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), autism spectrum disorder (ASD), 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 ADHD/ASD. It doesn't require as much exertion to do things you enjoy.

Question 3: Explain your diagnosis, for instance ADHD vs. ADD.

Nicole - Well they used to be two different diagnosis - ADD or ADHD. Now they are classified under one title ADHD, with attentive vs. hyperactive 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 ADHD as a child, but now it is simply referred to as ADD.

Question 4: So you had a late life realization/diagnosis of ASD. How did you come to that?

Nicole - It started with my 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 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 truly 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 discusssed 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/meltdowns in and out of the home. Before the ASD diagnosis in adulthood, I couldn't comprehend the reason behind them as they didn't align with the typical behavior explained to me that were associated with ADHD. But nevertheless, this didn't stop me from doing things and going places with you. I set the expectations for whatever we were doing, ahead of time. If you dysregulated or had a meltdown, 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.

Question 10: Can you tell me a time when the ADHD and/or the ASD most affected you? In a positive or negative way.

Nicole - The most negatively impactful effect I had was in a past job. They were not good at saying here is what we need you to do and the expectations that were aligned to it. So I would complete the project without guidance on the expectations specific to it and someone would be upset it didn't meet their expectations. Or maybe one person might tell me their expectations but I didn't see it from their perspective, That might create problems. I had to learn to ask for more details under certain circumstances.

Me - It makes it hard when you function better with real clear directions and don't necessarily always get them. Someone may give you a directive and expects that you can draw the exact expectations they have aligned to it, without communicating them. So then the broad expectations from which you draw your own perception, can create issues.

Nicole - That seems logical to them, but sometimes you get distracted by your own interests. Then the expectation of you by others, say putting your dishes in the dishwasher when you're the only one eating dinner at home and mom isn't gong to be there to do them for you, is not met and then someone gets upset.

Me - A good example of how to address these kinds of concerns is students who may need a planner to complete tasks, When they use it they have something to go back to and make sure they met the expectations.

Nicole - I used to have a whiteboard that I used but eventually it became part of the background and I forgot about it. So I had to get creative to find ways to bring those types of tools to the forefront of my environment.

Me - With your sibling we created a system in which we used different colored post-it notes on planner pages to attempt to prevent things from becoming part of the background.

Question 11: Now as a trained Executive Function Skills Coach, I look back on your struggles especially in your first adult interaction on your own, college, and reflect. Why do you think you struggled with attending class, dropping class, returning books, and generally staying in school?

Nicole - I think some of it was my age and being on my own without any guidance. When I was living at home you knew my struggles and were there to help me be more successful. But when I went out on my own and no longer had you there to support me, not that it was a bad thing because I would have struggled even more, then I had to remember myself. Also, sometimes I had the mindset that I don't HAVE to do ANYTHING. So I didn't do what I didn't want to do. It was also a big learning curve for me. I was in a new location moving into a college environment which was far less structured, with people I didn't know, away from my immediate family and all the friends I had. I also just wasn't sure of what I wanted to do, so there was no real interest. It was a perfect setup for someone like me to avoid doing the things I didn't really like. So I didn't do it, gave up on things I didn't enjoy. Which...wasn't great. But I had to come to a point where I was ready to do it on my own. That didn't come until later.

Question 12: So now let's talk about the struggles with medication? Good, bad?

Nicole - That is a whole thing when it comes to me. I mean don't have am extensive, formal evaluation to understand the ADHD vs ASD piece. I had so many troubles with actual ADHD medication. They didn't work, right. They made me feel disconnected. With your help I tried so many different ones.

Me - I agree. I was always wondering why they didn't work well for you.

Nicole - I don't necessarily think the medication actually helped ME when I was young, so much as it just made me not do things that annoyed neurotypical people.

Me - I would agree with that as well. I often just felt bad. But I will say that back then I didn't have the information that is accessible now. I mean now we can research so much on the internet. Back when you were little (25+ years ago) I just trusted and relied on the doctors, the professionals. After your sibling's ASD diagnosis and learning all I have over more that 22 years, I found that ADHD medications don't always help children with ASD. I so more was known about Aspergers back then. But if I remember correctly, it wasn't even named until the 80's. This is where, for at least my children, I see that the inattentiveness is really preferred interest, need for knowledge and the proprioceptive needs.

Nicole - Back when I was young there were very few options for medication. It just made be feel disconnected.

Me - I remember going back to the doctor to talk about that and all we got was lower doses or adjustments to a sustained release option. It never really solved the problem in my mind. But again, we have come along way. And at that time all we had to look at was ADHD, not ASD.

Nicole - I remember when I had been struggling as an adult and came back to live with you, the doctor wanted to put me on medication again and it was the one I knew I didn’t tolerate well. I tried to explain that but they insisted on starting with it and then working through a process. So I took it and I remember I was volunteering at the archeology location on post and my heart was racing and my hands were shaking. I just couldn't stand it.

Me - This is where I think that the misdiagnosis of ADHD came into focus. By that time I knew so much about ASD and had you been diagnosed with it then I could have helped push harder for a different approach.

Nicole - In Kansas, I remember seeing the professional who worked with adults with high functioning autism, Aspergers, and telling her about my experiences with medication. She told me that the most helpful medication that I had taken was originally intended as an anti-anxiety medication but has been noted to work for those with ADHD and also ASD. I think about it now and I wonder if the kids with ADHD that this medication helped, were some of the kids that may have been mis-diagnosed or under diagnosed in the first place, like me.

Me - In my work I see many students on the Autism Spectrum who struggle with anxiety, OCD, etc. For me it isn't a far reach to consider that an anxiety reducing medication might help reduce symptoms that can be realtive to ADHD, but may be more related to the symptoms of ASD.

Nicole - I find now that I can use a low dose of that same medication for maintenance. Because I have come to know myself and my needs better to help me reduce the symptoms of the diagnoses.

Question 13: What tools do you use now to help you with your life and job? What coping mechanism do you use?

Nicole - I use a good deal of tech tools. Calendar reminders, to do lists, etc. I know to ask for expectations and track that I am meeting them. I keep lists of things I need to purchase and track my expenses to meet the requirements of the job. For coping mechanisms, my biggest one is my cat. For me animals really are a great coping mechanism at the end of a hard day or when things are not exactly how I might expect or want them to be.

Question 14: What do you do to cope when family, friends, co-workers or strangers seems annoyed by your neurodiversity?

Nicole - I mean for the most part, okay I guarantee that there are still times I don't even notice that someone is annoyed with something I said or did. Sometimes it's just so subtle, like rolling their eyes or making a face. But when I do notice, I don't try to make excuses for myself like, oh it's just my ADHD. I usually try to say something like, hey is there something I can do differently, or how do you want me to do this instead. Trying to figure out what they are looking for, rather than making it obvious that I know they are unhappy. It's hard to address that because I don't want someone to not have faith in my work or me because I have a disability. But I might have to mention it if I find I may need an accommodation for something. Sometimes with friends I will mention the disability. Because usually you aren't worried about getting in trouble with true, good friends. My biggest struggle is that I don't initiate interaction. So I may not keep in touch and then they get upset. So I might have to explain that I over think things like that sometimes. I think...I call too much, or haven't called enough so they may be mad at me or something. Othertimes I just don't reach out because I am overwhelmed, but at the same time I would take their call if they reached out. I do enjoy friends. Sometimes social things need explaining.

Question 15: What have you found over the years that you need from others or from yourself?

Nicole - What I mostly need from other is patience and understanding. I can guarantee that I will do something that I am not even aware of which may seem a bit weird. So patience and understanding is key. As far as things I need from myself, I would say downtime is important. Just getting a break from work is necessary. I would say I'd like to try to locate near the beach for a few days and work from there, so I can enjoy my off time on the beach.... but, well, I know myself well enough to understand that probably wouldn't go well. What I am trying to say is I need brain breaks. I also need clarity and detail from co-workers and I need structure.

Me - Have you found, over the years, that you need to be kind to yourself?

Nicole - Do I intellectually know that I need to, yes. Do I actually do it, not very well.

Me - Why not?

Nicole - I just have problems with that. As I got older and more self aware, I tend to be more self critical. Where as when I was younger I was less aware and therefore not as hard on myself. I worry more about what I might have done wrong and that can turn into, I do everything wrong. I just find being kind to myself is more difficult to put into practice for me. But I do find it helpful to engage with others who are different thinkers like me. Because we try to see the beauty in ourselves and our uniqueness.

Me - So having friends that understand you and accept you is another way you meet your own needs.

Nicole - It is a safe place where I can exist as I am and where I am at in my life. It's important to choose the right tribe for you. Which can improve your life and longevity.

Question 16: Do you feel that at this point in your life you thrive in a job that you enjoy and will make you happy?

Nicole - While I want a job that pays the bills and keeps my head above water, it's just as important to enjoy what I do. Otherwise I will not be as productive or happy in work or life. So making your way into a job that you enjoy might have to come with time, but the benefit it wonderful. I recommend parents encourage their children with neurodiversity to find jobs they are interested in and enjoy. Life is a balance and encouraging your kids to have balance is important.

Question 17: So can you talk a little bit about how I have, or maybe have not, supported you over the years.

Nicole - I could never say that you didn't actively support me, it's just that when I was young we didn't really have a true picture of what was going on for me. So what you tried may not have been aligned with my true need and diagnosis. I know that I am a person that operates or is more motivated from my feelings of disappointment in myself and sometimes you, my dad and family members tried to utilize it as a way to move me forward. Which worked. But in hindsight I find that it isn't the best motivator for me long term.

Me - I agree. I think sometimes for lack of having anything else that worked, we fell back on whatever might work at the time. Maybe without understanding how that might impact things in the future.

Nicole - Overall, I think you did a very good job supporting me. We didn't always have the right answer for how to do it, but it didn't mean you weren't trying different things. I am sure sometimes you were thinking, What the heck is this child doing? What is she thinking? I don't understand what's going on and I don't know how to fix it.

Me - That's true, I did feel that way sometimes. I felt at a loss and like I wasn't able to help my only daughter, at the time. I felt frustrated because I didn't know what to do. I tried to take my lead from the professionals. I just wanted you to have a fulfilling life and to reduce the struggles I was seeing you face.

Nicole - What makes the difference is the trying. Because in the moment as a teen I just wanted you to leave me alone and stop making me do things. But as an adult I can see that you had my best interest in mind. You were just trying to teach and guide me. Like most parents who you work with, and coach, are trying to do for their kids. I feel like parents that are going through these things with their kids, are just trying to do their best. I hope their kids will see that when they are gown. You were good, sometimes too good, at trying to keep on top of things for and with me. You took such good care of me, that when I was on my own I didn't realized what I didn't know. All the problems that could come from me not committing to and learning what I needed, or being willing to. Such as, using credit cards, getting into debt, over use of the internet, protecting personal information, etc.

Me - I have in the past said to you that I am sorry not knowing more back then and therefore doing more. As a mom I always want to do the very best for my children. I have learned to give myself grace and know that I did the best I could with what I had and knew back then. I just wish we had all the information we have today. Because I could have done more.

Nicole - Well I feel you don't need to apologize. You did your very best. There were other challenges you had to face as a single mom too. I believe that with the struggles I had and have, they would have been 10 fold if someone else had raised me. So thank you. Love ya.

Me - Thank you. I love you.

Question 18: What could you tell families about how important it is to learn about their children and their unique needs and engage with them around those things?

Nicole - I think engaging with your children or having an understanding, even if at a surface level, about their interests and needs is validating to them. You always took the time to listen to my interests, helped decorate my room with things I liked and shared that with me. It meant a lot to me, like I wasn't weird for liking the things that I liked. I also think it is important to truly listen to your kids, even when it is around the preferred interest and you have heard about it several times before.

Me - So active Listening?

Nicole - Yes. Because they know when you aren't really paying attention to what they are saying. And we want to be heard and seen around the things that many others might find odd or different or strange. It helps us feel like you care and want to know about us.

Me - I can understand that. I also feel that's important. Due to the numerous interests of all my kids, I may not share the same interests they have. But it's important to be able to converse with them about their interests and show them they matter. If I didn't learn about them, then I may not have ways to connect meaningfully. Meaningful connection for me as a human being is important and with my children are most important.

Nicole - Parents should strive to see and know their kids.

Question 19: For my final question, what advice would you offer other adults who, like you, are neurodiverse or have disabilities or differences?

Nicole - Know your own weaknesses. Know what areas you lack skills in so you can work on those things. Especially the things that are very important, like credit card, budgeting, social interaction, work, etc. Know what tools you may need and don't already have. Something as simple as having a notebook at your disposal to write down things you need to remember. If you don't yet know what you need, talk to your family, friends or therapist to help you figure out options. Then try some of them out to find the one that works for you. Learn to advocate for yourself and your needs with others. Especially if you know you experience anxiety about doing that. Find someone to practice with until you feel more comfortable about what to say and how to say it. And finally, be accepting of yourself. Know that even though you need accommodations, or have challenges or differences, accept yourself and know that you have worth.

Me - Even though you may have challenges or differences, accepting who you are and loving yourself for that because you ARE unique, it so important.

Nicole - It can be hard being neurodiverse or different. But acknowledging that you got through tough times and struggles is also important. Exploring options for the support, guidance and advise you might need is a consideration. Just googling what you're looking for can be a helpful place to start gathering options you can try. I would also say that keeping healthy connections with family and friends can be another key piece of your overall happiness and well being. We all need love, support and connection.