Search for:
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 9 2023
CAMHS, autism, and suicide: The disturbing facts

Autistic children and young people, like any young people, experience suicidal thoughts. In fact, due to the high rates of trauma in the Autistic experience of life, we are more likely to experience such thoughts. Despite this, services that are supposed to support us through these thoughts so often turn a blind eye. One service in particular turns a blind eye to the suffering of Autistic people; CAMHS is a service that will ignore young people to fatal consequences. This needs to change, Autistic young people deserve support through their struggles. I know this, my name is David; I’m not just a CAMHS survivor, I’m a survivor of a childhood suicide attempt that CAMHS could have stopped.

Autistic children and young people (according to the royal college of psychiatry) are 28 times more likely to think about or attempt suicide. Despite this, only 1 in 10 of children accessing CAMHS is Autistic (according to evidence submitted to the house of commons). What has to be so broken in the CAMHS system that so few of our children and young people are getting the support they need? I will admit that I have at times wondered if their refusal to help is some twisted form of eugenics. There’s no better way to eliminate Autistic people than to be complicit in their deaths.

As a child, I didn’t understand why the world at large was so cruel to me. I was bullied horrifically. At the age of 10, unable to take the suffering any longer I threw myself down a full flight of stairs. CAMHS did nothing. At 15 I hit such intense burnout that I could no longer attend school. CAMHS did nothing. By the age of 17 I was harming myself in numerous ways. CAMHS still did nothing. Eventually I became the problem of adult mental health services, but not before I experienced almost 10 years of drug addiction and psychosis.

No Autistic child should be left to suffer this way. We are not targets to be met, we are not a drain on resources. We are living, breathing people. CAMHS inability to successfully support us should not be an issue for families; it should highlight to services just how unfit for purpose they are.

According to the University of Newcastle, lack of access to good quality mental health support may be one of the major driving factors behind the disturbingly high rate of suicide in Autistic communities. CAMHS are essentially complicit in not just the suicide of Autistic children and young people, but also Autistic adults. Autistic children become Autistic adults, and we take with us the trauma of our past. By failing us in childhood, they set us up for an adulthood of mental health issues and the almost unavoidable potentiality of suicidal ideation and attempts.

Our lives are on the line, it’s time for something to change.

Diagnostic overshadowing is also an issue highlighted in this JAMA article. Diagnostic overshadowing is something parents of Autistic children and young people experience a lot in CAMHS services. They are told that their child’s distress is a part of their autism and that nothing can be done. This is a refusal on the part of CAMHS to acknowledge the harm that power dynamics and the wider world do to Autistic children. Suffering is not part of the diagnostic criteria, and they are fully aware of this.

Until such time that services like CAMHS not only open their doors to Autistic services users, but also become culturally competent in our experiences and presentations, We will continue to mourn the deaths of more and more of our young people. We shouldn’t be burying our Autistic children, we should be watching them grow and develop into the wonderful adults they have the potential to be.

We will not sit by while our children are killed by a system that is cold and uncaring.

Make a difference today by signing this petition.

More information on the CAMHS Crisis page.

David Gray-Hammond 2 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
Jun 17 2023
Autistic people are dying early; medical perceptions of pain are contributing

I recently posted about Autistic people and the expression of pain. One thing that has become clear to me is that not only do we not have the same relationship with pain as non-Autistic people, people in the wider environment constantly invalidate that relationship because they don’t want to believe our lived experiences.

Original post on Twitter

There are a lot of aspects of Autistic life in which we don’t highlight the disparity in cultural competency amongst professionals. Unfortunately, healthcare is not a battle we cam choose to walk away from. Our lives literally depend on being taken seriously and treated respectfully. There are some troubling statistics around Autistic life expectancy and mortality. In my opinion, there is correlation, if not a causative relationship between medical mistreatment of Autistics and these harrowing statistics.

Of the statistics, I have seen life expectancies around the age of 36 to 39 years of age (see here and here) for Autistic people. I have also seen suggestions that we are 51% more likely to die in a given year than the general population. I don’t think I need to push the point much further. It is clear that we are not a demographic that necessarily has the best outcomes in life.

Our experience of pain is intimately linked with our sensory experience. In particular, interoceptive differences mean that we can have a completely different response to pain than our non-Autistic peers. Monotropic brains mean we might not be able to stop thinking about the little pains, but may not even notice something significant or life-changing.

The way we embody pain is different as well. Autistic people are known for having different physical expressions, and when you throw in the significant relationship between the Autistic community and the chronic pain community, we can see why an Autistic person may not appear to be in as much pain as they claim to be.

This doesn’t absolve medical professionals of their lack of understanding. When a person works in healthcare, they should be taking people seriously, regardless of whether an ailment presents in the way that is expected or not.

I posit that dismissive attitudes amongst medical professionals and medical gaslighting lead to further health complications from i jury and illness. To consider it another way, if doctors took us seriously, we would probably live longer and happier lives.

For those working in healthcare, I applaud the care you give to many, but there is so much not being done for Autistic people that it can not be ignored. Autistic people are dying every day from ailments that needn’t have been terminal. Next time someone tells you their experience, believe them.

David Gray-Hammond 2 Comments
Jun 2 2023
Autistic Parenting: Parenthood in it’s infancy

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

When Katie and I set out to write today, we knew we wanted to do something new. While there has been a great deal of discussion around parenting school-age Autistic children, Katie and I are both parents to younger children and feel that there is somewhat of a void in discussions around the early years or parenting an infant.

We do not position ourselves as experts, this is more of a journey into our own discoveries, the experiences we have, and sharing in the joys and struggles that so many Autistic people experience as they grow into parenthood.

“Nothing quite prepares you for parenthood, no matter how organised you are and how much the baby was planned.

The late nights, the interrupted sleep, the constant feeding and nappy changing, and the emotions of it all!”

Munday (2022)

Being Autistic and a parent is a unique and wonderful challenge. It represents a leap into unknown territory, and requires us to ask the question of how we would like to have been parented.

What is it like to parent an infant as an Autistic person?

At times being a parent can feel very surreal. There can be a disconnect between the reality of your child’s existence, and the realisation that you have created that child. Many people speak of having an instant bond with their child, but for many of us it can take time to feel that deeper connection. This doesn’t make us bad parents, it makes us human beings who are processing the reality that we are personally responsible for another living being.

Whether you are a biological parent, or a foster or adoptive parent/carer, it can take time to process the reality of parenthood; you now have another human being who looks to you for survival, protection, and love. This love does not always come easily. Especially after a traumatic birth, for parents living with post-natal depression (it doesn’t only affect those who give birth), and those who have had traumatic childhoods; which Autistic people experience at a significantly higher rate than non-Autistic people (Gray-Hammond & Adkin, 2021).

Besides the somewhat philosophical musings of love for your child, there are some technical challenges to being an Autistic parent to an infant.

“He’s just started the ‘terrible twos’ stage – awful name but you get what I mean – and he finds it hard when Daddy leaves for work. So, he throws himself down and makes these noises which prod and poke at my very soul.”

Munday (2022)

Sensory challenges are everywhere as an Autistic parent, there are noises, smells, and for some reason babies are permanently sticky. Where the hell does the stickiness come from? David in particular struggles with sticky things, it is a sensory challenge that turns his stomach. For David, stickiness can remain for days causing him to pick at his skin and repeatedly wash his hands. This is unsurprising given the intersection of OCD with Autistic experience (which David and Katie both share, more on this intersection here and here).

Nappy changes can also be quite upsetting for Autistic parents, issues around cleanliness, olfactory senses, and children who perhaps try to escape during nappy changes can result in a very overwhelming experience. The nappy changing experience can be increasingly exhausting, especially as infants reach an age where they can begin to move around. It is easy to be hard on yourself for being overwhelmed, particularly in a context where you have to “be the calm”.

On the topic of “being the calm”, it can be frustrating trying to demonstrate emotional regulation when it is not something you excel at yourself. Autistic parenting can leave you constantly dysregulated meaning that often you have to mask your struggles for the sake of your children. While neurotypical parents may also deal with this, we have to acknowledge the monotropic split (Adkin, 2022) that can arise from doing this constantly as an Autistic person.

There are a lot of aspects of parenting an infant we could discuss, but in order to give them the space they deserve, we will address them each in separate installments of this series. In the mean time, just be safe in the knowledge that Autistic parents everywhere have different strengths and struggles, and like many things, there is no one-size-fits-all approach to being a parent/carer.

David Gray-Hammond 0 Comments
Verified by MonsterInsights