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Understanding Late Diagnosed Neurodivergent Grief: A Journey to Healing

a large rusty metal door with "what did they take from you" in blue spray paint

Discovering that you're neurodivergent in midlife can be a profound and transformative experience.

For many women, a late diagnosis of autism or ADHD (or any other form of neurodiversity) can bring about a whirlwind of emotions, including a deep and often unexpected grief.

Understanding where this grief comes from, what it can feel like, and why it's okay to feel it is essential in embracing your neurodivergent identity and moving towards healing.

Where Does Late Diagnosed Neurodivergent Grief Come From?

The grief associated with a late diagnosis of neurodiversity can stem from many places, depending on the life you have lived and the life you have desired. For many, it’s the realisation of a life lived with struggles that now have a name and an explanation.

There’s a mourning for the years spent feeling out of place, misunderstood, or inadequate.

Reflecting on past experiences through the lens of a neurodivergent diagnosis can illuminate missed opportunities and moments of unnecessary struggle. What would life have been like if we had known sooner? What would have been different and easier? Who could we have been without the burden of masking who we really are?

a light skinned black woman with freckled skin and curly hair has her eyes closed and holds her face in her hands

Moreover, there's a sense of loss for the self that could have been — the person who might have thrived if only they had known sooner. The weight of societal expectations and internalised ableism also plays a significant role, as many women grapple with the internal conflict of reconciling their new identity with the person they were conditioned to be.

A sense of loss also for the versions of you that could have found understanding and belonging earlier in life and taken perhaps a different, now unknowable path.

What Does This Grief Feel Like?

Grief after a late diagnosis of neurodiversity can manifest in various ways. It might feel like a heavy sadness or a deep, aching sorrow.

Some experience anger at the systems and individuals who failed to recognise their needs sooner. Others feel a profound sense of relief mixed with regret, knowing that their struggles were not their fault, yet wishing they had understood this earlier.

This grief can also bring about feelings of isolation, as it can be challenging to explain to others why a diagnosis, which might seem like an answer, also brings so much pain.

I remember feeling so frustrated that my family did not quite understand how profound this discovery was for me. My husband summed it up by saying "We just know you as you are and have always been - knowing you're autistic doesn't change anything" - for him, nothing had changed, but for me, everything had changed and I felt great loss as a result.

silhouette of a woman with a long dress and hat. She is standing on her tip toes with arms spread wide as the sun sets behind her

It's important to acknowledge that these feelings are valid and a natural part of the healing process.

Why It’s Okay to Feel This Grief

It's crucial to recognise that grieving is a healthy and necessary response to a late diagnosis of neurodiversity - as it is for many of life's transitions as we learn to let go of who we were and step towards who we are becoming.

Allowing yourself to feel this grief is an integral step towards self-acceptance and growth. Suppressing these emotions can lead to further emotional and psychological distress - even manifesting as physical symptoms.

By acknowledging your grief, you validate your past experiences and honour the journey that has brought you to this point.

Tips for Dealing with Late-Diagnosed Neurodivergent Grief

Express Your Grief: Find ways to express your emotions constructively. Journaling, art, or even talking to a therapist can provide an outlet for your feelings. Writing letters to your younger self or creating art that represents your journey can be particularly cathartic.

Communicate with Trusted Individuals: Share your feelings with those you trust. Open conversations with friends, family, or a support group can help alleviate the burden of carrying these emotions alone. Explaining your grief to others can foster understanding and support.

Connect with a Supportive Community: Seek out communities of late-diagnosed neurodivergent individuals. Whether through online forums, local support groups, or social media, connecting with others who share similar experiences can provide comfort and a sense of belonging. These communities can offer validation, advice, and a safe space to share your journey. Check out the Connection Circles if you're interested in joining a supportive community of other ND women.

Practice Self-Compassion: Be gentle with yourself. Understand that grieving is a process, and it’s okay to take the time you need to heal. Celebrate the strengths and unique qualities that your neurodivergent identity brings.

Engage in Self-Connection Practices: Incorporate self-connection practices such as mindfulness, meditation, or yoga into your routine. These practices can help you stay grounded and present, providing a sense of peace amidst the emotional turbulence.

silhouette of a woman with outstretched arms against a cloudy sunset over the sea

Embracing Your Journey

Grieving after a late diagnosis of neurodiversity in midlife is a testament to the depth of your experience and the resilience of your spirit.

By acknowledging and honouring your grief, you pave the way for a more authentic and fulfilling life. Remember, it’s okay to feel this grief and to take the time you need to heal. You are not alone on this journey, and with support, compassion, and understanding, you can embrace your neurodivergent identity and thrive.

Navigating late-diagnosed neurodivergent grief is a unique and personal journey, but with the right support and tools, it can lead to profound self-discovery and empowerment.

Remember, your grief is welcome and is there to remind you to honour all parts of you as you release who you have been and make space for coming home to your true self.

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