By Esme G, AXA Health Insurance
Processing Change (10 min read)
Change is something that many people struggle with, whether you are neurodivergent or not. For someone who is ND, this can be extremely difficult and distressing, even when it’s a positive change. It can sound negative to people around us and is often mistaken for complaining. It is understandably hard to appreciate if you are not someone who struggles with change or processing information and are able to “go with the flow”.
For me, if I experience a change, whether that’s a change in routine, location, plans, food ingredients (I did not deal with the new Haribo star mix flavours well at all!), I MUST verbally process it. The verbal aspect is extremely important to me and if I don’t speak it out loud, it will take me much longer to process (like years potentially). I am a vocal person and a lot of my stims* are verbal so being unable to speak or make sound is very difficult for me. It took me decades to realise this and now I know, I can try to avoid the fall out of how my attitude can be perceived. Ideally, I will talk to someone about it but if that’s not an option, sending myself voice notes to verbalise it can help.
For instance, last Christmas I made the effort to plan family visits to reduce stress of the holiday (massive family!). I made an itinerary, and once I had confirmed everything, I sent it to everyone involved. A few days before festivities started, my husband told me plans had changed. This normally would have led to an argument (and nearly did actually), but since I’d learned about my processing needs, I was able to reiterate to my partner before things got heated. This meant that he was able to respond appropriately by hearing me out without his own narrative to cloud his responses.
Basically, what it sounds like to anyone on the receiving end, is me complaining and getting angry and frustrated. It sounds negative purely because I cannot control my tone when I am feeling any overwhelm, confusion or overstimulation. I may not be angry by the change, but I will sound it, which can be hard to take for others. I often ask people I am speaking with, to ignore my tone as I have very little (if any) control over it.
The change in office location in Tunbridge Wells is a huge change! It has likely been quite an experience for many like me. You may have noticed people “complaining” on the lead up to and during the transition. This is us just trying to process the move, verbalising our anxieties, go through the process of change and figure out how to adapt. It’s a transition which is something Autistic and ADHD people find notoriously challenging.
Change for a neurodivergent individual is a process, like grief, it has steps:
Denial – try to stop the change/dispute whether it’s needed.
Anger/Frustration –Anger often isn’t the emotion we are experiencing, but many of us use it subconsciously as a defence mechanism for fear, disappointment, anxiety or irritation.
Bargaining –This part is where compromise will likely occur. We are trying to find a way to make the change either not happen or adapt it to our needs.
Sadness – if we are unsuccessful in bargaining, we will experience sadness or disappointment or regret. We are effectively grieving the loss of the situation before it was changed.
Acceptance – This is where we explore our options, make new plans, get on board with the change and implement alternative coping strategies. This can also include relief and excitement because we are not always upset about the situation being different to what we expected, it is more about struggling with the transition from one plan to another (especially if you are someone who needs to plan things to every minute detail).
The issue we often come up against, even when those around us do seem to understand, is that “change” is not easy to define. Well, actually it is, if you think about it literally, but many people don’t think this way.
When most people think of change, they will think about the bigger, more obvious life events (moving house, marriage, bereavement, going to big school etc). Some less obvious examples are:
Having a haircut (whether you like it or not) – change in texture and weight, how it sits on your neck etc.
Going to the shop and being asked to make a detour last minute or having to add something new to your shopping list.
Supermarket layout change.
Having plans with a friend and being joined by someone unexpected.
A food you like changes ingredients or packaging resulting in a changing to the texture and or flavour (yes some of us can taste the packaging flavour).
Any routine change, no matter how small can really throw us off.
The worst one for me (and I think many) is where I have made plans in my own head and forgotten that no one knows because I never communicated them. It can be quite funny sometimes, but it is ultimately quite stressful for both parties when it’s related to a change in “plans”. The ND is upset and frustrated and going through the change process (above) and the NT (Neurotypical) is unaware there was ever a plan in the first place. No one is at fault, it’s hard to process for both people and we don’t even realise we are doing it. I assume there is a more scientific explanation, but for me there is just too much going on in my brain, I can’t keep track of what I have and have not communicated sometimes. (Hence why you also may hear the same story or interesting fact over and over from someone who is ND)
The reason why we don’t like change and love predictability, is because of how our brains work. Here’s a good analogy I heard recently:
Imagine we are all computers, designed to take in information constantly from all sources about everything. A Neurotypical computer has a program that filters through all the information, archiving or deleting the small insignificant details that don’t seem necessary and finally sends the information that is needed. This computers input is not overwhelming because the filter has done its job.
A Neurodiverse computer doesn’t discriminate, there isn’t a filter, all the information is absorbed at the same time and sent as a whole. This causes the ND computer to have to work harder to identify significant details in new scenarios and means it will work better in familiar situations, it also means the ND computer is often at full capacity, meaning any additional information could cause it to overheat and need a reboot or stop working completely.
In context, this explains the need for familiarity and planning for those who struggle with change. It is why we also watch the same shows, listen to the same music/songs, eat the same foods, wear the same clothes and stick to the same routine, it also explains why we burn out so easily. There is a lot less work for us in familiar and predictable situations.
The behind the scenes work that is done by ND’s is grossly underestimated for the most part. If you hear lots of complaining when things change at work (or in your everyday lives), take it with a pinch of salt, and if you can, support the person by talking it through with them. Unfortunately, the way we process change can come across very challenging to Neurotypical people so we get shut down frequently which effectively delays the process of acceptance and prolongs the “complaining” aspect, so the more support we get in processing it out loud, the quicker we can get on board.
Asking too many questions (5 minute read)
I can tell when someone is getting frustrated with my barrage of questions. I often have to say, “I am not challenging you, I just don’t understand”.
Sometimes our questions are heard with a harsh narrative (not our own narrative), sometimes our questions are unwelcome or seen as us undermining.
Either way, as an autistic person, I need to understand my situation fully so that I can adapt to it, otherwise I don’t know how to behave. We don’t understand things the same way others do, we make less assumptions and take things literally a lot of the time, so the way things are explained to us sometimes, just doesn’t cut it.
As an ADHDer, I also need to know what’s in store for me with any new task or scenario because otherwise I can’t start the task. This is related to task paralysis*, executive dysfunction* and task avoidance*.
Most people in general tend to hesitate when asking questions in a classroom setting, just in case they are viewed as stupid (something an ND person has likely heard and felt a thousand times already), but sometimes these questions are what we need to ask in order to just, be. Being embarrassed or feeling silly is something I had to overcome, I would rather be embarrassed by asking a “silly” question than not be able to do my job or potentially make a mistake. Taking risks isn’t something I am at all comfortable with.
The challenge we get when we ask questions, is that we are so unbelievably often, misunderstood. If I had a £1 for every time I asked a question or made a statement, and the person I was speaking to heard something completely different, I’d be retired.
Example: if I say, “why did you do it that way?”, I don’t think the way it was done is wrong or inefficient or that I know more than the person I am speaking to. I am literally asking for clarity. ND’s often struggle to read between the lines, and we rarely have any narrative between the lines of what we say, so assuming, isn’t normally in our nature. We spend double the time thinking about how to word something to not cause offence and spend even more time explaining and repeating ourselves once we have been misunderstood. This is probably one of the most relatable and frustrating social interactions autistic people come up against.
Similarly frustrating, is how we are perceived when we are challenged. So, let’s say I understand fact a. You believe it to be fact B. You are totally sure of yourself and tell me I am not correct.
I will need to clarify what you mean, how you worked it out, and what evidence you have to back it up. This almost always comes across as though I am getting upset because I may not be right. It only comes across that way because asking questions is taken badly in general. I am not angry, and my tone is normal, but because I am not accepting your answer yet, I am perceived as “needing to be right”.
I heard this explained recently in the absolute best way:” I don’t need to be right; I need to be correct!” I want this on a t-shirt. If you disagree with me and you are correct, so long as I can understand your point of view, I am happy. I don’t care if you are right or I am right, I care that I have the correct information. But you will need to come with serious evidence if you are telling me I am wrong about one of my special interests.
So, if you are confused by why someone is asking questions that seem irrelevant, or they are asking what seems like too many questions, try not to assume this is a challenge and be patient. An excessive number of questions can mean someone is concerned or anxious, so even trying to clarify what they are not understanding, can be a quicker way to support them. You could ask what it is that they are not connecting with or talk you through their current understanding (kindly of course) as this will help you support them in future too.
Not paying attention (8 minute read)
I remember an instance when I was about 7 years old where my teacher was firing questions around the classroom. Back then I was shy, quiet, and not one to get involved in a discussion (the opposite of me nowadays). So, I did my usual head down doodling routine while listening to what was going on around me. I wasn’t diagnosed with ADHD or ASD back then, so my behaviour came across as though I wasn’t listening. The teacher called me out and repeated her question which I answered without hesitation. She was so shocked, she thought she had a gifted kid and turned into Miss Honey for a minute. She asked me about whether I like numbers, maths and started firing more maths questions. She soon realised that, while I was good at maths, I wasn’t the genius she was hoping for, I just looked like I wasn’t paying attention. I noticed this and masked it. Meaning that I absolutely did not achieve my potential at school, I was focused on looking focused instead of absorbing information.
This is common in NDs. We doodle, write notes, play games on our phones, fidget, stim etc. to help us regulate and focus. Physical movement helps to dispel some of energy we might have, otherwise our brains are unconsciously concentrating on the impulse to use that energy rather than focus on the important content (remember our brains don’t discriminate, we focus on everything around us).
Having subtitles on a video or the TV, gives me something to read while I listen, meaning my energy is not trying to escape elsewhere and I am able to pay attention. Otherwise, I need to fidget or play a game on my phone (killer sudoku is something I have played for years whilst watching TV, so it’s like autopilot now).
In meetings at work, if I can have my camera off, I will play games so I can absorb the content of the meeting, I haven’t done this publicly yet though as experience tells me that this isn’t deemed very professional. In person, I will doodle if I can, rock on my chair or play with various fidget toys.
Without the distraction of stimming or fidgeting, focus just isn’t achievable for many ND’s, especially those with ADHD. Doing the things that allow us to regulate and focus, often comes off rude, and we have all experienced being shamed or chastised for it at some point, so we try to mask it and end up being disadvantaged. Not getting to absorb as much of the information as others (ironic considering we actually absorb too much) or having to spend double the time and effort re-learning whatever the subject was, its exhausting. We also have the disadvantage of having that pent up energy, overwhelm and frustration building up over a period of time, which is never a good thing.
This is why many of us need silence and space when we get home from work, why our kids have huge meltdowns after school.
Lack of eye contact has a similar effect to fidgeting in professional and social settings. Lack of eye contact is “weird”, forgetting stuff is “scatty”, neither of those are nice comments to hear constantly, but scatty is less likely to get you bullied. I chose to make eye contact, forget everything, and be described as scatty rather than avoid eye contact and be isolated as a “weirdo”. This was before I understood myself.
Making eye contact is extremely uncomfortable for a lot of us. I have never had anyone comment on my lack of eye contact, but I am not afraid to say that I am exceptional at masking (not a good thing by the way), and I am not looking into your eyes. I am looking at your nose, forehead etc. If I do look you in the eyes, you wouldn’t know, because I won’t do it when you are looking into mine. Some people find it physically painful, I personally feel my “fight, flight, freeze or faun” response, jump to action if I am forced into eye contact, and I hear nothing that’s being said to me. I think many of us would love to not feel societal pressure to make eye contact, because even pretending is a lot of mental effort.
Masking, holding it in, and accepting continuous negative feedback over years and years, will seriously take its toll on your mental health and self-worth. In an ideal world, we would not have to carry this mental load for the comfort of those around us or, to avoid further shame. But unfortunately, for the vast majority of us, we do, and will continue to, because society is not made for us.
So, if you have someone in your meeting who is not making eye contact, seems to be playing with a toy or rocking their chair, don’t assume they aren’t paying attention or they’re being disrespectful. Just know that it is possible for someone with ADHD to hear what you are saying whilst listening to music, playing a game on their phone, stimming, and be thinking about their grocery list all at once (and probably more to be honest). You don’t want us to look like we are paying attention (unless you are genuinely speaking about one of our special interests), you want us to look busy if you want productivity rather than performative professionalism. ADHD is a dopamine deficiency. An NT has enough dopamine to get through the mundane and the non-thrilling, we don’t, so we have to get our dopamine hits from other stimuli, hence the fidgeting and stimming.
Try not to assume anything about a neurodivergent persons behaviour (we really don’t like it because its nearly always wrong). Most of us are happy to answer questions and we are the type of people who will ask “why are you doing that?” and want a genuine answer, so its probably ok for you to ask a ND person questions like that without offending them. Try to understand that if we can do the things we need to do in order to be present, our performance will DRAMATICALLY improve.
Side note: useful tip if you have a kid that does meltdown after masking all day, put some silly music on and dance like idiots for 10 mins together or something similar that releases energy and anxiety and hopefully gets a belly laugh or two. This also works for transitioning from one place to another (shared custody etc). My 3 year old and me have a setlist now, we start with Cherry Bomb by the Runaways, followed by anything by System Of A Down and then a calm down dance to Tiny Dancer by Elton John. But anything silly works, you don’t have to dance.
Thank you to Esme G for sharing this insightful piece.
