a mommy with autism, advocating for her daughters with autism
I Saved My Life and My Daughter’s Life: A Mother’s Experience With Autism Spectrum Disorder
The following text was originally a letter sent from me to my mom in the form of texts:
I was born with autism. My mom could not really hold or caress me without me retracting. I was a “fussy baby” and always had trouble sleeping and staying asleep. I had flat affect. Of my earliest memories, most were happy. But my earliest memories also include an anxiety attack at the tender age of 4 (I didn’t realize that’s what I was traumatized by until late into adulthood) and panic attacks.
I was not diagnosed with autism as a child or even as a young adult.
I could not feel the warmth and love from my parents. I could not feel warmth or goodness from anyone. I was unable.
But oh, I could see the hurt you or anyone did to me. I could see your mistakes against me. I could see when you failed against me. I didn’t know it at the time, but I did not understand social norms. Social cues. This was the source of my low self-esteem and debilitating anxiety. Feelings of rejection, aloneness, and confusion.
A child who cannot deeply feel warmth or love will develop a very low self-esteem. Will feel alone and abandoned. Unfailingly rejected. No sense of self-worth.
I believe it is by the grace of God that I survived so long. Who can live feeling alone and abandoned while they had a family around them? I was not literally abandoned. But I felt like I was. I wasn’t able to put the word “abandoned” to it at those young ages, but in retrospect I believe that’s the best word for it.
I discovered I was good at school, probably as soon as kindergarten and first grade. And succeeding there gave me the only shred of self-worth I had. I identified myself as only a good student. When I went to undergrad and school was hard I lost my whole identity. I was garbage now because I failed at my one thing I clung to.
It was during undergrad that I was first confronted with depression. Proverbial small fish in the big pond. I tried to quit and go home, but I was richly supported. I was able to manage my depression with exercise.
It is by the grace of God that I met Al. I was so sure I would never be compatible with anyone. And I was so content to be alone with my integrity than to desperately cling to a random man. With Al I had and continue to have a profound connection. Unshakable loyalty, seemingly infinite patience, funnest times of my life, and parenting compatibility.
By the grace of God I had children! I didn’t even think I ever would! Watching my first child BumbleBee grow up was illuminating. As she developed I could not help but notice what she was lacking. Of course I love my baby just the way she is. She is perfect in her mother’s eyes. But, as a professional, as someone who had the privilege of studying childhood development, I just knew something was missing.
Next we had K, our neuro-typical daughter. She is the sunshine of our family, and the little mama to her older sister in addition to her baby sister.
Thirdly, we had baby girl Yaya. A surprise by all accounts. When Yaya turned one, she became the most difficult child for me. I simply could not help her or soothe her in a profound way, beyond the surface. We struggled to get her a diagnosis, but at about age 2 and a half years we got her autism diagnosis.
BumbleBee grew up and hit third grade. It became clear she was not thriving. Way too much anxiety, and difficulty at home and school. The details will remain private, but suffice it to say she was not thriving. My daughter was not living she was merely existing. Floating around without an anchor and unattached to us.
This just so happened to be when we were living in my sister’s house. We were between homes. Living in a new city. Al was commuting. Girls were in new schools. The house was so full of family. And then COVID-19 hit the world. We were amidst a global pandemic.
We learned BumbleBee has ADHD-inattentive and autism too. During my autism studies for my daughters, I picked up this precious jewel: The hardest part about having autism AND ADHD-inattentive is the anxiety it produces. That’s the hardest part.
I saw my daughter’s behavior. These were not attention-seeking behaviors. She was struggling with something profound. And achingly familiar.
Sometime after this, I don’t know exactly when, it just clicked. I am BumbleBee. BumbleBee is me. This is how I was when I was a kid. She also didn’t feel my warmth. She did not see the kind things we do for her. She only saw my frustration with her. She recoiled when I try to caress her.
I believe, I assert, that BumbleBee and I did this because of an inability to develop self-worth. Undiagnosed high-functioning autism stole these essential rites of passage from us. Robbed us from developing a profound and healthy sense of self.
Why would a child with privilege and comfort and resources and otherwise good health feel this way? Why would they be so low? Because of the trauma. Because they have internalized shame. They have a sickness in their mind. Their brain is betraying them. They have an invisible illness.
My daughters have invisible illness. They have invisible disability.
This mother’s trials and tribulations on behalf of her daughters unearthed a diagnosis for herself.
I have invisible illness. I have invisible disability. I have autism spectrum disorder. I have ALWAYS had these. I was born with high-functioning autism.
High-functioning autism does not look like “textbook” autism. At least not to the typical layman. It does not look like what has been historically studied and researched and presented as autism. I believe in the future science will be better at identifying autism in girls. And identifying autism in folks who are high functioning.
Because folks with high functioning autism experience some of the worst, most pervasive anxiety you can imagine. I bet it makes a lot of folks depressed. I assert that many may have been carrying the painful weight I was carrying and still do not know it.
My God. I was liberated from my burden. From the pebble I was holding on my back since I was born. That matured into a boulder as I aged. Once I married. Once I had children. Then exponentially when I had a child with special needs. Then not one but two. And another typical child. I was carrying the weight, a boulder the size of a mountain. I have super human strength. I am exceptional. I am not garbage. I am awesome! I am a good mom. I am doing something HARD. And I’m good at it!
I have an invisible disability and I am doing things that are difficult for typical folks, typical parents.
I have an invisible disability. I have autism and ADHD-inattentive. These two things I was born with give me anxiety. I had so much anxiety, from such a young age that I didn’t even know it. Anxiety is all I know. It is my existence. The tremendous anxiety is connected to my depression. I wasn’t depressed for no reason. I have an invisible illness that gave me anxiety and depression. Depression that was likely on its way to killing me. It is with great seriousness and spirit of advocacy that I admit this taboo to you. It is difficult to discuss in this uncertain climate, but autism makes it easy for me: I was not thriving, I was not living, I was merely existing and waiting to die. I was probably on the road to exercising my ability to facilitate my death.
I had an invisible disability my whole life. I struggled with it without help. Medication. Tools. Without even knowing the name of what I was suffering from.
I hurt a lot as a kid but I looked typical. I looked healthy. But I was in hell inside my body.
This revelation made me a new person. I’m not the old Mama Tine. I am a brand new person. Immediately I felt a surge of energy. The boulder was lifted. I miracle happened inside my mind, body, and soul.
My posture changed. I did not want to sleep all day and abuse food. My children couldn’t believe their mommy was off the couch. I played and played with them. I was up before them and the last to sleep in the house.
Immediately, I was thrust into the proverbial “pocket.” I could not stop writing. My ADHD was no longer my enemy. In my mind I could see all the thoughts I wanted to write and my ADHD was my superpower. My autism gave me steely conviction and an infallible moral compass. I can’t do harm when I am as honest as pure light. I don’t have a filter. My intentions are pure. I am eloquent and empathic. Autism is truly my gift and super power.
(Okay take it down a notch, Mama Tine. I am human and rife with flaws. But if you know someone with autism, you probably get what I mean.)
When the boulder of pain left my body, the shame and anxiety as result of my lifelong trauma dissipated too. When it clicked in my mind body and soul that I have high functioning autism, I was freed from the oppressive pain that is shame and anxiety.
My struggle and drive for my children saved my life. I believe I have saved their lives, since I am now equipped with the tools, science, and resources to ensure my neurodiverse children will THRIVE. They will not shoulder the confusing pain their mother carried. They will point to their disability with understanding and even pride. The chant in our home is, my brain is different not broken!
Here I am now, with big eyes for the world. I want to inspire, advocate, and offer relief. I can’t be the first to have these feelings or life experiences. But in my ten years of parenting and existing in the social media space, I have never heard anyone else mutter these words. Or narrate a life story that was similar to mine and my kids’.
I want to be the loud, warm voice. I want to prevent every ounce of pain possible. Parents unable to connect with their children. Folks with autism who might be undiagnosed or struggling with diagnoses and comorbidity and uncertainty.
I can’t shut the door behind myself. So I learned how to set up a blog and spent the money on a domain. This is me extending my hand back and pulling you, dear reader, up.
Please explore my blog, where I intend to expand on my story. And share resources, engage with you, and stand up for autism.