A Love Letter to Late Diagnosed Autistics.
Note: an earlier version of this essay was published in my newsletter The Queer Autistic Newsletter. You can read that version here.
Dear fellow late diagnosed autistic,
Like you, I also realized that I was autistic later in life-in my mid 30’s to be exact. I realized I was autistic because my body exploded in severe autistic burnout after an online Zoom retreat that zapped all of my spoons. While I don’t know how you realized that you’re autistic, I just want to say that all of your feelings are welcome. Perhaps you feel a deep sigh of relief or excitement to finally have a name for your experiences and how your brain works. But I want to gently remind you that it’s so common to have both positive emotions, as well as more challenging emotions like grief, anger, sadness and shame. While everyone’s experiences will be different, there’s a bigness to a later in life diagnosis. My wish for you is to validate all the emotions that come up, almost as if you’re whispering to them gently “you make so much sense.”
When I think back to my newly late diagnosed autistic self, I feel so much gratitude for the ways I reached out for support. Investing in an autistic life coach, finding a neurodivergent affirming therapist, reading autistic memoirs, making autistic friends and exploring neurodivergent education were all helpful steps for me. I like to remind people that yes, we can do hard things and we shouldn’t have to do them alone. Whether you’re in the early days of exploring your neurodivergence or it’s been years since your self-identication/diagnosis: can you add in 1-2 different types of support? If you feel stuck on what type of care you need, can you perhaps ask yourself: “what would be the most supportive care for my late diagnosed autistic self to receive?”
After I got my combined Autism + ADHD diagnosis I remember feeling anger and grief around all the ways my neurodivergent traits had been invalidated throughout my life. I recalled past experiences of being told “you’re too sensitive” or “you’re just being a drama queen.” I remember how being invalidated by others led to a lack of self trust. If others told me “that sound isn’t too loud, you’re just too sensitive” then how could I trust my body, brain and intuition? I’m sharing this with you because part of my post traumatic growth journey after my diagnosis was learning how to trust myself again. If you also find it difficult to trust your body cues, your experiences and intuition-that makes so much sense. A great way to rebuild self trust is through validation. So validate your experiences and needs-both big and small. Tell yourself “my sensory pain is valid and makes so much sense” and “it makes sense that thing is challenging for me.” Can you celebrate each small way you trust yourself too? Perhaps ask the people in your life if they can validate your experiences too?
It makes so much sense if you’re struggling. Not only is a later in life diagnosis a big thing, you’ve also likely gone the majority of your life without getting your neurodivergent needs met. So if you’re in autistic burnout, it makes so much sense considering your autistic needs have probably chronically gone unmet. If life is feeling extra hard or it feels like you’re sinking deep into autistic burnout-can you be gentle with yourself? I’ve found the most compassionate care we can give ourselves is gentleness, kindness and small doable ways we can get our autistic needs met now. While ideally we work with an autistic practitioner who can guide us in this work, it can look like simple things such as wearing noise cancelling headphones, getting to know your sensory profile, advocating for your needs and doing less. If you’re not sure how to meet your autistic needs now, turn to the neurodivergent community. Read online social media educational posts, buy a workbook on executive functioning, hire an autistic coach or ask an autistic friend for things that they’ve found supportive.
I remember dating after I was newly diagnosed and feeling like I was punched directly in the heart whenever someone on a dating app would say something ableist. My neurodivergent identity was so tender and new, it makes so much sense that encountering ableism hurt-especially as I was processing my own internalized ableism. My biggest advice for when you encounter ableism out in the word? To pause and name what’s happened. To literally say out loud (or in your head) holy ableism or “this is ableism.” Then to gently remind yourself that this ableist message isn’t actually true. Then to tell yourself the autistic affirming truth rooted in your innate value and worthiness as an autistic person. Also it’s quite common for internalized ableism to show up post diagnosis. Can you get curious when you notice an internalized ableism message coming up? Then perhaps ask yourself: “what’s the autistic affirming truth?”
While preparing for my autism assessment I wrote that it “felt like everyone had a manual for life…except for me.” For many neurodivergent folks we’ve been struggling throughout life trying to use a manual for neurotypicals, when in fact we just had a different operating system. Think of it like if you have a Mac computer and had been using a Windows manual-you probably struggled with operating your computer. One of the beautiful things about realizing that you’re autistic later in life is getting to design your own personalized manual for your brain. We can do this by learning about our neurodivergent nervous systems, neurodivergent education, as well as tools and tips from the neurodivergent community. My wish for you is for you to get to know yourself, the areas where you struggle and the different types of support that make life accessible and supportive.
While you tend to things like autistic trauma, your sensory needs and the accommodations you need-can you also make space for neurodivergent joy and pleasure? Perhaps that looks like making time for stim breaks, celebrating how fun it is to focus on your special interests, delighting in your sensory joy or noticing how your feel so seen when you’re connecting to autistic friends. My hope is that you make space for autistic joy and pleasure-especially when you’re going through a difficult time. There is power and magic in our autistic joy and it can be a sweet healing balm during challenges like autistic burnout, meltdowns or shutdowns. As someone who is very sensory avoidant, I love how that same sensitivity lets me feel so much delight when listening to a new favorite song. I love the hyper focus when I’m spending time with a special interest or the joy in which my autistic friends and I share our special interests with each other.
It’s been 3+ years since my Autism + ADHD diagnosis and I’m still learning new things about my neurodivergence, needs and ways I can support myself. I love the saying “if you’ve met one autistic, you’ve still just met one autistic” because every autistic is different. My journey of coming home to my autistic self will likely look a lot different than yours, just as the support and accommodations I need might look different than yours. But I do believe that showing up for ourselves with compassion, grace and kindness can be so supportive as we come home to our neurodivergence and authentic selves. Wherever you’re at in your own journey, I hope you can be so kind to yourself. May you know deeply how worthy you are and how important your needs are. I hope you find small and big ways to celebrate each small step you take and to always make space for the most delicious autistic joy.
Much love,
Tiffany
Notes & resources:
Grateful to Dr. Megan Neff of Neurodivergent Insights for speaking on the connecting between being invalidated for our sensory needs and a lack of self trust which I learned about in their talk “Sensory Awareness and Self Advocacy.”
I learned about the concept of designing your own manual for your neurodivergence (specifically in the context of designing a manual that works with your interest based nervous system) in the workbook “Interest Based Nervous System and ADHD” by Dr. Megan Neff of Neurodivergent Insights. As part of designing our own manuals, it can be super important to learn about our unique nervous systems, such as the neurodivergent nervous system and the interest based nervous system. The above links are blog posts written by Dr. Megan Neff of Neurodivergent Insights and I also highly recommend her workbooks on the above topics.
Thank you for reading!
I hope this blog post was supportive. If you’d like to share a bit about your experience with realizing that you’re autistic later in life-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 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 somatic coach who works with queer and autistic clients. She works with clients in her program The Autistic Mentorship and in Coming Home. Tiffany also writes a free newsletter on Substack called The Queer Autistic Newsletter.