The Zebra Narrative

01/27/2024

01/27/2024

🤣

Congrats on the great workout! 😂
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Image description: text reads, "When your FitBit registers your POTS attack as exercise." Below the text is an image of the subject of the "stonks" memes. It is a poorly generated 3d image of a humanoid figure wearing a doctor's coat. Text next to the doctor reads, "helth." End image description

01/27/2024

😅

12/31/2023

How to recognize hEDS and it's many comorbidities.

The many symptoms and comorbidities of hEDS

12/31/2023

What are your glimmers?

12/31/2023

I know many of my followers are here because they're neurodivergent, but did you know that many neurodivergent folks (especially the autistic and/or ADHD ones) also have comorbidities, like hypermobile Ehlers-Danlos Syndrome and dysautonomia? This is an article I wrote as an introduction to Ehlers-Danlos. There is more information, including symptoms and comorbidities of hEDS on my blog, The Zebra Narrative.

An introduction to Ehlers-Danlos Syndrome

12/31/2023

I feel this photo accurately represents those of us dealing with temperature dysregulation and poor circulation to the hands and feet due to dysautonomia. Personally, if my feet and hands are cold, the rest of me is freezing. Likewise, if they're hot, the rest of me is overheating. This is why I stick my feet out from under the blankets when I'm too warm. There is no in-between, no happy medium. I'm always either freezing to death or sweating my butt off. Who else can relate?

12/24/2023

In case you all haven’t figured it out already, the EDS flares and burnout already attacked me for most of the year. But hey, at least I officially got my hEDS and POTS diagnoses so my life is starting to make more sense.

Happy Holidays to me 😑
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Image description: photo of a fisherman standing in a river while smiling and holding up a salmon. Behind the fisherman, in the water, is a bear who Iooking directly at him. The fisherman is labeled, "me." The fish is labeled "finally doing better physically and emotionally." The bear is labeled, "an EDS flare and burnout." End image description

12/03/2023

Me, every single night. What do you do to get a good sleep? Lately I’ve been using a cooling weighted blanket and find I don’t toss and turn as much while under it.

06/04/2023

on Twitter

06/02/2023

Goodnight hoomans

04/27/2023

Anyone else have the whole Autism-EDS-POTS thing going on? 😅

04/27/2023

Just wanted to share my excitement. I’m taking two fascinating classes over the summer and can’t wait to nerd out on them: fundamentals of neuroscience and human neuropsychology.

04/27/2023

I have heard many people refer to these as feeling like an alien growing up and not understanding why until they found out other people were thinking the same thing. I made it into this and I think it's a bit cute so I had to post it.

04/10/2023

Some of us still do this as grownups

03/31/2023

I don’t think I have ever met an autistic child who *wants* to game all day. We talk about this topic in our community, as it is a common belief which young people find really frustrating. So why does it *look* like young people want to game all day?

⭐ Gaming is a coping strategy:

If you are in burnout, have been traumatised by the school environment or are struggling, gaming is a way to escape from your difficulties. You can be so stressed that your own thoughts are overwhelming, so you constantly need something as a distraction, to avoid reaching crisis.

When I was younger, all I did in my spare time was play games. I found it really difficult to be in the real world, so I needed gaming to escape. In this instance, gaming wasn’t the issue, but being in an environment that wasn’t suited to my needs. As time passed I started to understand autism more and started to live life in a way that worked for me, rather than trying to “fit in” and do what was expected of me. As this happened, I didn’t need to escape as much, so gamed for enjoyment, rather than to survive (though I still have days “mental health days” where I game as my recharge strategy).

Many young people say they feel “stuck”. They want to learn, but are struggling so much they feel unable to, it might not always seem obvious that we are struggling, but that doesn’t mean we aren’t. Can you focus on improving their general wellbeing and reducing stress, so they can get back to a place where they feel able to learn? For some young people, this will take time, but that is ok. They will know when they are ready so it is helpful to follow their lead (we have seen this within SG).

“Gaming doesn’t stop me from learning. I use it to clear my mind and it makes it easier to do what I need to the next day”

⭐ Gaming is safe:

The gaming world is a place that you can control. Autism is so misunderstood that just existing in the world can be a huge challenge. Depending on how you game, gaming world can be safe space to venture out from, when the rest of the world feels unpredictable/ stressful. With this safe foundation, you can explore the world and start to find places/ spaces where you feel safe in the real world too.

What happens in games can also have no effects or consequences in real life. Your actions don’t affect your life, so it can be a safe place to learn about the world and problem solving.

Personally, when I am having a bad day or I am feeling stressed, I feel desperate to get back to the gaming world as it is my safe space.

“Gaming is a way to break free of your actual reality and be at peace in another”

⭐ We feel we don’t have any other option

We would rather learn and feel we are doing something meaningful than gaming in a non-productive way. Gaming all day, every day is *boring*.

➡ Some young people have struggled so much in the past that we have lost hope in learning in a meaningful way. What are the people around a young person doing to give them a reason/ motivation to learn again, in a way that works for them? How do young people know it is safe and they won’t face the same difficulties again?

➡ We may not have found something we are interested in learning about. Autistic brains are like on and off switches! If we are interested in something, we may be able to research it and learn about it for countless hours, but may really struggle to learn (and/or retain the information given to us) about something we care little about. Do we have opportunities to experience a range of topics/ subjects to find something we are motivated to learn about?

➡ Autistic people have spiky profiles, meaning we excel in some things, but also find some things difficult that others find easy. A young person may seem defiant, because they are experiencing difficulties that they don’t have support for. Are you aware of all the barriers to learning a young person has and what can help?

⭐ Gaming isn’t always a bad thing, it can be a huge positive experience.

It’s also important to remember that gaming actually has some huge benefits – some of which you may never actually recognise. Young people use gaming to learn, to develop positive connections with others and to recover from previous negative experiences. We highly recommend the video linked in the comments for more insight 😊

“I’ve met some of my best friends online through gaming, they have helped me get through life and we support and lift each other up, I’ve had a much happier frame of mind since i met these people, and we have so much fun together”

“It gives me a chance to just take my feelings out on something without hurting anyone”

“It brings me together with other people that enjoy the same thing as I do.”

(all quotes in this post are from Spectrum Gaming members)

03/25/2023

PDA, or Pathological Demand Avoidance (although I prefer the term "Pervasive Drive for Autonomy" is an Autistic subtype (and maybe ADHD) that has distinct characteristics. ⁠
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It's an important thing for parents to know about because:⁠
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1) It can be harder to get an Autism diagnosis as the child often doesn't present in the stereotypical ways. ⁠
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2)It has HUGE implications for how we parent, as these children do well with a low-arousal, low-demand approach to parenting. ⁠
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Here are some core features of PDA (source PDA Society UK). ⁠
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💚 Resists & avoids the ordinary demands of life to an extreme extent, including things they enjoy. This can lead to significant difficulties in daily functioning, social relationships, & education and can make parenting and healthcare challenging.⁠
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💚 Uses social strategies as part of the avoidance (often perceived as manipulative). These strategies may be compelling & can be difficult to distinguish from genuine physical or emotional distress, leading to misunderstandings & conflicts.⁠
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💚 Appears sociable on the surface. But experiences difficulty maintaining close relationships & engaging in true reciprocal play, which can contribute to social isolation & anxiety.⁠
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💚 Experiences excessive mood swings & impulsivity. These mood swings can be intense & unpredictable, leading to sudden outbursts or meltdowns. PDAers are particularly sensitive to stress, unexpected changes, or perceived loss of autonomy.⁠
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💚 Displays 'obsessive' behavior, often focused on other people. This behavior can manifest as intense attachments or aversions to specific individuals or groups, which may change over time or in different contexts. ⁠
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You can read more in today's blog post where I unpack PDA & low-demand parenting) (Link in comments)
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💚 Dr. Neff

03/20/2023

Love this so much! I just showed my daughter. 💜

03/19/2023

me take nap