PART 1 - Navigating Neurodiversity: My Daughter's Perspective on Living with Disabilities

I am the proud mother of a fantastic trio! My two youngest, not that they are that young anymore, are college grad and under-grad students, while my eldest is out there adulting like a pro in sunny California, pursuing her creative dreams. Each of my kids is unique, and brilliant with their own special talents. Watching them thrive, spread their wings, and live their best lives is like winning the mom jackpot!

So, let me tell you about my firstborn, Nicole. She's incredible, hitting her mid-thirties and rocking the Social Media Creation and Management scene. She's basically living the dream because, let's face it, dreaming up creative and engaging content all day doesn't really feel like work, does it? I always knew Nicole had a knack for creativity. I mean, I was secretly hoping she'd still want to dig up dinosaur bones as an archeologist, but hey, digging up new followers on Instagram is pretty close.

I had a little chat with Nicole the other day, you know, the child slaying IG on the daily. She is also an adult with some unique attributes - attention deficit disorder (ADD), neurodiversity. I wanted to pick her brain about the struggles of adulting as a neurodiverse woman. I threw some questions her way, and now I'm here to spill the beans and share her insights with you!

PART 1 has lots of questions and content, so grab your favorite drink and snacks while you hop into my daughters perspective on attention deficit disorder (ADD), autism spectrum disorder (ASD), neurodiversity, executive function, social interactions, family dynamics, support systems, tools, and career. Huge props to all of you for your unwavering curiosity, openness, and wisdom. A special shoutout to the star of the show - my amazing daughter, Nicole! I am blessed to be your mom! Love ya!

Feel as free as a lark to fly in and out whenever you please. This post isn't going anywhere, so take your time – we all have our own little adventures to embark on!

Question 1: In what way does having a job that you find fulfilling benefit you in light of your diagnoses?

Nicole - There are pros and cons of doing what I enjoy consistently because other jobs that I don’t like require more mental energy, which leaves less energy to complete more tasks that would require the same level of energy for a sustained amount of time. But if you like something a lot, you might also find yourself overly fixated and have to be careful not to go down the rabbit hole.

Question 2: In school, did you find that the activities you liked required less mental effort?

Nicole - Yes, it was way easier to write an essay that was five pages long that it was to do 2 pages of math homework.

Me - I remember in school you also enjoyed History and Science.

Nicole - Yes, if you find it enjoyable, it's likely the same for many individuals, but perhaps even more so for those of us with neurodiversity. It doesn't require as much exertion to do things you enjoy.

Question 3: Explain your diagnosis, for instance AD/HD vs. ADD.

Nicole - Well they used to be two different diagnosis - Attention Deficit Disorder or Attention Deficit Hyperactivity Disorder. Now they are classified under one title AD/HD, with attentive vs. hyperactive type or a combined type. I heard an interesting take on the disorder from someone else with the diagnosis. They basically said that the description of the disorder is just all the things that annoy those who don't have the disorder. It's just a list of those peoples grievances. It's kind of true. Here are all the things I don't like about you that you do. Regardless of how you perceive it, I was diagnosed with AD/HD as a child.

Question 4: So, you had a late life awareness around ASD. How did you come to that?

Nicole - It started with a sibling who had been diagnosed with what was then referred to as Aspergers. I remember thinking, oh yeah I used to do that. I get that.

Me - I remember reading the book The Complete Guide to Aspergers Syndrome, by Tony Attwood and when I reached the section that was specific to girls I thought to myself, this is Nicole, almost word for word. It was as if Tony Attwood had been peeking into your entire life. In hindsight I now think that the "hyper" they saw in you was not that you just couldn't sit still, but rather that you needed to do the things to stimulate your mind, that interested you.

Nicole - I think it was either that I was bored and needed to stimulate my mind with something, or I wanted to talk about what the intereseting things I was learning and discussing in school, at home, and in the community.

Question 5: In elementary school you had an evaluation that produced an IQ of 140 or 141. Which to me was astounding. It was nearly genius level. I think they wanted you to go to a Gifted and Talented education program school.

Nicole - Yep, but I didn't want to go.

Me - I remember your 2nd grade teacher telling me that during circle time you kept getting up and going to the back of the class to engage with things. She figured you weren't losing much from story time. One day when she finished reading the story she asked the class to explain the moral. Out of the blue you began to retell the story in great detail and shared the moral of the story. It was at that moment she realized that although you weren't in the circle, you were taking in everything that was happening. The amount of information you always seemed to have, was astonishing to me, it still is. The knowledge that amber is petrified sap, that algae in the lake was "plankton", the knowledge of all the Greek and Rome gods. Your mind is like a sponge. Both you and your sibling share the great ability to know and retain information that was of high interest to you. At the same time, you couldn't remember other things. The level of detailed memory in some areas is just astounding.

Nicole - I remember all of those things. I know sometimes my level of detail and need for specificity drove some family members crazy. One of my relatives, who is ADHD and also thinks she might be ASD, was talking with me about the need to explain everything in detail. Not only is it wrapped around our interests and the level at which we have acquired information about them. But it also has to do with us realizing that we have thoughts in our head that we share with others, giving no frame of reference of what got us to the information we just shared. People just seem confused and don't understand what we are talking about. So in order to prevent that, we tend to over explain. And because of our high level of knowledge and information, we also tend to start out on one topic and end up somewhere completely different.

Me - I remember both you and your sibling would play a thought in your head and verbalize it to me as a random statement that was three levels deep in your own thought process. I had no frame of reference so it required me to ask question after question to understand what you were referring to. I always learned something new from those conversations.

Question 6: When you were young we only had the ADHD (ADD) diagnosis. What did it feel like, what was your emotional experience with ADHD (ADD) as a child?

Nicole - You know, even though I took medication and had supports, I don't think I cognitively realized I was different than other kids. I usually had a small groups of friends who somehow just accepted me. I knew a lot of people, but I really had 4-5 close friends that I did most things with. They seemed to understand and be okay with the weird things I'd come up with. I mean, when I was young and even into my early teens I didn't have the understanding that I think differently than others. Sometimes I still have to remind myself that I think different. I don't get why people aren't on the same page. My way of doing things is different and I need to remind myself that I am different and accommodate myself. But when I was a kid I thought everybody was like me so I didn't understand why someone didn't understand me.

Me - With such high intellegience I think it can happen because you may be less attuned to how other people perceive things in the moment. Your mind is thinking about interests and sharing what you know. There is less awareness of how others might perceive what you are saying, doing or feeling.

Nicole - Even how I do things. Because I might have a different way of doing something than others. Sometimes a boss or teacher might say, that's not how you are suppose to do it. But you're thinking... does it matter, the answer is right anyway. They want you to do it their way, that's hard.

Question 7: It is important to understand the significance of remembering as much as possible of what you are taught or are learning. For instance, do you believe it's crucial, and expected on the job, to have immediate recall of something you learned in college or that was discuss a while back? Does the work environment frown on persons needing time to recall something?

Nicole - Yes, and also that is what happens a lot. People just can't do it at the table. They say, I'll look into that and get back to you. I was thinking the other day that ADHD or ASD can be a super power as well. Your brain just builds these crazy pathways to problem solve. But it can be frustrating for others who can't keep up with that thought process. So you have to balance it within the construct of other people.

Question 8: You said when you were young you didn't really realize, compared to peers, that you were different. How do you think your disabilities impacted relationships with family.

Nicole - It's funny, because you and I get along really well. And I don't think I have a lot of issues or struggles with my family overall. But I know that some of the older generation had a hard time with some aspects. Even my dad had a hard time, and would say things like, "that's why we couldn't take you anywhere." When others remember incidents that occurred due to some of the challenges with the disabilities, I can't say I have the same memory. I don't remember the challenging things on vacation such as a meltdown. Looking back or hearing people talk about things like that, I realize it may have been what drove peoples overall perceptions of interactions with me. It seemed like they mostly remembered the bad things that happened. It's interesting to me to see that those are the things people latched onto in regards to experiences we had together. It still happens as an adult. I can be hard on myself about some of the things I do, so it doesn’t help when other remind me of them.

Me - Yes, sometimes certain experiences were given strong emphasis for a longer period of time than was reasonable. My approach was to try and give you time to calm down. I also knew that it was just a moment in time and a very small part of the sweet, creative and incredible person you are.

Question 9: Upon reflection, I didn't really consider sensory issues for you when you were younger. What was/are your thoughts on that?

Nicole - Well it isn't as if loud noises freak me out or anything. But in the sense the environment gets muddy when there's lots going on or lots of back ground noise, yeah. A large group of people talking, really messes with my head. It's hard for me to concentrate or think through things when there is a certain sort of, like, din noises around me.

Me - I also know there was a need for routine and an adherence to following expectations that had already been set. Sort of the rigidity of routine.

Nicole - Yes, so if there were steps A, B, C, D and it was time for C but you jumped to step D, I was like, why are you jumping to D?

Me- And that could cause you to dysregulate?

Nicole - Yes!

Me - I recall you experienced disregulation in and out of the home. But I never let it stop us from doing things and going places. I set the expectations for whatever we were doing, ahead of time. If you dysregulated, for whatever reason....the process happened out of order or you wanted something you were not going to get..., we would just leave.

Nicole - Usually that was enough. I remember a couple times that you left the shopping cart full of items and we left because I was unable to get through shopping without getting upset.

Me - I remember I had explain to you we first had to do one thing before we could do another. If you couldn't do A, we wouldn't be able to do B.

Nicole - Some of it may have been just part of being a kid, but it didn't help that I had extra stuff going on that complicated it.

Me - Over the years I had to find creative ways to try and help you self-regulate. For instance one time you were not behaving and you had a time out in your room to try and calm down. You threw a music box and broke it. I response to you was to tell you that whatever you broke would not be replace. That was I think the last time you broke anything precious to you.

Nicole - When I think about that even to this day, it still makes me feel sad that I destroyed that music box. I'm a grown adult and still think that I broke it and I'm never getting it back.

Me - It was a way to try and get you to think about the behaviors differently. I used different ways of dealing with you than other people. It was important to me to try and make things easier for you, while also helping you.

Nicole - My dad is a person who can approach things on a whim. Sometimes that was fun, but when there was an expectation that we would be doing one thing and then that was suddenly changed, it was difficult for me to understand and adjust to. He didn't understand what was going on and therefore couldn't fix it. It is still that way with him sometimes, but as an adult I have found ways to work around it. It can be even more challenging when you are interacting with others who have their own challenges.

Okay so we have wrapped up PART 1. Come back for PART 2 when you have time. Thanks for reading.