Neurodivergent Boundaries 💫

Your needs are reasonable.

Boundaries can be extremely difficult for neurodivergent folks to navigate.

This is particulary true for those of us who were late in life to realize our neurodivergence.

For decades I saw my autistic traits as my character flaws. Reframing them to ask for the supports I need has been a seismic shift for me.

If you’re following along on Instagram you may have seen the series of posts I shared about setting boundaries. (Or depending on the algorithm perhaps not. If you’re not seeing someone’s posts in your feed you can tap “Following” on their profile and choose “Add to Favorites”.)

I wrote these as a pep talk for myself and decided to share.

This is the first holiday season since my son’s autism diagnosis and I am drawing some lines in the sand about what we really need.

But you don’t need a diagnosis to advocate for your own needs.

The diagnosis isn’t a magic paper. It doesn’t actually do anything on an interpersonal level. (I would suggest an official diagnosis is only helpful if required by your workplace, school, or insurance to offer supports and resources.)

I was officially diagnosed seven years ago and even so I have never properly advocated for my own needs. It took my son’s diagnosis (and the resulting inner work) to reframe my autism and start to see my own needs as neutral and valid.

If you are also struggling to ask for what you need remember I am over here rooting for you.

Your needs are valid.

Sensory pain is real.

Time to decompress is essential.

I am new to all of this! But I’m sharing my story to help you all feel less alone. This isn’t a template, it’s just where I am right now in my boundary setting process.

How I supported my neurodivergence when setting boundaries…

1. I no longer make phone calls. When a phone call is required I say, “I have auditory processing disorder. Text based communication is best for me. Can we do this via email or text message?” (I don’t always disclose my autism diagnosis because it is easier for most people to understand a difficulty hearing. We don’t have to fully educate every person. We can choose to communicate the specific piece of our neurodivergence that is relevant to the situation. Or the piece that is most easily understood.)*

2. I communicated what we need through a letter in the mail. The resistance I had to doing this was strong. But I wanted to set these boundaries in advance and didn’t feel able to do so over the phone. When I was packaging up the letter I thought about all the times I heard written communication described as “passive aggressive.” This is definitely from a neurotypical perspective. I wonder how many of these “passive aggressive” notes and letters are a last resort by neurotypicals whose needs are being misunderstood or ignored?

3. I made a schedule. Important routines such as meals, afternoon downtime, and bedtime are fixed and in red. Places to eat that meet sensory needs have been decided in advance.

4. I also included an informational packet. I printed some of my favorite pages from Andi Putt’s Autism Handbook(not an affiliate, just love her) and bound them in a paper folder. I put a sticky note that said, “More info. Please read the bits I highlighted.” I also printed a copy to bring with me so I can refer to it if I feel stuck in the moment.

Does that sound brave?

It was.

I am still incredibly nervous about how these boundaries will be responded to.

It has taken a lot of work to get here, but at this point I would be unable to visit extended family without these supports.

Since becoming a mum I’ve noticed that I have less capacity to mask than I used to. And I simply cannot push past my limits without hitting a brick wall. Our last family visit ended with a panic attack and a mental health spiral that almost landed me in a mental hospital. The stakes are high.

I’m not exaggerating when I say that I have anguished for years over how to set boundaries and what boundaries would even help.

During pregnancy I signed up to therapy for support setting the postpartum boundaries I needed. But I was invalidated by a therapist who didn’t understand autism. If you’re looking for support try to find someone who gets it or they could do more harm than good.

Four years later I finally worked up the courage to ask for what I need thank to support and validation from @autistic_therapist Steph Jones in a 1:1 coaching session earlier this year.

Before I could set boundaries I had to internalize the fact that my needs (and Davy’s needs) are valid. And I had to stop trying to make boundaries that were “reasonable” so I could ask for what we really needed.

What boundaries did I set?

Most of us haven’t seen this type of boundary setting modeled. So I am sharing some of the areas we asked for support. We all have different needs so your supports will be different.

Don’t use this as a framework, but as inspiration to set the boundaries you need.

1. Space - a private space to decompress. (We booked an Air B&B that fits our sensory and social needs rather than staying with a family member.)

2. Overstimulation - limiting the number of auditory inputs at one time.

3. Social overwhelm - limiting the amount of people present. (For us this means more intimate visits and not including the entire extended family.)

4. Structure - we will be following our schedule for meals, downtime, and bedtime. Others are free to join us or not.

5. Respect - I have asked that preferences to not be touched, photographed, talk, or make eye contact be respected.

That’s it! Please wish us luck and send any positive vibes, prayers, energy, our way.

Cheers,

Sarah

*Because of privacy issues my insurance is one exception that refuses to speak to my husband on the phone. I have yet to find a workaround and we struggle through the calls together on speakerphone. If you have advice for this navigating supports in health care / insurance settings please share.

Originally published at neurodivergentspacetime.substack.com on November 18, 2022.