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Aug 27 2023
AuDHD addicts don’t respond to shame the way you want them to: Here is why

I have written before about how How the shame cycle barricades us from recovery in terms of addiction. In particular, here, I think about people who are AuDHD. If you exist at that particular intersection of experience, there is an increased likelihood that you use substances to improve your own wellbeing. Where there is self-medication, there is an increased risk of addiction. Where their is addiction, there are people trying to shame them into quitting.

Autism, ADHD, and shame

Being neurodivergent usually comes with a level of shame. This is due to the fact that society uses neuronormativity to police how we think, feel, act, and emote. It is estimated that ADHD children receive around 20,000 negative or corrective comments by age 10. Let us not forget that if a child is AuDHD, then there is a risk that they have been exposed to harmful interventions such as ABA or perhaps even MMS to try and make them “indistinguishable from their peers”.

When we consider this with respect to AuDHD adults, we are literally creating a factory line that takes children and turns them into adults who believe that who they are is wrong, invalid, a failure, or subhuman. To be AuDHD is to be constantly told why you are not enough. I believe from this you can already see why we may turn to drugs and alcohol to feel better.

Why does shame not stop addiction?

Clockwise arrows move between the words “shamed by people” and “use to cope” around the word “addiction”.

Addiction is insidious. It creeps into your life and slowly dismantles it. Stripping away your sense of identity, your relationships, your economic stability. It slowly takes everything from you until it is ready to take you away from the world. Addiction is not a moral failing, and it certainly is not a choice. No one wakes up one morning and decides to give away their liberty in the pursuit of oblivion.

One of the reasons we seek that oblivion is because the pain we experience is so intense that we would rather feel nothing at all. Shame adds to this pain. It eats away at us, tells us we should hide and obfuscate those parts of us that need to be in the light. If open communication is the key to recovery, then shame is the barricade keeping us from it. For this reason, shame will only ever keep us heading back towards oblivion.

What helps AuDHD people recover from addiction?

As we have discussed. AuDHD people are already driven to conceal themselves from childhood. Driving that further by shaming their drug use only serves to entrench that more deeply. In order to recover, we need to be able to communicate our inner experience openly and honestly. We have to create environments where a more natural embodiment of our internal experience is not something that will be penalised. To consider it another way; we have to let people be themselves.

Before we can be ourselves, we have to know ourselves. This is why community connectedness is so very important. Aside from an overall reduction in minority stress, it allows us to learn about ourselves through shared experience with others. By engaging in natural communication and AuSociality, we learn what it is to be us, and how to improve our wellbeing. When we begin to feel good about ourselves, it becomes easier to tackle addiction.

There is no one-size-fits-all approach to addiction recovery, but I am certain that shaming AuDHD addicts will never achieve what you hope it will. If we want to save lives, we have to begin creating safe and nurturing spaces, not driving people back to the oblivion they already feel they deserve.

David Gray-Hammond 0 Comments
Jul 13 2023
AuDHD and cigarettes: What is the relationship?

Autism and ADHD are often reported to have vastly different relationships with regard to the smoking of cigarettes. Research suggests that among Autistic people, we see a reduced rate of smoking, while ADHDers generally report smoking more frequently (nearly half reported daily smoking by age 17). I believe, however, that a serious oversight has occurred in research regarding the co-existence of both Autistic and ADHD identities in individuals (also known as AuDHD).

I had previously highlighted that around 37% of Autistic respondents to a Twitter survey reported current or historical smoking. I discussed that this may be because Autistic people use smoking as a stim and for sensory breaks, but when we consider the overlap between autism and ADHD (estimated to be 50-70%) we start to see more reasons for why there may be increased smoking of tobacco between neurodivergent people.

ADHDers often smoke as a way to self-medicate (nicotine is a stimulant) or due to impulsivity (see this study). When we combine ADHD and Autism, we combine the risk factors for smoking cigarettes. Not only do AuDHDers need a reason to escape environments or use smoking as a stim, the nicotine helps to regulate attention.

So, when we consider research that finds Autistic people to have a lower than average prevalence of tobacco smoking, I have to question whether or not the sample was biased. At least half, if not more Autistic people are also ADHD, and therefore should be subject to the sake prevalence and risk factors for smoking as those assumed to only be ADHD.

Smoking rates are an important thing to consider in neurodivergent communities, given their link to early mortality. Autistic people face a mortality risk suggested to be 51% higher than the general population with Autistic people living an average of 16 years less than non-Autistic people. Increased rates of smoking in AuDHD demographics almost inevitably contribute to our shorter than average life span.

This raises important questions for cessation and maintenance of abstinence from tobacco in nicotine dependent AuDHDers. Substance use services are notoriously ill equipped to work with neurodivergent people; the same could be said of smoking cessation services. Most of which are run out of pharmacies in the UK with no reference to neurodivergence in NICE guidance.

As with most cases of chemical dependency and addiction, neurodivergent people are forced to find their own route to abstinence or harm reduction. This matter only becomes more complicated with the co-occurrence of multiple neurodivergent identities.

AuDHD people are often ignored in research, probably due to the complicated nature of identifying exact co-occurrence rates in a world where diagnostic criteria miss the identification of many. When we consider research into AuDHD substance use, we can appreciate that it is not a simple affair and that it would be a significant undertaking to obtain truly accurate figures.

Regardless, Autistic and ADHD people deserve a shift in research priorities, away from causative factors and genetics, towards meaningful insights into our quality of life and longevity.

Nothing will shorten our lives more than ignoring the issues that shorten our lives.

David Gray-Hammond 1 Comments
Jul 1 2023
AuDHD and me: My nesting habits

When I first started this blog, I was writing largely about my own personal experiences. Back then, the only diagnoses I had (that would stick) were autism and a substance misuse disorder “in remission”. I wrote largely about my experiences as an Autistic addict in recovery, and not a lot else. Over time, I have discovered my ADHD and Schizophrenic identities, and my drug and alcohol addiction has remained “in remission”.

So, in order to have a bit of a throwback, I wanted to write a little about something I experience personally in the hopes of starting a conversation.Tanya Adkin and I have been writing about AuDHD (see more here, here, and here); I thought it might be nice to capture one of my quintessential AuDHD experiences.

Nesting

This is a word that is often thrown around in child care circles and animal husbandry, but in my Autistic and ADHD world, it has a slightly different meaning.

I have a safe space, and this space is equipped to meet all of my needs, sensory, sleep, work, nutritional. There are no limits to eat I keep within this safe space. To most, it appears that I live in a state of chaos, but in actual fact I have my needs fulfilled in this space, and what appears to be chaos is actually a completely curated space. I know where every item I need resides.

What does this look like in practice?

My nest starts with a sleeping space. A comfortable bed with plenty of pillows and a duvet that doesn’t make me too hot. I have a galaxy projector that projects colours and lasers onto the ceiling. I have various LED lights, many of which respond to the television and soundbar at the back of my desk.

Synchronised visuals and sound are essential sensory needs.

My oil diffuser runs in the evening, often filling my room with the smell of sweet peas or lavender, sometimes cedarwood. This allows me control of my olfactory sense.

On my bed can be found an assortment of snacks, books I am reading, my medication, and notebooks. I also have a tripod with a light ring next to my bed; the ability to take notes or record on a whim is essential for my impulsive mind. The multiple books mean that I can read and research in accordance with my attention hyperactivity, which often needs me to hop from book to book rather than focus on one at a time.

My computer sits off to either side of the TV, moved into place during the day to allow me to work. This is a space where I often crash and pass out rather than intentionally fall asleep, as such, nothing is removed from its spot before I sleep. My days are busy, and I need to know it won’t matter if I crash at the end of the day.

Finally, next to my bed is my sons cot. This is in a position where I can see, hear, and get to him easily when he is in the room with me.

The cherry on top is that all of my electronics are voice controlled, reducing the need to waste spoons on setting up this space at the end of each work day. I simply utter a voice command and lay back in sensory bliss.

What are the benefits of such a curated space?

This is my space. It allows me to have control over one small part of a traumatic and offensive world. While it required the privilege of working to set up (because money stupidly exists), it was worth every penny.

This means that for all the turmoil in the world, there is one place where I can be safe, one place that is mine, one place where my needs are entirely met. It is absolutely vital for my wellbeing. I enjoy the company of family and friends, but I need my curated solitude to keep me grounded.

Please consider supporting my work with a paid subscription to my Substack.

David Gray-Hammond 4 Comments
May 29 2023
Creating Autistic Suffering: CAMHS kills kids

This article was co-authored by David Gray-Hammond and Tanya Adkin

This article includes exerts from interviews conducted by David, all interviewee’s gave their permission for quotes to be used.

Tanya has demand avoided weighing in on this topic for quite some time. Not for no good reason. Tanya has felt torn with this topic and the potential outcome of the petition that has been circulating and included in David’s previous articles on CAMHS. This petition has been signed by nearly 190,000 people as we type this. The number is climbing. The petition shines a light on the routine refusal of services such as CAMHS to provide mental health support for Autistic children and young people.

Neither of us have ever been quiet about our opinions on statutory services for Autistic young people, Tanya especially is a firm proponent of the phrase “CAMHS kills kids”. This might sound extreme, but in our lines of work we have seen their lack of competence have life altering/ending consequences.

If this petition succeeds to its fullest extent, and the doors are flung open as tens of thousands of Autistic children across the country flood into CAMHS departments (unlikely to happen quite like this, but bare with us), what awaits us on the other side of those shiny doors? Doors that Autistic people very rarely get to see the other side of.

You’d be forgiven for assuming “support” might be found there. That’s what CAMHS is there for, right? Our biggest fear is that we are just waiting to be disappointed at best, and at worst, the mental health of tens of thousands of Autistic young people is going to get significantly worse.

What might CAMHS offer?

“Services are still being designed without the involvement of the people using them. There is chronic under-funding and under-staffing which is undoubtedly having a huge negative impact on outcomes.”

Charlotte, CAMHS Professional

CAMHS may offer:

  1. Medication–
    • This has it’s place, but 9 times out of 10, in our experience, Autistic people present with mental health issues (especially young people that have been subject to the trauma that comes from an education system not fit for purpose, and woefully underfunded) due to unmet needs. There is no amount of medication that can fill the space where education falls short. It’s akin to sticking a plaster on a stab wound.
  2. Talking Therapy–
    • If an Autistic young person has experienced enough trauma to feel they need to access mental health services, it’s highly likely that they will be alexithymic. The first thing to suffer when a child is traumatised is their interoception. If they can not express how they feel, talking therapies (usually based in CBT) are likely to reinforce the medical model view that they are broken and can not be fixed. Furthermore, they’ll mask through it. Masking is a leading predictor of suicidality in Autistic people (Higgins et al, 2021; Adkin, 2023).
    • Neuronormativity is another factor to consider, if the person who is helping the child or young person comes from a neuronormative perspective that “neurotypical” is the gold standard of being that everyone should strive for, then you’ve given a young person something else to fail at (Gray-Hammond and Adkin, 2022).
  3. Parenting Courses–
    • You can’t parent away Autistic trauma (Gray-Hammond and Adkin, 2021) or burnout, or really any other mental health concern for that matter. Not only is it extremely patronising, it also risks parents being taught harmful, outdated methods based on the lack of competence of those designing and delivering said courses. This leads nicely onto our last offering on the CAMHS shitlist.
  4. Parent Blame–
    • Institutionalised Parent/Carer Blame (IPCB) is a real phenomenon (Clements and Aiello, 2021), and the NHS is an institution. The thing about IPCB is that it covers the lack of professional competence and protects their egos by shifting the onus of responsibility onto the parent and subsequently social care. It’s also a fantastic cost-saving tool. Unfortunately, it often has devastating consequences. It’s not only the young person not getting their needs met, it’s the trauma of parents believing they are responsible for their young person’s mental health difficulties. The trauma accrued from social care involvement. The worst but not uncommon occurrence of an accusation of fabricated and induced illness (Gray-Hammond and Adkin, 2022).

” I worry about staff knowledge levels regarding up-to-date autism practice and the nature of the interventions offered”

Jenny, Parent of child under CAMHS

What do Autistic children and young people with mental health concerns actually need?

“Practitioners need to be better equipped to recognise the differences between treatable mental health difficulties, and challenges within the context of autism”

Charlotte, CAMHS Professional

They need:

  1. Sensory Integration trained Occupational Therapists
    • This is absolutely essential to understand the sensory profile of an Autistic person. It allows us to make provision and adjust the environments they exist in accordingly. This in turn reduces the impact of sensory trauma (Fulton et al, 2020). This also affords the young person and the people around them understanding of their needs. It reduces anxiety and builds self-advocacy, while simultaneously helping develop coping strategies.
    • There’s one problem with this, there are not enough qualified OT’s. There is a workforce crisis across social care and the NHS (Brexit doesn’t seem like such a bright idea after all…). This is just for regular OT’s. To become a sensory integration OT you need approximately two years extra post-graduate study (Can’t see the government finding a magic OT tree at the bottom of the garden any time soon).
  2. Mental Health professionals that will call out the school system for the trauma they cause
    • Unfortunately, it’s not considered “professional” to call out other statutory services. Health professionals are often told that they can not comment on education because it is outside of their remit. Tanya would argue that safeguarding is everyone’s remit (David agrees). We would remind professionals that physical and mental health have legal parity (Baker and Gheera, 2020). If a teacher willfully broke a child’s leg, it would be on national news. Yet, routinely restraining an Autistic child into a traumatic environment is the norm (Gray-Hammond, 2023). Or even worse, threatening parents with either social care (safeguarding) or financial penalties for non-attendance.
  3. Competence
    • As previously mentioned, we need professionals that fully understand Autistic experience and culture. Everything from masking to monotropism, burnout to community-connectedness (Botha, 2020). Without competence, you can’t have safety because the person will not be aware of their own neuronormative viewpoints. The cycle will continue.

“I remember one clinician telling me, ‘there’s not much you can do with them’ as in therapy for autistic children.”

Jane, former CAMHS Professional

Where does this leave us?

We are pretty much stuck between a rock and a hard place. On the one hand, it’s a question of supply and demand. If we demand, theoretically they should supply. In reality, how many of our children do we need to throw under the CAMHS bus until they get the message? This doesn’t stop at a petition. As any SEND parent will already be aware, this is just one rung on a never ending ladder of fighting, advocating, and holding professionals, services, and our government to account. So please sign this petition and help us place our Autistic feet on the proverbial ladder.

References

Adkin, T (2023) Mask on, Mask Off: How the common understanding of Autistic masking is creating another mask. Emergent Divergence.

Baker, C. and Gheera, M. (2020) Mental health: Achieving ‘parity of esteem’. HM UK Government.

Botha, M. (2020). Autistic community connectedness as a buffer against the effects of minority stress (Doctoral dissertation, University of Surrey).

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.

Crane, L., Adams, F., Harper, G., Welch, J., & Pellicano, E. (2019). ‘Something needs to change’: Mental health experiences of young autistic adults in England. Autism, 23(2), 477-493.

Fulton, R., Reardon, E., Kate, R., & Jones, R. (2020). Sensory trauma: Autism, sensory difference and the daily experience of fear. Autism Wellbeing CIC.

Gray-Hammond, D. (2023) Restraint and seclusion in England’s schools. Emergent Divergence.

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

Gray-Hammond, D. and Adkin, T. (2022) Creating Autistic Suffering: Fabricated or Induced Illness, state sanctioned bullying. Emergent Divergence.

Gray-Hammond, D. and Adkin, T. (2022) Creating Autistic Suffering: Neuronormativity in mental health treatment. Emergent Divergence.

Gray-Hammond, D. and Adkin, T. (2023) Creating Autistic Suffering: Autistic safety and neurodivergence competency. Emergent Divergence.

Higgins, J. M., Arnold, S. R., Weise, J., Pellicano, E., & Trollor, J. N. (2021). Defining autistic burnout through experts by lived experience: Grounded Delphi method investigating# AutisticBurnout. Autism, 25(8), 2356-2369.

David Gray-Hammond 15 Comments
May 20 2023
Autism and ADHD diagnosis and the problem with cultural competency among diagnostic professionals

It’s no secret that diagnosis in the UK (and, in fact, the world at large) is increasingly difficult to access. I have written at length about diagnosis, such as this article on why getting a diagnosis is so difficult, and this piece considering the issues with current diagnostic criteria. Whichever way you look at the current situation, it’s pretty dire.

Currently, there are around 700,000 Autistic people with 122,000 people with am open referral for diagnosis between July 2021 and June 2022. In terms of ADHD, it is estimated that a total of 2.6 million people meet the diagnostic criteria. Autistic children are waiting up to five years for an appointment, with many adults having to go down the private route to obtain a diagnosis. The situation is not any better in terms of ADHD with people waiting (again) up to five years for assessment.

The problem, however, is more complicated than just waiting times. Assuming you can get a referral in the first place, many professionals have very rigid and stereotypical views on how autism and ADHD present in individuals. At this point, I feel it necessary to mention the long-held and deeply inaccurate belief that these diagnoses belong to little boys. This is a view that has been perpetuated by biased research and misinformed media offerings.

This culminates in a culture within which Autistic and ADHD individuals are misdiagnosed or rejected from the diagnostic process for not fitting the diagnostic criteria written in the DSM and interpreted by the diagnostician.

What we are talking about here is a lack of cultural competency. Specifically, we are talking about the concept of neurodivergence competency as conceptualised by Tanya Adkin and written about by the both of us. As you will see from the above linked article, it is not enough to be “neurodiversity affirming”, one needs to have the foundational knowledge and nuanced perspective provided by engagement with the community in question.

This is what is missing. Professionals who diagnose autism and ADHD rarely have cultural experience. In my opinion, if your job is to identify neurodivergence, you should be active in the communities to whom that identity applies. It is not enough to have studied medicine and read some relevant sections of a textbook. To understand what autism and ADHD look like in day-to-day life, professionals need to understand our culture.

This allows a person to see how ideas such as monotropism and the double empathy problem practically apply to neurodivergent lives. It allows them to have a practical understanding of how we mask and camouflage our neurodivergence. It presents the opportunity to engage with the power structures that oppress us and understand the numerous ways we are traumatised and how that might present.

It seems non-sensical that after years of waiting for a formal diagnosis, a person might be turned away on a technicality. When a lack of cultural competency stands between a person and a validation of their identity, something is fundamentally broken. People deserve access to and validation of who they are. Gatekeeping it behind services that are oversubscribed, underfunded, and that have no post-diagnostic support to offer is perhaps one of the most unethical things that a branch of medicine can do.

In truth, requiring a diagnosis fundamentally undermines the neurodiversity movement, but the current world is yet to move beyond such diagnostic models. Until such time that diagnostic professionals engage with the communities they exist to serve, there will be a significant power imbalance, and Autistic and ADHD people will be the ones paying with their lives and wellbeing.

David Gray-Hammond 0 Comments
May 17 2023
BBC Panorama is having their ethics called into question following the ADHD diagnoses expose

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:

Twitter thread by Emily Mckenzie

In particular I would like to highlight the end of the thread:

End of thread by Emily Mckenzie

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.

The BBC needs to do better.

David Gray-Hammond 0 Comments
May 16 2023
BBC’s ADHD private diagnosis scandal is the perfect example of irresponsible reporting

By now, you’re probably aware that the BBC is positioning itself as a whistle-blower in a scandal regarding the misdiagnosis of ADHD by private psychiatrists. While I am reticent to say that it doesn’t happen (of course it does, humans are awfully inexact creatures and psychiatry barely qualifies as a science), there are wider ramifications for this article that could go on to cause a great deal more harm than those at the centre of it can realise.

Service wait times for adult ADHD assessments are at an all-time high. Despite an NHS Constitution that states patients have right to access treatment within 18 weeks of a GP referral, some people are waiting in excess of 13 months. It isn’t surprising then that of the estimates over 1 million ADHD’ers in the UK, less than 10% are diagnosed (see link above).

All of this creates a tricky choice for those with the privilege of being able to access private assessment; continue to struggle unsupported, or pay to get your diagnosis privately.

Let’s step back for a moment and consider some issues that are pervasive across both NHS and private services. Psychiatry doesn’t just uphold the medical model of disability, they played a big role in creating it. The neurodiversity movement stands diametrically opposed to this pathologising of our existence. You won’t find neurodiversity affirmation all that common in any area of psychiatry, let alone cultural competence.

So, now we have an environment in which people are so desperate to get support that they will be willing to part with hundreds or even thousands of pounds fkr the privilege of being boxed into a pathological worldview in order to access said support.

Did I mention there isn’t really much support for ADHD beyond maybe getting ADHD medication?

Quite frankly, the diagnostic process is a nightmare. Very few professionals have a good grasp on neurodivergent experience and culture, and their diagnostic criteria are often restrictive and biased. The problem is not that diagnosis is too easy to obtain. If anything, it should be easier.

So when I see articles like the one the BBC has published, it turns my stomach to think of the effect it might have on an already broken system. Responsible reporters would not publish a piece like this in the manner that they have. What people will take away from it is that private ADHD diagnosis is a scam. It will justify the invalidation of many people’s diagnosis while simultaneously trapping those seeking diagnosis; should we choose between NHS waiting times and misdiagnosis or pay for a diagnosis that we might not receive and that no one will take seriously?

The deeper part of the problem is that people die because they don’t have the right diagnosis. If the BBC wanted to report on a diagnostic scandal, they could have chosen the complete lack of competency and up-to-date knowledge in those denying people diagnoses based on outdated stereotypes. Instead, they have risked erasing people.

With all of the pressures that exist for undiagnosed neurodivergent people, we should be helping them access support, not taking a blow torch to the already very thin ice they are standing on.

David Gray-Hammond 3 Comments
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