-medication with recreational drugs, and the Royal College of Psychiatrists statistic that we are nine times more likely to die by suicide than our non-Autistic peers.

Statistics like this are a direct result of the lack of nurture and support offered to Autistic young people. Want to know why an Autistic person is struggling? Look at their childhood experiences and the way their own existence has been framed. When Autistic children are viewed as “too complex” to support, they internalise the belief that they are a burden.

“At 17 years old J is now classed as a looked after child. His family couldn’t cope anymore, and he has years of catching up to with his emotional development, his education and his all-round wellbeing.”

Section 3.10 of document

Too many Autistic people end up classed as a “looked after child”. Parsons et al (2018) found that in some Local Authorities, up to 12.7% of looked after children are Autistic. This is yet another horrifying statistic that shouldn’t exist. Appropriate support is vital to the family unit.

Community mental health support

“Many therapies and interventions rely on processes and communication techniques that do not make sense to children with autism, and only skilful [sic] adaptation can make them relevant and useful.”

Section 4.2 of document

Neuronormativity is the idea that there is a correct way of thinking, feeling, and behaving. Autistic people are often victimised by the neuronormativity of society. A significant issue is the neuronormativity that exists within mental health services. Such approaches will only serve to further traumatise an already struggling Autistic young person. Despite knowing that this is an issue, there has been little to no work to improve this situation.

“…at every appointment afterwards he was asked if he wanted to kill himself. This caused C great distress and he didn’t want to attend appointments as he knew he would be asked direct questions. CAHMS then stated that he didn’t consent to therapy and wanted to discharge him. Because of the failings and lack of support the family now have a social worker who holds regular Team Around the Child meetings, but CAHMS and the health service will not attend.”

Section 4.5 of document

This is something I have come across in my role as an independent advocate. Autistic people struggle to engage with the aforementioned neuronormative approaches of CAMHS, and are then labelled as “refusing to engage”. This could be avoided by professionals learning about their service user’s unique set of needs, but instead CAMHS refuse to engage.

“No assessment of need has been offered and protocols have not been followed. [C’s] family are very concerned about the future.”

Section 4.6 of document

CAMHS refusal to do their job with regards to Autistic young people is life threatening. Autistic people are viewed as seperate from the adult world with the UK government stating that only 3 in 10 Autistic people are in employment. These need not be issues if services like CAMHS gave us appropriate support from a young age.

Inpatient mental health support

“The You Need to Know report found that a high proportion of children with Autism in the CAMHS system are currently in Tier 4 (6.5% of children with autism compared with 4.5% of those without autism). These children have the most complex or serious mental health needs, and will usually be extremely vulnerable. Because of the complexity and vulnerability of these children, any service failures can have a devastating impact on them.”

Section 5.2 of document

Tier 4 is part of tertiary care in CAMHS nomenclature and refers to inpatient treatment. This report found that Autistic young people were more likely to require a tier 4 bed. It seems reasonable to assume that with better access to CAMHS and more robust and useful support within CAMHS for Autistic peopled, there could be a reduction in Autistic children requiring an inpatient setting. Of course, this is not solely the fault of CAMHS with local authority social care services also being a causative factor in this statistic.

As of January 2022, 2,030 Autistic people were inpatients with 1 in 7 being under the age of 18.

We also need to consider the risk of mistreatment in the inpatient setting with more and more scandals becoming public each year.

Recommendations of the document

“We recommend that each Clinical Commissioning Group develops specific pathways for mental health support for children with autism”

Section 6.1 of document

To date this has not happened. CAMHS still lacks specific pathways and there is an ongoing crisis with Autistic young people being turned away from services.

“We recommend that all staff working within CAMHS have at least basic training in autism, and that staff completing assessments for children with autism have specialist training.”

Section 6.2 of document

While the OMMT exists, it does not go nearly far enough. Services will not offer meaningful support until professionals are competent in neurodivergent experiences. We need more Autistic professionals in CAMHS, although this wont nearly be enough to fix the issue.

“We recommend that the Government issues new statutory guidance to commissioners to support the effective planning and commissioning of appropriate local services for children with autism and mental health problems.”

Section 6.6 of document

Statutory guidance would be a wonderful thing, but if it is not co-created with the input of Autistic service users it will be performative at best, and detgrimental to our wellbeing at worst.

“We recommend that health and local authority commissioning must take specific account of CAMHS waiting times, rates of return and family outcomes for children with autism.”

Section 6.8 of document

This has been an ongoing issue for so long that Autistic people are engaging in activism to address it. Entire charities and CICs exist solely because this is still an issue.

Conclusions

The UK government is more than aware of this issue, and has been for at least a decade. They know that CAMHS are failing Autistic young people to the point of loss of liberty and life, and yet nothing is changing. Once again it falls to Autistic people to put the work in themselves and create meaningful change in a system that should have helped them from the start.

You can do your part to make the change real by signing this petition.

Read the full document here.

Despite extensive searching, the You Need to Know report mentioned in this document appears to no longer exist.

Autistic drug-users and the lack of solid guidance in support services

In the UK the majority of mental health support and treatment is guided by an organisation called The National Institute for Health and Care Excellence (NICE). Their guidance sets out how each and every person treated in a clinical setting should be managed, and what treatment modalities are appropriate and inappropriate. Except there is a glaring gap in this guidance, this gap is with regards to the treatment of Neurodivergent drug-users. They have guidance on the dual-diagnosis intersection where drug-use and “severe mental illness” meet, but nothing regarding neurodivergence.

This presents a unique challenge to practitioners working in the field of substance-use; it certainly contributes to the misconception that drug-use is a non-issue for Autistic people. Of course, if it was an issue, why wouldn’t it be in the guidance?

Neurodivergent people exist at multiple intersections of race, gender, sexuality, socioeconomic status, why is it so hard to understand that we often turn to drugs in order to self-medicate the trauma of our improper society? Weir et al (2021) showed definitively that while we are less likely to report using drugs, we are more likely to report self-medicating with what can be considered “recreational substances”. This pulls the plight of Neurodivergent people into the spotlight. Where self-medication exists, the potential for escalation to addiction exists.

Without concrete guidance in place, support for those existing at this intersection of experiences is likely to continue down a path of inadequacy. Some might ask what guidance should look like, while I have some specific ideas, I believe there is a wider need for understanding of Neurodivergent experiences in service providers. Guidance can’t just be drawn up in a “one-size-fits-all” manner, clinical commissioners and others involved in treatment policy need a nuanced understanding of our experiences.

This understanding can only come from co-production of material guidance. Autistic and otherwise Neurodivergent people need to be involved in the generation of guidance and policy. Having worked in service user involvement models, I have seen first hand the vital impact that the voice of those affected has on steering policy.

The truth is that many people writing guidance and policy have little to no experience of the real world effects of drug-use, let alone the real world impacts that drug-use has on Neurodivergent people in particular. Most of them are still rooted deeply in medicalised ideas of neurodivergence. Their are broad issues to consider.

Drug-use is intrinsically linked to socioeconomic status and further marginalisation. When you consider that only 22% of Autistic people are currently in any form of employment in the UK (Office for National statistics, 2020), not to mention the number of us existing in the court and judicial system; Neurodivergent young people represent a particularly large portion of youth offending populations (Day, 2022). We are 7 times more likely to be permanently excluded from mainstream education (Gill et al, 2017), representing 44% of all permanent exclusions (Vibert, 2021).

It seems as though Neurodivergent young people exist on a school to self-medication to prison pipeline, and that is assuming the drugs don’t end their lives before they have begun. The guidance is not only needed, it needs to consider all aspects of life that are contributing to it. We cannot claim that we are engaging in harm reduction while such things are happening. Let us not forget the horrifically traumatic experiences that Autistic people face (Gray-Hammond & Adkin, 2021). It’s a perfect storm for drug-use and addiction. We need guidance from official governing bodies.

It’s vital to mention that neurodivergence doesn’t end at 18. Neurodivergent young people turn into Neurodivergent adults. We need support and guidance across all age groups.

Until NICE and other clinical governing bodies work with Neurodivergent populations to produce guidance that is fit-for-purpose, we will continue to see the premature death and imprisonment of Neurodivergent people who are doing nothing but trying to survive in a system that sets them up to fail. We need guidance across all settings, but especially clinical ones.

Please sign this petition regarding the lack of NICE guidelines

References

Day, A. M. (2022). Disabling and Criminalising systems? Understanding the experiences and challenges facing incarcerated, neurodivergent children in the education and youth justice systems in England. Forensic Science International: Mind and Law3, 100102.

Gill, K., Quilter-Pinner, H., & Swift, D. (2017). Making the difference: Breaking the link between school exclusion and social exclusion. Institute for Public Policy Research.

Gray-Hammond, D & Adkin T (2021) Creating Autistic Suffering: In the Beginning there was trauma. Emergent Divergence

Office for National Statistics (2020) Outcomes for disabled people in the UK: 2020

Vibert, S. (2021). Briefing: Five things you need to know about SEN in schools: February 2021.

Weir, E., Allison, C., & Baron-Cohen, S. (2021). Understanding the substance use of autistic adolescents and adults: a mixed-methods approach. The Lancet Psychiatry8(8), 673-685.

The Mental Health Act (1983) explained

The mental health act of 1983 (updated 2007) is legislation in England and Wales that puts into law the individuals rights regarding mental health treatment. In particular, it talks about the individuals rights with regard to inpatient treatment. This is an issue of significance to the Autistic community.

Patients in an inpatient setting can be either formal (detained under the mental health act) or informal (they are inpatients volutarily). For the purposes of this article, we will look at the sections that can be used to detain an individual against their will, and what their rights are with regards to their use.

Section 136

This pertains to the removal of an individual from a public space, to a place of safety, for assessment. This is carried out by police. Under this section you can be held for assessment for up to 36 hours.

Section 135

This section allows police to enter a private place (not public) to detain you for assessment. To do this, they must have permission from magistrate. Again, you can be detained for up to 36 hours.

Section 2

Under this section, you can be detained for up to 28 days in a psychiatric facility for assessment and treatment. People held under this section can be treated against their will. It is unusual for a section 2 to be renewed.

Section 3

This section can be renewed.

Initially you can be detained for 6 months, it can then be renewed for a further 6 months. After this period subsequent renewals allow for 12 months of detainment. This section should only be used for yourself and others safety, and where treatment cannot be provided as an outpatient.

Section 5(2) “Doctors Holding Power”

This section allows a doctor or other approved clinician to detain you for up to 72 hours. This section requires a report to be made to the hospital manager. You are most likely to come across this as a voluntary patient.

Section 5(4) “Nurses Holding Power”

This regards detainment by a specially qualified nurse. You can be held for up to 6 hours, or until a doctor or clinician with the power to detain you arrives, whichever is earlier.

Section 117 aftercare

This section describes the legal duty to provide aftercare for those discharged under sections 3, 37, 45A, 47, and 48. this also applies if you are under a Community Treatment Order (CTO).

Community Treatment Orders

This is similar to being “on licence” from incarceration. A CTO allows you to be treated in the community under certain conditions. If you break the conditions of your CTO, you can be recalled to hospital.

This is not exhaustive, the mental health act contains a great many sections, but these are the ones you are most likely to encounter standardly.

Remember

If detained under section, you are legally entitled to an Independent Mental Health Advocate (IMHA) and a Second Opinion Approved Doctor (SOAD). You also have the right to go to tribunal and ask that your section be ended.

The tin can conundrum: the problem with “labels”

Most of us have probably heard the saying by now. “Labels go on tin cans, autism is a diagnosis”. It’s true, calling autism a label is inherently invalidating. Being Autistic is an identity, a culture. As Dr. Chloe Farahar of Aucademy explains, autism itself is an abstract concept, the only thing that exists is Autistic people. So why do we feel the need to separate out and diagnose people according to the way their brain works.

After all, this is the neurodiversity movement, are we not trying to end the medicalisation of different neurocognitive styles?

Let’s consider neurotypicality. You don’t get “diagnosed” as neurotypical. This is because people with neurotypical bodyminds are able to perform their cultures neuronormative standards. They are able to assimilate into society, and therefore are generally good and obedient profit machines that don’t upset the status quo.

Neurodivergent people, however, are somewhat of a wrench in the gears. We can not perform neuronormative standards, not comfortably anyway. We require the masters house to be dismantled and rebuilt. Here’s where the conundrum comes into play.

As Dr. Nick Walker explains in her book Neuroqueer Heresies, the master will never give you the tools to dismantle their house. In this case the masters tools look like a society that disables neurodivergent people, and uses that disability to pathologise neurodivergence by locking all of the support that might improve our lives behind a medical diagnosis. That medical diagnosis, in turn, is then used as a marketing tool where by people have to pay for diagnosis (in many countries), pay for support, and in fact the “autism label” is used to wack a premium on anything that might make our lives more comfortable.

Let’s not forget that the ABA industry pulls down millions every year by selling the idea that they can “fix” your “broken” child, converting them into a person who can perform to the neurotypical standard. “Indestinguishable from their peers” has become somewhat of a motto for those who want to see autism eradicated.

So how do we break out of this conundrum?

As Dr. Walker says, we “throw away the masters tools”. We find and bring the tools necessary to dismantle a society that oppresses us. In this case, the masters tools are diagnosis and the so-called “supports” that we find locked away behind it.

It may sound radical, but we need to work towards a world where diagnosis is no longer necessary. A neurocosmopolitan society where no one neurocognitive style holds power over another. It’s radical, and sounds deceptively simple, but it isn’t.

In order for this to work, we have to dismantle the structural oppression that our current economic systems wield.

We have to understand the intersections between different minority groups.

We need to work together to create a world that doesn’t value arbitrary values over the value of human life.

This probably won’t be achieved in our lifetime, maybe not in our children’s lifetimes, but it can be achieved. We just have to take the first steps in the right direction.

A direction that takes us away from the pathologisation of different minds.

So let me end by saying this. My name is David, I’m neurodivergent. It isn’t an illness, I don’t require fixing because I am not broken. I live in a world that doesn’t fit me well by design. I refuse to accept that world, and I hope to leave a better one than the one I was born into.

Neuroqueer: Depathologising psychiatric “conditions”

This article was co-authored by David Gray-Hammond and Katie Munday

Trigger Warning: Ableism, pathology paradigm, sanism, use of words insane and madness, medication, therapy and trauma.

Neuroqueer theory evolved out of the neurodiversity paradigm. It was a logical progression in the field of depathologising natural variations in the human bodymind. This concept appreciates the neutrality of neurodivergence, as neither good or bad, it simply is.

While this concept has been widely explored in the area of intrinsic neurodivergence, (such as autism and ADHD), there is less discussion regarding acquired neurodivergence; neurodivergence that is typically acquired through trauma or the intentional alteration of ones bodymind (such as through the use of psychedelic drugs). Specifically, we wish to discuss the concept of psychiatric “conditions”.

Psychiatry itself is one of the youngest branches of medicine, first mentioned by name in the late 19th century. Due to its infancy the field still remains fallible, and is largely governed by the contents of a single textbook; the Diagnostic and Statistical Manual of Mental Disorders (DSM) currently on its fifth edition, and the recipient of a recent text-revision (DSM V-TR). Unsurprisingly, this textbook is based entirely in the pathology paradigm, with all bodyminds described in its pages as “disorders”.

The use of the word “disorder” is important. This word places a level of responsibility on the individual to return to a more “ordered” state, dictated by cultural norms. This has historically been achieved through the use of psychoactive drugs, which are often prescribed before the use of talking therapies.

Psychiatry has a place in the world, but currently relies too heavily on the use of medication, without understanding the context around individuals. This is why it is important for psychiatrists to take a more trauma-informed, neurodiversity-affirming approach. There is a balance to be found between the use of medication, and the introduction of talking therapies that encourage the individual to co-exist with the traits of their neurodivergence.

It is important to understand and work with people holistically to reduce their distress, as many of us are seeking support due to ongoing trauma.

We are living in a world that overwhelms our senses, ignores our social communication differences, and treats us as second class citizens. Autistic people are made to adapt to norms that are both uncomfortable and harmful, and this creates complex-trauma for an increasing number of us. Once we experience bullying, isolation, and neglect, our self-worth takes a nose-dive. Often we mask our Autistic differences for fear of ridicule, perpetuating the low self-esteem that arises from forced conformity and assimilation. This becomes a cycle of shame that encourages us to hide our true selves, in return for a semblance of dignity.

So where does neuroqueer theory fit into this?

Cultural expectations of mental health are based heavily in sanist ideas of “normal”, and define our understanding of “madness” as anything that departs from these expectations.

Taking a neuroqueer approach allows us to embrace our differences, whilst appreciating that many of us still need accommodations. This is why emerging talking therapies that teach co-existence (rather than interventions that aim to change us) are an important step forward.

Subverting the expectations of our societies predominant culture, we reclaim ourselves, and learn to co-exist with our “psychiatric” self. No longer are we “insane” by normative standards, but neurologically queer, and refusing to be ashamed of that.

Addiction doesn’t strip us of our humanity

Trigger Warning: This article contains discussion of addiction, death, metaphors around death, dehumanisation, and mistreatment.

What defines us as a human?

Is it rhetorical ability? Emotional experiences? Perhaps the tools we use?

I would argue that one of the defining characteristics of our humanity is our ability to to recognise humanity in others, or perhaps more specifically, our ability to deny the humanity of others. Thanks to years of colonialism, warfare, and eurocentric beliefs, we have developed a strange sort of morality. This morality is what we use to ordain or deny a person or object as human/human-adjacent.

Unfortunately, when you are an addict, human-adjacent would be a big step up in how the world sees you. For as long as we have existed, we have been ignored, spoken over, driven out of our homes, and killed. This because contemporary spins on normative morality posit that to be an addict, is to be a monster. We are beyond help and reason.

We are what you fear your children will become.

The truth is that all judgements on addiction come from a place of moral relativism. Addiction is only seen as a moral failing because of cultural attitudes towards the behaviour associated with addiction. Fundamentally, it is seen as a moral failing, rather than a response to trauma and unmet support needs. If we could move society to a more “trauma-informed” culture, it is likely that attitudes towards addiction would alter quite significantly.

This isn’t to say that addiction doesn’t represent a risk to others. As addicts, we find ourselves doing things we never imagined or wanted ourselves doing. The lengths that one might go to in that desperation can lead to some truly awful consequences. To put it another way; we still have to take ownership of our shitty behaviour, whatever the reason. However, we also require some level of compassion. Compassion can go a long way one the journey to recovery.

Sadly, compassion doesn’t go all the way. We still need professional input from those who know how to deconstruct the circumstances of addiction, and help the person to rebuild their life. We need to build a life where it is easier not to engage with our addiction. This is made ever more difficult by the defunding of services that work to do such things. Besides that, we need to recognise that heroin, crack, and alcohol, are not the only substances that need attention from services. The world of addiction grows more complicated by the day, especially since the dawn of novel psychoactives.

Considering the future, we need to build a world where it is not necessary to become addicted to survive. A world where if we do become addicted, we are not shunned to the outer edges of our community. We need people to stop acting like addicts choose to be addicts. Addiction knows no boundaries, it can come for anyone.

Deconstructing societal and cultural attitudes will take a long time. Things like decriminalisation are important, but if done badly could actually reinforce moral judgements of substance users. For this reason, we need further longitudinal data looking at other countries that have done such things, seeing where the positives and the pitfalls lie.

It’s vital that we do this work, because moral judgement and “not in my neighbourhood” attitudes are literally killing addicts. The world has blood on its hands, and it doesn’t even realise it.

Addicts deserve their humanity.

Back to the corner: Psychoactive drug use, my Autistic experience

Some 4(ish) years ago, my debut blog post on this website was Standing on the corner: Where autism and addiction meet shortly covered by Recovery services as an Autistic adult. Back then My writing was merely an attempt to scream into the void, offloading my frustrations. Little did i know that in 4 years, my articles would have garnered over 25,000 views, and that people would ask me to go places and do things. I was also pretty surprised to discover that for the most part I don’t mind going places and doing things.

With that in mind, I decided it’s time to take another crack at this one, seeing if 4 years of experience makes for an improved experience for you, my wonderful readers and followers.

So here we are.

I’m David. Born Autistic at the dawn of the 1990’s. My life was pretty standard for what you’d expect of a truamatised, psychotic, recovering addict. So let’s consider where this particular part of my journey started.

October 2008.

My long term relationship came to an end (mutually, but still painful none-the-less). On that very same day, I had a peculiar experience. I heard a number of voices calling my name, but it seemed that it wasn’t the people around me that were doing so. Interestingly, this was the day of my first ever cigarette as well. Hindsight tells me that the fact that my first cigarette led to me smoking an entire pack in a number of hours should have been a huge warning for what was coming. Sadly, hindsight isn’t good for much, and I have a traumatised AuDHD brain that at the time was going through what some might term a “prodromal phase” for the psychotic condition I would later be diagnosed with.

Over the next week I discovered that smoking cannabis really helped my growing paranoia and auditory disturbances chill the f*ck out, and that when drank a litre of vodka, I just didn’t give a sh*t. Just a note here for anyone who can’t see what’s coming; drug-use and trauma is a volatile mix. Some people use psychoactives safely and medicinally their whole lives, with no real negative outcomes. I on the other hand came to resemble one of those warning videos your school would have shown you about the dangers of peer pressure and drug-use.

So, naturally I did what any normal AuDHD’er would do when they discovered something that makes them feel good. I did it again. And again, and again, ad infinitum. Each time I used, my consumption grew. Each new environment I entered I would break down another boundary in my life. First it was cannabis, then alcohol, and I figured that since these two weren’t the dangerous and hellish things my school had made them out to be, perhaps other psychoactives would be okay as well. Side note: this is why using scare tactics and abstinence based approached to stop young people from getting high is f*cking irresponsible, because when they find out they’ve been lied to, they don’t truat you on ANYTHING.

My time at university can be summed up by quoting myself “I don’t think you’ve ever seen me this high, have you?” and the phrase said to me most often “How the f*ck are you still alive?”. You see, I hadn’t noticed it, but I was taking drugs by the shed load. I was out of my mind on pretty much anything I could get. It’s easier to list the drugs I haven’t used than the drugs I have used; To date, I’ve never used “street” heroin, or crack cocaine. More on this in a moment.

What this meant was that when I ran away from my environment, making the 300 mile journey back to my mother’s house, I swore I would never use again. After all, I had nearly died on a couple of occasions, and found myself on the radar of what one might describe as “less than savoury people”.

More on my drug use…

Yes, I have never used Heroin or Crack, but what did happen was that I got addicted to Oxycodone, Diazepam (Valium to my american followers), and Spice (you know, that zombie drug that everyone was talking about for a matter of months until it became illegal and everyone decided to pretend like the problem was solved). Of course, I was drinking a litre of whiskey most nights, and I also had excellent taste in red wine and ales.

Unsurprisingly, I found myself under the treatment of what would describe itself as a “Substance Misuse Service” (SMS), interestingly, there seems to be an unwritten rule that when you spend more time in hospital from drug overdoses than you do at home, they get a little angsty with you. Here’s where I start getting pissed off.

By the time I was under the SMS, I actually wanted to stop using, but had completely forgotten what normal life was like. I hadn’t been sober a number of years, and was quite frankly spending most of the day looking like I had just left the set of Fear and Loathing in Las Vegas. My keyworker was a wonderful person, and conveniently specialised in Novel Psychoactives like Spice. Sadly, that’s about as far as my good experiences go.

You see, I had also been referred to the local secondary care mental health service, referred to as the “Assessment and Treatment Service” (ATS). Again, they took umbridge with my repeated unaliving attempts, and decided they should probably do something about this obvious wild card called David.

Here’s the problem though.

The SMS needed my mental health to be treated. How can a person stop using drugs to hide from trauma, when that trauma is still ongoing and not being processed? Luckily, the ATS had a stellar response; “We can’t treat your mental health until you are sober”. Thank goodness that we could all agree on absolutely nothing.

I was quite privileged eventually, because my lead practitioner at the ATS actually spoke to my keyworker at the SMS, and we eventually got somewhere. It was a psych ward, but it was still somewhere, and that’s what matters.

I detoxed off the psychoactive stuff, and then detoxed some more in the community. April 7th 2016 I had my first day of sobriety in close on a decade. This warranted a celebration, naturally, so naturally I threw myself into a monotropic spiral, had a major psychotic episode as a result, and earnt myself a free trip back to the psych ward. Oh, and by the way, being Autistic on a psych ward is a huge steaming pile of bullsh*t that has been placed in an already burning dumpster.

So what other issues did I face? Services were woefully ill equipped to take on a neurodivergent client on just about every front.

The entire system for appointments was clearly designed by and for neurotypical people who assumed that everyone had a good grasp of time-keeping, sensory regulation, emotional regulation, and their short term memory. It was an absolute nightmare.

So what was different about my drug use compared to a neurotypical?

I think the largest difference was my approach. Drugs were my special interest, still are to an extent (just without the use of said drugs). I used myself as a science experiment. I kept detailed journals of what I’d taken, what dose, what I had combined it with, and how it affected me over a number of hours. My ultimate goal was to find the sweet spot where I was no longer aware of my existence, but still alive.

Another interesting aspect of my drug use was my blatant identity crisis. Growing up Autistic meant being constantly told that who I was, was incorrect. Everything about me was a target for the neurologically provincial bigots. So when I discovered that drugs allowed me to build a new identity, one that I felt was better accepted (says something when your addict identity feels better accepted than your Autistic one, doesn’t it?), I leaned into it and allowed psychoactives to become my ENTIRE identity.

Of course, I was still Autistic and ADHD as hell, so drugs often served to extend my spoons reserves far beyond their limit.

The biggest pull of drugs though? I could switch off my feelings, or change them in a matter of minutes to hours. I had the control, I felt what i wanted to feel. Take that, brain!

Of course I tried things like the 12-step program to get sober. It really wasn’t my sort of thing, but apparently voicing that in meetings is a huge faux pas that means none of the 12-steppers continue to talk to you when you leave the program. I ended up taking things I had learnt from multiple sources and building a life where it was easier to not use anymore. When I was struggling, I would reach out and help someone who needed help. It became a philosophy that I lived by. These days I have to be a bit more careful with my spoons, but still essentially try to live life by helping others out of the dark spaces that litter the world.

The fundamental problem with my experience in “the system” was that no one had any appropriate training around neurodivergent people. To be fair, I didn’t even know of things like monotropism, double empathy, meltdowns, burnout, or really anything to do with actual neurodivergent experience, so I couldn’t really act surprised when services didn’t either.

Life hasn’t been perfect since I got sober, but I’m glad I got to experience it. Sobriety has been a gift that I gave to myself, I don’t intend to ever return it, but one thing I have learnt more recently is that if you spend your entire life trying to predict the future, you’re not going to have a fantastic experience of the present.

A set of final words? If you are struggling right now, with any of the stuff in this article, I want you to know that it CAN get better. I don’t say that to bullsh*t you. The ugly truth is that not everyone survives this stuff. I do, however, urge you to give yourself the best chance you can. 7 years ago, as I embarked on my recovery, I could not have imagined being where I am today. The suffering I was experiencing seemed unending and inescapable. I got out, though.

I truly believe that everyone deserves a chance to be a happy and content member of the society they live in. Of course mental health and addiction are only a small part of peoples experiences, which no doubt I have already, or will, elaborate on in some capacity.

I just need one thing from you, dear reader, don’t give up. Keep trying.

Autistic Substance Use Survey 2022

Below is a survey on Autistic people and substance use. The aim is to collate data anonymously on the use of drugs and alcohol in the Autistic community, and use that data to write a report that will be published on this website.

The hope is that these insights may help Autistic people better advocate for themselves with regard to this topic.

None of the questions are mandatory, but the more that you can answer, the more data we will have to look at.

Mental health and the neurodiversity paradigm

When considering the landscape of mental health, we also have to consider the normalisation of stigma and the dehumanisation of those who are struggling.

Since the advent of psychiatric medicine, mental health concerns have been described in pathological language. What if we used the language of the neurodiversity paradigm? How would it impact the wellbeing of those with lived experience if we recognised “mental illness” as a form of neurodiversity on a global level?

In my own personal experience, recognising my voice-hearing as neurodivergence has helped mitigate some of my distress. Knowing that my brain is different, rather than broken removes the pressure to fix myself, and instead has encouraged me to engage with talking therapies that are teaching me to co-exist with my personal experiences.

Don’t misunderstand me, there are still plenty of times when I feel broken. Such is the episodic nature of my mental health.

Reframing our mental health experiences as natural variation of minds, rather than sub-human errors in a computer may help many people by removing the self-blame that so many of us in the mental health community experience.

Rather than “you are broken and need fixing” we can consider the much more nuanced approach that there are infinite variations of the human mind, living in a world designed for one predominant style of brain. It seems natural to me that such a world would be incompatible with many people, and as such we experience suffering.

No longer do we take medicine to fix a broken mind, but instead to support our wellbeing in a world that causes our suffering.

Of course, we should mention access to diagnosis. Many of us miss out on our part in the neurodivergent community because our diagnosis is wrong or incorrect. While the general attitude in neurodivergent communities is that diagnosis is a privilege and not a requirement, we need to push to make sure that people acquire appropriate diagnosis in a timely manner. We need to make sure that it is an accessible option for all.

Eventually, however, I hope, a world will exist where diagnosis is a thing of the past. Where we can live in a neurocosmopolitan society such as that posited by Dr. Nick Walker. A world in which no one group has privilege. A world where we can all co-exist. A world a long way off perhaps, but still a world I will fight for.

Once we start realising that diagnostic criteria for ALL mental health is based on the neurodivergent person in distress, we have to become curious about what these neurodivergent minds would look like in a world that didn’t cause them to suffer. What a beautiful neuroculture we could build. A curious thought to say the least.

Addiction advocacy and the inspiration paradox: A reflection at 6 years sober

Today I am 6 years sober from addiction. During those six years I have learnt many lessons, but in this reflection I would like to consider something that has played on my mind for the past three years of my advocacy work.

Inspiration.

While not overtly a bad thing, it is often misused to infantilise and minimise the achievements of disabled people while hiding behind a mask of feigned respect. This phenomenon is known as “inspiration porn”.

A good (hypothetical) example of such a thing would be a video of a disabled person doing something completely mundane, like dancing, but they would be dancing with a non-disabled person. The video would centre the non-disabled as some kind of saviour to the disabled person for doing something as basic as treating them like a human being. The implication of the video, albeit in subtext, would be “Look at the amazing things that disabled people can achieve when an abled person rescues them from their shameful existence”.

It’s dehumanising and wrong.

So, addiction advocacy.

As a recovering addict in the public eye, I do what I do because I want to help others overcome similar challenges to my own, and help reduce their suffering. This does in fact require inspiring people. If it weren’t for the sober addict who showed me kindness during my first stretch on a psychiatric ward, I might not have chosen recovery.

The fact that they had turned their life around, and become someone I wanted to look up to was inspiring, and that isn’t a bad thing.

What would be bad would be if people like myself are allowed to become another source of inspiration porn. It’s a difficult line to walk. I want people to have what I have found, not get off on the tragedies that have formed who I am.

Contrary to popular belief, addicts are people. We are not burdens, we don’t deserve our suffering. Regardless of whether or not we are in recovery, we deserve food, housing, health care, support, and kindness.

This is what I want to inspire in people.

So please, don’t look at me and think it’s a miracle that I recovered. My recovery shouldn’t be the inspiration. I was privileged to have a loving and supportive set of family and friends. I had good key workers (although the services they came from were woefully ill-equipped). I was in a place where I was ready to enter recovery.

What I want to inspire in you is the idea that all addicts deserve recovery. I want to inspire you to challenge the systems that keep people like me trapped in a world of suffering.

I want you to know that those with less privilege than myself need us to get in the trenches and help them fight this war.

If that is what I inspire in people, then I am happy with what I am doing. If, however, you look at me and see a walking miracle, then I have not gone far enough.

The tragedies and traumas of my life should not be celebrated. They should be wielded as weapons to dismantle the masters house, and rebuild it into something where we can all coexist and thrive.

Verified by MonsterInsights