What now?

Advice Needed

Four months ago one of my children was diagnosed AuDHD - PDA. Two months later, my other child was diagnosed autistic. I have lived and breathed autism research and PDA information for almost half a year (and not slept much as I tried to learn everything I could after the kids were in bed). I feel like I’ve got a good understanding on things now and a decent handle on how to support my kids in their needs. We’re still learning, but I feel like I have a direction.

In my learning I felt I recognized aspects of myself that might meet some criteria of neurodivergent diagnoses and I had my own evaluation done. Today I learned that I am autistic - PDA.

I feel like after all I’ve learned with the kids I shouldn’t feel so overwhelmed, but I do. I don’t know where to go from here. Nowhere? I don’t know what else there is to learn. I’ve read a lot about unmasking so, I guess there’s that, but I still need to show up as an adult and a parent so I don’t feel like I have the liberty to explore that in the way I’ve supported my kids in being their authentic selves. I don’t even know what my authentic self is. I’m a single parent to these two amazing and complex humans and don’t have the extra time to do some deeper work, if that’s even something that’s to be done. So, what now?

The other thing I’d like to explore is this thing that I experience. I have difficulty verbalizing a lot of what happens to me internally, and I’ve often described it to others as when you’re going for a walk and you pass a tree, you don’t typically think “that’s a tree”. You just know that it’s a tree. It’s not a thought, it’s not a feeling, and it’s a bit like an experience but not quite. Anyway, that’s a lot of how I process my… whatever. I have thoughts and feelings and this tree-thing. Unfortunately, most of my inner life is like the tree thing and I struggle to communicate to people about myself. This is especially difficult in therapy and leads to a lot of silence, which is frustrating. Writing is sometimes easier but not always. I was wondering if anyone a) knows what I’m talking about and b) has any ideas on how to “fix” it or work with it better.

Thanks so much.

in PDAAutismby lenorapinephrine

97%

1mo

DilatedPoreOfLara

1mo

I’m pretty sure that what you’re describing is Alexithymia which can be an Autistic trait.

https://en.m.wikipedia.org/wiki/Alexithymia

Not to take away from all the deep research you’ve done, but these conditions are extremely complex and there’s a lot of ongoing research still uncovering so much - plus research not being done that needs to be.

I was diagnosed myself in 2021, and I’m still finding new things out about these conditions - particularly the physical comorbiditiies that often go hand in hand such as EDS, MCAS, POTS, PCOS, PMDD, IBS (lots of acronyms) and more.

I’ve been where you are and also did all the unmasking too, but what I realised is that if we are to fully unmask and try to be unmasked all the time, then we’ll never survive in this world. As much as I wish we could live in an ND world, we don’t.

So understanding ourselves is important, but what I’ve now understood is that there has to be some sort of balance between our needs for our survival and what adaptations we have to make to be able to actually live beyond the confines of our home. I focus on teaching my children self-care, coping techniques and lots of self-compassion and kindness.

You’ll find your own way, but this is a lifelong journey of learning and understanding and adjusting to find the path that works for you and your family.

earthkincollective

1mo

I have one idea you might try, from years of doing highly intentional inner work. We can connect to our intuition and feelings in many ways: body sensations, our "felt sense", through words, visualizations, and probably more I can't think of right now.

So you might try switching up the mode of communication, so to speak. You already said that words don't work very well for you, but what if you tried one of the other ones, like visualization or through sensation?

One way to do that is to explore your inner landscape, going into your body and imagining it as a place you can explore. When you identify an emotion or feeling, you can explore it physically, noticing what it feels like in more and more detail (ie a heaviness, a constriction, a tingling). And you can engage with it visually, noticing what color it is, if it appears as an object or animal or figure, etc).

And then you can start to talk to whatever you find as if it's a separate part of you, letting you know that it's safe with you, and asking it to share with you more about what it's feeling, and so on.

This basically describes a practice called Focusing that was originally taught by Eugene Gendlin. It's pretty simple but a great starting place for really deep work.

lenorapinephrine

1mo

Thank you for taking the time to write this out! I’ll definitely explore this.

Exhausted_Platypus_6

1mo

Yes! You know you're "feeling" it and you know what it is but saying it's impossible! I get so frustrated when I try explaining it. It never comes out right.

AllFiresTheFire8

1mo

You have the tree thing. For me there are some writers that have helped me connect to my tree thing more. Julio Cortazar’s Bestiary stories. First chapters of Hopscotch. May be different from yours. But when I read your post I’m cheering for you so hard. I hope you don’t worry too much about the “authentic self”. I think it’s ok if we don’t know how to define everything. Sometimes we can let the mystery be there.

Green_Rooster9975

1mo

Yes. The tree thing is 90% of my internal experience, too. Communicating things is incredibly hard.

lenorapinephrine

1mo

Have you figured out anything that helps?

babystepstohappy

1mo

I started paying close attention to how people with synithesia described things (colors, tastes, emotions) and how chefs or tea and wine tasters described things. It made me slow down initially and try to pick apart why I thought this thing tasted good. Was it the mouth feel? Was that soft? Chewy? Was it bitter like an orange pith or bitter like grass? Did it bring up an old memory and what was special about that experience?

Slowing down and discussing it and seeing how other people experienced these tastes or emotions helped me understand what I was tasting/feeling and gave me a pattern I could then use in other aspects of my life.

lenorapinephrine

1mo

Fascinating, thank you!