Medicine and NLD

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Every so often on this blog I talk about my Nonverbal Learning Disorder (NLD). It’s not easy navigating this world with that cloak hanging about your shoulders. Sometimes it’s a superpower and sometimes it’s a chain just waiting to tie you up.

As a 51 year old woman, I’m expected to navigate this world on my own and there are times when the challenge of it is simply too much for me. Such as when I have a meltdown in Costco because it’s the weekend before Christmas and I’ve been far too over stimulated. For those of you who saw me singing “Hakuna Matata”, it was either that or scream.

Interacting with health professionals can be extremely scary and frustrating. There’s an alarming number of them that are all too willing to use their education and experience to further their own agenda and stroke their egos. If you have NLD, that attitude can present an even bigger problem and make it more difficult for you to be an active participant in your own health care.

So I’ve come up with some suggestions on how to make it easier on you and your doctor.

  • Questions. NLD people become very aware early on that we ask a lot of questions. The result is people who are in positions to answer those questions, such as adults and teachers, become frustrated and angry with us. We learn to shut up and hide our confusion.

    As someone with NLD, you need to overcome this unintended training. Medical professionals are there to answer your questions. That’s a large part of their job. Not asking questions would be like walking into a McDonalds and being okay with not having your food cooked. However, expecting to come up with questions on the spot often leads us NLD people down a garden path that really has little to do with why we’re there. So, before you go to your appointment, take some time to write down those problems you want addressed. It doesn’t matter how silly or strange those concerns may seem. A silly concern (gosh, this mole looks funny) can have big impacts (melanoma). Write down a few questions beforehand while you’re in a comfortable environment and can take a moment to think about how you want to proceed.

  • No means no. You have the right to have a say in your treatment. You also have the right to delay a treatment until you feel comfortable proceeding. If you say no, then your doctor is obligated to respect your wishes no matter his/her personal feelings in the matter. Now, saying no may not be in your best interests and that is why asking questions is so vitally important.
  • Second opinion. Okay so you feel a bit hinky about your diagnosis or treatment. You’ve asked questions but still don’t feel comfortable. It’s here where a lot of NLD people run into trouble. Because we’ve been told so many times to “just accept it” or “stop asking questions” or “stop being weird,” we learn to distrust or ignore our instincts. This is another area we need to retrain ourselves in. If you don’t feel comfortable or have an uneasy feeling, get a second opinion. Or a third. Or a fourth. It’s okay to keep getting opinions until you’re satisfied. If you were buying shoes, you wouldn’t hesitate to go into store after store until you found a pair that felt right, would you? Why is your medical health any different?
  • Advocate. Some medical professionals balk at this but this is about you, not them. You have the right to have someone attend your appointment with you. The doctor may ask for verbal permission to talk about your issues in front of them but that’s fine. They’re just covering their butt. If a doctor doesn’t let you have someone attend with you or they refuse to see you with someone with you, get a new doctor. A friend or advocate can help you in your appointment by simply being there or by asking questions you may not have thought of before.
  • Internet. The internet is your medical buddy and medical enemy. There’s a lot of crap out there and much of it just plain silly. However, many NLD people are big readers and having a website we can go to can be a huge help in understanding. Ask your doctor/pharmacist/nurse if they can recommend a site where you can get more information.
  • Teach your doctor. Sadly, many medical professionals have no idea what NLD is or how to deal with someone who has it. During your first appointment be honest and tell them about the NLD. Then you need to teach your doctor how best to give you information. Some of us do well with deep information. That means getting down to the nitty gritty of the problem and asking a lot of questions. Others of us want the information on paper or a website so we can look at it at our leisure. Is it possible to email your doctor your questions at a later time? This can be a real time saver for both of you. You have time to think about things and formulate your questions while your doctor has time to answer them when he has a moment and isn’t rushed to see his next patient. Figure out what works for you and then tell your doctor. Some of us need other people to look us in the face while talking. For others that can freak us out.

Your health is important and you need to take an active role in it but that’s not as daunting as it sounds. Having NLD means we need to work around some issues but it’s by no means an insurmountable barrier.

NLD and Halloween

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Summer is coming to a close and that means Halloween is fast approaching. For those of us with Nonverbal Learning Disorder that’s a mixed blessing. Any time strangers are willing to give me candy is a good time (okay, there was that time with the van…). However, there’s something distinctly unnerving about having kids run up to your door and randomly shouting. So what can you do to minimize your stress during this time?

If you plan on handing out candy, here’s some ideas;

  • Have you or a family member sit on the porch (preferably in costume). This allows you to head off all that random shouting because you’re right there. If you live in a warmer climate, this might be an enjoyable way to spend the evening.
  • Put up a sign. This comes from an elderly neighbour who just didn’t want to deal with “screaming kids”. She made a very large sign and put it in front of the door saying very clearly to not shout and to ring the doorbell instead.
  • Set out bowls of candy to self-serve. This idea works better than you’d think. 99% of people who come to the door are considerate and only take one or two pieces. You may get the one jerk but they are few and far between. After all, no one wants to be the guy who spoils Halloween for others.

If you’re a parent going out with your NLD child;

  • Don’t use masks, use makeup. Masks can obscure vision and create anxiety in someone who already has sensory problems. As well, seeing through the small holes can increase problems with spatial recognition. This is going to be a recipe for disaster.
  • Try on the costume ahead of time. When your child is sensory sensitive, you need to work out the bugs ahead of time. That bit of spandex might not bother you but it might be a slow burn for your child.
  • Walk the neighbourhood ahead of time. Whether it’s you or your child, getting an idea ahead of time of what to expect is a good idea. NLD people lack focus so walk the area in daylight and look around. Is that pumpkin on the porch something you have to watch for? Take a notepad and take notes.
  • Set out rules ahead of time. You and your child need a set of guidelines to work by so you know what to expect. If you have NLD, you may want to tell your child to remain no further than 10 feet from you. If your child has NLD you may want them to return to your side every third house or so.
  • Emergency numbers. If, for some reason, you and your child get separated, it’s a good idea that both of you have cell phones. This may not be a good idea if you have a very young child but any child that can operate a cell phone should have one on them. Make sure they know how to use it (both phoning and texting features) and where the emergency numbers are. If you have a young child, make sure they know their full name (not all kids do) and their parent’s full name. If  you can help them memorize their phone number, that’s all the better.

Lastly, if you’re a home that is handing out candy, please consider having a teal pumpkin and having candy alternatives such as small toys. There are children with medical issues who cannot participate in Halloween because of them. The teal pumpkin lets parents know that your home has candy alternatives. Toys for this purpose are relatively inexpensive at places like the Dollar Store.

Suicide & NLD

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again the issue of suicide has popped up again on the media radar. Both Kate Spade and Anthony Bourdain have managed to bring it to everyone’s plate and now we get to watch as social media spins out its version of “thoughts and prayers” in the form of “reach out.” Don’t get me wrong, it’s good advice. Completely useless to someone who is currently flirting with killing themselves but good advice. What happens, though when you add Nonverbal Learning Disorder to the mix? Are we NLD Superheroes more susceptible to suicide as someone once suggested to me? To be honest, I don’t know. All I can talk about is my own experience with suicide and suicidal ideation.

If I’m going to be completely transparent here, and I must for the sake of this conversation, I have to admit that I’ve attempted suicide. Suicide by fate, I call it. As a teen who survived abuse and found herself unwanted by her family (my sister was my abuser), I felt tired. Tired of fighting to survive. Tired of trying to reach out to my family again and again and being rejected. Tired of trying to figure out how to live in this confusing world. I was tired down to my soul and I just wanted to rest.

I was nothing if not creative so I decided to let fate decide if I should live or die. At this time I was involved in an evangelical Christian group and fate was another word for God. If God wanted me to live, He’d show me. So, I took to jaywalking.

Here’s what would happen. I’d need to get from one side of the road to another. Didn’t matter what road it was, a residential street or busy thoroughfare, I’d jaywalk. However, I never bothered to check for traffic. I don’t know if any gods had their hand in my survival but even though I came close many times, I was never hit by a car.

My life at that time was pure chaos. Evangelicals pretended to care about my soul while  they dictated how I should live while my family showed no interest in where I was or who I was with. At the time my Nonverbal Learning Disorder was undiagnosed and I may have had a celestial being or two looking out for me because I never wound up on the side of a milk carton, either. Despite many opportunities to end up there.

So what does any of this have to do with Nonverbal Learning Disorder?

As I stated earlier, post-celebrity suicide is when everyone on social media advises those with mental illness to “reach out.” If you have NLD, that’s a whole new level of WTF.

Those of us who have to live with NLD are the proverbial odd shaped pegs trying to fit in a square peg world. We pretzel ourselves into being something we’re not just so we can be seen as high functioning. This places an unbelievable amount of pressure on us and only makes the existing anxiety and depression that are NLD’s sidekicks that much harder to control.

Having NLD means functioning in a different vibration from the rest of the world. The resulting clash that comes when our functioning meets the tidal wave of “normal behaviour” ends up in anxiety and depression. Does this automatically put NLD people at risk of suicide? I don’t know. I have no answers.

What I do know is the advice to “just reach out” is useless. As someone with NLD there’s a few questions I have about that. Reach out to who? Tell them what? When do I reach out? Is there a guidebook I can consult? Communication is one of the problems people with NLD have. Are the people we’re reaching out to aware of that? If so, do they know how to understand us?

Suicide is a problem and feeling isolated is a part of it. So instead of saying “reach out,” I’ll give some different advice. Go out and learn what your options are. NLD people are great at gathering information. So go out and use that to your advantage. Learn how to access the medical community. Learn how to build a network of support and coping mechanisms.

I don’t have any answers when it comes to suicide and NLD. All I know is what I’ve experienced. If you’re feeling suicidal, please know you’re not alone.

High Functioning Garbage

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Recent events have me ranting on about the label “high functioning” to the point where I’m almost frothing at the mouth. I’ve had this label all my adult life and I’d like to shove it up the mental health industry’s collective ass. Where it was once meant as nothing more than a measuring stick to those who had been trained in understanding such things (those people with PhDs behind their names), it’s become nothing more than a banner for the media and Hollywood to wave around while they pretend they know what they’re doing. In truth, this label does more damage than help and there is little or no understanding that comes with it.

Originally, the term “high functioning” meant someone who was able to function within society with minimal difficulties. That doesn’t sound too bad, does it? The insidiousness of it is disgusting and we should start demanding it be dumped from our collective lexicon. Here’s what happens; the mental health professionals, psychiatrists and psychologists and such, get together and determine what is normal functioning in society. They decide on this narrow band of behaviour that includes employment, socializing, learning, etc. Now, if you behave according to those parameters, then you’re high functioning. There’s a few problems with this.

No one really knows what “normal” is. Is a family with a single mom “normal”? Then what about a family with two dads? Does that become abnormal? Or what about a family with a mother and father? Is that supernormal or ultranormal? What is the goal we’re reaching for here? Truth is, no one really has a lock on this. Psychiatrists and psychologists have an idea of what normal is but it’s a narrow bandwidth that isn’t able to adapt to a society that is in a constant state of flux. What was normal in the 1950s is no longer normal today and that’s all right. Society changes as humans adapt to their environment and needs. It’s what evolution built into us. So now we have a bandwidth that defines normal functioning in society that can’t adapt to change.


When I was about 8 years old, there was a boy living in our complex who had autism. He liked to sit at the door and watch the cars go by. He was especially enamored with trucks and would excitedly scream when they went by. Some of the truck drivers got used to him sitting there and would honk as they went by. This would send him into fits of excited rocking and arm waving while he giggled happily. We kids loved playing with him. He was always up for a game of tag, even if he didn’t really understand the rules and was always good natured and happy. We knew that we weren’t to touch him, he didn’t like that, so we’d wave at his face and that counted as a “tag”. The adults, though, tried to discourage us. They were concerned about us playing with the “retard”. He didn’t know his own strength, they said, and he could hurt us. Didn’t matter. We played with him and he played with us. That boy taught me more about acceptance and understanding than anyone else in my life. Yet, he was considered “low functioning”. To us kids, he was just a playmate. We didn’t care about his functioning.

I have Nonverbal Learning Disorder. If autism and ADHD had a love child, NLD would be it. Very little is known about it and very little research is done on it. Yet doctors classify me as being “high functioning” as I can navigate society. So what makes me different from that boy? A Bachelor of Arts degree? An ability to weave words into a magical world? My determination? Why am I any better than that boy who was able to teach me so much about compassion and happiness? Yet, if you look in the media, there is a clear difference. Watch any episode of “Criminal Minds” to see the difference between someone with a mental illness who is “high functioning” and someone who isn’t.

The difference? I learned to hide who I am and that boy didn’t.

That’s it. I’m able to navigate society because I don’t make the normies uncomfortable. I don’t make them cringe inwardly when they talk to me. They don’t have to suppress any feelings of pity when I’m around them. I can look, act and talk just like them so I’m acceptable. If they knew the cost I paid to be able to do this, they wouldn’t be so comfortable. I would give them more nightmares than that boy ever could.

I learned how to act and talk like the normies at the hand of my abuser. I was psychologically and emotionally abused all my life and learned fast to please my abuser. One of the things I learned was how to not talk about my “stuff”. To keep the anxiety fears buried deep even as I smiled and shook hands. To never cringe when someone touched me. In all things I had to make sure my abuser was happy and nothing was sure to bring down her wrath like talking about stuff best kept to myself or in the family. To this day it’s nearly impossible for me to talk about what goes on in my head because I’m afraid of being punished.

Until people start accepting that normal is a spectrum and not a bandwidth, we will get nowhere with mental health issues. We won’t ever accept men talking about depression or women talking about eating disorders. We won’t be able to see people in all their quirks and strengths and weaknesses. We will always demand they behave within accepted norms. Until the term “high functioning” is banished, we will get nowhere.

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