PDA Relationships

April 8th, our Autistic Adults with PDA Support Group members met to discuss PDA relationships. For privacy reasons, we did not tape our 90-minute conversation but we did take notes that we'd like to share with you now.

PDAers: What’s Going On In Our Minds

So often, when together with someone we care about, we are feeling guilt, shame, and environmental stress – not feeling friendly to ourselves let alone those around us.

We’ve been masking, giving strangers or co-workers and bosses our best behavior, and those we love then get our worst.

PDA is often generational. We remember our parents leaving for long drives and other
coping strategies and we now understand why.

We often feel like rage-aholics, letting out our anxiety in an unhelpful way. So very
upsetting when it's directed at our kids or anyone else we care about.

We want to strive for a harmonious mind - but it is so frustrating.

We may look put together but it is a total fabrication.

We read a lot into situations, unnecessarily.

We feel like people cannot love us when we cannot handle the demand. (lots of tears for us when discussing this topic, because some of us worry we will always be alone and continuously abandoned). We feel so alone. We are having trouble finding our people.

We know we have to “put ourselves out there” but it is difficult.

We are always being told we are “too much".

We feel rage and rejection. We are working hard to find ways to turn off the threat response.

In a discussion or argument, our blood flow goes to our amygdala and our frontal lobe

stops working. We lose our words and cannot defend ourselves in a productive way.

We usually completely lose our words OR we feel a huge fight response and go into full threat mode. Ex: We may put our fingers in our ears, rocking in a corner while repeating a phrase to pretend we are alone. Or we might start telling ourselves an elaborate story to distract ourselves. Not exactly a good workplace technique but we are just trying to calm our nervous system.

Wooden fence with a heart written in white chalk. — Your love and acceptance means a lot

What Has Worked (Long Term or Temporarily)

IMPORTANT: Don’t question why I need something. Please just accept.

When you and I check in with each other often, by communicating what is happening and what you are feeling so there will be fewer blow ups and misunderstandings.

Ex: I found myself holding a grudge for years because I

misunderstood my partner’s intentions / what they were thinking. We finally

discussed this situation from long ago and I learned all my assumptions

about the situation were incorrect. I felt a huge emotional load disappear-

and lots of relief.

Help us create safe places.

Ex: a notebook that allows for no judgment, where we can write what bills are due.

Let’s continue to look for tools and systems for communicating better.

Ex: Whiteboards because we can see them vs. a notebook we forget about once

it is out of sight.

Keep trying. Please don’t give up on us.

Let’s discuss how to avoid triggers, at a time I am not triggered.

Ex: I need order – can’t eat or do anything when it is messy, especially our kitchen. Let’s talk about it when I am not triggered and when we do have an orderly place.

Discovering our love language(s) can be helpful.

Sometimes we feel more peace if we let people go. Why? Because it is not

only exhausting to manage the relationship but it is also very depleting to ruminate

about it over and over again in our mind. We are making some peace with

the thought that sometimes people come in and out of our lives and that is

okay.

Many people working close together in an office setting. — Many of us have sensitive nervous systems and get overloaded quite easily

Our Worklife

Happens Often: I receive my diagnosis and then talk with my boss about

creating accommodations. My supervisor informs me that it is “not their problem.

(Especially surprising to come from a non-profit.)

One of us asked for a quiet space not used by anyone.We were told that we

couldn’t utilize it to calm our nervous system because it is available for

everyone, not one person in particular.

Young adult leaning against a decorative wall, looking lonely and sad. — We need your complete acceptance

Our Advice to Parents of Young Adults - What would have helped us at that age, when the world seemed so against us.

This conversation was the result of my sharing with our group that a father of a young adult PDAer had recently called me, beside himself on what to do for his son. This dad wants so much to understand how to be there for his son. I asked the group for their advice. They considered what would have helped them at this tender age.

#1 MOST IMPORTANT: Your relationship with your PDAer. Be the safe place they

can come home to.

#2 MOST IMPORTANT: Always assume positive intent.

I need you to show incredible patience.

Please give me complete acceptance.

Allow me to mess up while giving me lots of autonomy.

MOST IMPORTANT: Your relationship with your PDAer. Be the safe place they

can come home to.

Behavior = Communication (not good or bad) These are “can’t” moments, not “won’t” moments.

Our society gives us so many “shoulds” that just don’t work for us. We don’t

believe in hierarchies. We do believe in fairness and society isn’t fair for us.

More is expected of us when we actually need more support than other

people.

We are especially scared right now, in this political climate.

Please do your very best not to future-trip about our future.

Tell your PDAer that your approach has been wrong. You are learning now

how to do better.

Allow your PDAer to have all the power.

Give us time to process without filling the air with more words.

When a PDAer uses their imagination to become another person or exist in a

different reality, this is a coping strategy.

Ex: A group member shared that she was feeling exhausted with extended family at a restaurant. She decided to become a southern bell for the rest of the night, using a different voice and mannerisms, even with the waiter. Her father told her how pleasant an experience it was for him to see her smile and act in the way she did. He didn’t realize she was masking.)