It is well over a year since I wrote my last blog post. I checked in on the home page the other day and realised how long it was since I even looked at the Blog. Last year was not an easy year. Along with adjusting to elderly parents with serious health issues, lockdown meant that I was spending way too much time on social media, and in the focus on that, I found a video which rang huge bells for me. It was to do with what it is like to live with an ADHD mind. I felt as if the person on the video had been studying my everyday life and functioning. It awoke a curiosity and I ended up beginning to research what ADHD actually means, as opposed to what I thought it meant, which was basically young boys running around and being disruptive. I ended up on a waiting list for diagnosis and a thorough consultation where I was diagnosed with combined ADHD where both Inattention and Hyperactivity are both present. I was surprised by the questions that were asked and had no idea that my executive dysfunction and that many of my bad decision making over time was due to the wiring in my brain.
When people talk about late diagnosis, they talk about being 30, or 40. I was 59 with my diagnosis an d what began with relief turned to grief and regret about not having been understood or diagnosed in early life. I also felt so sorry for younger me and all the problems I endured because I was not diagnosed and therefore unaware of the condition. The very people that cared for me, did not understand or were able to cope with me which resulted in trauma. I ended up revisiting therapy with a new lense.
Eight months down the line, I am feeling at peace with the diagnosis and really proud of myself and even happy with myself than I have ever been. Grateful for the positives of my neurodiversity, but also increasingly aware of the cycles of hyperactivity and then burn out and the knowledge that although medication may make things easier to cope with, it will not go away and I will never be neurotypical. But do I want to be? In this Blog entry, I don’t intend to go into the ins and outs of Adhd and what it means. But I would like to perhaps visit what it means to be neurodiverse on this path and my own perceptions and observations regarding neurodiversity and what it means as lucumi Iyalorisha.
MY OWN JOURNEY
In Hindsight, I realised how much my Ita and regular readings have helped in my day to day functioning. I have sensible tools with which I can negotiate the world and although society often does not cater to how I am, I have been able to overcome with great effort, some of the difficult issues that go along with ADHD. However, this does not mean that I don’t have difficulties. Day to day living can prove difficult and now that I do have a diagnosis I can try various different techniques in order to make my life easier. I was offered the possibility of medication and I am still curious. Would it take away the emotional labour of decision making on a daily basis? I am still pondering on this one. On the other hand I am really grateful for my interest in this path and my hyperfocus on it. Interest and excitement about things, comes and goes with me, I made a beautiful embroidery in 2009 and never again did I embroider anything else so grand! I painted a portrait during lockdown and got really excited about it and then lost interest soon after. I get really excited about things, do them for a while, but then lose interest. I have multiple diplomas, skills and directions that I have taken in my life but only one or two that have stood the test of time. I do truly believe that it is my Adhd which ensures that I will study as much as I can and invest a lot of myself in becoming a knowledgable Olorisha. My interest in this path never wanes and I continue to research, study and learn. In particular my study of the song tradition has lasted 35 years and continues to be a source of Joy and fascination.
My Adhd also helps me be empathetic with others that I guide that may be neurodiverse. I always ask people to disclose if they have anything that I should know about so that I can adapt the way I guide that person. Understanding myself is helping me understand others and I am truly grateful for that.
Difficulties within relationships.
People with Autism and Adhd can often suffer from Rejection Sensitive Dysphoria, which is one aspect of executive disfunction. This is characterised by extreme emotional sensitivity to being criticised or rejected, whether real or perceived. It can be extremely triggering and painful. Since this tradition is a tradition which is based on interpersonal relationships, understanding that I am susceptible to this condition, has really put things into perspective and helped me understand in hindsight what may have happened and I why suffered so badly with the breakdown of a couple of relationships with godchildren. It has helped me put things into perspective and helped me understand how to manage relationships a lot better. However, I am also aware, that boundaries are extremely valuable and that if people that come to me are not aware or have not received a diagnosis, there must be extreme care for my safety, those I guide and the person in mind.
Issues that I have been made aware of: A case in point.
My observations have led me to believe that people who are coming into this tradition when they have not been brought up in it, who also happen to be neuro-diverse need to be understood. Both people with Adhd and ASD ( Autism Spectrum Disorder) have a different way of learning and experiencing the tradition. It may be very easy to read and take on board theoretically all aspects of this tradition. However, living it as a new experience, may be overwhelming. There needs to be thorough care and explanation without going into secrets of our tradition. Trust is paramount, because sometimes for different reasons, neurodiverse indviduals may not recognise danger or may jump into scenarios too quickly. Taking your time to get to know those that guide you, is so important, and as a godmother, I will stress that it is important to give even more time for a neurodiverse person to get to know and trust you.
I had the experience of becoming an Oyubona to someone who I really liked, who was not diagnosed. And although it is not my role to diagnose, a few godchildren had asked me if the person was on the Autistic spectrum. The whole entire experience was very draining for me, but also very upsetting for both of us. I experienced what I now know to be a melt down post the ceremony of Kariocha of this individual. Now after questioning myself, thinking deeply about what was going on and why it happened, I could only come to two conclusions. Either the person had some serious character flaws, was extremely entitled and was weaponising their tantrums to get what they wanted, OR the person was overwhelmed and the “meltdown”, which was very similar to a child’s tantrum was involuntary. I came to the latter conclusion and suggested as a way of minimising any further damage, that they investigate whether they were on the spectrum or not. Unfortunately for both of us, the person took my suggestion as an insult and “sacked” me in my role as Oyubona less than a year after their ceremony. I took it quite badly. ( As I said, rejection sensitivity dysphoria is also something I experience). What I thought was a great suggestion to help us both navigate our relationship, was seen in a negative way.
This person was an older person, and I would argue that people of our generation and even younger, are still unaware of the complexities of the autism diagnosis. We need to normalise what being on the spectrum is and the complexities and richness of a neurodivergent diagnosis can look like, so that people do not feel shame when it is suggested that maybe they need to look into it. Labelling people who have undiagnosed Adhd or Autism and other brain wirings ( ie, Adhd people can often be labelled as ‘lazy” “incapable” “irresponsible”) can lead to a life time of lack of self esteem, shame and addiction issues in addition to trauma that may be brought on by unawareness of the danger of certain situations. Are the labels that have been applied to those of us who were previously undiagnosed, worse, than the label of the actual diagnosis? Labels of Adhd and Autism are just labels but behind the labels is the real science which helps us to understand the particular wiring of the brain, and knowledge is power.
I write this blog entry to raise awareness. Godparents have the job of negotiating with so many different kinds of people, and it is up to those that guide people to look out for certain things. However, similarly, there needs to be more awareness for all those in society, and these “labels” can be so useful to understand your own brains and how you negotiate with the world. This path can really help bring you tools. I cannot tell you how useful my Ita is in helping me make conscious decisions with which I walk my path, however, part and parcel of this path is interacting with other human beings since it is a community religion and in order to keep everyone safe, further knowledge and acceptance and adaptation for individuals needs to be taken into consideration.
I dedicate this blog in particular to all the neurodiverse people related to me and those I guide in my Ile, who happen to be some of the most incredible people I have ever met. May I continue to help them follow their true destiny which is undoubtedly to reach the greatest heights.
Thank you for posting this. Wow, I just learned something about myself that I didn’t know but explains the mechanisms behind some very painful interactions in relationships that I’ve had where I couldn’t understand what happened. I’m in a support group now with neurodiverse women in recovery. We’ve only been meeting about a year and a half, and it’s been amazingly helpful. In my childhood none of this existed. It’s only been in my late adulthood I’ve learned about my own dyslexia (I thought it was all about not being able to read, and I read all the time!) and ADHD and PTSD. I came to the 12 steps at 31 and now have many years of recovery. I was called a difficult child complicated by the fact that I actually did very well in school. I learned strategies to cope. The older I get the broader the language I’m acquiring in knowing who I am and how I operate in this world. My take on how all this fits into my spiritual practice as an aborisha is it gives me a sane foundation and compassion for myself and others. I enjoyed the post very much and am looking forward to reading more in the future.
I am learning more about myself and my whole life everyday Anne Marie. A diagnosis is such an eye-opener. Having being labelled as I tried to express in the article ( reading back not sure it makes sense lol) as “lazy” ‘irresponsible” “incapable” “stupid” and other things, and having to live with a lot of shame, and trauma throughout my life, I am so relieved to understand that I am none of these things and that when I am interested in something, I work harder than anyone, that I am capable, and intelligent and world wise and my experience is helping others. My self-esteem has had a lot of repairing to do, but I am getting there and I am so proud of myself for surviving! And I am proud of you too!
I was searching for information on making elekes and saw your blog on neurodiversity in the corner of the page. I was formally diagnosed with ASD last year at 29 years old, and a month after my second Ocha birthday. For many years I thought I may have been Autistic but as you may know the imagery around the face of Autism is very narrow, for a long time I could not find female representations of Autistic people, nevermind Black female representation. I have accomplished many things that stereotypically, Autistic people are thought unable to do.
Egun and Orisha led me to the right resources and testing. Finding this out about myself has led to relief but also anger and grief. I grew up around Ocha as a long-term guest in a family member’s home, the concept to is very logical and understandable to me. Ocha gives me clear guidance on my life. I use divination and ebbo to navigate my life, I feel like it lifts some of the “veil of Autism” (constant misunderstanding of communication and other things) in my life.
I have a lot of thoughts about how long it took to get a diagnosis and being manipulated by people in my life. I like you, pick up hobbies and drop them after a while. I am very talented but frequently lack the EF to maintain these interests long-term. I have learned to build A LOT of rest and downtime in the days before and after working in ceremony. I give myself more grace now that I know I am not “lazy”. I use more tools and aids to run my life. I could write a lot more but thank you for sharing.
Thankyou for writing! Thankfully I think more and more people are speaking out and there is more representation although not nearly enough. If I find any useful resources regarding Neurodivergency and following this path, I will post on this Blog.
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