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Let's Talk About Neurodiversity and Death - What Can Be Helpful?

Last weekend I was at a great sexuality conference in Colorado. I had planned to give you some amazing insights from the conference. That will have to wait because July 30th, my mother died. I don't think I have seen much about neurodiversity and death.

I had taken my ADHD medication and was having a great day. Around 11am, my brother called to tell me the news. I thanked him, then fell apart. This wasn't a normal grief crying session for me; it was more of a total melt down. I sobbed uncontrollably, felt a variety of emotions very intensely, I struggled to compose myself. Good and bad experiences with her flooded my thoughts.

My mother was 93, sick most of my life, and had been deteriorating more rapidly the last few years. When I saw her in November 2023, we spent three full days together reminiscing, sorting pictures, and just enjoying each other's company. We discussed that this would be the last time we saw each other.

Ours was a bitter/sweet relationship. I made my peace with her over a decade ago, and accepted and loved her as she was. We don't all have great parents. It's ok to call out their flaws and still love them.

I have written about being on ADHD medication before, what I didn't talk about was how my medication has been working differently the last few months.


Initially, when I went on ADHD medication around 2009, it opened up all of my executive functions, and for the first time I was using all of my brain. After a year and a half, I was overdosed and had to get off the medication. The lessons I learned while on the meds stuck, and my life continued to improve as I learned and created new ways to manage my brain. In November 2021, I suffered a whiplash and concussion, which impaired different executive functions. Concussions can bring on ADHD symptoms. This year, I went back on ADHD meds and at first they were helping. For the past few months, I noticed they were working differently. After consuming them, I would feel a lot of anxiety the first few hours. Throughout the day the anxiety would lessen. I struggled to fall asleep. Some of my emotions were way more intense. This created more chaos because when I couldn't sleep, it flared up the chronic pain in my neck, and this made it difficult to function throughout the day. If I were in Ontario, I would have tried another ADHD medication. Since I am in the States, I can't do that now, so eight days ago I stopped taking the pills.

Without medication, I am generally happy, often bubbly, get work done in my own way, on my own time. I am less consistent with certain things, sometimes I am less motivated to achieve, and I definitely struggle with overeating or snacking throughout the day. The later comes from the concussion. I was told the part of the brain that tells me I am full has not been working well since I was hit in the head. The meds suppressed my appetite enough for me to eat more normally.

I am now grieving in a way that is more aligned with me. I am sleeping a lot, enjoying parts of the day, experiencing feelings of sadness, sometimes anger. There are things I really wanted to know that my mother never explained. Maybe she didn't understand it herself. At least we could talk about these things openly and somehow, that made me feel better.


Death is a big change and change is difficult for many people who are neurodivergent. It means readjusting life so it makes sense again. That alone is often a challenge to us.

In my case, my mother and I used to talk on the phone almost every day. Since our last visit, we had gradually been talking less and less. She had less energy and was happy just knowing when I changed location and what it was like. Monday when I arrived in New Mexico, I missed our call. I had to think of something else to do. I ended up talking to her as though she was in the room now. I have no clue where spirits go after death. In case she could hear me, I went on. I am grateful I had time to adjust gradually to not having her in my life. Not everyone gets that opportunity.


When someone dies suddenly, it is totally possible that it will trigger so many executive function malfunctions that the person will be lost for a long time. Being patient and empathetic is key. So many well meaning people say the wrong things to a loved one when someone dies. There is a big difference between sympathy and empathy. One is saying or doing something so you feel better; the other is giving your presence and saying nothing or asking if there is anything you can do that would be helpful. Sometimes there is nothing you can do. Many people do not want to accept that. They want to feel better so they bring food, give money, say things like... At least they lived a long life. At least they aren't suffering anymore. Look at the bright side... Can you see that those may not be helpful to someone who wasn't ready to lose their loved one.

Check out this great video by Brené Brown on this topic https://www.youtube.com/watch?v=KZBTYViDPlQ&t=41s

If you are the one with neurodiversity going through grief, make sure you sleep well. That is the most important thing. Lack of sleep makes it much harder to manage emotions and to get through the day. Also make sure you are eating enough and lots of proteins and greens. Allow yourself to feel all of your emotions, if possible with someone who will not judge you. If you need to grab a pillow and punch, scream, kick, DO IT. Maybe you need to go for a drive and scream away anything that needs to come out. Do not keep it inside. It's human to fall apart sometimes.


If you have kids of various ages experiencing the loss of a loved one, the above tips are crucial. Allow them to talk about their feelings. Let them know it's ok for them to express however they need to. They may not have words to explain their feelings. Make sure they are not pumped with sugars to make them feel better. Sugar does not make the neurodiverse brain feel better. Quite the opposite. It can cause depression.

Take turns telling something you liked about the person. Maybe look at pictures that you can reminisce over. Maybe you want to do something the person loved to do in their honour. Could be dancing, playing a game, reading, going out to one of their favourite places.

Remember, there is no specific way to grieve. Just as each neurotypical brain is unique, grieving is the same.


There is research on the Five Stages of Grief. There is no particular order and you can experience each stage in one day. They are DENIAL, ANGER, BARGAINING, DEPRESSION, AND ACCEPTANCE. You may find yourself with more than five stages. That is perfectly ok. You may grieve for a couple of months, feel great for a long while, then experience grief again. It is important to think of this for children. Allow them to go through the stages as needed. Give them words for their experiences and feelings. Be patient. Your presence is more important than anything else. You can offer a hug, they may or may not want it. Make sure not to judge, name call, or stereotype them. Unfortunately, not that long ago, I heard a teacher tell a boy he was a baby because he was crying. Not helpful at all. Expressing ALL emotions is a human need. Gender doesn't matter.


I prefer to give myself a time frame to grieve. With my ADHD/ASD brain, if I don't give myself time frames, things can go on too long. I gave myself a month to grieve as I need to. Then I will limit it to an hour or two per day for a couple of weeks. Depending how that goes, I will readjust. I will aim to dance and celebrate my mother when I feel like grieving, knowing it is more helpful to raise my spirits and get me out of feeling sad.

Remember that to neurodiverse brains, FUN IS POWER! Whatever you find fun, especially if it is something active like a sport, dancing, working out, goofing around, it will boost dopamine and help you feel better.


I would appreciate knowing if this was helpful.

Diane

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