How it Feels to be Neurologically Diverse

Three years ago I was diagnosed with Adult ADHD. Not surprising really because in hindsight I should have been diagnosed with ADHD when I was back in primary school.  With support from my Psychiatrist and medication (Dexamphetamine) I am managing how I work much better and my focus has improved considerably.  Since the ADHD diagnosis  I have been reflecting on my behaviours and impact and identified that I also meet the criteria for Autistic Spectrum Disorder (ASD), or previously Asperger Syndrome.

Essentially, I am neurodivergent. Neurodivergence is a concept originally attributed to the 1990s sociologist Judy Singer, and is a non-medical umbrella term that describes people with variation in their mental functions, and can include conditions such as autism spectrum disorder (ASD) or other neurological or developmental conditions such as attention-deficit/hyperactivity disorder (ADHD).

I write this article to describe my experience of being neurologically diverse, and in particular how I have ‘masked’ my natural and hard-wired behaviours and thinking. Masking is essentially when a person presents to the external world what is socially expected while doing their utmost to manage their internal emotional and cognitive reactions to the world around them.  The evidence suggests that young girls with ASD are most prone to ‘masking’ and in many cases go undiagnosed resulting ultimately in not meeting their potential.

What are some of my signs and symptoms of ASD with ADHD?

I share below what I observe and know of myself and what others have said that all correlate with elements of an ADHD & ASD diagnosis:

• I have very well established routines and habits that provide me with structure. E.g. pizzas Friday night and scones Sunday morning
• I have a deep hard-wired response of ‘No’ when a plan is randomly changed or requested to change.
• I am super sensitive to taste, texture and smell and as a result eat no fruit at all (except an apple maybe once a year) and have what others would describe as a bland diet.
• My paddling mates call me ‘professor’ because I am always analysing the data from the session and providing a commentary on the value of the session.
• I have on numerous occasions been described as ‘too blunt’ by my family, friends, work colleagues and clients.
• I have been given feedback that I miss non-verbal or social cues and make poor judgement about what I say.
• I have often been given feedback that I am talking too loudly and yet have no sense of this myself.
• I am known for my direct nature and calling it as it is.
• I take what people say literally and really struggle with innuendo and sarcasm. On so many occasions I am just completely stumped on how to react or what to say.
• I have a hard-wired response to completely shut down when faced with strong emotional stimulus or reactions, and so many occasions in my past where I wish I had responded differently.
• I have always struggled in social situations and become really anxious and prefer to avoid social interaction.
• I had a severe stutter through high school and the first couple years of university which through some work has gone away (although when stressed or anxious it can reoccur).
• A non-verbal IQ that is significantly higher than my verbal IQ (VIQ is in the superior range and NVIQ in the very superior range) resulting in some difficulties expressing myself and communicating with clarity.
• A strong emotional response to any change that is unplanned or an expectation to change that is not within my plan.
• I frequently unknowingly walk into objects (usually with sharp edges) and only realise when I notice that I am bleeding.
• From early Primary School to this day I always carry a lip balm in my left pocket and two tissues in my right pocket (unless I am swimming or paddling on the ocean).

These are a few of my behaviours and responses that I experience.  On their own there is nothing unusual or necessarily out of the ordinary.  However, when there is consistent evidence of each of the above it paints a picture of an ADHD and  ASD diagnosis.  I have not pursued a formal diagnosis of ASD as I have no need for the actual diagnosis but instead have completed informal assessments to provide personal insight and understanding.

With a deep understanding of myself and the potential hard-wired nature of my way of being I can then work on strategies that I need to put into place to manage myself and my impact. When I don’t manage myself well the impact can be quite unhelpful for both me and others.

How do others experience me and what is the impact on others?

When I reflect back on my life there are too many examples of the negative impact of my neurological diversity to write them all down here, but I will describe just a few:

1. On numerous occasions when invited out to dinner our friends have had to ‘specially’ cater for me as I have specific things that I eat and many things I don’t eat. This is embarrassing for me, my wife and no doubt frustrating or in the very least annoying for our friends.
2. I interpret communications very literally. On a multitude of occasions my wife has requested me to buy something from the shops and I interpret the request very literally and return with what I believe is exactly what was requested, and then it turns out that I should have thought more about what I was buying.  This is no doubt frustrating for my wife, but equally frustrating for me as I have no idea how to actually get the requests right.
3. My paddling mates will often at the last minute (from my perspective) suggest a downwind paddle in the afternoon, and my immediate response is “no”. One of my friends who knows me well challenged me back with the comment: “do you want to think about that for a moment?” which is a great response as it actually got me reflecting on my immediate response.  Once again, very frustrating no doubt for my friends who are actually making an effort to include me.
4. I have received feedback from my work colleagues and even clients on how my style has been perceived as very direct, or challenging and even ‘aggressive’. I applaud their courage to provide the honest negative feedback and appreciate the effort taken. In many cases my experience of the situation was that I was being open and authentic. A classic example of me allowing my tendencies to play out without awareness.

Masking (While Managing my Impact) is Exhausting

There are often significant differences between my experience of my inner world  and what people around me see and experience.  I have always been very conscious of what is expected of me and have worked hard to meet these expectations and manage my inner world to minimise the negative impact on others around me – this is what we call ‘masking’. Almost every person who is neurologically diverse implements some form of ‘masking’.

Unfortunately, every now and then my ‘masking’ fails and the people around me see and experience my inner workings, and this is usually not constructive i.e. too direct & blunt.  As I get older and more self-aware I am increasingly aware of how much energy it takes for me to maintain the mask.  I realise that either when I am tired or when I misjudge the situation my inner world manifests in my behaviours.

Masking is exhausting. Managing the internal workings requires a constant conscious filter, and deliberate effort to slow down and think before I speak or respond.  It requires a constant management of impulse and behaviours.  It is exhausting. 

There are times when I wish I could just be ‘me’ without any masking or softening of my impact.  I am fortunate to have a group of close friends and family who are accepting of my style and neurodiversity where I feel more comfortable to be my authentic self.  However, I know that in the business that I am in and the work that I do I need to mask.  When I don’t mask I say and do the ‘wrong’ thing, which could have significant impact on client relationships and credibility. 

I share this because it is important to know that people who are neurologically diverse do not intentionally create harm or distress, and in many cases are working very hard to manage themselves, but every now and then the mask is not effective.  This is not because we lack self-awareness – we are acutely aware, it is because masking is exhausting and sometimes the masking fails.

So what does it feel like to be Neurologically Diverse?

By now you hopefully get a sense of what it feels like for me.  You probably have thought of people around you who may also be neurologically diverse, or you know of people in your life who are neurologically diverse. I would like to give you a sense of what it feels like for a person who is neurologically diverse.  We often experience quite negative emotions.

1. Anxious: Anxious about speaking in public, anxious about meeting people, anxious about being pushed into situations that are outside of my control and comfort level.
2. Confused: Sometimes I just don’t understand why someone might have taken offence by what I said or I am confused about how to interpret what someone has said.
3. Frustrated: In situations where I am struggling to get an idea across successfully or feel like I am not being heard I can feel this escalating frustration that seems to bubble up very quickly, and if not managed can result in a response of behaviour that is not great.
4. Embarrassed: Embarrassed by a behaviour or how I responded impulsively in the moment after the fact.
5. Disappointed: Disappointed with myself for not managing myself well enough.
6. Regret & Shame: Regret and shame about how I reacted situations that I cannot now change or do differently.

We definitely don’t feel these negative emotions all the time, but either in the moment or after the fact we sometimes experience these strong emotional responses that can have a significant impact in the moment but also long-term. 

Recommendations on how to work with me (and other neurologically diverse individuals)

We all need to treat each other with care, respect and authenticity.  This is a solid foundation for all relationships.  However, with someone like me who is neurologically diverse it is helpful to consider the following tips:

1. Be curious. If you observe a behaviour or communication that you think is not great engage in a conversation with me about what you observed with a mindset of curiosity.  In other words, describe what you observed but then explore my thinking and perception of the event.  It will open up the dialogue for both of us

2. Don’t beat around the bush. Just be direct.  In other words don’t start a feedback conversation with “how do you think you went” without first stating that you have some concerns about my behaviour and communication.  Once you have stated the intention of the conversation then go to point one above i.e. seek to understand.

3. Be clear with your expectations and requests. We follow requests to the tee.  Clarity works best.

4. Work with me or involve me in the planning or locking in of schedules and dates. Adhoc requests or making a plan without my input drives my anxiety through the roof and is very unhelpful.

5. Respect my routine and as much as possible support me with my routine. Of course sometimes things change, and in this instance providing a choice assist me to adapt from my routine. 

6. Clarify before judgement. If you perceive that I may have communicated an unintended message then have a go at requesting me to clarify what I mean in the context of you interpreting the message differently.

7. Respectful re-direction with a question. Sometimes I can get stuck on a topic or point and keep repeating the same thing.  Don’t tell me I am repeating myself – I know this.  But a well directed question can assist me to shift my focus.

8. Always request permission to offer feedback. When wanting to give direct feedback it makes a massive difference to my sense of control by requesting permission to offer feedback i.e. “May I offer you some feedback from my perspective?”.

9. Assume that I am self-aware and already know rather than tell me what you think I need to know about myself. I am actually self-aware (even though may seem otherwise) and I already know what is going on.  I usually have a reason for my behaviour and course of action.  Instead offer your experience of me from your perspective but demonstrate that you wish to understand my perspective.

Final Thoughts

When I reflect on my life to date I can recall so many situations and conversations that I wish I had been able to respond differently to.  I acknowledge that I can be a difficult person to work with.  I don’t intend to be so difficult or challenging.  I actually am doing my best to be the best possible version of me.  I don’t always get this right. 

Despite my obvious weaknesses, I bring some unique strengths and perspective.  I challenge status quo.  I am not afraid to speak up and willing to name the elephant in the room.  I can facilitate extraordinary shifts in teams through cutting through the noise to get to the core of the issue.  When on my game I can do amazing things in both my personal and work life.

If you know someone in your life who is neuro-divergent, your son or daughter, a work colleague, a close friend, or family member, then I recommend you consider engaging with their unique perspective and way of thinking.  Leverage their inner power and strengths.  Welcome their challenge and perspective.  Embrace their diversity of thought.  Trust their intent.

I welcome your thoughts and comments on the article above.  Please email me at greg@tlcsolutions.com.au.

Copyright © TLC Solutions Australia 2022