NOVEMBER 5 — The horror stories of would-be cancer patients being gaslit by medical professionals are all too common.
Women, especially, are often waved off by doctors telling them that they’re just being “anxious”.
Yet I find that there is one kind of late diagnosis that many people don’t understand or relate to — being found to be autistic, have ADHD or other disorders that come under the umbrella of neurodivergence.
A friend of mine wept when he finally got his ADHD diagnosis in his late 40s.
Not because he finally knew he had ADHD but because the psychiatrist had told him that the decades of untreated ADHD and forced “masking” likely was the root cause of his developing bipolar disorder.
Bipolar disorder had wrecked a huge toll on his personal and professional life; he can’t help but think about how different his life could be now, and all the struggles he could have avoided.
What is masking, you ask?
Masking is the term used to describe how non-neurotypical people cope with a world that is not built to accommodate them.
In some cases it’s like jamming a square brick into a triangular hole.
Over time, the stress of masking can take an emotional and even physical toll on a person.
Why is this a problem? Because roughly one in seven people in the world are neurodivergent.
There is this perception that people are now play-acting as neurodivergent because suddenly so many people are, or think they could be.
The reality is that we are now just more able to recognise it.
It’s tiresome hearing people say autistic people didn’t exist before or that there are more of them now.
No, they were probably left to starve, shunned as village idiots, called changelings or victims of witchcraft.
Many people are also self-diagnosed because testing is expensive and laborious.
Did you know that testing for some neurodivergent conditions can take days and include interviews of relatives?
In private healthcare, testing for ADHD or autism can cost up to RM3,000 for adults.
For public healthcare you can go to a Klinik Kesihatan who will refer you to the nearest government hospital but prepare to be put on a waiting list that could span months.
In the case of women, it was once thought that autism more frequently happened in men — thus the stereotypical portrayals of autistic characters such as Dr Shaun Murphy in The Good Doctor.
In reality, due to these assumptions and dominantly skewed male samples, women who are autistic are often not easily diagnosed and often only get referred for testing much later in life.
“It is now increasingly understood that the diagnostic tools for autism are not as adequate at detecting autistic women largely due to these measures developed from predominantly male samples,”said Alina Friedman from Manchester Metropolitan University’s department of psychology in her paper, A qualitative exploration of the experiences of self-diagnosed autistic women and gender-diverse individuals who are not pursuing an autism diagnosis.
There is a growing movement towards autism being seen as an identity apart from being a medical diagnosis.
Autism, in general, is seen as only its extremes — such as non-verbal children or high-functioning but low-EQ fictional characters such as Dr Shaun Murphy.
What’s become even more troubling is that it’s now seen as a disease that needs to be eradicated, which frankly smacks of eugenics.
The Texas attorney-general suing the makers of Tylenol for the medication causing autism in pregnant women’s babies is just the latest in this fear mongering about autism.
I have family with official diagnoses and family who I think are so obviously neurodivergent their portraits should be in medical textbooks.
My friend who I mentioned earlier still gets sad and angry when thinking about the years he lost but at the same time he is also regularly visiting a psychiatrist for his bipolar.
If getting a diagnosis is either too expensive or too frightening a proposition for you, you can still seek out therapy.
Online services you can reach out to (with varying fee structures) include MINDAKAMI and AloeMind.
Full disclosure: I know the owner of AloeMind but I am not in the position to recommend any particular service.
There’s also the following free mental health apps you can try out first if therapy scares you, until you’re ready for that particular step:
Smiling Mind
PTSD Coach
Mindness Coach
CBT-i Coach
What’s Up
What people misunderstand about neurodivergence, whether medically diagnosed or self-diagnosed, is that it isn’t a license to behave badly.
Men, especially, are given more leniency in being abrupt, rude or callous.
See: Elon Musk, a grown man with autism whose mother to this day makes excuses for his actions and attributes them to his autism.
Yes, the world should be more accommodating of people’s situations and needs.
At the same time, whatever you have doesn’t absolve you of personal responsibility.
You can’t use autism or any other form of neurodivergence as the rationale for treating people badly but yes, you can be mad at a world for being rough if you can’t fit into that quaint, easy box labeled “Very normal, not weird human, able to follow instructions”.
When I was much younger I was fixated on Vincent Van Gogh and probably played that Don McLean song about him a little too often.
He was by all accounts just plain weird.
There was that time he decided to go all in on Christianity and gave up all his worldly possessions and there was that strange incident involving his ear, not to mention the fights he picked with his contemporaries.
Through it all his brother did his best to support him to the end of his life, which unfortunately ended too soon.
I wonder sometimes how Van Gogh’s life would be now that society is a little more accepting of personality quirks.
Maybe if he’d had therapy he’d have gone on to find stability in his life; his brother after all was just one man.
As I grow older and learn more about the world, I’ve realised we need to have a lot more compassion for other people, even when they seem least deserving of it.
There are people I know who became semi-catatonic in response to trauma and to those who think that could never happen to them, I tell you that you will never know until it happens to you.
It’s important to give people grace when they feel they have been let down by the world but also (gently, maybe) let them know that there can be a way forward instead of dwelling on past hurts.
Whatever that looking forward looks like, should be up to that person.
It’s easier to stay in one place, miserable than to try to change, especially when life, and people, have disappointed too many times.
There are things I understand better now that I have lived a few decades and wisdom is not so easily imparted as just telling someone something.
The world is vast and still so full of mysteries, what more the human psyche.
So give your friends and relatives grace when they learn too late that maybe there’s a reason they struggle to dance to music that was never meant for them.
May we all find our personal symphonies and leave space for others to dance to their own beat.
* This is the personal opinion of the columnist.
