Healthy grieving is part of a neurodivergent-affirming life.

By Rabbi Shoshana Meira Friedman

The neurodiversity movement has fought hard against the narrative that Autism is a tragedy. We continue to push back against the damaging idea that parents of Autistic kids have “lost” their child to Autism.

Because we are trying to correct for generations that only centered grief around Autism, sometimes we forget that grief still has an important role to play our lives.

This is in large part because we are living in an ableist culture that actively traumatizes Autistic and PDA people, especially children, and which is actively dangerous for many, especially Black and brown folks.

Imagine a culture where PDA and Autism were expected and understood variations of being human, and where families and communities were set up to accommodate, validate, and support all children's needs for autonomy and co-regulation since birth. Imagine those children growing up into disabled but not-traumatized adults.

In this alternate reality, some folks would still be disabled and life would still be harder in many ways. But overall, there would be a lot less grieving for us to do.

In the PDA community, there are specific layers of grief that come up within our ableist cultural context:

Grief about social isolation during burnout. Grief about the misguided or actively harmful advice we received from professionals. Grief that we did not know about PDA sooner and therefore did not prevent burnout for ourselves or our children. Grief that the threat response is so intense that we or our loved one is not able to stay safe, or meet basic needs, or connect with a loved one. And much more.

So, here is everything I currently know about grief.

Grief is how our bodies metabolize loss.

Grief is not simply an emotion that comes and goes. It's a physiological process of digestion. (Thank you to my husband Yotam Schachter for this framing). When we grieve, we are digesting an experience of loss. We're letting the experience move through our bodies.

Grief is morally neutral.

In The PDA Safe Circle, we celebrate neurodiversity and affirm that being Autistic, ADHD, and/or PDA is a valid way of being human, not a tragedy, and not something to cure or fix. We are committed to the thriving of PDAers in a culture not designed for us. However, we are still allowed - and in fact usually need - to grieve as well. This is because living well with a disability or parenting a disabled kiddo almost always includes some kind of loss. Loss of resources, expectations of what our life would look like, loss of ease, loss of certain communities and relationships, career paths, and more.

Grief is a physiological as well as psychological process.

Grief happens in and through the body primarily, not the mind. I have felt grief as stabbing pain in my chest, dull aches in my arms, nausea, and vertigo.

Crying, punching pillows, dancing, running, singing, humming, shouting, intentional breath work, storytelling, making art, writing, and sending compassion to your grief are examples of what can help move grief through the body. 

Sometimes I need to put on music to cry. Sometimes I want to be alone. Sometimes I want to be with my dog. Sometimes I want to be outside. Sometimes I want to be held, and I am very blessed to have a partner where we know how to hold each other in grief.

After a good cry, I feel cleaned out. Ready to see clearly and love myself and my kiddo, my husband, my work, my life even more.

If we don't move grief through, it gets stuck and causes more suffering. 

Stuck grief can manifest as headaches, chronic pain, fear, depression, anger, indigestion of food, difficulty communicating, fear of intimacy, tension or anger that makes it hard to co-regulate a child, and so much more.

Feeling grief always hurts less than suppressing it.

We avoid feeling grief because we're scared it will hurt. And it does hurt to grieve. But suppressing grief hurts so much more. I relate to healthy grieving like getting into cool water to swim. It looks so scary from the outside, and it is uncomfortable for a moment, but once I've taken the plunge to actually cry, scream, talk about it, make art about it, or even simply pay attention to it, feeling grief gives relief.

To feel grief without being flooded, we may need support. 

Being flooded means having so much intense emotion that you are outside your safe circle, overwhelmed by the emotion, and lose access to Self. Some people consider Flood as a form of threat response, and I include is as one in The Safe Circle Coloring book. I used to get totally flooded by my grief over the climate crisis, for instance. If healthy grieving is like getting into cool water, being flooded is like swimming out too far and getting caught in a riptide. Many neurodivergent people have very intense emotions, and flood easily. There are particular therapy modalities that can support you in learning how to not get flooded. Somatic Experiencing, EMDR, Internal Family Systems are all very helpful here. Medications can help, as can doing reps of Separate Story from Sensation during your daily life.

Grief comes in waves. 

We rarely feel the sensations of grief constantly. Even after the death of a loved one, the intensity of sensation will come and go, so long as we express the grief as it arises. (if we suppress it, we are likely to feel pretty miserable constantly). Riding the waves of grief is not unlike riding contractions during child birth.  

Grief happens over time.

Just as chewing our food is only one tiny element of digesting it, one or two sessions of feeling grief is only one piece of the grieving. It takes many waves of grief to process a major loss. Some losses need to be grieved in waves over a lifetime. Personally, I can go for months feeling calm gratitude and deep acceptance for the life I have, and then be hit by several days of deep grief for the losses. So long as I feel and cry and write about it when the wave comes, I come out the other side with a deeper ability to connect to my family, feel gratitude, and experience joy than I did before the wave. 

Righteous indignation can cover up grief. 

Grief can get caught inside us behind a wall of righteous indignation. This kind of righteous indignation in relationship to PDA or Autism can sound like, "We need a solution to this disability. Someone here is to blame. Whose fault is it?" It's totally valid to have a part of us that feels this way. Most of us have more stories than we can count of medical and educational professionals misunderstanding or dismissing or gaslighting us. We can also feel angry at ourselves for years of mistreating our children or our own bodies and minds. Anger has a place, and we can move anger through our bodies, too.

But staying enmeshed with righteous indignation actually suppresses grief and gets in the way of healthy connection and thriving. So, to use the language of Internal Family Systems, the wise path is to differentiate from that righteous, indignant part, and eventually feel the grief that part of us is protecting. Then we can better connect to loved ones, build communities of mutual care, and advocate from a regulated place for policies that actually support PDAers, Autistics, and our loved ones.

Healthy grieving makes room for connection. 

Every human being experiences loss. As my husband says, vulnerability is not a skill. It's a fact. The only question is how do we relate to that fact? When we allow ourselves to grieve, we are softening our hearts. We are opening ourselves to the human experience. I like to picture the cracks of my own broken heart - which breaks for so many personal losses and injustices in the world - reaching out through my body and connecting to the cracks in the broken hearts of every other person. We break open the way a window opens. 

Here are losses I personally grieve due to my own and my child's disability:

• The years of chronic dysregulation

• How much my kiddo suffers from his threat response

• The inability to do many things I love

• Not having more energy to see friends, not going to other people’s houses for playdates or family time

• Not getting to delight in my child playing with other children his age (he has zero interest, which is fine but I still feel sad for my loss)

• Not getting to be part of a school community (kiddo doesn’t care but I would have loved that)

• The loss of income

• Years and money lost to “experts” who sent us down the wrong path Loss of physical freedom during burnout

• Not being able to sing on a daily basis because my singing triggers my child (singing is pretty much like breathing to me)

• Years of conflict with my husband, since we didn’t understand my PDA triggers and Autistic brain

• Chronic co-occurring autoimmune, hypermobility, and digestive issues

• The loss of any certainty or hint of certainty about my child's future

• Struggles in my marriage due to my PDA threat response and how much tension and hypervigilance I carry

To support yourself in allowing grief to move through, you can reflect on these prompts:

• I imagined my life would look like....

• My life currently looks like...

• I have lost...

• Here are the sensations I feel in my body when I feel grief....

• Here are the stories my sadness is telling about me, my life, my family....

• My grieving part looks like/sounds like/is named...

• My grieving part wants me to know...

• My grieving part wants to express itself by...

• Support I need in order to be able to grieve without being flooded....

I always make room for my clients’ grief in our sessions, if it is arising. Many of my clients have been trying to hold it together for so long they don't have a space where it is safe to fall apart.

For some, the tears arise as soon as they get on Zoom with me. They apologize, and I remind them it's absolutely OK and beautiful to cry.

Loss is part of every life. Disability is a normal part of the human experience. We can be both proud of who we are and allow ourselves to feel sad and actively grieve the losses and limitations that come with who we are.

If you're looking for a neurodivergent-affirming PDA community that knows how to both celebrate strengths and joy and honor the sadness or fear or anger that arises, I've got you. The PDA Safe Circle™ is open and ready for you to explore and try a week for free. Membership is affordable to all, no exceptions.