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by Esme G, AXA Health
15–20-minute read
This is a big question, and anyone who is diagnosed later in life will have been asked this numerous times. Many of us who are diagnosed late, struggle to answer this question as we are likely asking it ourselves too.
There are a few ways to answer, and everyone’s experience is different so I will explain as best I can from my own experience:
I was diagnosed with ADHD* at 32 after a sibling who already had their diagnosis, pointed out that I should consider getting a referral due to how much I could relate to her own experience. She was more obvious in her symptoms, and I had/have excellent masking* skills. But before her suggestion, I never even considered it. After my ADHD assessment, I had an occupational health assessment with Lexxic who spotted some traits and referred me for an Autism* and Dyspraxia (DCD)* assessment. I was diagnosed with both at 33. Again, I had never considered any of these things (although, I can’t believe I didn’t know I was dyspraxic, considering I struggle with my laces, cannot ride a bike and am pretty well known for being clumsy).
Before this, I was your classic “work hard, play hard” character who never stopped to breath. Not having a list of things to do the size of my arm was unheard of for me and if I didn’t feel rushed off my feet, I felt uncomfortable. I was a top performer in school and at work, climbing the career ladder quicker than most of my colleagues, and I was the go-to person for help and advice from colleagues, friends and families. If there was an event, I planned it/helped plan it, if there was a problem, I would solve it. You get my drift, I was a machine.
Effectively, what I was doing was not allowing my brain to slow down enough to even gauge my surroundings properly and I was pushing past any discomfort or sensory issues I had. After I had my daughter and was no longer able to keep up with the fast-pace I had set for myself, my mask wasn’t as powerful, and symptoms of ADHD (and autism) became clearer.
I didn’t know what my limitations were, I pushed through them and subconsciously ignored them. A good example of this is my aversion to strobe lights. My mother had epilepsy when she was young, so I assumed the unreasonable feeling of pure rage that I felt whenever I saw flickering or strobing, was down to that. Maybe I felt angry that my surroundings were unsafe for someone like my mum? Turns out I have light sensitivity issues as part of my autism, so this was one of my unidentified sensory processing difficulties*. People with ADHD tend to have emotional regulation* issues, so my overreaction makes more sense to me now. It was not a “normal” response to lights; it was my limitation on regulating my emotions.
The reason my sensory issues were not clear to me was because I had undiagnosed ADHD. If you have ADHD then you may be able to relate to the ability to basically go into your own world in hyperfocus*, therefore, having no sense of physical needs, time, or the environment around you. In hyperfocus, I can go all day without eating, drinking, or going to the toilet (especially if you have interoception* issues). I won’t hear anyone speaking with me and I won’t notice that I am either overheating or freezing cold and I won’t see/hear important notifications for entire days at a time.
Before I burnt myself out, I was on constant hyperfocus or overworking due to how much responsibility I piled on my own plate. So, of course, I didn’t notice my sensory issues most of the time. Now, I am much more aware and know that I do actually have extensive sensory issues (a lot of which are pretty obvious to me now).
Another explanation is quite specific to AuDHD*, and its partially theoretical as there are very limited studies around this, but there is supporting information out there if you want to check it out.
It is suggested that someone with both ADHD and Autism may appear less autistic due to ADHD symptoms masking their autistic traits. Once someone has started to manage/treat their ADHD, Autistic traits emerge. I can say I agree with this theory and notice it in myself.
It makes sense and I think its transferable for many conditions (mental/physical) that the less hyperactive, impulsive, and distracted your mind is, the more you will start to be yourself, and if your true self is autistic, then that’s what you and others will start to see. This transition can cause major skill regression.
Skill regression is something that is mainly only described in young children and there isn’t a huge amount of information about it with late diagnosed individuals (shocker!), but effectively, the behaviours you start to remove (masking, tolerating sensory issues, people pleasing etc), can often overlap the skills that you are also losing as shown in my example below. Another potential cause of skill regression is; once someone is diagnosed, they are likely to start listening to their body and mind more. No longer ignoring impulses, sensory issues, or overwhelm. Now that person is going to notice the input of information into their brain is much bigger, so the focus on the skill is diminished.
We are also in a different state to what we were before (mentally and physically). The context of the situation is different in the sense that last time we did said skill, we were overwhelmed, overstimulated*, unaware of our triggers*, and/or masking. Now the context is different so we can actually forget the details/skill, and many of us have to literally re-learn it.
Skill regression is a bigger issue for those who are experiencing an autistic burnout* and if someone is diagnosed later in life, they are almost guaranteed to be in burnout for a lengthy amount of time (several years for some people).
It’s not as simple as forgetting, and many people take their ability to remember skills for granted. I know when I was learning to drive for the second time, everyone I spoke with said “it’s like riding a bike, you can’t forget it”. Well, you can! I had to explain to my instructor that even though I had been a confident learner in my teens and gotten to test stage, I had forgotten literally everything (classically, he didn’t believe me and was surprised when I asked him to explain how to start the car and what each of the peddles were for). It took me a very long time to get anywhere close to the skill level I had previously gotten to. I was not being reminded; I was literally re-learning something I was pretty good at before.
Another explanation is our motivations. People pleasing* is really common in Neurodivergent* (ND) individuals as it’s a way for us to control a situation as well as “make-up for” the way we view ourselves. So, before diagnosis, someone might be a good cook, they considered themselves skilled, as did other people. They loved to please the people around them by cooking great meals.
Post diagnosis they may find their cooking results are inconsistent and they make mistakes they didn’t used to make. This is confusing to everyone including the ND individual as it’s not something that gets explained to us in advance, especially for adults and women as there is little support or information relevant to us, still!
Ultimately, the theory is that the motivator has changed (the motivator is especially important for those of us with ADHD or PDA* when it comes to completing a task) so if you are no longer in a people pleasing place (this is often a trauma response rather than a personality trait), then your ability to do that thing you only did for others, will dramatically diminish, destroying your focus.
It’s important to know that skill regression is quite distressing for us and can be really upsetting to feel like you have lost a skill. So, bare this in mind if you are noticing it in someone before you comment on it as we likely have already mentally beaten ourselves up over it.
Finally, and in my opinion most importantly, consequences are a huge factor. We don’t want to have meltdowns* or burnouts or any other adverse reactions to over stimulation or overwhelm by doing the things we did before that caused us distress. I am sure you can agree that this is pretty reasonable, especially if you have ever experienced a meltdown as they are most definitely not fun.
If any of this has resonated or piqued your interest and you would like to join our individual membership and chat with others please visit at Supporting Neurodivergent Individuals in Insurance, Investment & Financial Services (gaintogether.org)
Thank you to Esme G for sharing this insightful piece for Neurodiversity Celebration Week
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Glossary:
ADHD – Attention Deficit Hyperactivity Disorder
AuDHD – ADHD and Autism
Masking – Hiding your authentic self in effort to gain social acceptance. This can be hiding symptoms of a mental health condition or hiding neurodiverse traits. Masking aims to achieve “fitting in” rather than belonging.
Autism or Autism Spectrum Disorder (ASD) - refers to a broad range of conditions, genetics and behaviours affecting how people communicate and interact with the world. The spectrum is extremely diverse making it very hard to define.
DCD – Developmental Coordination Disorder – Fancy word for Dyspraxia
Sensory processing – The different ways your body and brain collects external and internal information. Vestibular (balance and spatial orientation), sight, smell, sound, taste, touch, proprioception (physical pressure gauge), interoception. The brain takes this information and tries to make sense of it/respond to it.
Meltdowns – normally result of overstimulation, overwhelm, sensory overload, emotional distress etc. Individual to each person but involves loss of control in behaviour and emotional regulation. Sometimes this can present as a shutdown where the person cannot communicate or move, they may cry uncontrollably, or it can be more explosive with screaming, shouting, breaking and throwing things. There is little to nothing that can be done to stop a meltdown (in fact trying can prolong it) so prevention is the best method of control here. Meltdowns normally result in a mild burnout and intense feelings of shame afterwards.
PDA – Pathological Demand Avoidance – a profile on the Autism spectrum - avoidance of everyday demands and the use of ‘social’ strategies as part of this avoidance. Demands can cause the brain to mimic a reaction to being attacked and spark the fight, flight, freeze, faun response.
Neurodivergent - differing in mental or neurological function from what is considered typical or normal. Some examples are, Autism, ADHD, Dyslexia, Dyspraxia, Dyscalculia, Tourette’s, BPD (Borderline Personality Disorder).
People pleasing – adapting your interests and skills in order to please and be accepted by those around you. This can be a faun trauma response in the sense that someone may adapt themselves in order to avoid further distress.
Autistic burnout – intense physical, emotional, exhaustion often accompanied with skill regression. Caused usually by masking and/or overstimulation and can be so severe it lasts years. Presents similarly to and can cause depression.
Triggers – stimuli that effects someone’s mood, wellbeing or ability to function. i.e flashing lights may trigger overstimulation in someone with light sensitivity issues.
Overstimulated – indication that a person is experiencing too much external stimulus to be able to process it. E.g someone may get overstimulated on a train due to the lights, the sounds from the train and the people, the feeling of the seat cover, the temperature, being touched often etc.
Hyperfocus - clinical phenomenon of “locking on” to a task making it extremely hard/impossible to focus on anything else, especially if the task is a special interest.
Interoception – essential element of our sensory system. Some with ND conditions have interoception issues making it hard to identify physical and mental triggers like feeling hunger, thirst, pain, fatigue, and the need to use the toilet. They may also find it hard to identify what emotion they are feeling.
Emotional Regulation – The ability to self-regulate your own emotions. This includes being able to recognise when you are feeling overwhelmed or out of control and taking steps to bring yourself back to a more manageable state.
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