Learning to manage a stressful life, while learning to cope with myself. A life-long journey in learning to take care of myself, where taking care of others comes more naturally 🪷
Have you ever been screened for adhd? I see that there is a lot of overlap in adhd and autism diagnosis. How was it for you?
Autism and ADHD do have a lot of similarities, as well as ADHD and (c)PTSD. I am officially diagnosed with autism and cPTSD, but I do also score very high on the ADHD spectrum. I got asked once if I wanted to get officially tested, but I refused because at that time my brain just couldn’t handle another label. I absolutely despise labels and getting them put on me gives me massive stress, because I feel so inadequate and as a failure (I’m still working on that). My autism also got kind of buried under all the other labels that got put on me, and I felt like it was going to happen with this again. I don’t do well in adjusting or acknowledging new things and it takes ages for me to accept these labels.
Just like autism, ADHD is also a neurodevelopment disorder, which means it would have been there in my childhood, so for me it is most useful to look how I was as a child. As a child I was not hyperactive at all, only disorganised with a lot of executive dysfunction, impulsivity when high stress levels occurred and easily distracted with bursts of hyperfocus and -fixation. My brother however has always been hyperactive, impulsive, and easily distracted (although he’s also diagnosed with cPTSD). He for example as a 2 year old managed to jump out of the high chair more often than actually sit in it or rock and bounce it back and forth so hard that he would flip over with chair and all. So he is definitely an ADHD’er. Me you could have put in a corner of the room and completely forget I even existed, which therefore also happened, because I wouldn’t make a sound, wouldn’t cry, wouldn’t crawl away from my designated space. You could give me a toy and I would be satisfied with it all day, figuring out all ins and outs, when I was done playing I would start taking it apart and would put it back together, over and over again. Where my brother would throw his toys through the frontwindow of the car (literally) because he was just bored with them and needed more stimuli. My cPTSD diagnosis makes it very complicated to distinguish what symptoms are from traumatic stress and what has been there since before the structural stress (because the structural stress also started in very early childhood) from ADHD or autism.
For me I think it is more helpful to look at it from a holistic perspective instead of adding more quite meaningless labels for a group of symptoms that one might have, I just have a neurodevelopment disorder with a spectrum of symptoms. I have made an inventory of those symptoms and the scope of these symptoms is already a huge disability for which I need to make adjustments to my life. Labels should be used as a tool to help people and their support system understand, figure out and learning to cope with their symptoms. The label is solely there to serve a purpose, but it doesn’t give you any clue about the extent, severity or suffering of the person. In my practice I always tell my patients that I’m treating a person, not just the lab results or diagnoses, and I expect others to do the same with me. I hate it when people only look at results or labels and create their entire treatment plan based on that, you should look at the human that’s sitting in front of you.
The autism spectrum has a major overlap with the ADHD spectrum. This overlap includes things like sensory issues, stimming, emotional regulation difficulties, impulse control difficulties, executive dysfunction, interest-based nervous system, interconnected thought processes and patterns, hyperfixations and -focus or special interests, social differences and difficulties, communicative difficulties, rejection-sensitivity dysphoria, and making eye contact difficulties. In both disorders the amount of stress or overwhelm is what can make the symptoms worse. Some specific symptoms to ADHD are the cravings to new things and experiences, attention and focus regulating difficulties, which could make it harder to read social cues, inhibition difficulties, hyperactivity, and impulsiveness. Whereas some of the specific symptoms to autism are the cravings to routine, order and familiarity, with craving for strict adherence, intuitive disability to read social cues, self soothing through repetitive behaviour, thoughts and routines. When my stress levels rise I tend to move towards the ADHD spectrum, but it keeps contributing to my rising stress levels, so I am thinking it is more masking / coping than actually ADHD. I think, I therefore really fit the autism spectrum better than the ADHD spectrum. But I don’t know, maybe I’ll be ready one day to get myself actually tested, because it also wouldn’t really surprise me if I was.
Living with autism can bring unique when it comes to planning and organization. For many on the ASD spectrum the structure is not just there to help, it's rather essential to us being able to function. Planning and organizing for me seems like it comes as a second nature to others, but for me it can be a true monster task. Not surprisingly, our brains process information differently, and this can make executive functioning, which is our ability to manage time, tasks, and decision-making, particularly tricky.
It is so difficult due to multiple factors, for example I suffer from sensory overload, executive dysfunction, hyper-attention to detail, memory issues and rigidity. Sensory overload makes it very difficult for me to focus on tasks when the environment is overwhelming, this can be the internal or the external environment. I need certain conditions to be able to focus or I will have trouble focusing or will be extremely quickly exhausted. Having hyperattention to detail can be a strength, it can also mean getting caught up in minor details and losing sight of the bigger picture. I can get caught up for hours fixing the borders of a document to one pixel, making it look perfect. Even though I get told that others won’t even notice it, I do, and it will get all my attention and give me anxiety if I don’t fix it. Keeping track of multiple tasks and deadlines can be difficult, I can think and ruminate about a certain task, but completely forget about another one. Even though I have nothing wrong with my memory, it’s partly because of the hyperattention to detail and knowing what is important and what is not. Knowing what is important and what isn’t, is part of the executive dysfunction.
Executive dysfunction is also managing time and tasks / goals, initiating and persevering tasks, flexibility in planning and multitasking. I have huge problems with time management, I honestly cannot estimate how long a task might take, because they most of the time are overestimated and on some tasks they are completely underestimated. Prioritising plans is also not my strong suit, I am keen to do the least important tasks first. Plus I am quite bad at initiating tasks and when I’m overwhelmed I have zero perseverance. Adjusting plans when something unexpected happens can throw me completely off, on a bad day it can throw me right into a breakdown.
I have developed certain strategies to manage my planning and organisation dysfunction. I’m not going to advertise that it fixes everything, because it’s always a work in progress kind of process and it’s different for everybody. But it all starts with self compassion, beating myself up for something my brain is just not wired to do isn’t going to help anyone. It’s okay if you are no planning guru. It’s okay if you can’t stick to your plan for a full week. Perfection isn't the goal here, you can’t live a perfect life and life is beautiful because of its imperfections. Celebrate the small successes. Because it’s amazing you pulled those small successes off. Applications are not my thing, I get overwhelmed by notifications and will be completely blindsided, they just don’t work for me. Maybe they do for you, then that’s great, but if you don’t see any progress or improvement after app #5, you can say it’s not for me and that’s okay. New apps that advertise with “get our premium subscription because we..”, I’d advise don’t and safe yourself from the disappointment. For me visual aids are a game-changer. Things like a whiteboard planner, wall-calendars, and bureau to-do lists can provide a visual representation of what needs to be done and when. They stay in your visual periphery and you will be reminded of it every time you walk by. Extra tools like color-coded schedules and charts can break tasks down tasks into smaller, more digestible pieces. Because breaking tasks into smaller steps can make them feel more achievable. Instead of writing "Clean the house," try breaking it down into "Vacuum the living room," "Dust the shelves," etc. This not only makes tasks seem less overwhelming but also gives a sense of accomplishment as each step is completed. Be aware that you don’t break them up too small, because then you might get overwhelmed by the task again. Also, you’re allowed to change your planning after you’ve started it, it’s not a fixed schedule.
Additionally, it could help to figure out what your natural routine is, because having a consistent routine can reduce anxiety and create a sense of order. Establishing daily habits can make the process of planning and organizing less daunting, reduce the cognitive load of decision-making and free up mental space for other tasks. Although, again, don’t put too much pressure on yourself here, it’s okay if you deviate from your routine. I’m also using timers to allocate specific periods for tasks can help with time management and help me remember specific tasks. It’s just a simple alarm that I also use to wake up, like a little nudge to remind me to cook dinner or start my bedtime routine. I also use The Pomodoro Technique, which involves working for a set period. Most of the time I use the formula 25 minutes work + 5 min rest and for each additional 5 minutes I take a minute longer rest and then taking a short break, this boosts my productivity. After four cycles I take a half hour break, or when I deviated from the 25 + 5 rest, I take the total work + rest as a break (so after four cycles of 35 + 7, I get 42 min rest).
Another thing that is really helpful, but I’m extremely bad at asking for is the support of others. It could be in the form of creating accountability, body doubling, literally helping with the task at hand, helping with creating order or helping with creating a planning. Figure out what your needs are, how you can find support from others, from who and dare to ask for help, support or advice. Most people are willing to help you. Also, connecting with others who understand can be incredibly supportive. Whether it's through support groups, online forums, or friends and family, sharing experiences and tips can provide both practical advice and emotional encouragement.
Remember, it's about finding what works best for you and taking it one step at a time. Everyone’s journey is different. What works for one person might not work for another, and that's okay. Patience and understanding, both from ourselves and those around us, are vital. It's important to celebrate the small victories and all progress, no matter how minor they may seem.
This burnout hit me hard, like smacked me right in the face and stomach and I feel like recovering is going so slow, too slow. I have been trying to get my energy and confidence back to where it was, but it’s just not happening. I have been researching ways to get myself back on my feet and one of the things I came across was the Autism Service Dog. In my country there’s a huge waiting list for these type of dogs, it’s not covered by health insurance yet and it costs about €25K to train one (and a €400 extra every two years to renew the license). There are other ways to get funding but there are massive waiting list, I’m not applicable due to age, or so much paperwork, so I would’ve had to rely on crowdfunding. Which sucks because I don’t like being in the spotlight unanonymously. Also getting a dog through one of those organisations will mean that I would lend a dog, but I also suffer massively from fear of abandonment. Like my cat is three years old, but thinking about the day she’ll be gone gives me already massive anxiety although I know it won’t happen for another 17 years – and nobody dare tell me otherwise because she’s going to be at least 20 years old. I talked to some friends of mine who have a lot of experience with training dogs, and I made the decision to train an autism service dog for myself. To help me manage the challenges I face daily, because I know a (service) dog could make a significant difference in my life. She will offer me support that I wouldn’t be able to find elsewhere. I will deal with how to get the appropriate official certifications later.
So after months, if not years of extensive research (thank you recurrent hyperfixation) I decided to finally give it a go and I bought a puppy last week. I created a more than extensive training plan / program for us and talked a lot with the breeder about the health and characteristics of her parents. I’m not sure how I am going to combine it with my work yet, but up until now they are very supportive.
Breed
Generally I found that the best breeds are the Labrador Retrievers, Golden Retrievers, Poodles, Bernese Mountain Dogs, Border Collies, German Shepherds, Belgian Shepherds, Cavalier King Charles Spaniel, Great Danes, and the Australian Shepherds. But most importantly, when selecting a breed you should consider the temperament and trainability. If you are suffering from dog allergies I’d suggest to go with a hypoallergenic breed, although it is not a certainty you won’t have a reaction. The temperament should be calm and stable and the dog should be responsive to training, intelligent, and eager to learn and work. Also you should be able to match the energy level of the dog, for example the working dogs, like shepherds require a lot of activity throughout the day. Furthermore, depending on the tasks or goals you have for your service dog the size of the dog might be an important factor. For example, I really want my service dog to be able to apply deep pressure, so I need a larger breed in order to achieve this goal. However, while breed traits are important and overall true and applicable, each dog is an individual. You should assess the temperament and compatibility of each specific dog with your goals and needs. Talk to the breeder, ask them how their parents are like, how previous nests grew up to be, observe the puppies or dog and talk to professional trainers. Also nurture and therefore training is a big complement part to nature. After a ton of research, talking to breeders, talking to a befriended trainer and the making of a dozen pros-cons lists, I finally decided that the Belgian Shepherd was the perfect fit for me. So, I am now a proud owner of a Belgian Malinois Shepherd puppy, named Pallas.
Belgian Malinois Shepherds are known for their intelligence, trainability, and loyalty. While they are often seen in roles like police or military work, they can also make exceptional service dogs with the right training. Their high energy and strong work ethic make them well-suited for tasks that require a lot of focus and precision. They are very sensitive and reactive which makes them a good fit with me, because I need her to sense my emotions, my hunger and thirst, but also my flashbacks. They are very big so she will be able to give me deep pressure but also needs a lot of leadership, which is a quality I want to train and develop. I spent quite some time observing her parents, who are for malinois very gentle, calm and soft. So I expect to see those qualities back in her, and I already do. Although she is a puppy she is not hyperactive, listens very well, behaves very well and is already really socialised to people, other animals small and big, and just the outdoor buzzing life.
Goals
My goals for a service dog are to provide deep pressure therapy in certain situations, to assist me with sensory overload, to notice and notify me of certain emotions, bodily feelings, negative / distressing stimming and flashbacks, and to help me in social interactions. She’s not really there to give me practical support or assistance, but rather to give me emotional support and to be a trusted companionship.
Training
Training a service dog is no piece of cake. It requires patience, consistency, and a deep understanding of both the dog's needs and my specific needs. Together with a dog trainer I created a training program that fits my needs and also covers the challenges of training a puppy into a service dog. The first phase I called the “Puppy Preschool Program”, which covers building a strong relationship with my dog, socialisation and basic obedience. Since she’s really just a baby, it’s about learning to trust me and follow my commands. She’ll learn how a clicker works and how she is eligible for treats. She’s going to learn commands like sit, follow, stay, lay down and leave. She also needs to be socialised, that means plenty of exposure to other dogs, cats, livestock, people and motorised vehicles. When she’s graduated from this she’ll enrol into “Puppy High School”, which covers advanced obedience and public access training. Exposing her to different environments will help build her confidence and adaptability. Because, I need her to stay calm in public access places and I need her to behave and listen to me. This means no barking, no tugging, no begging, and not reacting to distractions. She’ll also learn more commands, like fetch, apport, catch, hug, kiss, nudge, guide and paw. It’s going to lay down the foundation for the third phase where she’ll have to do tasks without any commands but by her own notice of signs and signals. Because, after this she’ll do “Puppy College” which are the advanced specific tasks like notifying me of emotions, negative / distressing stimming, flashbacks and bodily feelings, providing assistance with sensory overload and during social interactions and applying deep pressure. After this I am able to call her my autism service dog. Although even after this initial training is complete, it is important to keep continuity in reinforcing commands and keep adapting her to any new needs that arise.
Progress
I have my pup of 10 weeks for a small week now and the transformation I’ve already witnessed is nothing short of miraculous. She’s already such a source of emotional support, for example I fell down in the dark after 4 days because I tripped over something and she came running towards me and started licking my dislocated wrist and hugging me. In the first days she did a lot of puppy nipping, but I managed to get her to almost completely stop doing that in just a week. She walks with me on a leash without tugging and she already listens to the commands sit and follow. She is very gentle in meeting other people, other dogs and she is so amazingly sweet with my cat, it’s like I’m living a dream. Our bond is really building strong and it’s amazing to see the progress in such a short time already. It’s also amazing to see the effect on me, I have been outside walking, I’ve been talking to people on the street and if I don’t want to talk I simply tell her “no, you’re not getting cuddles from this person” loud enough for the others to hear so they don’t interact with us.
If you're considering training an autism service dog for yourself, I think patience is essential because training takes time and each dog learns at their own pace. Also, consistency matters with all animals and dogs in particular. They need consequent, regular, consistent training sessions to have success in progressing. I can definitely recommend working with (experienced) trainers who can provide valuable insights and support, although I am aware that they are very pricey. But most and foremost building a strong, trusting relationship with your dog is essential and could already benefit you in your symptoms.
If you have the ability to get an autism service dog through an organisation I think you will save yourself a lot of time and have more reassurance the process will work out okay, which I can therefore definitely recommend. But maybe we should advocate as a community to make the autism service dogs more accessible for everyone with a diagnosis. Instead of making them only available to people who have the means to get their dogs training for such ridiculous prices. Because according to the Assistance Dogs International all programs must be nonprofit, but then also, how can they ask for €260 per 45 minutes of training excluding driving reimbursement and if you write or app the trainer it will cost another €100. I really fail to see how that is a nonprofit organisation and not just a lucrative business model. It is something that should be able to be done for way cheaper.
Feel free to reach out if you have any tips, thoughts, suggestions, or advice for me, I’d really appreciate them all. I’d absolutely love to hear your stories. And if you have any questions or need advice on training your own autism service dog from me just ask, nevertheless I will definitely share more of my journey with Pallas in the near future.
In Entry #002 I discussed the Positive Health Theory (PHT), where one of the dimensions is participation. Participation refers to the active involvement of individuals in activities that are meaningful to them. It includes having social contacts, having the support of others, having the sense of belonging, having the feeling of being taken seriously, doing fun things with others, doing meaningful things and being interested in society.
For us autists, by viewing socialising and participation in the community from the PHT perspective it helps recognising our unique strengths and challenges. Emphasising on the importance of accommodating and creating opportunities that support active engagement and autonomy. For me, for example, I do not require much social interaction because it exhausts me rather quickly. I always thought I needed to have contact with all my friends at least a couple times a day, otherwise I would lose them. I know now, that my real friends do not leave that easily. They know that I think about them every day and in my head that is enough communication, they know that if they text or call when they're in need, I will respond right away. I am just not good in talking about nothing. I therefore experience much anxiety around communication. The communication that happens needs to be clear and concise, it needs to have a purpose. Otherwise I just do not know what to say, I just don't do well on small talk and that's okay.
I love my daily routines and I love my personal special interests, so please let nobody bring chaos to my day or take the time from my special interests away (because chances are I'll go mental). But I do often encounter specific challenges that can affect my participation in various aspects of life. It could be difficulties in understanding social cues, non-verbal communication, or navigating social contexts. It can hinder my participation in social activities and relationships. It also includes the sensory sensitivities to sound, touch, light, or textures which may impact my participation in sensory-rich environments or activities. Furthermore, the dependence on routines and preferences for predictability can influence my participation in new or unfamiliar activities.
Other difficulties with socialising include the differences in communication, I think quite literally and am quite bad in picking up non-verbal cues. Afterwards it makes me overthinking the social interaction, because in the past I had so many bad experiences with it. I also do not like really large gatherings, small gatherings or one-on-one interactions I do best. The large gatherings get less of a problem if I can talk about a special interest of mine, then I might just not shut up anymore. I also do not really know my limits, at a certain point my social battery is drained and I just need to head home immediately or I could get in a shutdown.
Therefore, I should recognise and build upon my strengths and talents. I am allowed to do activities that mostly align with my interests and abilities, for this promotes a sense of competence and accomplishment and will give me motivation. I started accommodating myself to my sensory sensitivities and am giving myself a clear structure and routine. I allow myself help in communicating this to others, and I allow myself in communication in general. Because, by fostering supportive environments and recognising our unique perspectives, we can empower ourselves to actively engage in activities that enrich our lives and contribute to their overall well-being. Instead of badgering ourselves down because "I do not feel good enough for the neurotypical community". If I like to sit inside almost all day when I'm off work and am happy doing some creative work or making music, that's okay. If I can talk about a special interest of mine and therefore be social according to societal norms, that's okay. If after a certain point my social battery is drained, that's okay. I do not have to go out or sit in the park all day, unless it makes me feel good and relaxed.
To help you fill in the participation dimension, ask yourself, the following questions. What does make you feel included? How do you feel included? What gives meaning to your day / to your life? What gives you a sense of belonging? What do you interest yourself for in the community or society? What do you like to do with others? What does having fun with others mean to you? How often do you want to have contact with others? How do you like to get support from others? What does being social mean to you?
This journey of unmasking started with me falling into another autistic burn-out. Autistic burnout is a state of intense physical, mental, and emotional exhaustion, more profound and persistent than a neurotypical burnout. It’s not merely feeling tired or needing a break, it’s an overwhelming sense of being completely drained, often leading to a significant reduction in the ability to function in daily life.
For me a burn-out often happens when I do not recognise or keep on having mental breakdowns, like a meltdown or a shutdown. A meltdown is an intense response to overwhelming stress or sensory overload. It’s more than just the feeling of being stressed or anxious, it’s a full-body, overwhelming reaction that can sometimes be terrifying and most of all extremely exhausting. A shutdown is also an intense response to overwhelming stress or sensory overload, but the response is getting into a state of non-responsiveness or total withdrawal.
A mental breakdown for me often is a combination of emotional overwhelm, sensory overload and a feeling of losing control. Emotional overwhelm is an intense feeling of fear, anxiety, sadness, frustration or anger. In combination with the feeling of losing control it could result in an inability to regulate these emotions, leading to (unstoppable) crying or stimming. The sensory overload often is just a hypersensitivity to all sensory inputs. When all of this is happening at the same time I get a complete shutdown, I cannot respond, I do not know what I think anymore, sometimes I feel like everything is miles away from me and sometimes I even forget to breathe. In schema therapy I call this mode the dissociative protector mode.
When a mental breakdown happens too often after one another, without getting adequate relief or calming time in between, I might get an autistic burnout. A burnout comes with tiredness beyond normal, basic tasks are insurmountable and I can sleep 18 hours a day the first week. I will experience difficulties in communicating and interacting with others, even the ones very close to me. I won't be able to perform certain "basic" tasks, I just do not know how to do it anymore. I will also experience extreme anxiety, feelings of hopelessness, depression, worthlessness, sadness, feelings that are so strong and I do not know how to cope with the emotional distress in that moment. The sensory overload I thought was bad during a meltdown or a shutdown, somehow is even more intense during a burnout.
Understanding what can trigger a breakdown is very helpful in the prevention and management of one. In entry #010 I wrote a list of my triggers, roughly I think I can categorise them into sensory triggers, social triggers, masking triggers, environmental triggers, communicational triggers, physical triggers, cognitive triggers, emotional triggers, and uncertainty triggers. By knowing your triggers you can start to understand what your early stress signals are, see entry #011 for a(n inconclusive) list of mine. If you learn to see your early stress signals, you can start to better understand your triggers. By better understanding your triggers and stress signals you can act earlier on and maybe even prevent getting into a breakdown or burnout. It all depends on how it all works together for you.
To manage breakdowns and burnouts, find out what your safe space is. My safe space is the corner of the couch and my bed, this is my place and nobody is allowed to make this place unsafe. I need to be able to retreat to this space at all times. I have my warming blanket, my weighted blanket, my plushies, my salt rock light, my light blocking eye mask, my noise cancelling ear plugs, and my notebooks divided over these places so when I need them I can use them immediately.
For me predictability can reduce stress and anxiety, but routines can also add to stress and anxiety. So I try to stick to a routine as much as possible, but I give myself enough space to be able to deviate from it. I use it as a coat rack to guide my day, I can add things to my day, but can also take things off. It is just there to take away that mental burden of what comes next. Where possible I prepare myself for changes in advance. I also try to prioritise rest, breaks and relaxation. I try to engage in activities that help me relax and decompress, such as deep breathing, listening to music, or spending time in nature. I have created a list for myself that I can look at and use in time of distress, so I do not have that mental strain of figuring out a relaxing activity. I’m still very much figuring out how I can manage my sensory system the best way possible, but until now I found that it also helps reducing the amount of stress. I also try to reduce the need to mask my autistic traits by seeking environments where I can be myself without any judgements from others, so I don’t have to worry about (or deal with) that extra amount of anxiety.
When I am in a breakdown or burnout, I sometimes appreciate support from others. They have to stay calm and respectful, they should validate my feelings and give me enough time to express myself about what is going on. It sometimes helps if they help me move to another space or environment or when in a confrontational situation if they stand up for me. They should keep their words simple and clear. They should offer reassurance without overwhelming me with too much information, because otherwise I might just shutdown and become non-verbal. But most importantly, they should respect my coping mechanisms and not try to force me into strategies that do not work for me. They can also offer to take on some of my responsibilities to lighten my load or help me prioritise my self-care. It helps I carry an autism pass and an autism passport around that I can just hand over and people will know what to do or how they can offer support. I created and designed these myself with all the necessary information on it for me and the people around me. If there is animo, I can share a template and you can print one for yourself. I had it professionally printed for me and some friends on an embossed card and a softcover booklet so it doesn't wear off as easy.
After all, autistic mental breakdowns and burnouts are intense and extremely challenging experiences. With understanding how they get triggered and the appropriate self-care strategies, they can be managed. However, empathy, patience and compassion are crucial in the process of healing.
The first three years were rather easy, I mostly struggled with my childhood traumas rather than the autism. I have the luxury of having a photographic memory and being highly intelligent with a special interest in medicine since I was about 3 or 4. So the theoretical part was just reproducing the knowledge I gathered during childhood. And to be honest I didn’t do much at all. But when I started my rotations it became more difficult to balance my work-private life, meaning it completely tipped over to the work side. I didn’t take any relaxation time, but also I just didn’t know how I could relax. I loved working and I kept on working, I started at 6:30 a.m. and sometimes went home at 11:00 p.m. I had burnouts during middle school, so I was familiar with the concept, but the burnouts during my rotations were way worse and more intense. My university was very open minded and flexible about taking care of special needs and was always willing to help and think with me about what was best for me. Our president always said that rotating was 20% knowledge and experience gaining, but 80% self-discovery, which couldn’t be more true and accurate. I discovered myself in contact and communication with other doctors, nurses, patients and family of patients, and sometimes it completely took me down. I mainly discovered how punitive and perfectionistic I was to myself and how anxious it made me feel.
So, to be honest I have no clue how I survived med school, my partner says I was born a doctor. Where he maybe could be right, since on the playground as a little kid I was always the one first on the scene. I would splint the broken arms or put the epipen, insulin or glucagon in someone, so by the time the teacher got there they only had to call the doctor or ambulance (and they’d be a little mad at first until the medics gave me praise).
In a day I am using my cutlery cabinet to get through the day. I have spoons, forks, knives.
Spoons represent my energy levels. I use spoons for starting, doing, and finishing activities. Forks represent the (sensory) stressors I encounter. For example, listening to music uses part of a fork. Once the fork is full, I can’t process any more sound. The same goes for other sensory inputs, as overstimulation can happen quickly. A fork can be used multiple times, but once it's full, that sense or stressor is maxed out. Knives represent the emotional wounds and traumas I've accumulated. These can get "cut open" by triggers during the day, causing pain that varies in healing time—it could be a day or a week, there's no telling.
When my cutlery is used up, I get drained. The extent of my exhaustion depends on how much cutlery I used and how much energy I start with in the morning. Knives and forks tend to take more energy from me. If I deplete everything at once, I might have a meltdown. Repeated drainage over time can lead to burnout.
Some people suggest that certain activities can replenish spoons or forks. For me, I haven't found many of these activities yet. Usually, sleeping with a light-blocking eye mask, noise-reduction ear plugs, and both a warming and weighted blanket helps the most. While I have ways to conserve energy and stretch the use of forks, I haven't figured out how to fully replenish them. Knives, I can only manage to reduce the bleeding, but they remain a constant challenge.
To help manage this, I've created a Google Form to track my spoons and forks. It provides insights into how I use my energy and handle stressors, helping me plan my days better. If you want to use it too, the results will be sent to your email for your own tracking. I delete responses every week to keep it private.
Feel free to try it out and let me know how it works for you!
A problem many autistic fellows of mine, including me, are suffering from is hypermobility. It's a underdiagnosed, underrecognized part of autism.
I personally deal with Ehlers-Danlos Syndrome (EDS), which runs in my family. My great-grandmother, grandmother, and mother all have it, and so do I. It comes with a host of symptoms: atrophic scars, mitral valve insufficiency, postural / orthostatic tachycardia syndrome, gastric motility disorder, pelvic and bladder dysfunction, extremely soft and stretchy skin, and, of course, extreme hypermobility. I can bend my joints in ways that I only learned in medical school was abnormal, and I’ve often felt like a bit of a freak during skills practices. I remember asking an orthopaedic surgeon during training why people couldn’t do 90 degrees flexion and extension with their forefeet, only to be met with confusion. When I demonstrated what I meant, the look on his face was one of pure astonishment. This highlights how different our experiences can be and how misunderstood they often are.
One of the most frustrating parts is not being taken seriously by some doctors. I’m lucky to have a medical degree and trusted colleagues I can consult, but many autistic individuals don’t have this luxury. Too often, our symptoms are dismissed or attributed to our mental health, leading us to delay seeking help until things get really bad. Please, don’t wait. The longer you put off seeing a doctor, the harder it becomes to treat your symptoms. Find a physician who listens and takes you seriously. Hypermobility doesn't necessarily mean you have EDS, but hypermobile or not, moving and living isn’t easy. Chronic exhaustion is real and debilitating. I touched on managing energy levels in entry #003 with routines based on my modified spoon theory, which I call the cutlery theory. I’ll dive deeper into this in a future post.
Living with hypermobility means constant joint pain, frequent dislocations, and early arthritis. I’ve never known a pain-free day, and overdoing it physically just makes things worse. Recovery takes time, and I’m still figuring out if physical and mental fatigue recover together or separately. Overstraining definitely not only impacts physical, but also my mental state. Not everyone can access rehabilitation programs, but there are steps you can take on your own to make it a little easier or better. Start by tracking your symptoms to identify patterns. This can help you find ways to support yourself. Working with a physiotherapist or occupational therapist is ideal, but you can also use trial and error to find what works for you. I’m always here to brainstorm and offer support.
I’m a big believer in creative therapy. One exercise is to color in a body image to show where you feel comfortable, uncomfortable, or in pain. This helps you and your healthcare providers understand your condition better and develop a personalised treatment plan.
Also, braces can be a lifesaver for dislocated or overstretched joints, even though I hate wearing them. They help prevent further injury and aid in recovery. Despite the awkward looks and comments, they’re definitely worth it.
In conclusion, hypermobility is often a comorbidity of autism. It can cause mental fatigue and chronic pain, among other symptoms. Don’t suffer in silence, but find ways to accommodate yourself and make life easier. Medication and surgery aren’t always the answers, although they can help. Awareness and lifestyle adjustments can make a big difference too. Talk to your physician, physiotherapist, occupational therapist, and fellow patients to find what works for you.
How do I know that I am being triggered? Everyone has stress signals, some are rather obvious stress signals, some are more subtle. Again, it's worth to start notice what makes you uncomfortable to start understanding what triggers you. And often your body tells you first. This is especially true for me, because I have a lot of trouble with recognizing emotions due to alexithymia. I think I started to notice my bodily uncomfortabilities first and my emotions second. You can use the information in my previous posts to help you find out what stress signals you have upon being triggered. I'm just going to share a list with behavioural traits and bodily feelings that make me aware of that I'm being triggered. Maybe it’ll help you make your own list of stress signals.
Triggers sneak up on me, in my previous post I wrote about the sensory system and possible sensory processing problems. Based on my inventory I created my list of triggers, that overwhelm me immediately or after a while and other triggers. It’s worthwhile to know your triggers and how they overwhelm you, because that way you can create plans to deal with them. You can try to plan them or you could try to prevent them from triggering you at all.
Some of my triggers (but this list is way longer and keeps getting longer):
Sensory triggers (for a detailed overview see entry #007)
Sudden demands without prior announcement
Unexpected things happening
Having to meet new people (with expectations laid upon me)
Going to new places (with expectations laid upon me)
New things in general
Writing emails, texts or messages
Confrontation
The threat of people getting angry
Being belittled
Unknown people getting too close in my personal space
Having language processing confusion and not being able to deal with it properly
The feeling of having a social faux pas
A sudden or uninformed change of plans
Being conscious of me or getting noticed that I'm stimming
Being away from home for too long or after I got triggered without proper way to distress
Going too long without solitude or rest
Getting critised for unnecessary or little things I cannot really do anything about
Having no creative outlet for the feeling of uneasiness
Not enough time for or when time gets taken away from my special interests
Feeling out of my depth in expectations from others
Not being able to sit on "my designated/claimed spot"
Feeling under pressure
Having too many tasks build up
Sudden explosion of chaos in my personal space
Unannounced changes or updates in technology
Transitions
Not enough time to process or plan things
Arriving too late
Not being able to read things myself
Deviating from my routine
Having too little sleep at night
Having no control over things
However, each of these triggers have a specific triad of feelings, thoughts and behaviour to them, they have an origin to why it is that way. To be able to counteract on or deal with this trigger I need to find out why it became that way. So, when I encounter one trigger I document exactly my feelings, thoughts, behaviour and outcome in a schema. I find out how it originated and I create an alternative coping mechanism or I find out a way how to plan these triggers in advance.
Today I had the trigger of coming too late, so I created a Trigger Schema (entry #005) for this with some flashcard examples down below.
Trigger Schema
"Coming too late"
Situation
I overslept, because I was so tired from working a double shift yesterday. My partner was at his parents house for repairs on the car so he called me 10 minutes before I had to catch the bus to see why I hadn’t texted him yet.
Auditory: understimulated by quietness in the house, which gives me a ringing sound in my ears (tinnitus) and makes me hypersensitive for the littlest of noises
Visual: understimulated, which gives me object permanence blindness and makes me trip over my cat
Tactile: overstimulated by dry skin
Olfactory: overstimulated by congestion
Gustatory: overstimulated by taking medication and forgetting to brush teeth
Thoughts
Shit, I’m not going to make it in time. I’m forgetting everything. I can’t take the time to do my things I need to do. I totally messed up. I'm so tired. Why am I so tired? I’m not able to function today. Everybody is going to be so angry and disappointed with me. I'm letting everybody down.
Behaviour
I immediately panicked and haste everything I think of that is necessary to do. I feed my cat and pack my back. I get on the bus just in time.
Effect – Outcome
I sit in the bus and train anxious about all the things I might have forgotten to do and didn’t do. I am extremely self-conscious and have the feeling everyone can see how much I failed this morning and that I forgot crucial things.
Early Maladaptive Schema
Defectiveness and shame. Dependence and incompetence. Failure. Negativity and pessimism. Unrelenting standards and hypercriticalness. Punitiveness.
My parents were very punitive and unforgiving about oversleeping and making mistakes because of it, it is therefore understandable where my anxiety comes from. However, everybody oversleeps sometimes and nobody likes to do it. Oversleeping doesn’t make me a lesser person. It’s okay I wasn’t able to do everything I usually do in the mornings, because I still managed to get on the bus on time and I did the most necessary things. I went over my window of tolerance the day before and strained my energy levels, so my body needed it.
External Factors
My partner called 10 minutes beforehand, which helped me to get on the bus on time, but didn’t leave me much time to prepare.
Overreaction
I don’t have to be so punitive to myself, because in the end I managed to make it. So even the doom thinking wasn’t entirely justified. I don’t want to be worrying the entire trip that I might’ve done something wrong or forgot something crucial.
Involved schema to overreaction
Punitiveness
Wanted behaviour / reaction
I want to be able to calm down and not keep on worrying after I managed to get on the bus. I don’t want to forget everything in the moment I’m hastening.
Helpful thoughts
Everybody oversleeps sometimes. Oversleeping doesn’t make me a lesser person. It’s okay I won’t be able to do everything I usually do in the mornings. It will turn out alright. I don’t have to be afraid.
Helpful behaviour
Doing relaxation breathing exercises. Taking eye drops. Taking a mint to suck on. Putting on music. Following a list of what I need to do in the morning to get ready. Putting on moisturising cream. Taking my nose salts. Drinking water. Saying affirmations.
Flashcards
After creating a trigger schema I create one or more flashcards, depending on the situation and what I need. I will try to give you some examples of the flashcard structures (entry #008) based on this trigger schema.
Schema Flashcards
Right now I feel anxious, because I overslept and had to haste.
However, I know that this is my punitiveness schema. Which I learned through my youth, because my parents were very punitive and unforgiving about oversleeping, coming too late and making mistakes in general. This lead me to exaggerate the degree to which I'm worrying I did something wrong.
So, even though I believe that because I overslept I can't make it right, I did everything wrong to a degree it's unfixable and it makes me a bad person. The reality is that everybody oversleeps sometimes and it doesn't make a lesser person. This is supported by the way other people reacted in the past to when I overslept and I wasn’t able to follow through with my routine in the morning.
Therefore, even though I feel like I can’t stop worrying and ruminating about what I did wrong and what I didn't do. Instead I could do relaxation breathing exercises, ask for help or support, take a mint to suck on, put on music, use essential oils, follow a list of what I need to do to get ready, put on moisturising hand cream, or say affirmations.
Mode flashcard
Right now I am in worrying overcontroller mode, which makes me feel anxious.
However, this worrying overcontroller mode, which I learned through my youth, because my parents were very punitive and unforgiving about oversleeping, coming too late and making mistakes in general. Got triggered by oversleeping and having to haste and leads me to exaggerate the degree to which I'm worrying I did something wrong.
So, even though I believe that because I overslept I can't make it right, I did everything wrong to a degree it's unfixable and it makes me a bad person. The reality is that everybody oversleeps sometimes and it doesn't make a lesser person. This is supported by the way other people reacted in the past to when I overslept and I wasn’t able to follow through with my routine in the morning.
Therefore, even though I feel like I can’t stop worrying and ruminating about what I did wrong and what I didn't do. Instead I could do relaxation breathing exercises, ask for help or support, take a mint to suck on, put on music, use essential oils, follow a list of what I need to do to get ready, put on moisturising hand cream, or say affirmations.
Trigger flashcard
Right now I got triggered by oversleeping and having to haste, which makes me feel anxious.
It’s okay I got triggered by oversleeping and having to haste and that it makes me feel anxious. Because my vestibular system, proprioceptive system and interoceptive system gets overstimulated and my visual system gets understimulated by the situation.
To help me feel relaxed, I could do relaxation breathing exercises, take a mint to suck on, put on music, use essential oils, follow a list of what I need to do to get ready, put on moisturising hand cream, or say affirmations. This has supported me in the past to feel more at ease and comfortable.
To deal with all the information that I find out on this journey of unmasking, I create flashcards. They help me remember what triggers I’ve got, how I get overwhelmed and what I can do to make it better. I have several structures.
Trigger flashcard
These flashcards are based on creating specific distressing behavioural plans (in advance) for certain situations, not as much for acknowledging and challenging the feelings and thoughts that accompany those triggers. Because sometimes it’s easier to acknowledge that you got triggered, than the emotions or thoughts that accompany these moments. The focus is therefore solely on calming your nervous system down. These trigger flashcards can change a bit per situation, they are really personally designed for each situation.
Right now I got triggered by (trigger / situation), which makes me feel (uncomfortable emotion).
It’s okay I got triggered by (trigger / situation) and feel (uncomfortable emotion). Because my ((list of) sensory system) gets also (overstimulated/understimulated) by the (trigger/situation).
To help me feel (comfortable emotion), I could ((list of) distressing behaviour). This has supported me in the past to feel (comfortable emotion).
Mode flashcard
They help identify the mode involved, how it was originated and how it distorted my experience or understanding of the world. When the schemata are too abstract for the moment I can use these. They test the reality and help follow the alternative behaviour through. I made two types, because sometimes I can recognise the mode more easier than the emotion that lead to the mode and one emotion is not exclusive to one mode.
Right now I feel (emotions / feelings), because (trigger / situation).
However, I know that this is my (mode). Which I learned through (origin). This leads me to exaggerate the degree to which (behaviour distortion).
So, even though I believe (negative core-believe). The reality is that (healthy view). This is supported by (life examples).
Therefore, even though I feel like (negative behaviour). Instead I could (alternative healthy behaviour).
Or
Right now I am in (mode), which makes me feel (emotion / feelings).
However, this (mode), which I learned through (origin). Got triggered by (trigger / situation) and leads me to exaggerate the degree to which (behaviour / cognitive distortion).
So, even though I believe (negative core-believe). The reality is that (healthy view). This is supported by (life examples).
Therefore, even though I feel like (negative behaviour). Instead I could (alternative healthy behaviour).
Schema Flashcards
They are based on validation and acknowledgement of the current feelings and trigger / situation, they help identify the main schema involved, how it was originated and how it distorted my experience or understanding of the world. They test the reality and help follow the alternative behaviour through.
Right now I feel (emotions / feelings), because (trigger / situation).
However, I know that this is my (early maladaptive schema). Which I learned through (origin). This leads me to exaggerate the degree to which (schema distortion).
So, even though I believe (negative core-believe). The reality is that (healthy view). This is supported by (life examples).
Therefore, even though I feel like (negative behaviour). Instead I could (alternative healthy behaviour).
Or
Right now my (early maladaptive schema) got triggered by (trigger / situation). This makes me feel (emotions / feelings).
However, I know that I learned this schema through (origin). This leads me to exaggerate the degree to which (schema distortion).
So, even though I believe (negative core-believe). The reality is that (healthy view). This is supported by (life examples).
Therefore, even though I feel like (negative behaviour). Instead I could (alternative healthy behaviour).
Integration
In another post I will create an example of how I use the trigger schema and the flashcards. I will also probably edit this post sometime later on, but for now it is just a start. Because I have also combined a few flashcards with a mode flashcard structure and a trigger flashcard structure, as well as a schema flashcard structure with trigger flashcard structure. It’s just not one clear structure for both combinations yet. So as soon as I’ve figured that out I’ll include it as well.
In autism the sensory system is a funny part of the body, it can be hypersensitive or hyposensitive. It can be a kind of a superpower and a disability at the same time. When people think about the senses, they often think about the five senses that do the seeing (visual), hearing (auditory), smelling (olfactory), tasting (gustatory), and feeling (tactile), but there are three more systems in the body that take in information for the brain to process and acts on it. It are the balancing and coordination (vestibular), the positioning (proprioception), and the information from inside the body (interoception).
I won't be explaining the visual, auditory, olfactory, gustatory and tactile senses separately. I think they are pretty self-explanatory, in contrary to the vestibular, proprioception and interoception senses. Generally there are three categories in how people can perceive the information through their senses, they can be normosensitive, hypersensitive and / or hyposensitive. It is not one fits all, you can be hyposensitive and be stimulating it yourself, but then suddenly get overstimulated after all. It is a journey to find out how you react and how to balance your systems. But know that all the systems work together, for example your visual system works together with your auditory and vestibular system. I have drawn out the links I have found up until now how my systems work together, so that if one system gets overstimulated it could have some effect on another system for me.
Vestibular
The vestibular sense is the sense of stability, balance, movements and position of the head on the body. It works together with the visual system to make sure your eyes look in the right direction while moving your head and to correlate movements registered with what's being seen.
Proprioception
Proprioception is the possibility to perceive the position of your extremities. It gets registered by the mechanoreceptors in the tendons of your muscles and together with the visual and vestibular system it makes sure someone can coordinate movements with correct force. It is partly conscious and partly unconscious regulated, and is responsible for body position, reflexes, movement coordination, correct tone of muscles and stability. People with autism can often have trouble with correctly positioning their body, stability and coordination of movements. This is partly because of the two other senses as well, but also because of a hyposensitivity to the mechanoreceptors in the tendons.
Interoception
Interoception includes the thermoception (possibility to perceive temperature and regulates body temperature) and the nociception (possibility to perceive pain), as well as all the other bodily sensations like hunger, thirst, pain, toilet urge, flatulence, intra-abdominal gas, nausea, etc. Notice that pain is listed twice, as 'nociception' and as 'other bodily sensation'. This is because nociception is a complex thing. Nociception is pain through a stimulus within a tissue by either thermal, chemical or mechanical. But pain can also derive from other sources, for example pain from nerves is called neuropathic pain. It's a separate study on its own, but the distinction could be relevant, because for example, I'm hyposensitive to nociception and hypersensitive to neuropathic pain stimuli. Meaning, I won't feel I'm overstretching my muscles and creating an inflammation around or even doing a little damage to a nerve. Ending up with a neurogenic inflammation pain and sensory loss across an entire nerve branch for weeks, which is excruciating for me. But hey, I was able to bend my arm backwards and get that paper from behind the cupboard without moving it.
Integration
It's useful to make an inventory in what categories one is hypo- or hypersensitive for certain stimuli and what practical problems it creates for you. Beneath this sensory system inventory worksheet I have included mine too, so you have an example as well.
Mine looks something like this:
It's probably not finished yet, but I thought I might already share it. How I think my sensory system works together or influences each other for me, that I found out up until now (the faint and bolder green lines are both interactions):
In my previous posts I wrote about modi. Modi are a complex concept and it took me some time to figure out what they were and how they worked in me. I see them as a certain state of being, a collection of emotions, thoughts and behaviours.
There are four main modi domains, namely emotional (or child) modi, critic (or parent) modi, (dysfunctional) coping modi and healthy (adult) modi. They all have different subcategories, and only you can find out and decide which modi are applicable to you. Down here I have created an extensive list of modi and a worksheet in which you can work out your modi. You can define which emotion, thoughts and behaviour generally accompany each other, and what experiences from your past lead to this triad. You can also record what basic emotional need you're actually missing, and what the pros and the cons are from these modes for you.
I have created a little booklet with all the modi inventories written out applicable to me. It helps me identify certain triads of emotions, thoughts and behaviours, it makes it easier to integrate them in trigger schema or mode flashcards and counteract on the emotions, thoughts or behaviours I experience as uncomfortable. I have also included the schema inventories in this booklet, because they are closely related to the modi and I use them next to one another. I can for example see that some schemata put me in certain modes every time.
Over time I will share my modi inventories with you, just like my schema inventories and trigger schemata. I believe that with sharing these we can all learn and get better over time, we can advise each other in how we deal with certain things. I hope that you will find the courage to share these too, maybe at first only in your personal circle with people you trust or maybe it is easier to share it anonymous online. But feel free to share them with me, because I can learn from you too.
While on my unmasking journey I kept so many journals, I could consider it a problem, but it seems to be a comforting thing (I have collected about a hundred journals right now, not kidding). One of those collection of journals is my collection of trigger schemas. Those trigger schemas helped me figure out what was triggering me and gave me some structure in how I could healthily unmask myself. They have evolved over time and right now I am quite happy with how they work.
Because I had a lot of problems with identifying my emotions it started as a logbook for Situations and Emotions only. When I got better at identifying my emotions, I then added the bodily feelings that accompanied those emotions.
Every time I felt a certain way, I also had certain feelings in my body, which could help me identify earlier what emotion I was actually experiencing and vice versa. Because sometimes, it’s also a bodily feeling that makes me have a certain emotion. I found that for me there are six major groups of primary emotions, and I could fit all secondary or tertiary emotions somewhere in those groups.
Emotions are accompanied by thoughts, so when I was comfortable in recognising my emotions and feelings, I started recording my thoughts to my emotions and the way that I responded or reacted to the situation or emotion. I wrote down what the effect or outcome was of all of this and I included which Early Maladaptive Schema got triggered and which Modi was fitting to my feelings, thoughts and behaviour.
I then tried to explain it from a healthy different perspective, if it was understandable why I felt, thought or reacted a certain way and what part was caused by external factors. I wrote down what was an overreaction from me and what early maladaptive schema caused this. An overreaction for example could get caused by masking for so long, that it's simply not possible to mask anymore and the bucket simply overflows.
After all of this, I would think about how I would like to feel, think or react in this situation and what my desired outcome would be. I would think about helping behaviour and how I could get support, but also how I could have compassion with myself and what affirmations I could say to myself to actually do this other healthy behaviour.
Integration
After some time, for example, I saw that I would often feel a lot of shame and disgust about my behaviour, and a lot of fear / anxiety. I would be afraid and ashamed that I would be rocking my head back and forth when getting in a state of concentration. It's a small thing, but I used to get bullied for it or people would make comments about it. The result was that I would keep my head straight through keeping my neck stiff, clenching my jaw and get neck pain and headaches afterwards. The schemata involved were 'defectiveness and shame', 'subjugation', and 'unrelenting standards and hypercriticalness'. The modi are 'vulnerable child', 'demanding parent', and 'punitive parent'. My coping modus in this situation is 'compulsive overcontroller'.
I used to want to "keep my head still", but right now I see that I was only making it worse. Because the helpful thought would be that I need the rocking to stimulate my vestibular system in helping me concentrate. That I'm allowed to rock my head slightly back and forth, that it helps me relax those neck and jaw muscles. The helpful behaviour is making sure I know how to deal with the comments when they get made, asking for help from trustees when I don't know how to deal with it. And, when it's really not appropriate or allowed to have a healthy alternative for this, that is actually working to release the tension I'm subconsciously feeling.
The filled in trigger schema for this situation will look something like this:
There is more helpful behaviour, like eating to still the hunger, drinking fluids with taste to still the thirst and stimulating my gustatory sense a bit more, going to the toilet to stop the urge, making sure I am not too cold and taking enough breaks, but I try to keep the things in that part doable in the moment for the wanted behaviour at hand. I think those things are contributing to the emotions, but not contributing to the wanted behaviour. When later on I'm making a flashcard from this trigger schema those things might have changed in another situation, but the items I included right now can be helpful almost always.
I love schematics. I love making and filling out schemata. I therefore use the theory of schema therapy a lot, and integrated dialectical behavioral and acceptance-commitment therapy as well.
It really helped me to figure out how much masking I was actually doing and creates some backbone to create alternative ways to healthy unmask and get support. So to help you understand what I’m talking about, I’m writing out the theory down below.
If you want to figure out what maladaptive schemata you have, you can fill out the Young Schema Questionnaire (YSQ-L3 or YSQ-S3 – long or short form)
Schemata
There are 18 early maladaptive schemata that people can have developed during their childhood and adolescence. They get developed by basic emotional needs that did not get met. It’s also really based on personality and temperament if and how a schema gets developed and coped with.
Abandonment
Mistrust and Abuse
Emotional Deprivation
Defectiveness and Shame
Social Isolation
Dependence and Incompetence
Vulnerability to Harm and Illness
Enmeshment and Undeveloped Self
Failure
Entitlement and Grandiosity
Insufficient Self-Control and Self-Discipline
Subjugation
Self-Sacrifice
Approval and Recognition Seeking
Negativity and Pessimism
Emotional Inhibition (Emotional Constriction and Fear of Losing Control)
Unrelenting Standards and Hypercriticalness
Punitiveness (Punitiveness to Others and Punitiveness to Self)
The schema “Emotional Inhibition” can be split up into “Emotional Constriction” and “Fear of Losing Control”, just like schema “Punitiveness” can be split up into “Punitiveness to Others” and “Punitiveness to Self”. This got proposed by Yalcin in 2021 in his paper (Yalcin, O., Marais, I., Lee, C., & Correia, H. (2021). Revisions to the Young Schema Questionnaire using Rasch analysis: the YSQ-R. Australian Psychologist, 57(1), 8–20. https://doi.org/10.1080/00050067.2021.1979885). You can fill out their revised schema questionnaire to make the distinction between those with the YSQ-R.
And now..
You can create a model of your schemas in how much they affect you. This is my model:
I use this model in my trigger schema to identify unhealthy or unhelpful behaviour. Because most of the time when I get triggered, one of my schemas gets triggered as well. This has led me into masking my autistic symptoms or tendencies, but isn’t necessarily helping me to have a balanced lifestyle. I will explain the trigger schema another time.
There are three coping styles or strategies to each schema, surrendering, overcompensation and/or avoidance. For these coping styles we have modi, which helps us give insight into what we feel and think and how we behave. But more on that another time.
Explanation per schema
Down here I’ve put the explanations per schema. The explanations are mainly taken directly from the book Schema Therapy: A Practioner’s Guide, and I slightly modified it in some parts, which is written in italics (Young, J. E., Klosko, J. S., & Weishaar, M. E. (2003). Schema therapy: A Practitioner’s Guide. Guilford Press. p. 14 - 17.).
Abandonment and Instability
The perceived instability or unreliability of those available for support and connection. Involves the sense that significant others will not be able to continue providing emotional support, connection, strength, or practical protection because they are emotionally unstable and unpredictable (e.g., have angry outbursts), unreliable, or present only erratically; because they will die imminently; or because they will abandon the individual in favor of someone better.
Mistrust and Abuse
The expectation that others will hurt, abuse, humiliate, cheat, lie, manipulate, or take advantage. Usually involves the perception that the harm is intentional or the result of unjustified and extreme negligence. May include the sense that one always ends up being cheated relative to others or “getting the short end of the stick.”
Emotional Deprivation
The expectation that one’s desire for a normal degree of emotional support will not be adequately met by others. The three major forms of deprivation are:
Deprivation of Nurturance: Absence of attention, affection, warmth, or companionship.
Deprivation of Empathy: Absence of understanding, listening, self-disclosure, or mutual sharing of feelings from others.
Deprivation of Protection: Absence of strength, direction, or guidance from others.
Defectiveness and Shame
The feeling that one is defective, bad, unwanted, inferior, or invalid in important respects or that one would be unlovable to significant others if exposed. May involve hypersensitivity to criticism, rejection, and blame; self-consciousness, comparisons, and insecurity around others; or a sense of shame regarding one’s perceived flaws. These flaws may be private (e.g., selfishness, angry impulses, unacceptable sexual desires) or public (e.g., undesirable physical appearance, social awkwardness).
Social Isolation and Alienation
The feeling that one is isolated from the rest of the world, different from other people, and/or not part of any group or community.
Dependence and Incompetence
Belief that one is unable to handle one’s everyday responsibilities in a competent manner, without considerable help from others (e.g., take care of oneself, solve daily problems, exercise good judgment, tackle new tasks, make good decisions). Often presents as helplessness.
Vulnerability to Harm or Illness
Exaggerated fear that imminent catastrophe will strike at any time and that one will be unable to prevent it. Fears focus on one or more of the following:
Excessive emotional involvement and closeness with one or more significant others (often parents) at the expense of full individuation or normal social development. Often involves the belief that at least one of the enmeshed individuals cannot survive or be happy without the constant support of the other. May also include feelings of being smothered by or fused with others or insufficient individual identity. Often experienced as a feeling of emptiness and foundering, having no direction, or in extreme cases questioning one’s existence. Also includes parentification to siblings.
Failure
The belief that one has failed, will inevitably fail, or is fundamentally inadequate relative to one’s peers in areas of achievement (school, career, sports, etc.). Often involves beliefs that one is stupid, inept, untalented, lower in status, less successful than others, and so forth.
Entitlement and Grandiosity
The belief that one is superior to other people; entitled to special rights and privileges; or not bound by the rules of reciprocity that guide normal social interaction. Often involves insistence that one should be able to do or have whatever one wants, regardless of what is realistic, what others consider reasonable, or the cost to others; or an exaggerated focus on superiority (e.g., being among the most successful, famous, wealthy) in order to achieve power or control (not primarily for attention or approval). Sometimes includes excessive competitiveness toward or domination of others: asserting one’s power, forcing one’s point of view, or controlling the behavior of others in line with one’s own desires without empathy or concern for others’ needs or feelings.
Also includes the feeling that one is responsible for things one is actually not really responsible for or can be held accountable to. The feeling that one should always be the one to help, e.g., because of the assumption that others will not step up to it.
Insufficient Self-Control and Self-Discipline
Pervasive difficulty or refusal to exercise sufficient self-control and frustration tolerance to achieve one’s personal goals or to restrain the excessive expression of one’s emotions and impulses. In its milder form, the patient presents with an exaggerated emphasis on discomfort avoidance: avoiding pain, conflict, confrontation, responsibility, or overexertion at the expense of personal fulfillment, commitment, or integrity.
When people are very punitive and have unrealistic standards, they often think they have this schema as well. Except they actually are having such high expectations of themselves that it is practically impossible to meet them (all). Then, they don’t actually have this schema, but rather only have hypercriticalness and punitiveness as schemata.
Subjugation
Excessive surrendering of control to others because one feels coerced — submitting in order to avoid anger, retaliation, or abandonment. The two major forms of subjugation are:
Subjugation of needs: Suppression of one’s preferences, decisions, and desires.
Subjugation of emotions: Suppression of emotions, especially anger.
Usually involves the perception that one’s own desires, opinions, and feelings are not valid or important to others. Frequently presents as excessive compliance, combined with hypersensitivity to feeling trapped. Generally leads to a buildup of anger, manifested in maladaptive symptoms (e.g., passive–aggressive behavior, uncontrolled outbursts of temper, psychosomatic symptoms, withdrawal of affection, “acting out,” substance abuse).
Self-Sacrifice
Excessive focus on voluntarily meeting the needs of others in daily situations at the expense of one’s own gratification. The most common reasons are: to prevent causing pain to others; to avoid guilt from feeling selfish; or to maintain the connection with others perceived as needy. Often results from an acute sensitivity to the pain of others. Sometimes leads to a sense that one’s own needs are not being adequately met and to resentment of those who are taken care of. (Overlaps with concept of codependency.)
Approval-Seeking and Recognition-Seeking
Excessive emphasis on gaining approval, recognition, or attention from other people or on fitting in at the expense of developing a secure and true sense of self. One’s sense of esteem is dependent primarily on the reactions of others rather than on one’s own natural inclinations. Sometimes includes an overemphasis on status, appearance, social acceptance, money, or achievement as means of gaining approval, admiration, or attention (not primarily for power or control). Frequently results in major life decisions that are inauthentic or unsatisfying or in hypersensitivity to rejection.
Negativity and Pessimism
A pervasive, lifelong focus on the negative aspects of life (pain, death, loss, disappointment, conflict, guilt, resentment, unsolved problems, potential mistakes, betrayal, things that could go wrong, etc.) while minimizing or neglecting the positive or optimistic aspects. Usually includes an exaggerated expectation — in a wide range of work, financial, or interpersonal situations — that things will eventually go seriously wrong or that aspects of one’s life that seem to be going well will ultimately fall apart. Usually involves an inordinate fear of making mistakes that might lead to financial collapse, loss, humiliation, or being trapped in a bad situation. Because they exaggerate potential negative outcomes, these individuals are frequently characterized by chronic worry, vigilance, complaining, or indecision.
Emotional Inhibition (“Emotional Constriction” and “Fear of Losing Control”)
The excessive inhibition of spontaneous action, feeling, or communication, usually to avoid disapproval by others, feelings of shame, or losing control of one’s impulses. The most common areas of inhibition involve:
Inhibition of anger and aggression
Inhibition of positive impulses (e.g., joy, affection, sexual excitement, play)
Difficulty expressing vulnerability or communicating freely about one’s feelings, needs, and so forth
Excessive emphasis on rationality while disregarding emotions.
“Emotional Constriction” and “Fear of Losing Control” as two different schemata can be explained as an over-control to shame or embarrassment to show emotions and as an anxiety to not being able to control or contain the emotions or consequences and/or impulses following the emotions.
Unrelenting Standards and Hypercriticalness
The underlying belief that one must strive to meet very high internalized standards of behavior and performance, usually to avoid criticism. Typically results in feelings of pressure or difficulty slowing down and in hypercriticalness toward oneself and others. Must involve significant impairment in pleasure, relaxation, health, self-esteem, sense of accomplishment, or satisfying relationships.
Unrelenting standards typically present as
Perfectionism, inordinate attention to detail, or an underestimate of how good one’s own performance is relative to the norm
Rigid rules and “shoulds” in many areas of life, including unrealistically high moral, ethical, cultural, or religious precepts
Preoccupation with time and efficiency, the need to accomplish more.
Punitiveness (“Punitiveness to Others” and “Punitiveness to Self”)
The belief that people should be harshly punished for making mistakes. Involves the tendency to be angry, intolerant, punitive, and impatient with those people (including oneself) who do not meet one’s expectations or standards. Usually includes difficulty forgiving mistakes in oneself or others because of a reluctance to consider extenuating circumstances, allow for human imperfection, or empathize with feelings.
