AuDHD Burnout

My speech at the 2025 London Autism and ADHD Show

I am Viv Dawes autistic advocate, trainer, consultant and author. I am a late identified AuDHDer and parent of a ND teenager. I am very late to the party realising I have a PDA profile, although I want to be clear I have always hated parties anyway. The epiphany that I had regarding having a persistent need for autonomy has been even more enlightening than realising I was autistic. It has helped me truly understand that indeed I really am a complete control freak – no honestly, I jest, I am not a control freak but I do love rules – it's just the rules do not apply to me!

Some of what I share with you today is not easy listening. Please look after yourself and if anything I share is triggering then please take some time to co regulate with another person if possible and process your thoughts and emotions best you can.

I will be speaking about how so many Autistic people and AuDHDers are failed by many of our systems, meaning we are overrepresented statistically around things such as victimisation by people we know, addiction to drugs and alcohol, getting caught up in offending, ending up as mental health inpatients and suicide. This is something that keeps me up at night. It makes me angry and I am passionate about seeing things change- so that I can leave this world knowing my son has a better future than the one I fear he could have if they don’t.

Prison

I have worked with neurodivergent people for over 30 years in a number of sectors, inc homelessness, with young people, in prisons and in addiction recovery. For most of those years I had absolutely no idea why I felt this strong affinity with so many of my clients, but now I understand. Working in prison meant I met a number of people who you could describe as dangerous, but mostly they were neurodivergent people like me, my mother and many of my friends, who were traumatised and had been failed throughout their lives.

Most of my clients were people who had no idea they were ADHD let alone also autistic often and many times PDA, but they were very aware of how they had been significantly let down by literally every system they had been in and had fallen through the gaps – in education, the care sector, the mental health sector and the criminal justice system.

There is a school to prison pipeline, with many of those on that conveyor belt who are unidentified and burnt out neurodivergent children and young people- who are labelled as lazy, naughty, disobedient, defiant, school refusers and unwilling to learn. I know so many ex-offenders who could have avoided prison and even addiction if they had been identified when they were children and given the support they needed. Many however came from low income families and from more deprived areas where there were not the opportunities that children from middle class areas had.

There is now somewhat more knowledge and acceptance around neurodivergence and for example all prisons now have neurodiversity managers. But, if I can just point out that for example at HMP Highdown in Sutton, where there are approximately 1200 prisoners, there is one, yes just one neurodiversity manager. There are rough estimations that over half of prisoners are neurodivergent (including acquired neurodivergence such as brain injury), its actually probably much higher. Many of those will be ADHD and AuDHD. So potentially there are at least 600 prisoners in HMP Highdown alone who are neurodivergent getting very little or no support. Many are trapped in a revolving door of addiction, offending and prison, with limited help to actually break this cycle in a way that works for them as a neurodivergent person.

Why do you think so many ADHD and AuDHDers are in prison? with the prison population likely made up of mostly neurodivergent people and very high numbers with substance misuse struggles. The answer is simple:

Stigma

Stigma leads to being missed and misdiagnosed

Stigma leads to no access to appropriate support and ADHD medication

Stigma means millions of unidentified ADHD and AuDHDers self-medicate with class A drugs and alcohol and live lives on the edge of existence, barely surviving.

Mum

When you are identified as neurodivergent much later in life, you can grieve the lost years spent not understanding yourself, not understanding how to have boundaries and not knowing how to keep yourself safe. You can experience an intense sorrow as you start to appreciate the levels of injustice you have experienced throughout your life. For me I also looked back at my mother’s life and grieved for her too. For the neglect by so many organisations, including the probation service, police, GPs and mental health professionals who were meant to support and protect her but had actually gaslit her and traumatised her physically, sexually, emotionally and mentally. My mum was the sweetest, kindest person you could meet and died before she could ever discover she was autistic and possibly AuDHD. Mum’s suffering is one of the reasons I am so determined to help as many people understand burnout and crisis as possible. Because I watched her live miserably and barely just surviving for so many years, due to being missed and misdiagnosed, mistreated and over prescribed with every anti-psychotic you can name. We still see so many women and people assigned female at birth who have been labelled with various personality disorders, but the go to often being EUPD (Emotionally Unstable Personality Disorder). EUPD has in my opinion been the modern-day diagnosis of hysteria that used to be given to women many years ago. It has led to people like my mum being dismissed as attention seeking, told they are manipulative, controlling and unable to form positive relationships and then made to jump through various hoops to be able to remain a patient. As soon as many of these individuals are correctly identified as autistic they are discharged and told to access more appropriate services which too often do not even exist. They are then left on antipsychotic medication that quite honestly has often done more harm than good and left with no one talk to about what it even actually means to be autistic and have no idea they are also ADHD.

For many years my sisters and I saw our mother’s struggles through a mental health lens. What actually were years spent traumatised, exhausted and burnt out as a neurodivergent person, were seen as nervous breakdowns, psychosis, a personality disorder and bipolar. She was restrained, detained, injected with liquid cosh, over prescribed and held against her will in psychiatric hospitals many times.  She also experienced tactile hallucinations which got worse when she lived alone, probably due to the isolation and loneliness. On one occasion in her late 60s she was an inpatient at the hospital from where we get the word ‘bedlam’ (a 19th century asylum). During this stay she was withdrawn so abruptly from an anti-psychotic medication that she had several seizures that almost led to permanent brain damage. When I challenged the hospital management about her care they denied any wrong doing and told us a pack of lies. Thankfully mum did recover physically but each time she was mistreated and traumatised it left scars.

Mum was resilient because she had to be in order to survive a brutal system that didn’t value her and mistreated her so badly. My wish is that I could turn the clock back and see her thrive rather than always having to be so resilient. And this is how it is with so many autistic and AuDHD folk, we are surviving when we could be thriving. We should not have to be resilient in situations and in environments that are essentially traumatising us, exhausting us and causing us to burn out.

As a child I loved collecting things (obviously) and used to collect mum’s brown medicine bottles- in order to pretend being a chemist shop. I would line the bottles up (obviously) and so learned all the different names of the various medications she was prescribed. I can recall all the occasions when mum fell apart and experienced what I now understand was burnout.  All the times she eloped, terrified and ran screaming in the middle of the night through the streets of South London in her nightdress. I remember the threats to kill others, chasing my dad down the stairs with a carving knife in a manic state. I think mum threatened to kill all of us at one stage or another, and this was not because she intended to do this, but in meltdowns, in a state of fight flight, an autistic and AuDHD person might not be unable to control their actions or what they say.  I still sometimes flinch when I hear crockery being stacked away due to the kitchen meltdowns mum had when I was a child. Of course at the time we just thought she was mad. She was however living with trauma and unbelievably high levels of stress.

AuDHD Burnout

When we mention burnout people think they know what you mean and this is because they liken autistic burnout to occupational burnout. They are different. And when it comes to AuDHD burnout we are talking about burnout that is an amplified experience of the tension there is, the push and the pull, the chiaroscuro, the light and shade of being both autistic, ADHD and often a smorgasbord of neurodivergence. For example it’s common for AuDHDers to also experience OCD (approx a quarter) and in burnout OCD can also be significantly amplified.

Autistic people are what’s known as monotropic and AuDHDers are likely to be even more so. Being monotropic means you focus more intensely on fewer things and so this is why busy, unadjusted environments can be so traumatising for us. Environments that are more suitable for polytropic brains means monotropic people are often switching focus constantly and being yanked out of attention tunnels- rather than being able to enter uninterrupted flow states, where we can experience a deep sense of rest. Flow states are actually crucial for our mental health as AuDHDers and spending prolonged periods of time in environments that are not designed for monotropic people will mean we use up more of our capacity and are more at risk of burnout. One downside of being in deep attention tunnels for long periods is that we might also miss our body’s internal signals such as hunger, thirst, pain, emotions and even exhaustion, which can also lead to burnout.

Between 50-80% of autistic people are also ADHD and therefore more likely to be more monotropic. For some AuDHDers their experience of burnout, much like my mum’s experiences, can look very different to autistic burnout. I know so many people whose experiences of burnout led to a significant crisis, that included substance use, suicide attempts, making threats during meltdowns that were misinterpreted, time spent under section and even prison sentences. One person I have known for many years now, who was missed and misdiagnosed as a young person, sought solace from their racing intrusive, dark thoughts and obsessions in drink and drugs from a young age and consequently went from one crisis to another for years, almost dying on many occasions. In their 20s they were given a diagnosis of EUPD. Despite this person’s family history of autism and ADHD, at no stage did any professionals even suggest them being autistic and ADHD, and yet had they– this individual might have avoided so much pain and so much suffering. It took for them to go through burnout and reach crisis over and over again to eventually get diagnosed as autistic and then such a significant crisis that they ended up in prison twice in just over a year; it was then actually prison staff who felt this person was also ADHD.  This led to a diagnosis, being prescribed ADHD medication and this individual has not relapsed or returned to prison since.

When we burnout as AuDHDers there is exhaustion, the kind that is not resolved by sleep. We might not appreciate we are becoming completely exhausted and may resist stopping in order to rest our restless minds, emotions and body. Alexithymia, which is a common autistic and AuDHD experience, means we do not have the words for the emotions and dysregulation we experience, we can be oblivious until it is an emergency and even then we might not be able to interpret or explain what we are feeling. We might not stop until something stops us, which for many might be being detained in some way. The more trauma there is and the more shame we carry, the more we can push ourselves, hard, further draining our mental, emotional and psychological resources. In what I can only describe as an almost manic state, there can be such an increase in meltdowns, suicidal thoughts and attempts that it is hard to know what can help. Exhausted, unable to rest, hypervigilant, full of anxiety and wired with paranoid racing thoughts, we can also experience hallucinations. This can present as psychosis but is more likely due to sensory overload, differences in our chemistry and stuck in attention tunnels with looping, loud intrusive thoughts. Throw in things like OCD and you have a perfect storm. Many reach for something or relapse into addiction again to try to calm their heightened anxiety. We withdraw from others, which may look like isolating away from people but it’s a way to try to be safe. We stop our usual activities, not able to focus on things once enjoyed. Demand avoidance escalates dramatically, as does risk taking. No one would probably guess we are exhausted.

I am sure that for many of those autistic people who have so sadly taken their own lives it was most likely due to burnout. The thoughts can literally come out of nowhere. One of my cousins who was also autistic and probably AuDHD, took his own life – exhausted by the world, never feeling acceptable enough and never finding where he felt safe to be his authentic self. Suicide is the biggest cause of death in autistic people. The biggest. We are in fact 9 times more likely to die by suicide. Why? Because this world is exhausting for autistic and AuDHD folk. Because of the levels of stigma there still is, the levels of trauma, the lack of acceptance and understanding, the lack of adjustments and accommodations in education and workplaces and the attempts to change us through compliance-based ‘support’.

When you are too exhausted to mask then what is internalised becomes externalised. What is hidden becomes exposed. A lot of AuDHDers I know have ended up in police custody, detained under the mental health act due to meltdowns that are misunderstood and dealt with very badly by first responders.  Autistic people and AUDHDers are routinely restrained unnecessarily by police officers during meltdowns and many have died as a result. If you are autistic or AuDHD and black then you are 5 times more likely to have force used against you, you are more likely to be restrained, cuffed and tasered; you are also seven times more likely to die following restraint if you are black.

Addiction

Autistic people and AuDHDers are too often defined by crisis. Many autistic people especially girls, women and people assigned female at birth are still not being identified until later in life. And how are they identified? Usually because they have hit crisis and burnt out. Then like so many of my friends and family it can take years before they realise they are not just autistic but also ADHD. For many, discovering they are AuDHD happens after years of spiralling into addiction and mental illness. In one recent study almost 80% of the mostly AuDHDers who participated reported daily or weekly use of alcohol and drugs. Addiction in neurodivergent people (addiction being a neurodivergence in itself) is often the result of trauma and autistic people and AuDHDers are more likely to have experienced trauma due to the sensitivity of our autonomic nervous system. It is also due to differences in how our brain deals with dopamine and other neurotransmitters such as GABA.  These hormonal, chemical differences means that our behaviour is not always communication. Being monotropic, autistic people, ADHDers and AuDHDers can become intensely focussed upon things that are helping us feel more regulated inside, then it becomes the only focus. And for so many this can mean self medicating with drugs and alcohol.

 Menopause

It’s really important for me as a post menopausal person to mention hormones because they have such a huge part to play in burnout for many neurodivergent people. For women and people who experience periods, menopause can be a rollercoaster ride in the fires of hell. For an AuDHDer there can be extreme sensory and executive functioning issues - brain fog, working memory challenges, emotional dysregulation and its no wonder when you realise that oestrogen levels drop by as much as 65% during peri-menopause. This has a huge impact upon dopamine and noradrenaline (as dopamine is linked to oestrogen). No one tells you these things! Some of my mum’s worst experiences were probably when she was peri menopausal. You are more likely to burn-out during and because of what are known as major biopsychosocial transitions such as puberty and menopause; the impact of menopause upon neurodivergent people is only now coming to light with recent research by Christine Jenkins and Rachel Moseley. Yet still menopause is often rarely considered by people as a factor in their struggles; I meet neurodivergent people in their forties who are not in any way prepared and with a very poor understanding of what can happen at this time of your life.

I also want to mention PMDD, Pre-menstrual dysphoric disorder, which is very common in neurodivergent people who have periods, in fact it is possible that as many as 46% of ADHDers and AuDHDers who have ovaries also have PMDD. The turmoil, emotional dysregulation and exhaustion experienced when you have PMDD can significantly exacerbate burnout. PMDD is treatable and as someone who has family members with this condition I know how distressing and life changing it can be.

For many of you here, you are burnt out, neurodivergent, menopausal parents, caring for a child or children going through AuDHD burnout. You might not have embraced being neurodivergent yet but I encourage you to do so.  I want you to know you are not alone and I know your pain. I have been there. I know how hard it is to stop and rest because we are often our child’s only co regulator and safe harbour. We are also too often juggling everything, preparing their bland, beige dinner whilst chasing the EHCP application. Writing emails, making phone calls, attending meetings where you are blamed for their low attendance and all the while talking to people who have such a poor understanding of what being neurodivergent means and have never even heard of burnout!

All I had to keep me going each day were glimmers, moments of joy. I would escape into my garden, sobbing whilst pruning a rose or weeding the lawn. Sometimes I would just sit and look up at the clouds and watch swifts and their acrobatics or just listen to the goldfinches – which would lift me for a few moments in what felt like a dark never-ending tunnel. When would this end? When would he be ok again? When would he feel happy and eat again?  It did take time. A long time. But things did change, as will many of your situations also.

PDA

It’s important that we also talk about PDA, because many of us identified as AuDHD have a PDA profile. As a PDAer everything can be a demand – I mean literally everything. PDA is not like what we might call rational demand avoidance that can be experienced by most people, whether neurodivergent or neurotypical and can be explained. Maybe a demand is avoided because of low energy, anxiety or being overwhelmed. They don’t experience what can only be described as irrational demand avoidance. There are things as PDAers that we want to do, we might have the energy and the capability but we just can’t do the thing – even if it’s fun or necessary.

For a PDAer  -too many demands and expectations, whether they are internal or external demands, are extremely debilitating. For a PDAer who is AuDHD, we can often be perfectionists driven to achieve but whether it’s using excuses, delaying or feigning sickness, we might still avoid them when they have become demands. Some of the most misunderstood experiences of demand avoidance for a PDAer are our internal demands. It is hard enough for people to not get why we avoid external demands but avoiding internal demands is a mystery to others often. Pain signals, thirst, hunger, using the toilet, the list is endless. Often the reasons for why my nervous system goes into fight, flight, resists and avoids do not always make any sense to me, even as a trauma informed individual. Often, I just can’t and I have learned to accept this about myself. Without acceptance I end up living with shame and shame is stressful.

Being a PDAer who is also ADHD, means I spend most of my life on the go, never sitting still and also hypervigilant. I do not know what calm means. PDAers have an incredibly sensitive nervous system; our amygdala alarm sometimes seems to be ringing all the time and we need low demands environments. I am looking for risks in everything and rarely feel safe. There are in fact only a few people and places where I genuinely feel safe in myself. Autonomy for me is like oxygen and I need it in everything. When I sense my autonomy is being taken away I can feel terrified and might well respond very strongly indeed. It can feel like someone is reaching right inside me and ripping out my will. This has often been interpreted by other people as me being controlling, selfish and controlling, wanting to get my own way. It has meant that in previous jobs I ended up clashing a lot with managers mainly and on numerous occasions ended up being bullied and also suspended.  

Life for me as a PDAer has been often been exhausting, all the demands, the expectations there can be to shape shift in order to be acceptable enough. The neurotypical inner critic who lives in my head, trying to make me assimilate rather than be myself. The sensory assaults, feeling controlled, not having agency. I was internalised for so many years, I fawned a lot in order to stay safe, putting my needs last and becoming people’s personal emergency services, rushing to their aid, getting my blues and twos dopamine rush. I have also done this with people I became obsessed with– which is common in PDAers, we can become obsessed with people rather than objects. I would often put myself in very dangerous, risky situations with people I wanted to help, partly due to having very poor boundaries. The combination of PDA and ADHD, my obsessions, pushing myself beyond my capacity, masking, impulsivity and risk taking all led to exhaustion and burnout.

I now pace myself. I take days off. I rest as much as I possibly can. I enjoy my interests and flow states (currently my hyperfixation is pretty much constantly thinking about and listening to Radiohead – Yes I know, how bloody depressing!). If I have a busy day I try to make sure the next day is less busy.

So, how do we prevent AuDHD burnout and what helps when we experience burnout?

1.      Firstly embracing who we authentically are and our identity is crucial, as is finding safe neurodivergent people who we can be safely unmasked with.

Being identified and diagnosed as neurodivergent has changed my life around for the better. As I said at the start of my speech, self identifying as PDA has been even more life affirming than my autism diagnosis, I understand myself in ways I have never before and that means I know what I do and what I do not need in my life. My mental health is the best it has ever been.

2.     We have to be identifying people earlier. It is at the end of the day easier to prevent burnout. The recovery journey after burnout can be very long and the consequences can for too many be severe.

3.     The exhaustion caused by adapting in order to be acceptable is just too costly and so creating safe neuro affirming environments for AuDHDers and being able to find safe people is essential.

4.     We must understand that neurodivergent people are not the problem but that stigma is. As a society we must break down the stigma there is regarding autism and ADHD especially, at every level.

5.     I cannot even begin to tell you how life changing ADHD medication can be and I am currently seeing how it is helping my son in ways I never imagined. I have seen it literally turn lives around. It’s not for every ADHDer or AuDHDer and it’s not always an easy journey with many giving up before they find the right drug and the right dose.

6.     Let’s value the power of rest in all its forms: physical, emotional, psychological, creative, sensory, social and spiritual rest.  When you are burnt out – don’t fight it, don’t push – but rather lean in hard. Reduce as many demands and expectations as possible and find those micro moments of joy wherever you can.