HEDS and AuDHD - the quest for Honesty and Truth

The summer has been very difficult to get through, and I’m dealing with some concerning signs of deepening depression, but I promised myself to write a little bit about some of my latest insights. 

There is a lot of anti-disability propaganda around at the moment and one recent documentary about ADHD was particularly controversial. I’m learning that people with ADHD have a strong sense of justice - and so do I. The controversies brought up the old question about my own neurodivergence. As outlined in an early blog post, I was offered an appointment for a ADHD investigation just six months after my referral,  but the useless dipshit of a psychiatrist ignored it and swiftly decided to pin me down with all the usual, stereotypical arguments about attention seeking females. He concluded that I was nothing but a drug seeking hypochondriac and my previous diagnoses of physiological ailments were vastly exaggerated. In view of the trauma he induced, I will not seek another opinion. Instead, I did a bit of brainstorming by running my life story and some of my quirks through one of the chat bots. It opined that I actually had AuDHD. 

From all the new research about the connection between hypermobility, ADHD and autism, this conclusion didn’t seem far fetched at all. Fibromyalgia has also been linked to these issues. In 2007 a pleasant neuropsychologist I went to see suggested I may be a ‘Highly Sensitive Person’ (HSSP) in accordance with the popular research by Eileen Aaron. I’ve recently seen it suggested that HSP is potentially a good match for autistic traits. 

I was genuinely surprised by the autistic part because I see myself as someone with a heightened awareness of other people’s emotional states, but when I listened to other people’s experience and the experts’ opinions, I could see the traits it have manifested in my life. The criteria are widening, it seems, so you don’t have to be non-verbal to be autistic or crash your car to have ADHD. These conditions have been stereotyped, simplified and infantilised for very long, and it’s all changing. The interesting thing about the combination of autistic and inattentive ADHD traits is that they interact and balance each other out. This is a tug of war that asks for an interesting approach. To me, it also explains why neither diagnosis feels right but both together, they do make sense. I’m not going to argue for all this and present the research in this post. I’m just making a point that this type of neurodivergence seems almost inevitable in people with Ehlers-Danlos Syndrome because the faulty connective tissue affects the brain in a really deep way. There may also be certain genetic clusters in these cases. I can finally see how it also fits the challenges I’ve faced throughout my life. I was emotionally dysregulated as a teen and my twenties were horrendous before I was able to find my right footing. One day in my thirties, I said to myself, well now my emotions are finally appropriately regulated!

When the disability assessors in Finland called me self-centred, avoidant and demanding, and claimed that I had a bad attitude towards future prospects of work, they were twisting my reality to fit a stereotypical model for personality disorders, not AuDHD. Of course AuDHD wasn’t recognised as a combined type at the time but even if it had been, it’s unlikely to have been spotted in that kind of environment. Their description does not fit me at all as I was a burned out over achiever at that stage, but I can see that some of my responses to their cliched questionnaires might have registered as personality flaws within the framework of neurotypical and patriarchally informed reasoning. In reality I’m just forever balancing two tendencies, one that attempts to accelerate my life and another that tries to put the breaks on. That tug of war is obviously difficult to live with when you also have to try and manage a body that’s screaming from pain and discomfort because its threat detection is turned on to its fullest. There’s so much chaos going on all the time.

However, at the same time, I’m not entirely unhappy about having two sides that serve opposite purposes. I think it’s an interesting dynamic, and an example of a contradiction that I don’t find distressing in the least. I don’t think it would be wrong to suggest that one major ‘special interest’ is paradox. So instead of being a black and white person, I find ways of joining the Yin and the Yang harmoniously, while also looking for patterns.

The negative consequence of the autistic side is an enormous problem with sensory gating and severe problems with serotonin regulation. I’m pretty sure my 5-HT2A receptors are severely dysregulated and possibly over active, though I have no way of knowing exactly how any of this plays out. I just know I’m unable to tolerate increases in serotonin and that serotonin impinges on the dysregulated dopamine that determines the ADHD traits. Yes, it does seem to show up as a kind of scales where one affects the quality, but maybe also the quantity, of the other. I’m not entirely sure about this yet but I have thought about the serotonin/dopamine interplay for years and am slowly finding support for these ideas. I do have to say, though, that autism has previously been linked to high levels of blood serotonin and constipation, which contradicts my experience as someone who clearly has a gut/brain problem with serotonin and suffers from diarrhoea (probably due to problems with the serotonin in the gut).

During the withdrawal from the opioid, the dopamine has almost flatlined as it normally would because opioids jack it up, so it comes as no great surprise that I’m struggling with my motivation in a really deep way right now. I have also been very shy since childhood, but I don’t feel it’s a personality trait at all. My personality is open and friendly, just like I was when I was a toddler. My continued struggle with social anxiety has thus always seemed a bit peculiar and I’ve worked hard on masking fatigue, pain and discomfort in order to try and project an image of my true self. I get incredibly overwhelmed by all the efforts I have to make all the time, and in my younger years when I was socially active and eager to try and carve out a space within the social matrix overall, I was constantly burnt out. I had to whip myself into action, but once I was active, I found it hard to stop. There’s an issue with state changes right there, and it also shows up when I try to sleep. I know people with ADHD often have the very same problems I have. 

When I was finishing my Master’s thesis in 1999, I was crumbling, and once it was completed, I had to give up on my ambitions and look into a permanent disability pension. It’s wild to think that none of the specialists took any notice of my many signs of hEDS and neurodivergence and just shamed me for what they thought was a personality flaw combined with some anxiety and depression due to adverse childhood events. One could potentially explain many of the difficulties I’ve had as symptoms of hEDS (fatigue and physiological break downs, for example), and the hypervigilance around my mother’s periodic alcohol abuse, but I don’t think it’s the whole story. My nervous system is definitely implicated in very intricate ways, involving all the major neurotransmitters, especially. The psychiatrist Jessica Eccles at Brighton university has pointed out that neurodivergent children are likely to experience trauma more intensely than others, and that certainly makes a lot of sense to me. I was slowly and surely becoming increasingly overwhelmed and fatigued. That is not a personality trait. Without the chronic stress in childhood (and maybe passive tobacco smoking?), I would no doubt have fared better, but I would probably still have struggled in many ways and wondered why.

On my way to work at the fortress island Suomenlinna
in 1989. I was a conscientious worker and
well liked by any boss I had.

I have made a list of the ‘quirks’ that might qualify as neurodivergent traits, and it’s a long list. I’m not going to share all of it here as it’s too much. Remember that none of this proves anything about either autism or ADHD, but I think they do point to some kind of combination of both. 

The following are a few examples of sensory sensitivity (they have worsened over time): 

Clothes are generally a nightmare. I especially hate synthetic materials and can usually tell approximately how much polyester there is in a fabric. I already hated wearing polyester shirts around ten years of age. This led me to a bit of a clothes shopping addiction, because I don’t only care about how they fit and feel, I also care about the way they look, and I struggled to find suitable clothes all my life. I have always tended to be ‘fast and furious’ and extremely vigilant.

I have a hypersensitive sense of smell and hate synthetic laundry smells and perfumes and so on, especially ones that appear to increase serotonin (eg. lavender). Many synthetic smells don’t bother me so it’s not so much about the chemical composition, and I don’t have allergies. I have always had extremely greasy skin and hate the sensation of any kind of gunk in my face. I also really hate wearing glasses. When I was in my late teens, I only listened to classical music, pop was too stressful for me.

I hate poor lighting and LED lights. I’m exceptionally sensitive to the proportions of a room and its layout, and ugly environments in general. The wrong colour combinations distress me. The issue was compounded by the ugly environments I grew up in.

There was a time when I colour coded my laundry. As a child I catalogued my books, though I quickly lost interest. I wanted to learn things about the world but didn’t know where to start. I generally like to organise and create order, in fact, I seem to be endlessly dealing with forms of chaos, which I’m trying to control as best I can.

Other people’s germs and smells disgust me and I keep them out of my house, applying strict rules and always cleaning after visits (this is one of my rigid/demanding behaviours, however I’m not aware of other prominent forms of repetitive or highly regulated behaviours).

I’m grossed out by long nails, fake eyelashes, altered body parts and tattoos, mannerisms and trends. I hate anything fake and inauthentic.

I don’t feel pleasure from being touched. I rarely feel reward from anything.

While I’m very much in control of my body and able to sit perfectly still, I suffer from intense internalised restlessness that shows up as akathisia at night. I have other sensory conditions such as hyperacusis, severe tinnitus, burning tongue, vulvodynia and allodynia. I believe the restlessness is connected to the eating disorder I had. It also connects to my inability to tolerate any form of HRT (as previously discussed on this blog). The same goes for most medications.

Some of my cognitive and emotional traits are as follows:

My mind is mostly dark and empty of content, thoughts are slowed down and imagery is blurry (I have no racing thoughts). I have had to develop a very strong intuition and pattern recognition in order to bypass the laborious thought processes. This made me academically successful despite the odds.

I feel like I think like a man, not a woman.

I hate stereotypes and vague catch all phrases. (Instead: Be specific! Be accurate! Be accountable!) 

I like logic, realism, and hate sentimentalism and irrationality: I’m a no nonsense kind of person. While I was attracted to mysticism, I had to objectify that, too, in order to understand religions from a rational standpoint. I no longer identify as a spiritual person.

I routinely hate questionnaires as I just can’t figure out what you’re supposed to respond: in my view, questions are usually open ended, vague, too black and white, leading, inaccurate, prone to stereotyping, infantilising and lacking in nuance and context. I always ask myself, ‘What is the expected response?’ I always think, the test was made by idiots for idiots. I find NT culture prone to extreme form dichotomous black and white (either/or) thinking. E.g. the mental is separated from the biological. I’m unsure how black and white thinking would therefore characterise an autistic mind.

I thought in my late teens: I’m an interesting psychological object to study.

I thought in my late teens: I need to understand what emotions are (i.e. I objectified them).

A lot of people made me feel extremely tense, they weren’t sharing enough about themselves: I still get that feeling of performing when the conversation becomes lopsided. I struggled with small talk, though it’s also true that I come from a culture that dislikes it. I’m much better at it in my ripe old age but it’s highly dependent on the other person’s ability to interact dynamically.

I often felt I was oversharing in a self-centred way but I couldn’t help it because I had to focus so hard.

I was very poor at thinking of questions for people but it was not because I was uninterested in them, I just felt overwhelmed in social situations and couldn’t think of them. I thought if I share about myself then they will share back but not everyone does that. I also remember thinking of myself as a social chameleon. Other people confuse me endlessly and I’ve spent tons of energy journaling and analysing their behaviour in order to understand it (though I found there was little to understand because they simply don’t make sense, heh…). While I do have empathy (cognitive more often than emotional), I find it a bit difficult to care about humanity, and care more about nature and animals, but there have been times when I thought I actually cared more about beautiful objects than humans.

In childhood, I was unable to find hobbies that I could really enjoy and keep and soon felt too tired for any at all. I jumped from one thing to another without any real commitment or interest, and I was very easily bored. This is also a reason I ended up lining up multiple educations over the course of twelve years. I always thought of myself as someone who doesn’t do hobbies.

There’s plenty more but the above examples illustrate the type of ‘quirks’ I think could qualify for AuDHD, but bear in mind that I’m just speculating and have not been diagnosed. I would say that hEDS comes first and lays the ground for all the troubles I have. The sensory, emotional and cognitive traits may be consequences of the neurodevelopmental wiring that has occurred because of hEDS and childhood trauma, but personality can obviously play a role as well, so it’s very difficult to tease it all out. Interestingly, not all of it is bad, by any means. I’m obviously not happy about all my sensory issues and the vast amount of energy I’m spending just to exist, but what I do see, is a very strong penchant towards truthfulness that I also feel viscerally. For example, I’m quite proud of a body that rejects artificial crap. But really, I just hate anything phoney.

I mentioned my new neighbours, a family of four, in a previous post. The man’s a middle aged man who suffers from AuDHD. You can see it quite clearly from his body language. Unfortunately, things didn’t go well when they invited themselves to try and help me with my garden. The whole thing started out with offers to help with mowing the front lawn, moving my bins after rubbish collection and carrying bags of compost… things nice people do for their neighbours. I was happy at first because I thought they were genuinely friendly, and I felt some sympathy for the man’s health challenges, as they reminded me of my own. Then they suggested more help, especially with the garden, though now it was the kind you normally pay for. At this stage I started to have a bad feeling about help from someone who lived so close to me. The man also had a very nervous energy that stressed me, and my hyperacusis and stamina suffered from the interactions. However, since I was actively looking for help, the offer was something I still felt I had to take up as a potential answer to my own needs. 

Red flags soon started to show up. For instance, I thought we had agreed on a simple half hour job in the alley way (which I can’t see from my garden), but it took him five hours, and he asked to be paid for the breaks as well. The result was fine so I paid, but started to wonder if this was really going to work out. He seemed very keen to do things independently, which can very well be an autistic trait, but this does not gel with me at all. ‘It’s not like it was contracted work’ he said later on, which really jarred with me because it removed my position as the boss. Since I was paying, I don’t know what he thought the work could be characterised as. There were also other incidents that made me realise I wasn’t as appreciated as a person as I thought I was. It was depressing to realise that the relationship was transactional and not really about mutual support at all. It began to dawn on me that while I was expressing a lot of trust and generosity by giving them things (e.g an unused lawn mower with the idea that it would compensate for the mowing of our joint front lawn), I was probably seen as a generic elderly lady who could be taken advantage of (I can’t believe I’ve reached that age already!).

During one of the first heatwaves this summer, the man offered to water my garden as he was able to run a hose from his kitchen. Neither of us has an outdoor tap. After a week or so I asked him how he felt about the work and he responded that it was fine with him, only to suddenly abandon his duty to preserve my plants, and disappear. I sent a polite inquiry and got no response. All this really shocked me. Bear in mind my nervous system was extremely labile due to the withdrawal, as well. Thankfully, I had a brain wave during a wakeful night (highly unusual I may add!) and realised I could in fact ditch the shower hose in my downstairs shower room and install a permanent hose that I could pull through the living room. This system replaced the laborious work of lagging buckets of water from the shower on rollers, and from then on, I was able to deal with the watering myself. 

After the weekend, I asked the neigbhour to return an item I had left with him for consideration when I thought he might be able to help me with a car related issue, and that’s when he finally responded. He said he’d been too anxious to respond to my previous message. There was no apology. All he said was he had said he’d be busy but apparently I hadn’t noted it. I can see the autism behind his actions but not the lack of accountability. Because my new message was curt (but still not rude), he warned me, ‘No need to get shitty with me’. I didn’t like that. I explained I had been confused and perplexed by his silence. He then changed his tone and wondered if he should continue watering the garden. I smoothed it out by saying that the issue did not deserve anxiety at either end, but I would deal with the watering myself from now on. Should he mow the lawn, he asked, and I confirmed. I basically continued smiling as if I didn’t understand what was really going on. 

What was really going on was clearly an attempt at manipulating and micromanaging me so I wouldn’t complain about the cannabis smoke from their garden (there’s also cheap tobacco and that particularly smelly laundry detergent the British seem to like, ugh). Unfortunately, I did try and tolerate the weed but over the hot summer, it really became unbearable. I could not sit in my garden in peace and I could not keep my bedroom windows open in the heat. I finally saw an opportunity to tell him that it was bothering me and he said he would be more careful and only smoke when my windows and doors were closed - but he didn’t keep this promise and I became a passive smoker of psychoactive substances that I really don’t tolerate (I mean in the sense that I don’t tolerate serotonin agonising substances, but also as a sensory nuisance). Over time, the two of them served me several victim stories that frankly made me roll my eyes. Everything was centred around the man and his anxiety and other people’s attacks on him, and no one else really seemed to matter. The first thing he said to me when we met was that everything was black and white for him. He pitted me against another neighbour who had complained about the smoke, and said he was nervous about me and the other neighbour, and that complaints would only make him more anxious and likely to smoke more… it seemed as he was trying to induce a feeling of guilt. I once compassionately asked him how the autism affected him, but all he did was stare at me and point at the space between us in an agitated sort of way, and then he asked me to google it! I didn’t know much about autism so assumed he described himself, not a learnt stereotype. I was specifically trying to avoid stereotyping. 

I can see how he and the other neighbour on my other side have used similar threatening ‘warning’ tactics to try and appease me. The other man warned me that they had to move from Portsmouth due to issues with the neighbours! Yet they are the ones who have been harassing me.

In the end I decided I owed the new neighbours nothing whatsoever since they had tried to trap me into enabling (and maybe funding) an addiction, and even into feeling responsible for someone else’s medical needs (the man clearly had alternative, non-intrusive ways of handling them). I would almost go as far as to suggest that they tried to make me dependent and obligated. While people with autism are often obsessed with truthfulness, they obviously have personalities as well, and may have any number of internalised neurotypical scripts. I don’t hate the neighbours and wouldn’t care if the issue didn’t affect me directly, but it does - I have medical needs as well! They put me in a very difficult position, which I don’t appreciate. I saw no other option but to complain about it to the housing association. I don’t enjoy ratting on people and it’s not a fun process anyway as the HA staff are lazy and unwilling to help with complaints. I’m currently waiting to find out how it’s all working out. I’m deeply distressed because I can imagine just how toxic things will get when the neighbours realise what I have done. 

I no longer take much joy in my garden because of the endless fights with the neighbours on both sides. I’m trying to source a mini van so I could hopefully get out of the house when the withdrawal starts to ease up. If I can’t go anywhere then that’s how it is but I have to try this idea before I’m definitely too old and decrepit. I contacted a camper converter nearby but he also tried to manipulate me right from the start. First, he responded to my query on a Monday and said he would write me the next day when he was in the office. On Tuesday he wrote another one liner asking me to go and see him at his workshop. It struck me that he could very easily have said this already on Monday but was actually trying to keep me in suspense as part of a strategy. I responded that I wanted to know about pricing and whether he can install a window before I commit to meeting up and finalising the commission. He then responded in a pretty surly tone that it’s very difficult to say and it depends and it starts at a couple of thousand but in this case it would probably be about 6K. In other words, he was trying to snare me in and get me to his garage where he would then try and sell me the most expensive package he could think of. It’s not what I need or can afford, I need for the modifications to be quite simple. 

At this point I felt as if I was starting to slip through a hole in the floor. I realised that manipulation forms an integral part of this culture. It’s probably not really just about this particular culture but more specifically, the man culture. It’s spelled MANipulation, after all, haha… Anyhow, I come from one of the most honest countries in the world so it’s deeply shocking to me, but I’ve been out of my country for too long and have no idea if I’d encounter the same issues over there. I feel so deflated. The manipulation has been going on ever since I lost my husband and I’m finally beginning to admit that I have to expect it at every turn. It started when a car dealer offered just £150 for my husband’s car and some kind of mind game and shoddy workmanship has occurred almost every time I’ve hired male help. My previous handyman who had ADHD wasn’t like this and that’s why the loss of his help was so dramatic. I cannot trust anyone and I cannot count on honesty under any circumstances. 

It’s so disheartening. To make matters worse, there is so much hatred in the air right now, not least against young disabled women (are the provocateurs projecting their own unconscious desires, I wonder?). AI is starting to become a very difficult topic to handle in a civilised way and it’s taking away people’s authentic voices and increasing the artificiality of society (I’m not Anti-AI but yes, I’m concerned). Of course, the wildfires and other disasters related to climate change are deeply worrying as well. The matrix of our joint reality is falling apart.

So do I have AuDHD, well I think so, though like I said, they are two extremes that interact in ways that can blunt the extremes. It’s possible that the autistic traits are becoming more dominant postmenopause as dopamine has become scarce and I struggle to whip up some drive. I don’t think the traits are strong by any means, but I do think they are there. Overall, I think I come across as a fairly balanced person despite my life long challenges and that may well have something to do with the ability to flow with these traits in ways that support creative coping strategies under duress.