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Neuro-blog

Thoughts, Experiences, and Information on Being Neurodivergent

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Is This You?

When I was in school, from the earliest years, I felt out of place and very confused as to how to fit in. I had been told to be kind, honest, and follow the rules. I did all of those things, and not only did most children not appreciate or want my company, neither did many adults. It seemed that no matter what I tried, I would get corrected, ridiculed, or shunned. Very few people felt moved to help me. Whatever they saw in me, they expected that I had the ability to figure it out on my own. I should not need help of any kind.

I used to cry and wonder why all of this was. I thought I was doing things the right way. So, what was wrong with me? Even when I’d ask for clarification, most of what I received from my peers and teachers was something along the lines of, “You know what you did,” or “If I have to explain it, you’re too stupid to understand.” One teacher that actually did try to help me, started her inquiry with, “Dawn-Marie, how can someone so smart be so stupid?” I had no answer for her. She did some research and found some things about my past that were helpful, and helped me discover that I am dyslexic. But there was nothing about me that led even her to believe that I was ADHD and Autistic. So, I graduated second in my class in high school but convinced that I was too stupid for almost anything. I would be 50-51 years old before I would figure all that out on my own.

Does any of this sound like you? Maybe you knew you were smart, maybe smarter than most, but still couldn’t make very many friends or get people to listen if you needed to correct them. Did your family try to tone you down, shut you up, or just get you to leave the room? Did you find yourself in more trouble than others, or did you end up quiet and painfully shy?

Have you considered the possibility that you may be ADHD or Autistic? Depending on what you believe those terms mean, you may have dismissed this idea already. But I’d encourage you to consider it. Many people, especially highly verbal and sociable guys or quiet and compliant gals, get missed for proper diagnosis and therefore, proper education, skills training, and healthcare.

Knowing if you are neurodivergent, and in what ways, can deeply impact your life for the better. Too many adults are struggling with brain wiring that does not serve them well if left without help, but with knowledge and the right assistance could be more of a superpower than a drain on your mental and physical health.

Getting diagnosed can take a lot of time and a lot of money. Don’t let this discourage you. There are plenty of really helpful sites and online groups full of information and people that are more than happy to help you figure yourself out. As an adult, self-diagnosis is valid, and sometimes all that is available.

If you would like some direct input and advice, email me through the Contact page on this website. We can set up an appointment and help you get started on your journey to figuring yourself out. That’s step one to a much calmer, richer, and more enjoyable life.

This Explains Everything

Some of my earliest memories are of me watching others as though I was an alien. I didn’t understand social interactions, and I needed to observe in order to gain the knowledge I lacked. My brother was very upset by this. He was a doer, not a watcher. He wanted me to leave my seat on the couch and to go explore the world with him. He didn’t actually want me to participate very much, though. Really, he just wanted the company, which was fine sometimes. We are more than six years apart. Often, I was just glad to be included. But for the most part, if I was going to have so little to do, I’d rather be left to my own thoughts and observations on the couch. If I was going to just observe anyway, why drag me outside where there was cold or mosquitoes? Why make me so uncomfortable?

My brother was not the only one who found me strange difficult to understand. One of my most vivid early childhood memories, probably because something similar happened every weekday, is of walking through my kindergarten class, viewing all the activity like it was some kind of slow motion dream or movie. Everyone felt separate from me, or I from them. I couldn't tell which way that worked. But I saw these little clusters of people my size, doing all sorts of things together, and I had no idea how to join in. So, I would ask my teacher if I could help her with something. There was always something she could give me to do that would allow me to be near my classmates without having to interact with them. So, in a way, I could understand my brother’s desire to have me nearby but not know how to involve me.

It wasn’t very long after I started school that I would begin to notice other children that seemed to have no idea how to include themselves. I would try to talk to these other children. At the very least, there always seemed to be a boy or two that had no interest in the other children and who were often in trouble for making too much noise or drawing or something. I hated it when other children were in trouble. I tried to save them as much as I could. If they were bullied, I’d stand up for them. If the teacher was upset with them, I’d volunteer to help keep them in line. I would try to be their friend, even if I didn’t understand the rules. They needed someone, and no one else was doing it.

This became a life theme - help those that no one else will or can. Fast forward to today, and I now understand why I felt both so different and so moved to help, why getting involved was way outside my abilities, and why many people excluded me. I’m autistic. I realized this when I started getting clients that were on the spectrum, and I embarked on extensive research about adult, “low needs,” autism in order to help them better. With each book and blog, each new podcast episode, I felt like I was researching myself. I began making connections, not just with how “other” I always felt, but with my extreme lightheadedness, my inability to speak in overly stressful situations, even things that I used to connect to depression and PTSD. Autism explained all of it so much better than anything else. Add to that my eventual realization that I’m ADHD, and I had a new perspective on my life. (I’m dyslexic too, but that’s for another blog.)

And with this new explanation, I was able to begin new skill building. Eventually, I was able to be in a loud party setting for two hours instead of ten minutes or less. I was able to understand physical symptoms and why they were happening, offering myself care, compassion, and alternatives to the stress triggers. Now that I had better information about how I’m wired, I was able to reevaluate past experiences and understand them better. Understanding gave me things I’d been searching for nearly my whole life - a better path to participation and inclusion.

If you or someone you know seems to struggle with being around others, loud noises, bright lights, patterns and colors, a to-do list, and more, or if you just feel like you are different, let’s talk. All of these things can be benefits, once you know how to use them. Whether or not you are autistic or ADHD, you need to understand how you are wired and how to make that work for you. What makes you different also makes you wonderful. You just might need a little help understanding.

I'm Focused, Not Stupid.

The way people think, how they process their surroundings, the things that happen, the information they take in, is a hugely diverse range. And though society is finally starting to talk about neurodiversity, not very many people really understand how to recognize the differences in productive ways.

For example, when I focus on something, everything else goes away. I hear the other noises around me, like the dogs asking to go outside, my partner trying to get my attention, the doorbell, but they are otherworldly sounds that seem to have nothing to do with me. I have to remind myself to allow those outer cues to have a little bit of my thought space, or I’ll generally have messes to clean up later. Cooking is one of my highest focus activities. I can’t talk to anyone or pay attention to anything else while I cook, or things will burn, boil over, etc. If I try to talk to people and cook, I have about a minute or two before I start walking in circles in the kitchen, unable to continue the conversation or cook. I’ve overloaded. Gratefully, those who know me best find me cute more than annoying, and they help me get back on track by getting my attention and guiding me to my next task.

So, because I know that I focus intensely, I also know that I can’t walk and text. I may not be able to listen to the radio or one of my audiobooks while I drive. I can sometimes, but only if I’m in top mental form. If I’m tired or distracted in other ways, I’ll listen too intently and forget I’m driving. I don’t drive poorly when I’m like this, but I miss turns, and my response times are slower. I have to be aware of what I am and am not able to do so that I can be successful using my focusing skills for the benefit of myself and others.

For people that don’t have such hyper-focus, my behavior can seem to indicate ineptness, even stupidity. They can become frustrated with me, which unfortunately causes me other issues. So, I’ve had to learn how to ask for help or patience without acting like I’m a problem and apologizing for just being me. This is hard. It takes finding my inner confidence and my compassion for others. Just like I can get overwhelmed when I don’t understand something, others can get frustrated and impatient. When I find ways to connect to another person’s needs, I can often find ways to explain my abilities in a more productive and inclusive fashion.

Next time you feel frustrated by the way someone is doing or saying something, try figuring out good reasons for what they are doing. Ask them if their approach is meeting certain needs of theirs and if there is a way you can help. Brilliant and beautiful things have been created throughout history by those who seem different, outside the norm. By embracing the differences, we can find ways to bolster one another, diminish conflict, and learn important skills that benefit ourselves and others. Differences are a real, necessary part of life. Embracing them is key to success.

Parenting From the Spectrum

I have three amazing, now adult, children. I had no idea about the more expansive truths of Autism and ADHD, let alone the fact that my kids and I are loaded with both. I was so miseducated on what to look for and how to help. The struggles we had were many, and most were totally unnecessary if we’d had the proper help and training. But even now that I understand my own neurodiversity so much better, I still find being a parent an intense combination of wonderful and awful.

With the different executive function challenges I have, the extra anxiety of trying to understand relationships, and the way I can keep trying the same tactic without understanding why it’s failing, my kids have always needed to understand that I’m just me. They shouldn’t take me personally. I’m doing the best I can, and sometimes that’s not very good. I’m deeply grateful that each one of them has grown to know I love them and will do whatever I know how and can do to support and help them. They also know that I have tendencies that they may need to avoid for their own wellbeing.

I’m extremely anxious about my children’s wellbeing. It does not matter how old they get. I’d be happiest if we all lived together forever, and none of them ever left the house. That would also be horrible, because I don’t do well in groups. I need quiet, space, and no movement of myself or anything else for some amount of time every day. The more people live in the house, the less likely it is that I’ll get that kind of mental and physical silence.

That was extra hard when the children were little. I have sensory issues. I love people and will often feel able to give and receive a hug, but for the most part, they must be very short, and then I want to back up significantly. Even standing or sitting close to someone can be very difficult. Children tend to want attention; verbal, mental, and physical. Three children can want all of that all at once. Oh my, it was so hard to remain pleasant with all the touching, noise, questions, needs, and more. I would often close my eyes, shrink into my body, and tell the children they had to back up, not touch me, leave the room, or whatever else I thought I needed at the time. Those poor kids didn’t understand. They were just trying to feel loved and have their needs met.

Often I felt unable to sit and read stories or play. Helping them with their homework could challenge just about every bit of me. I loved (and still do) my children so much it almost hurt, and I felt so bad at parenting. Before I understood my neurodiversity, I could not understand how I could love these wonderful people so much and yet feel like I needed to be away from them often.

If any of this sounds familiar, there is help. You can learn new skills for balancing the needs of parenting with your own needs as a person. You can also learn how to ask for help and from whom. There are many parenting support groups online. Most of them are about raising neurodivergent children, but there are some for parents on the spectrum or with ADHD. Additionally, coaching and counseling are wonderful ways to work through your challenges and learn new skills.

You don’t have to parent alone, and it is totally ok to love your kids and not love parenting. Get help so that you can find more calm and enjoyment being a parent, and in your life just being you.

Stay tuned for my upcoming book on parenting from the spectrum. In the meantime, you may enjoy my current book, My Dramatic and Inappropriate Neuroawesome Life.

Thoughts for Care Providers

From one Neurodivergent human: We are not crazy. Please listen as though we might know what we are talking about. Attention to detail is a good thing.

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In talking with other neurodivergent individuals, especially those of the female sex, I’ve found that my experience with doctors and therapists is far from uncommon, and it makes me so sad. For the most part, I have been told that I need anxiety and depression medication when I have asked for help with digestive problems, joint pain and grinding, back pain, headaches, and more.

Something about the way I express myself evidently seems intense. I have tried everything I know how to do in order to appear thoughtful, calm, and reasonable. Evidently I can’t pull that off well enough for the care providers I have interacted with. The more ailments I have, the more information I come prepared with, and especially the more questions I ask, the more I am labeled with ptsd and referred to a psychiatrist for medication.

Since discovering my neurodiversity, I’ve been able to tell care providers that I’m autistic, ADHD, dyslexic, and dyscalculiac. This has helped care providers be more patient with me and not instantly jump to the conclusion that I’m having a ptsd episode, but it has not led to the kind of care I need. For example, you can’t just tell me to eat a low-fat diet and exercise. You have to tell me what I should and should not eat and what kinds of exercise, for how long, and how many days a week. The lack of specificity sends me off to do research on my own and can lead to hyperfocus on any or all of the things I find, pulling me down a rabbit hole of fear and frustration. That will generally end with me either not eating at all because I can’t figure it out, or me giving up and eating even more of the things I shouldn’t.

When I had a hysterectomy, the doctor said I should be walking around every hour and not lift things over 10 pounds. I didn’t know what that meant. The lack of specificity meant I took months longer to heal. I didn’t know what things in my house weighed, like the laundry, and I didn’t know how much to walk. So I did too much. Evidently neurotypical people would have been able to figure out what my doctor meant. That makes me feel stupid, but I’m not sure it’s true that others would have just known. I think they have heard stories from other people and have been able to surmise an appropriate response to doctors’ recommendations.

Next time someone tells me to walk every hour, I’ll ask for specifics, but I’m pretty sure the response I’ll get will require me to ask even more questions. This is a very fast way to a shutdown episode for me. It is really hard for me to follow up if I think I don’t understand or am not being understood. Instead, I tend to become more and more non-verbal. I may just stare at the provider, causing them to feel they can move on.

If I’m in pain, the shutdown is even more likely. “Rate your pain from 1-10” is a terrible question for me. I don’t know what that means, and when I ask, they say from no pain to the worst pain. I don’t process pain that way. I’m always in pain. I don’t know what no pain feels like. And pain comes in different forms for me. I don’t feel it all in the same way. How can I explain those differences? And now they’ve sent me off trying to chase an answer in my brain which will make me less able to process the rest of the visit. I’ll get lightheaded, sometimes extremely so, and I will not be able to remember what I’m supposed to say. Even if I write it down, if I get overwhelmed, my dyslexia will get much worse, and I may not be able to read what I wrote.

All of this is so exhausting and disheartening that I don’t want to seek care to begin with. Just the thought of having to tell someone that they have to watch my pain level for me because pain causes shutdown responses in me, is enough to make me want to stay in bed and not go. It is my firmly held belief that care providers need much more training in how to understand and care for neurodivergent individuals of all ages. Many of us are loaded with trauma due to a general lack of understanding from family and peers. So, to enter a care situation and find the same lack can cause a whole new set of traumas that will lead to withdrawal from self-care.

Many of us will do so much better if we are allowed to have an advocate come with us to appointments. Someone who knows our signals for distress and can be in charge of communicating things we may forget, or are too overwhelmed to express ourselves, can be invaluable. Covid restrictions and other rules can make it harder for neurodivergent people to get the care they need. Our chosen advocates may be barred from the exam room.

Care providers, please start talking to your neurodivergent patients. Find out what their distress signals look like. Ask them if they would like more detail to be given with all of their care. Ask if they have someone they trust that could be a healthcare advocate. Be aware that many adults are not diagnosed, and look for neurodiversity before deciding on anxiety, depression , or personality disorders. If someone asks for an autism test referral, please give it to them. And above all, please treat us with respect as intelligent, capable, people who may need some accommodation in stressful situations.