The Autism Mother Letters: ๐ #1
"Hello, It's Me" A Letter To My Fellow Moms Raising Autistic Kids
Welcome
Hello! Iโm Emily Lupita. Iโm a travel writer & artist from rural Iowa currently living between my hometown south of Des Moines - and Ankara, the capital of Turkiye. Iโm also an English teacher & editor.
The Autism Mother Letters is a series of illustrated letters ๐ written to my fellow Moms raising Autistic kids on - Emily Lupita Explores - my creativity journal where I share โexplorations from my art desk & cultural travels, as well as motherhood with my two Autistic sons.
๐ #1 โHello, Itโs Me.โ
Dear Mama,
My mission with this letter series is to reach out to my fellow Moms raising Autistic kids. I hope by sharing my story, you will see that you are not alone.
My two sons are both Autistic. Archie, now age 6, is diagnosed with level 2 ASD, and Charlie, now age 9, is diagnosed with level 3 ASD. (You can read about the signs and symptoms of Autism Spectrum Disorder [ASD] on the CDCโs website.)
Both Charlie and Archie have been in therapy and under a doctorโs care since they were 18 months old (the earliest diagnosis possible at the time) and are legally classified as intellectually disabled.
Itโs emotional for me to write about my boys. I tried writing these letters last year, but it didnโt feel good so I stopped and went silent instead, which didnโt feel right either. Iโm beginning again. Iโd like to start off by simply saying, Hello, Itโs Me - and offer you my thoughts on starting again.
My Concerns
My concerns are that thereโs so much dissonance and in-fighting within the neurodivergent / special needs / Autism community. (I donโt even know what to call my own community without feeling like I might elicit negative feedback regardless of the word I end up using.) There are strong disagreements about word choice - especially severe, profound, low functioning, high need, etc.
Iโm not focused on this part of advocacy at the moment but I understand others are and that itโs important. Itโs not my mission right now, but I do have my own mission that is equally as important. I respect and follow many women who advocate like a mother in many different ways- and I hope you will, too. Iโm keeping my current mission very specific because this is how I think I can best support others in the long term.
This is a social topic with fierce feelings - and Iโm not equipped emotionally for the influx of negativity that eventually comes whenever I tell my honest truth about what raising two Autistic children is like for me - my own story. I donโt have the emotional buffer to confront this type of intense critique about my little family right now. Iโm not perfect, but Iโm doing the best I can. Iโm doing more than I ever thought I was capable of to love and support my boys. Thatโs all anyone can do. I am human, too.
Iโm not going to get into it deep (at the moment) about diagnostic levels of Autism or classification terms of Autism used for insurance purposes or the required medical process all children (and their parents) in the United States must endure to get an officially recognized diagnosis that will give our children the resources they need. Although I know these processes intimately - and these discussions are necessary - to understand the bigger picture of what families face when their child is diagnosed with Autism. I will leave links - lots of links.
Iโve written about my Autism journey before and strangers feel they can say the most incredibly horrible things about my precious children. (Things like - they should die or be locked away - really awful stuff you canโt imagine anyone would ever say.) I want to protect my boys. Why would I subject us to this? Because staying silent does not work for me anymore. I will have to block this time - lots of blocking.
This time I want my journey of writing my motherhood story to be a marathon. Not a sprint. These are my boundaries for stepping back outside into the light with my story in hand. These boundaries are what will allow me to keep goingโฆto keep using my voice to tell my story. My story matters. Yours does, too.
Where I Stand
I believe my two sons are the biggest blessings of my life. I believe to my core that Charlie & Archie have been created as they were meant to be created - and it is our society that needs to change so that they are appropriately and respectfully valued for their unique gifts.
Anyone who wants to tell me that โmy children are a curse from Godโ โฆ
You can go straight to hell in a handbasket. ๐งบ
(Yes, multiple people have suggested this โฌ๏ธ to meโฆstay tunedโฆIโll tell you about it.)
Do I believe Autism is a superpower? Well, for my Archie, yes, actually - yes I do. I think as he gets older, his intelligence and creativity will become aspects of Autism that he can use as a superpower - if heโs supported. With the proper accommodations, I think Archieโs unique perspective and talents will enable him to give incredible gifts to the world, just as (I believe) many talented Autistic / neurodivergent humans have done throughout history.
But for my Charlie - no. Autism is not a superpower for Charlie. Not yet. Maybe never - I donโt know. Charlie is severely disabled and unable to participate fully in society or fully in his own childhood because of the limits of his Autism.
Maybe he will come to find a superpower within his abilities, I hope so. Thatโs what weโre working so hard to offer him - the support he needs to find his own special way to make his own unique and irreplaceable contribution once he becomes an adult. Charlieโs having an amazing childhood - he seems so happy and joyful - except when he has a meltdown or elopes.
Right now, at age 9, I have to be honest with you and say that I feel Charlieโs Autism is devastating. As his mother - for me - it has been heartbreaking to see him suffer (emotional dysregulation, self-injury, communication frustrations, safety issues, elopement, and many other challenges.)
And before anyone jumps up ๐๐ผโโ๏ธ to suggest this means I donโt love my more profoundly Autistic son - anyone who knows me - knows that I love them both with a fierceness reserved only for these two precious souls.
They are the stars in my sky. ๐ ๐
Iโm far from the only one with this experience - read more stories on the National Council on Severe Autism. One day I hope I can ask Charlie how he feels about all this - right now his communication level doesnโt allow for that type of understanding between us.
I can only guess what Charlie thinks because he canโt tell me.
What I CAN do - is speak up for him until he has his own voice.
A Big Change Going Forward
The big change since I last tried to write these letters is that I have also been diagnosed as neurodivergent /AuAdhd. Things make so much more sense now.
Itโs a thing - this article published in the National Library of Medicine - National Institute for Health - states that โ50 to 70% of individuals with autism spectrum disorder (ASD) also present with comorbid attention deficit hyperactivity disorder (ADHD).โ
I got into a research deep dive (hyper-focus, anyone?) and ended up reading this article, also in the National Library of Medicine that states, โThe authors conclude that motherhood in autistic women is a neglected area of research and more work is needed to further understand any unique challenges that autistic mothers may face.โ
So here I am.
Hello, itโs me - a neurodivergent mother of neurodivergent children. Iโm here to tell my story so that my fellow mothers raising ADHD / neurodivergent / Autistic children know - you are not alone. You. Are. Not. Alone.
Love from one ๐ mother to another,
Iโd love to hear your ideas. Please share your thoughts with me in the comments.
๐ฆ News & Creative Projects
Iโm back on social media: Instagram: @EmilyLupitaExplores and Facebook here.
Vote for your favorite & read more about my current projects in progress here.
New! Read about my project plan for this newsletterโs third year (2024-25).
Check out my books on Amazon by searching my author name - here.
New Art Shop (yay!!): My new Lupita artwork shop is now open on Threadless - Iโll be adding more to it each week - here: emilylupitaexplores.threadless.com
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โค๏ธโ๐ฅ
This is thoughtful and emotionally resonant at the same time. Very interesting.
Thank you for your letter!
I'm not a parent. I'm a white cis-hetero male Autistic adult that only accepted I'm autistic in my 50's. I never had a chance to speak with my own parents about these things, as they died before that acceptance.
Your letter writing may be to other mothers, but I suspect your sons will learn much from them as they get older.
I was confused by the controvercies within the community. I recently read "I Will Die On This Hill: Autistic Adults, Autism Parents, and the Children Who Deserve a Better World" by Meghan Ashburn and Jules Edwards.
This helped me understand the dynamic better.
https://mcormond.blogspot.com/2024/07/autistic-adults-and-parents.html
Hope this helps.