Neurodiversity and Mental Health

Meet 4 year old Kathy

Looking at this picture she looks like a happy kid, and from as far back as I can remember she was always seeking joy. She was so excited about this Easter picture being taken that she found the scissors so she could give herself a much-needed bang trim to look her best.

She was overflowing with energy, lit up every room, and had a boundless curiosity!

This little girl was me in 1969. A year later I’d be diagnosed with Hyperactivity.??

ADHD was not a diagnosis yet. The medical community was starting to identify, understand, and treat a genetic neurological disorder affecting a person’s ability to pay attention and, for some, control behavior.?

I was prescribed Ritalin at a time when it was a relatively unknown treatment. We’ll revisit this later.?

What this picture doesn't show you is that at about 5 years old I started waking up in the middle of the night and wandering the house in a panic. It wasn't a home where I could wake someone up to tell them that I was scared. So I just wandered. I have these same memories at ages seven, eight, and again at ten and twelve.?

This was five decades ago, and parents relied heavily on doctor recommendations, some mostly consulted General Practitioners rather than Pediatricians. At age seven a harness was the recommended solution to keep me in bed, which only served to create a bed wetting problem.

I was too young to recognize what was happening. I just knew something was very wrong.? But as awful as this was at night, my ADHD during the day was the loudest noise in the room, for me and everyone else. So from my pre-teen years and younger the night terrors were not a conscious thought for me during the day.

At age 15 things escalated.

Home alone on a sunny Saturday morning I found myself overwhelmed with an unreasonable sense of terror. Nothing was wrong. It was a day like any other. But I was terrified. I opened every curtain, every outside door, turned on every light in the house, wrapped myself in a blanket, and sat statue stiff on the couch praying I wouldn't die from the feelings in my body before somebody made it home.?

This was the first time I recognized that something bigger was going on.?

I was certain based on the story in my head that if I told anyone about this it would not only confirm my worst fears (crazy), but have consequences that I couldn't live with (…lock her up).?

So I hid?

I masked

And I tried as hard as I could to be ‘normal’.?

At age 17 these episodes of extreme panic leveled up. Having an under supported ADHD and Dyslexia academic experience, which I was advised required an additional 18 months to receive my HS diploma, I chose to quit school.? At the same time my parents split, I moved out of a less than ideal home situation and went to work full time.??

Needless to say there was a lot going on, so much stress, and a great deal to be panicked about, not the least of which was being thrown into the real world totally unprepared. This would be the first time I experienced three consecutive months of 24 hour a day non-stop anxiety and panic attacks, terrified to go to sleep at night, heart racing out of my chest, convinced I wouldn’t wake up the next morning.?

The panic attacks would happen again for three to four months stretches in 1997, 2018 and again in 2022. All happening during major life changes.?

In my generation these extreme and lengthy episodes were often referred to as nervous breakdowns.?

First, research from a NY Times article (May 2010) stated, “The phrase <nervous breakdown> was overused and near meaningless, a self-serving term from an era unwilling to talk about mental distress openly.”

Second, it’s not an official medical diagnosis.? As stated by Mayo Clinic, “What some people call a nervous breakdown may indicate a mental health problem that’s causing a mental health crisis and needs attention.”

Medical News Today states, "Nervous breakdown is not a medical term or a mental health diagnosis, since it does not describe a specific condition."?It has never been an official medical diagnosis.

However, there was still an incredible sense of shame and failure that came part and parcel with the label 'nervous breakdown' so I avoided any mental health labels at all costs.?

On the rare occasions I was willing to try medications, which as a rule my body didn’t respond well to, the solutions ended up being worse than the problem.?

The good news is that over the years I learned from others to ‘seek the helpers’. In 1997 I found a wonderful psychologist, Dr. Michele Steigleder. Along with therapy, she taught me mindfulness techniques.?These techniques became a part of the fabric of my daily life, along with my own strategy of avoiding anything and everything I could identify as an anxiety trigger.??

Unfortunately as a result of avoidance I had manufactured a very small life for myself. I wouldn’t fly on airplanes, drive on the highway, avoided elevators at all costs, to name a few.?

I did this until what I wanted for my kids and myself became worth it for me to white knuckle my way through all the things big and small that triggered me. I wanted them to experience vacations, to see far away family, and I needed to grow my career to support them financially.??

So I started taking actions that often triggered paralyzing anxiety.??

And I told no one.??

I just continued to hide.?

This all tied into my Neurodiversity (ND), although I had no idea how. I always knew that I was ADHD.??

I discovered my Dyslexia when my youngest son was diagnosed in 2007. I learned a great deal about my own Neurodiversity through three of my four children’s own Neurodiverse challenges.?

In February 2022 I learned the term Neurodiversity for the first time and my brain was on fire with self educating about ND as a whole, and self discovery about the specifics of my own ND.??

But June of 2022 was a major turning point for me.? I started becoming ill with several various things, none of which seemed related to one another. Among several others, the noisiest ones were back pain, chronic anxiety, middle of the night panic attacks, and insomnia.?

For the third time in 20 years I sought help from Dr. Steigleder. She was convinced that in part I was suffering specifically from a physical anxiety disorder.? She dug into the research and found a Psychiatric study that centered around the Psychiatric community looking at vitamin and mineral deficiencies, as well as nutrition, in patients prior to prescribing medications for mental health issues.?

Specifically, a study was done for people with physical anxiety disorders that found that taking 100 milligrams of B6 and 1000 micrograms of B12 together daily, for some people, significantly decreased their physical anxiety symptoms within a month to 6 weeks after starting. The study also stated that it was important not to take any B complex vitamins, only the B6 and B12.?

Having had many unpleasant experiences with side effects of prescription medications this was something that I jumped at. I didn't have high hopes, but I was desperate for a solution. Chronic anxiety and panic attacks are exhausting at best. It's one of the few experiences in my lifetime when I can say I experienced true suffering.

The result of trying this absolutely changed my life!??

Within 3 days of starting the B6 / B12 I was anxiety free!

It is the strangest and most significant physical experience of my life. I now refer to health and physical differences as ‘pre B6 / B12’ and ‘post B6 / B12’.

It’s been a?journey of learning how to live in a whole new body. The only way I know to describe it is that my body does not respond in the same way to what my brain tells it.?

?It’s like I’ve had a panic buttonectomy!

The best example I can offer is flying. About seven years ago my doctor prescribed half a pill of the lowest dose of Xanax 15 minutes prior to getting on a plane. It helped to take me down from every noise and bump on an airplane making me feel like I had been poked with a cattle prod, to a level of allowing rational thinking between the trigger and the physical feeling.?

I'm not sure if someone who has not experienced physical anxiety can to truly appreciate the gravity of this, but the Xanax for me was a helpful difference. That being said, it did not eliminate the problem.?It allowed me to fly, though now I was only exhausted the day of the flight rather than the day after as well.

My doctor has since identified that my body doesn’t metabolize the half life of Psychotropic medications the way it should. Instead of a drug like Xanax metabolizing with a normal half-life of 4 hours, my body takes over 24 hours to completely metabolize it. Needless to say although the Xanax helped, it had the unfortunate side effect of giving me a Xanax hangover, for lack of a better term, into the next day. The same thing happens with anesthesia and sleep aids. Now with B6/B12 I no longer need Xanax and flying is actually a pleasant experience. Never thought that would happen!

So let's circle back to Ritalin.?

November 2022 through February of 2023, despite the ongoing health issues, I pursued two separate Neuropsych and academic evaluations. I wanted to know exactly how my ADHD and Dyslexia show up in terms of challenges and strengths, so I could maximize appropriate strategies, and leverage my strengths.?

When I sat down to receive the results at the first evaluation I was stunned when she reviewed my IQ scores. I was speechless (which if you know me is a pretty big deal) and could barely hold back tears.?

Prior to testing I had prepared myself to hear that at best those scores would come out as average across the board. I was sure this would confirm my underwhelming level of intelligence, if my academic experience hadn't already confirmed this for me.??

When she shared that of the five categories two were advanced and one was superior, something inside me shifted. My very first thought was "Is this evidence that maybe I'm not stupid after all?"

Both diagnoses were unequivocally “ADHD Combined Severe” and both highly recommended stimulant medication to help with attention and focus.

And finally the two most relevant puzzle pieces fell into place.?

• the physical anxiety disorder
• the problematic metabolizing of psychotropic medications like stimulants and sedatives

These two factors made stimulant medications a non option for my ADHD.

And that extreme anxiety and panic as a kid could finally be explained.

From age 5 I had been prescribed a maximum daily dose of Ritalin, taken at 8 a.m., noon, and 4 p.m. without anyone realizing I suffered from a physical anxiety disorder, much less that the half life of these medications stayed in my system up to four to six times longer than normal.

It’s no wonder I couldn’t sleep and that my nervous system was on full tilt.?

You know that boundless curiosity that I mentioned earlier? That may be one of the greatest gifts of my life. I've always sought more information, even if I felt like I'd never be successful in a formal academic setting. I have always required knowledge almost as much as air.?

I'd like to say that I begrudge not having all the information come together at a much earlier point in my life, but that simply isn't true.?

The truth is regardless of how long it took me to get here, here I am.?

And just because I'm in my fifth decade doesn't mean that it's too late for anything.

In fact….it’s just the beginning!

I'm a firm believer that absolutely everything happens for a reason, and that from the worst experiences of my life something wonderful has come as a result of them.?

Until February of 2022 I'd had a life-long lived experience of hiding and feeling less than.?

Over the last two years I've been armed with all kinds of new information, including a new lived experience without anxiety, and resources to support my ADHD and Dyslexia, that make it safe for me to be seen as my authentic self.

I'm an active listener, and am always seeking information. As a result of that I found an open, positive, game changing conversation specific to Neurodiversity and mental health.

My shared experience is proof that no one else has to hide or feel less than ever again either.

Another wonderful thing that's come from many decades of life lived with Neurodiversity and Mental Health challenges is that today I get to share these experiences with others, as proof that whatever scary story is in your head that may be driving your choices, is very likely not true. There are other possibilities and solutions. It's safe to be your authentic self.??

When my now 24 year old daughter was a kid her ND presented in ways I didn't recognize, and she suffered silently, stressed out, forcing herself to achieve academically, all while trying desperately to change herself. Just like her mom, she was trying to fit her square peg self into the worlds inflexible round hole.

This journey I've taken through ND...I've taken every step of it with my four adult children. They've walked with me every step of the way. My learning and lived experiences have overflowed into their lives.

This intelligent, curious, serious, funny, compassionate, beautiful 24 year old woman, who has recently finished 6 years in the military, will start college next year. But first she'll have a full neuropsych and academic evaluation to arm herself with a 504 Accommodation Plan, so she can walk into an education setting equipped with resources to help her be successful. The goal is for her to have the best possible education experience, where she feels supported and accomplished.

Today I'm absolutely passionate about reaching as many people as possible who are living in that ‘hiding and less than culture’ to offer…?

…new information

…a new perspective?

…a different way to live?

and have the biggest life possible

Because you’re worth it,

...and 'this or something better is always possible!'