Tending to Late Diagnosis Autistic Grief.
Image description: Over a blue background there is a picture of a woman with her head in her hands. The title reads “tending to late diagnosis autistic grief.” There is a brown button that says “read more.”
When I realized that I was actually Autistic in my mid-30’s I remember being surprised by the full spectrum of emotions. On one hand there was this deep exhale of relief and of finally having a name for my experiences and struggles. However, I was also taken aback by more challenging emotions like grief, anger and shame. For a huge part of my life I had seen my challenges as “symptoms” of trauma and I had been actively working on healing for a large portion of my life. Part of the grief was identifying that there were things I couldn’t heal because they were just a part of being Autistic. The process of being in autistic burnout at the time and exploring who I was through unmasking also brought up other layers of grief and sadness.
Experiencing challenging emotions is a common experience when we receive a later in life diagnosis. There might be grief, anger, sadness-often mixed in with internalized ableism and a sense of overwhelm. Experiencing challenging emotions can be so hard and the good news is that there are gentle and supportive ways we can tend to these challenging emotions. In this blog post I’ll share a bit about late diagnosed grief and how we might work with grief.
What does Autistic Grief mean?
The American Psychological Association defines grief as the anguish after a significant loss. While grief can often refer to the loss of a person or pet, it can also be experienced as deep regret for something lost. So autistic grief can refer to the anguish of experiencing things like:
receiving a diagnosis later in life and feeling deep grief over having spent the majority of your life feeling like something was wrong with you.
being in severe autistic burnout and grieiving not being able to engage in specific experiences and mourning the loss of skills.
grief can be intertwined with internalized ableism-for example the stigma connected to being autistic could look like a person grieving “not being normal.”
It’s important to note that grief can be combined with other emotions such as: sadness, anger, shame and excitement. Shortly after my diagnosis I remember experiencing a lot of excitement over finally knowing that I was Autistic and feeling a lot of grief, sadness and even anger.
What if my grief feels frozen?
Image description: Over a winter background there is a quote written in black text that reads: “The way we work with freeze is by focusing on small doable steps and trusting in your own unique timeline. So instead of trying to force ourselves out of freeze we focus on creating the right conditions to gently thaw the freeze.” The website www.tiffany-landry.com is written at the bottom.
Sometimes we can experience challenging emotions that are protected by layers of freeze. For example, perhaps there’s a lot of freeze on top of grief or anger. We know that our neuroception is our nervous system’s embodied response that automatically sizes up threats and sees which response will help us survive. A freeze response can show up when our body physiologically senses that it won’t be able to win by going into a “fight” or “flight” response. So if you’re experiencing “stuck” emotions that feel hard to express you might be in a freeze response.
The good news is that you can begin to thaw out freeze with small doable steps like:
gentle nervous system resourcing specifically for freeze responses. This could look like orienting yourself to your space, some gentle movement and bringing some physical presence in-such as a weighted blanket, a heat pad over your kidneys or even just connecting to the stability of the surface beneath you.
create safe enough conditions to thrive. Perhaps that’s validating that your freeze response makes so much sense, patience and trust in your process and compassionate care.
The way we work with freeze is by focusing on small doable steps and trusting in your own unique timeline. So instead of trying to force ourselves out of freeze we focus on creating the right conditions to gently thaw the freeze.
Whether you’ve identified that your grief is hidden under layers of freeze or not, let’s look at some gentle way to tend to grief.
Image description: Over a white and yellow background there is an image of a woman with her head on her knees, you can see a bubble that represents sadness and grief. The title is written in teal and reads “3 ways to tend to autistic grief.” There are 3 teal bubbles that read “validate that your grief makes sense”, “conditions of care and compassion” and “use an autistic lens.”
1.) Permission for grief to be here.
Grief, like other challenging emotions, can often feel so hard and overwhelming. It might feel like you’re desperate to not feel grief, to invalidate it or to brush it away. But how would it feel to instead validate your grief and give it permission to be here. You might ask yourself:
“Can I validate that my grief actually makes sense?”
“What would it look like to say hello to grief and to let it know that it’s allowed to be here?”
“What would be a compassionate way I could tend to my grief while still creating boundaries?”
Grief can feel challenging, overwhelming and even scary. So it can be supportive to tend to it and create boundaries. When I work with clients who are wanting to work with grief I always suggest creating a container for grief. Perhaps that’s tending to grief for 15 minutes a day, doing a 30 minute practices or deciding you’ll only work with grief in a therapeutic container such as in a therapy or coaching session.
2.) Turn towards grief with compassion and care.
When we’re experiencing grief it can feel like the last thing we want to do is connect to our bodies. Our grief might feel so challenging that it overwhelms our capacity to cope or perhaps feeling numb feels easier than feeling the depth of our grief. But it can be so important to turn towards our grief with compassion and care. That could look like.
Taking a moment to feel what’s happening in our bodies and then pendulating to something that feels steady, neutral or even boring.
Asking yourself “what would be most supportive for my grief to receive right now?” Perhaps it just needs to be listened to or perhaps there’s a type of care that would feel deeply supportive.
Start with the health, dip into difficulty and then go back to health. Grief can feel big and overwhelming, so we don’t have to do too much. The most trauma informed and loving way we can tend to our grief is by prioritizing our health and taking small doable steps. Work with your nervous system and honor your capacity.
3.) Tend to autistic grief with an autistic lens.
An important way of tending to autistic specific grief is by combining the above tools with an autistic lens. In my own experience dealing with autistic grief I found that the combination of somatic tools and autistic education and community to be deeply supportive. Autistic grief after a later in life diagnosis makes so much sense and working with that grief might include things like:
Space to grieve and identifying how your internalized ableism might be showing up. For example: grieving that you’ll never be “normal” and unpacking how internalized ableism shows up in this concept of “normal.”
Talking to other late identified autistic or AuDHD adults about grief and other challenges emotions post diagnosis. Sometimes what might feel deeply healing is to feel seen and heard in your experiences.
Bringing in autistic resources to support your during a time of grief, such as weighted plushies, special interest items, sensory tools and more.
Giving yourself permission to grieve and also make time to notice moments of autistic joy, things you enjoy about being autistic or autistic celebrations. When we’re in a period of grief it’s important to also ask ourselves: “without bypassing this grief is there anything healthy, supportive or good to notice?” Maybe that’s something as simple as feeling a bit of ease when you pat your cat or identifying that joy you feel when you spend time with a special interest.
Seeking out neurodivergent affirming practitioners to support you. Perhaps that’s finding a therapist or coach that can support you in working with your grief. You deserve to get support.
“I see you and I’m listening.”
So many of us late identified Autistics and AuDHDers have experienced being invalidated-whether that’s being called “too sensitive”, had our meltdowns labeled “tantrums” or simply had our experiences invalidated. Which is why I believe that approaching challenging emotions with validation and autistic affirming care can often be incredibly healing. Sometimes our grief might feel too big to deal with or we might not know how to begin to work with our grief. In those moments we can begin by simply validating our grief. You might explore telling your grief “I see you and I’m listening” or “I care about this grief.” What happens when you approach your challenging emotions with the care that you desire as an Autistic person?
Tending to our grief is about working with our nervous system, honoring our capacity and exploring small doable ways of moving through our grief. If you’re not quite certain of the smallest doable step it might be helpful to ask yourself “what would be the kindest thing to do for myself right now?” or “what would be the most loving thing to do for my grief right now?” Grief work is not simple work and so many late diagnosed autistics are dealing with grief while also experiencing things like autistic burnout, exploring unmasking and more. Which is why it can be so helpful to gently remind yourself that you (yes, you reading this) deserve support. Perhaps that’s by working with a neurodivergent affirming therapist, coach or participating in an autistic support group.
Resources & further reading:
Grieving an Autism Diagnosis by Neurodivergent Insights
I first heard the phrases “I see you and I’m listening” and “I care about this pain” from Shelby Leigh.
Thank you for reading!
I hope this blog post was supportive. If you’d like to share a bit about your own experience with grief-please feel free to share in the comments.
The information contained in this blog post is for general educational and informational purposes only and should not be construed as medical or mental health advice. The information provided is not a substitute for advice from a qualified professional who is aware of the facts and circumstances of your individual situation. We expressly recommend that you seek advice from a professional familiar with your specific situation.
Your autistic healing matters.
I hope this blog post was helpful in your own autistic healing journey. I truly believe that us late diagnosed autistics deserve autistic affirming healing and I hope you have the best practitioners, tools and support for your own healing.
If you’re seeking autistic support and healing, I’d love to support you in my 5 month program The Autistic Mentorship. It includes:
An intensive intake session & healing map to identify your goals and developmental objectives that we’ll work on in our program together.
Three (75 minute) sessions a month.
Lots of support & education: think recap emails + personalized practices sent to your inbox, neurodivergent workbooks and resources and two optional 30 minute check-in calls.
You can find out more about The Autistic Mentorship here.
Tiffany Landry is a queer autistic coach and trauma resolution practitioner. She works with queer and autistic clients in her program The Autistic Mentorship. Tiffany also writes a free newsletter on Substack called The Queer Autistic Newsletter.