Finally, I was diagnosed with ADHD. Here’s what that means

Even today, ADHD often goes undiagnosed in women

Sherry Toh avatar

by Sherry Toh |

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“You and our baby brother should count yourselves lucky,” I told my brother Gabriel after my first appointment with a psychologist for attention-deficit/hyperactivity disorder (ADHD). “If I have ADHD, it means I have two disabilities and lost the genetic lottery twice, yet you guys are fine.”

Gabriel laughed at the comment, adding, “If you have ADHD, you’re like a quadruple minority! You’d tick every diversity box, with a physical disability, a neurological disability, your bisexuality, and your gender.”

I rolled my eyes but couldn’t help but giggle. My brother’s jokes might offend some, but to me, they make the scary things in my life much more manageable.

Yet despite the jovial tone of our conversation, having two disabilities is no joke. In fact, it’s a lot of work for me to stay functional.

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A diagnosis comes into focus

When I received the results of my ADHD assessment a month later, I was a little surprised, but also not.

I wasn’t surprised that the results confirmed my suspicions that I have ADHD. Almost everyone I’ve told about my suspicions essentially responded by saying something like, “That makes sense. You fit the criteria.” I have a brain that runs wild, I experience mood swings, I frequently complete other people’s sentences, I’m regularly distracted and lose my train of thought, I fidget, I chronically procrastinate, and I’m practically nocturnal — to name a few traits I share with friends who have ADHD.

What I was surprised about is the subtype of ADHD I have, as well as the fact that I now have a diagnosis.

ADHD tends to more commonly go undetected for girls, and for much longer, than boys. Many women aren’t diagnosed until their 30s, despite the neurodevelopmental disability appearing in childhood. Until recently, research about ADHD usually focused on boys, who tend to be more disruptive in social settings.

From friends, news articles, and social media, I’ve heard of women with ADHD who were misdiagnosed and didn’t think they had it for years. In my case, I was denied an assessment at a public hospital here in Singapore due to the fact that I have SMA. I wasn’t told why. Instead, I had to go to a more expensive private clinic.

Suffice to say, my hopes for a diagnosis weren’t high.

But lo and behold, I was diagnosed with the combined subtype, which is classified by a patient showing five or more symptoms of both the inattentive subtype (inattention, memory problems, etc.) and the hyperactivity/impulsivity subtype (restlessness, impulsiveness, etc.).

Given my SMA, I wasn’t sure if my symptoms of hyperactivity/impulsivity would be taken into account. I figured that someone who can’t walk is bound to be so chronically understimulated that they’re as restless and fidgety as I am.

But given my ADHD diagnosis, maybe my chronic understimulation wasn’t caused by SMA after all? Or maybe it was, and my psychologist recognized that both conditions could work together to elicit certain behaviors.

The next steps

Every person I’ve told about my diagnosis has asked how I’m feeling. Right now, I’m mostly relieved to have answers. It feels like I have a clearer perspective of myself. I now know why the slightest thing can knock me off course for the day, why I get overwhelmed easily, and why I ramble on and on.

But this knowledge is a double-edged sword. Now that I know I have two disabilities, it’s on me to ensure that I’m properly managing them. One can feed into the other. If I’m fatigued because of SMA, the inattention caused by ADHD increases. If I’ve had too much coffee to manage the dopamine deficit from ADHD, my heart rate can become too accelerated and make it harder for my SMA-weakened lungs to breathe.

I’ll have to keep better track of what I eat and drink and how much sleep I’m getting. I’ll have to take care of regulating my moods before I say or do something I’ll regret. I’ll have to figure out why I can’t complete certain tasks on a given day. These are all good things to practice regardless of your health condition, but I wasn’t really doing it before my ADHD diagnosis. I don’t have an excuse now.

I’m also grateful it didn’t take my entire life to be diagnosed with SMA. It feels silly to say, because SMA is a physical disability, but I was misdiagnosed for months as a baby. As with ADHD, there are treatments for SMA these days, and it’s important we get children the correct diagnosis to treat them as soon as possible.

I don’t know how I feel about being a “quadruple minority” yet. But I do know there are things I can do about it, and that means everything to me.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.


J P Haldane avatar

J P Haldane

I am beginning to think there is a genetic component to Scoliosis in general. Maybe a tad on the SMA side but not as depilating. When identical twins share it, it cannot be idiopathic.

Desiree Sheehy avatar

Desiree Sheehy

I have been seeing a neuropsychologist because I know there’s something going on in my brain I need help with. Like, my dad has adhd and a bunch of other stuff as well, I’ve been questioning if I’m autistic but all I’m being told is that the rules are made for someone who’s able bodied. You described a lot of similar feelings I get though so it really makes me wonder.

Thanks for sharing!!

Ester Milostná avatar

Ester Milostná

Omg, it's possible! I'm thinking about it, if someone with SMA can have ADHD, fot long time yet. My brother was diagnosed with ADHD, my mum behave similar (people say) and I feel similar to - I'm not able to lie down without doing something for more than few minutes, i often move my foots whiel siting or at least do something with hands, I'm disorganized, with mood switches, not able to concentrate for one task for leng time and so on.. But im slow like snail, i can't be ADHD - i thought till now hh.


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