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Understanding Autistic people’s relationship with drug use

In the early days of my advocacy my entire focus was on the relationship between being Autistic and experiencing addiction. This was particularly relevant to my life as a person who was early into recovery from drug and alcohol addiction. As my advocacy grew, it became clear to me that two things were needed: 1) there needed to be more research into this topic. 2) addiction was not a standalone issue in the lives of Autistic people, and is intimately connected to the way that society treats us. In this article, I hope to reflect on the current knowledge around autism and substance use.

Important terminology for considering addiction among Autistic people

Social Capital-

This can be seen as the networks of people in a person’s life. Family, friendships, and professionals all connect together to create the social capital that an Autistic person has access to.


Not all substance use is addiction. Self-medication is any use of drugs or alcohol (when not prescribed by a healthcare professional) to combat difficult aspects of one’s physical or mental health.


I conceptualise addiction as the habitual and compulsive use of a substance despite serious negative impacts in one or more domains of a person’s life.

Understanding the prevalence of substance use in Autistic populations

There is growing evidence that substance use and addiction is a significant issue within our contemporary understanding of Autistic experience. I have previously written about my own experiences of addiction, but over time I have been privvy to conversations about just how prevalent and diverse these experiences are in our community.

Autistic people often use drugs and alcohol to self-medicate. Weir et al (2021) found that Autistic people were more likely to report using recreational drugs to self-medicate their mental health. This resonates deeply with me as my own drug and alcohol use coincided with the emergence of my schizophrenia at the age of 18. Arnevik & Helverschou (2016) and Ressel et al (2020) demonstrated prevalence ranging from 1.3% to 36% among those already diagnosed Autistic with the former also demonstrating that 2% of those diagnosed with a substance use disorder (SUD) were also Autistic. Comparatively, the World Health Organisation states that Autistic people make up 1% of the global population.

From this research we can draw two conclusions. Up to a third of Autistic people have reported issues with substance use significant enough to be recognised by academic literature, while Autistic people in general are twice as likely to be found among those with an SUD diagnosis as they are in the general population. I believe this demonstrates the point I have made repeatedly; this is a significant issue for Autistic people.

Why are Autistic people using drugs and alcohol?

Livingstone (2021) notes that a significant factor in substance use among Autistic people is the camouflaging of Autistic traits. This is poignant to myself; drug use allowed me to exchange my Autistic identity, one that was not well accepted, for one of a drug user. One might ask why being a drug user is better accepted than being Autistic. I would highlight that drug use gave me a shared interest with my peers that was not considered abnormal to discuss with them. By leaning into our interest in drug use, I was able to infodump without boring them.

Livingstone (2021) goes on to further discuss compensation and self-medication and it’s links to decreased wellbeing. While we may compensate for our struggles with drug use, it is ultimately correlated with an increased level of struggle. Again this links to my own experiences wherein self-medication ultimately led to a worsening of my mental health requiring further substance use to cope. It impacted upon all domains of my life and caused long lasting damage to my physical health.

Haasbroek & Morojele (2022) takes this further by commenting on the numerous variables involved in substance use behaviours of Autistic people. They comment on how despite the historical assumption that autism is a protective fact in substance use, it appears that in fact it is correlated with an increased likelihood of substance use. I find this interesting as I have met many professionals who have told me that Autistic people “don’t use drugs”, an exceptionally fallacious statement in it’s on right.

How does further neurodivergence impact drug-use?

Huang et al (2021) highlights findings that “behavioural comorbidities”, with ADHD and OCD getting a specific mention, actually correlate with an increased risk of drug and alcohol use. When a person is AuDHD or has co-occurring mental health issues (such as OCD) it stands to reason that they will self-medicate in the absence of meaningful support, an issue that is particularly topical given the current issues with services like CAMHS in the UK. Lai et al (2019) indicates that co-occurring mental health issues are rife in Autistic populations, making the correlation with substance use even more significant for professionals supporting Autistic people.

Further thoughts on the intersection between autism and substance use

With Autistic people representing such a large portion of substance users, one might wonder why addiction treatment services still do not screen for common neurodivergence upon initiation of treatment. There are numerous moving parts to the success of those in treatment, in particular, the social capital of a person. Ressel at al (2020) notes reduced social capital among Autistic people. This in my mind is reflective of the social isolation that we see within our community, and highlight the importance of community-connectedness in online spaces.

If we consider reduced social capital to be a contributor to minority stress, we can then further extrapolate from Botha (2020) that the Autistic community and it’s various spaces may be the protective factor in substance use that could save lives. Services should not only screen for autism, but also signpost individuals to Autistic-led spaces.

While services themselves need to have a serious think about the literal accessibility of said services, more attention needs to be paid to the positive input of the Autistic community into the recovery of Autistic people struggling with addiction and other substance use related issues. This community saved my life, and I am certain it could save many more. Social capital is available to us, we just need to know where to find it.

Being an Autistic bullying victim led to my schizophrenia

At this time of year I often find myself reflecting on my experience as a Schizophrenic person; October 2023 marks 15 years since it became clear to me that I have a psychotic condition. The world is abjectly cruel to Autistic people. Life as an Autistic adult is incredibly difficult, and my life as an Autistic young person was no different. School was a nightmare for so many reasons, but one of the defining parts of my experience was the incessant bullying I experienced. I recently discussed my experiences with being Autistic and Schizophrenic, but I think it is important to recognise how bullying by both students and teachers contributed to my psychosis.

My experience as an Autistic bullying victim

The bullying started in Junior school. For those outside of the UK, junior school is years 3 to 6, roughly aged 7 to 11 years old. Students had realised I was different. I was far beyond them academically, I wasn’t interested in sports or typical “boy” things. I communicated differently and socialised differently. Teachers at the time would tell my mother that the bullying was my fault for being different. If only I would act more like everyone else, I would be much happier. I was undiagnosed Autistic, and rather than accept my differences, teachers sought to extinguish them.

Secondary school (high school to my American readers) was no different. The main addition was that I was being assaulted physically on a daily basis. Every part of who I was became a target for other young people. Even those who had no record of bullying would treat me badly. I was unable to trust anyone, least of all teachers. My school was known as a good place to send your children, and yet the teachers at that school drove me to the point of wishing I was no longer alive. It was a frightening and lonely experience.

How does this relate to my Autistic and Schizophrenic experience?

I experience a great deal of paranoia. Voices have historically focused on how I am not real, the world is not real, that people are planning to harm me. They have also tried to convince me that I am unsafe with people I love. This in itself is an isolating experience, but I feel it is deeply connected to the trauma of my educational environment. Teachers would lock me in rooms, shout at me, tell me I was lying about the way I was treated in school. I was gaslit and abused by the people who were meant to nurture my learning. The constant fear of bullying and assault by other students left me feeling as though I could be attacked at any moment.

I believe that the hallucinations and delusions I have experienced as a Schizophrenic person are intimately linked to the way I was treated in school. School may not have been the whole story, but it formed a great deal of the trauma that I struggle to reconcile to this day. Even writing this, I feel a sadness for the child I wasn’t able to be. A child that needed support and protection from the school, but instead learned that his reality and the people within it was untrustworthy and volatile. The truth is that since my school day’s I have felt alone, trying to make sense of the cruelty of this world. All because I was different.

What was the fallout of bullying a young person into schizophrenia and psychosis

In October 2008 I began hearing voices. A week later I would smoke cannabis for the first time. Within a month I was drinking and smoking cannabis almost daily. By the end of 2010 I was daily using drugs such as mephedrone (MCAT), ketamine, ecstacy, and speed. By 2013 I was using opioids such as tramadol and dihydrocodeine (DF118) on a daily basis alongside high doses of Diazepam (Valium). Within a year I would be a patient at the local A+E on a weekly basis for morphine and oxycodone overdoses. In 2015 I was faced with a difficult and life changing choice; get sober or die. I did get sober, but it cost me two lengthy stays on a psychiatric inpatient ward.

We have to stop the bullying of Autistic young people

Autistic people report bullying in up to 50% of cases. Remember, that’s the ones who report it, many of our young people deal with this pain in silence and isolation. I highly recommend reading this study by Pearson, Rose & Rees (2023) about the victimisation of Autistic people. Bullying and victimisation is costing our lives every single day. Even those of us who do not die in the literally sense face the loss of our happiness and connection to the world. This kind of bullying tears apart the mind and leaves us to try and reassemble ourselves in a world that keeps undoing our healing. We deserve better, our children deserve better.

It’s time the world did better.

Autistic people, energy accounting, and boundaries

In my day job, I talk to a lot of Autistic people. I mean a lot of Autistic people. One of the most common questions I am asked is how to better account for limited reserves of energy and cognitive resources. The answer sounds deceptively simple, but in reality, it can be a really complicated practice. I’m talking about the creation and maintenance of boundaries in Autistic people’s lives.

Why are boundaries so complicated for Autistic people?

As Autistic people, we have grown up in a world that doesn’t care for our boundaries. We are taught from a young age that our needs and wants do not matter and that we should live our lives for the comfort of others. This attitude is most pervasive when we look at the high rates of trauma in our community. We also can not forget the effect of being late-identified and the role of intergenerational trauma.

For many Autistic people, our earliest memories are of people denying our sensory needs, invalidating our communication styles, ignoring the very things that would help us participate more equally in a world not designed for us. This means that by the time we reach adulthood, we are much less likely to be willing to maintain our own boundaries.

What does ignorance of boundaries teach Autistic people?

Autistic people are often accused of overstepping boundaries, especially in childhood. I would point out to the casual observer that we expect Autistic children to give more to society than society is willing to reciprocate. We teach Autistic children that boundaries do not matter and then penalise them for lacking awareness of social niceties.

There is then the wider issue of Autistic wellbeing. Adults with poorly maintained boundaries will inevitably experience lower levels of wellbeing than people who are able to sagely self-advocate. Autistic people often spiral in and out of burnout, unable to sagely set boundaries that are vital to their energy accounting.

How does ignorance of boundaries effect Autistic identity?

One aspect of the importance of boundaries that is rarely talked about, but very important, is that of its effect on our sense of identity. In my own life a lack of clearly defined boundaries kept my queerness closeted for decades. Because I was not able to advocate for.myself to others, I could not do the internal advocacy work I needed in order to identify my queer identity.

No one talks about it, but when you have grown up being constantly invalidated, you absolutely have to advocate to yourself. We have to battle and dismantle the internalised ableism and normativity that has kept us trapped within societies definition of “us” rather than exploring what the means to ourselves.

How can Autistic people begin to maintain boundaries?

Autistic people can begin to identify and maintain boundaries through self-exploration. For some, this may be an isolated affair, while others may engage with peer mentorship. This is where a sense of AuSociality becomes important. By socialising Autistically with Autistic people, we can begin to learn what our Autistic profile is and, therefore, what our unique set of strengths and struggles are.

When we know who we are and what we need, we are in a stronger position to begin self-advocacy to the wider world, and subsequently, we can begin to improve our sense of wellbeing.

Five things that help me when I’m experiencing Autistic burnout

Autistic burnout can present itself in many different ways, not just the depressive state that observational models have taught us to expect. Despite assertions to the contrary, sometimes burnout is more than a need to withdraw.

Conceptualising Autistic Burnout

One might describe burnout as

“Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”

Raymaker et al (2020)

Of course, due to the infinite possible interactions with one’s Self and environment, there are infinite ways that Autistic burnout can present. Raymaker et al (2020) go on to conceptualise the mechanics of burnout.

Figure taken from Raymaker et al (2020)

Using this, I can begin to explain the things that help me when I am experiencing Autistic burnout.

What helps me with Autistic burnout?

  • Sensory Input
    • A good sensory diet is helpful to myself. I use dark rooms with colourful lighting and star projectors. I also use an oil diffuser. Besides the typically expected sensory input, I might mention that physical activity that engages my proprioceptive sense can also help with waning interoceptive accuracy.
  • Nesting
    • I have discussed in a previous article my AuDHD habit of nesting. While having a sensory safe space is a part of this, what is also important is that this space is safe from intrusion by the outside world. Sometimes, I need space to think and process whatever is going on in my mind in order to function in a world that can be quite hostile.
  • Boundaries
    • This one follows on quite nicely. We have to not only understand our strengths and struggles, but also enforce boundaries that compliment them. Learning to say no can feel quite villainous at first, but only when we make space for ourselves can we properly energy account. It is okay to make space for yourself.
  • Trust yourself
    • As Autistic people, we are constantly invalidated and gaslit about our experience. It is vital that we learn to trust ourselves on matter that pertain to ourselves. Nothing will drain you quicker than constant self-management. It is also impossible to enforce boundaries when we believe they are uneccessary or an overreaction.
  • Slow and Planned transitions
    • Autistic people experience cognitive trauma when they are forced to rapidly disengage and re-engage with different tasks and demands (more on this here and here). It is important that we slow down our transitions during burnout as in my experience we are more prone to that cognitive trauma during these time.

Final thoughts

As with everything, different things will help different people. The most important thing is that we treat ourselves with the same kindness that we would another. Humans of any neurocognitive style were designed for the cognitive equivalent cruising speed, it is not sustainable to move at maximum velocity without a break.

More than anything, you need to know that Autistic burnout is a logical consequence of our intensely hostile world. You are not worth less for struggling, and you are not alone.

Why is the Autistic community so important for Autistic people?

Autism is often conceptualised as a condition which nullifies a person’s ability to socialise. Because of this, Autistic people are often viewed as asocial and devoid of community. Despite this, the Autistic community is a rich and vibrant place with a sociality all of it’s own making. As I discuss in my book The New Normal, Autistic people can be better conceptualised as being AuSocial than asocial, with a culture, language, and social customs that are far too often ignored by those who wish to paint us in a tragic light.

In terms of community, we know that humans are inherently social beings, indicating that the belief that we lack sociality and community is one of the many ways that Autistic people are dehumanised by normative society; but just what is it about the Autistic community that is so vital for us?

Community and wellbeing

Jose, Ryan & Prior (2012) indicated that in adolescents, there was a positive relationship between social-connectedness and perceived wellbeing. Across the domains of family, school, peers, and neighbourhood, increased connectedness improved the wellbeing within those studied. It is clear that being part of a community is positive for many people, but this is where it is complicated for Autistic people. We are a minority group that often finds themselves at the periphery of communities.

Due to perceived asociality, we find ourselves ostracised within the above mentioned domains due to the stigma associated with being Autistic (Kasari & Sterling, 2013). This extends to family with increased stress levels among the parents of Autistic people correlating to social isolation for the same reasons (Dunn et al, 2019). Loneliness has become such a feature of Autistic lives that national charities like the National Autistic Society are publishing information pages specifically about loneliness.

Loneliness can have a significant impact on our mental health, the charity Mind mentions the increased risk of depressive or anxiety issues, even indicating a relationship between our finances and loneliness. Lee, Cardigan & Rhew (2020) found that increased loneliness during the COVID-19 pandemic has a causative relationship with increases in rates of depression among young adults. An interesting anecdote to mention here is the number of Autistic people who reported both a reduction in loneliness during this time as people connected virtually, and an increase in wellbeing that was as a result of the move to online socialisation.

Minority Stress

Minority stress is conceptualised as the increased social stress that minority groups experience through systematic exclusion and oppression within normative society (Botha & Frost, 2020). Issues such as difficulty accessing affirmative healthcare, social isolation, employment discrimination, and hate crime all contribute to minority stress (this is far from an exhaustive list). These individual factors come together to form a great deal of the negative and traumatic experiences that Autistic people have as a minority group.

What is interesting in the context of community is that Botha (2020) found that community-connectedness, that is, being a part of a community of supportive peers, actually decreased the effects of minority stress. This could be because of the knowledge of shared experience as well as increased self-advocacy, coupled with the ability to socialise AuSocially.

The Autistic Community

The Autistic community has provided a space for Autistic people to experience real community connectedness outside of deficit based models of autism. This is a space where we are less likely to experience discrimination based on our communication, and more likely to find shared experiences. Through knowledge exchange, we are able to push back against stigma and discrimination while learning how to advocate for our own rights.

I believe it is clear why this is so important to Autistic people who have historically had their narratives written for them by people with no lived experience of their identity. Giving Autistic people the power to form their own connections in their own time and space allows for the rewarding feeling of friendship and self-actualisation. Without this community, I believe our wellbeing would be significantly decreased. For me personally, it has been life saving, and has fundamentally changed the trajectory of my life.

This is why people exploring an Autistic identity need to be encouraged towards Autistic community spaces. It allows them to mitigate the minority stress that is so much more intense when we feel isolated from our peers. This is why it is important that members of the Autistic community are providing education around autism with schools and other professional environments. We are able to signpost Autistic young people towards helpful community spaces and mitigate the discrimination and social stress that they will inevitably experience.

Without this community, many of us wouldn’t make it. This is why it is important for us to make this a place that is accessible and welcoming to all, and not to gatekeep it from those who may have a harder time accessing it.

Our lives depend on it.

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.

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.

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.


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.

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.

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.

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