When my Mother died it broke my heart in ways that I will never be properly able to explain in words. I came out of my paralyzing grief a different person. Make no mistake, I am still grieving. I will always have this new knowledge of this thing called grief. I do not believe the pain will ever leave me.
It is difficult for anyone to lose a parent. Especially when it is too early, too quickly, unexpectedly, unexplained, and sudden. But for a person on the spectrum, grief takes on a whole other meaning. I cannot be sure, as I am Autistic. But It seems as though we process emotions and loss differently. I cannot know what it is to grieve and not be Autistic. I can only assume my experience of grief is different because it appears as though it may be.
Through my grief of losing my mother I heard often, “take all the time you need.” But my grief was debilitating. My grief, in part, ruined my marriage. It ended my career. I was for all intents and purposes paralyzed by my grief. There seemed to be no end in sight to the pain. And I am not entirely sure how close to death I was myself. I do not say this lightly nor for the sake of being dramatic. It is merely my perceived experience.
I was diagnosed with PTSD before I was diagnosed with Autism. I am quite sure I do indeed have both. I was raised by my mother who I am convinced was also Autistic. She suffered in the same way I do. She saw the world very similarly as I do and she was also deeply traumatized by the world. She suffered sexual violence both as a child and an adult. She was marked, attacked, and brutalized. This in turn caused her to become hard. She was tough as nails. I only ever saw her cry once. Her rage meltdowns were immense and uncontrolled. She was in many ways, out of control. As an Autistic adult I finally understand the myriad of challenges my mother faced as a traumatized Autistic adult. She struggled in almost the exact same ways that I do. Except that through her rage meltdowns I learned to self harm because my mother hurt others, including me.
It is difficult for me to write about my mother. It is difficult because I love her so immensely. But also because if I am to share her truth I must also share how she was abusive. And I absolutely do not share this from a desire for sympathy because I do not need sympathy. I am finally at a place where I can talk freely about my life and all I have been through but that also means I must prepare you, fine reader, for the stark and often brutal truth that was the life of my mother and I.
I have been working long and hard in therapy and in my own ways to overcome the trauma of what I went through as a child raised by a single mother who did not know she was traumatized (with PTSD) or Autistic. I was the receiving end of all of her pain, rage meltdowns, and deflection. She struggled so intensely to remain in control of her own life it turned her into a controlling, domineering, and abusive person. But I was aware enough as a small child to see the pain her actions caused, both in her and in the people she hurt, and I learned very young to try really hard not to make the same mistakes she did.
She always felt bad after a rage episode. She always did what she could, (without the words needed) to make up for it. In the same way I can relate to how I feel after I have a panic attack or meltdown in front of someone I love. For I truly lack the control to be able to mitigate my actions to ensure they don’t harm myself or the people near and dear to me. From this observation I believe my mother was very much like myself in that she absolutely could not help her reactions to stimuli, sensory information, or change. She also couldn’t seem to eat properly for her self or her daughter (me). She lacked theory of mind, attachment, and even gave my sister up for adoption at the age of nine. I did not meet her again until I was in my late twenties.
I could never understand before I knew about Autism how a mother could give up a daughter. It seemed incomprehensible. Society tells us that mother’s must act a certain way (at least in the US). We are shown stories in the movies and on TV about these women that martyr themselves for the sake of their children. We are led to believe that a Mother always comes second to her child. And yet in my experience my Mother’s needs always came first. I had a ton of empathy as a child. To the point where I carried my Mother’s struggle as if it were my own. I learned to put my needs second to the storm that raged within her.
And now that storm has been silenced. She has died. She never received the help I know would have helped her because I am now receiving this support. I can see clearly why her rage and sensory issues incapacitated her. I can even understand through all the pain why she could not be the mother my sister and I so desperately needed. I survived my mothers death like I survived my mothers life. And I am not sure how close to actually not surviving I was.
My Mother died thirty days into my new marriage. I was married to a very emotionally abusive man although at the time I did not realize this. I fell apart when my Mother died. At the time I was managing a landscaping company on Martha’s Vineyard. I was responsible at the time for overseeing eight estates and the company’s employees. It become very clear after two weeks that I could no longer perform the skills required for my job. My boss had to delineate my work across four employees to make it through the season. I have not been able to work since this happened in 2014. My husband tried to support me but we were freshly married. We had not built enough of a relationship prior to this because we were Christian and eloped on the advice of our local Christian community so we would not live in sin. When my mother died thirty days later we did not have enough knowledge about each other to maintain a healthy marriage and things quickly deteriorated. I was in an inpatient facility eight months later and he was texting me for a divorce.
Of course, during all of this I did not know I was Autistic as well as traumatized. I thought my panic and overwhelm was merely a result of growing up in a toxic and abusive household. Now that I do know about my Autism I think I would have been better able to stave off meltdowns. I also see that burying my mother and dealing with local and town officials became my “special interest.” I went through all of my mother’s belongings, every single piece of paper, trying to piece together the story of my mother’s life because she had always remained an enigma to me. Why was she this way? What was wrong with her? What happened to her to make her so abusive?
I found paperwork from the court when her door was broken down by a neighbor and she was physically assaulted. I found her diaries speaking about her mother dying at the age of 14 and how she was in a Catholic school for girls in rehab shortly after. She was pregnant with my sister by the age of sixteen. And as she came from a Catholic family they had her marry the father who was in his twenties. Looking back I think her family failed her and each other. I think the system failed her, but this was the seventies and her family was poor and there were six kids.
She was then left on her own to raise her baby, which she discovered very quickly she was unable to do. I believe my mother had sensory issues the same way I do. I have to wear ear muffs when I am out so that I am not overwhelmed by all that I hear. My mother was also this way as I can remember her responses to crowds and busy places was to cover her ears, grab my hand too tight, or hide in the bathroom for what felt like hours. This hiding in the bathroom also became a coping skill I used in jobs to reintegrate my senses. Until I learned about Autism though, I just assumed I must be crazy, and had no idea I actually perceived sound differently than my Allistic (not Autistic) coworkers, or peers.
I remember one such event where my Mom had been in the bathroom for so long while my friends and she were out to dinner. A friend of mine went to find her and found her wide eyed, sniffling in the bathroom. Because her behavior was so alarming my friend thought she had been doing drugs. I know that my mother absolutely hated drugs and did not do them. I think what my friend witnessed was a sensory meltdown and my Mom was trying to hide it from us. This is also what I do now. I get wide eyed stares just like my Mom did when I am overwhelmed.
When I think back on this my heart breaks again for my mother. I am in speech therapy, occupational therapy, I have a behavior therapist, a primary care doctor and a case worker all helping me navigate my recent diagnosis of Autism. In addition I have Ulcerative Colitis, Pancreatitis, Lyme Disease, and PTSD. PTSD alone can cause a multitude of stress related physical and mental ailments but combine all of these and I am incapacitated by my mind and body. I see now at 35 that I am struggling in the exact same way as my mother. Except she had none of these supports in place.
She grew more and more isolated. She lost family by shutting them out. She left me at the age of 17 and she died homeless, jobless, with a small network of friends keeping her aloft, while none of them knew anything about Autism or why my Mom had no family to speak of.
I speak, I write, and I advocate, because of the strength I learned through helping my mother and myself. I advocate for other women like us on the spectrum because I do not want to see one more Autistic girl thrown out into the world unaware that she has a different perception of the world. I never want one more little girl to be ostracized, shamed, bullied, attacked, raped, molested, or abused. I want to use my story not to illicit sadness, sympathy, or pity. I want to use my story to show those in charge what a great disservice they are doing to Autistic women and girls by not noticing early they are on the spectrum. Something needs to change and it needs to change immediately.
Autistic people already have enough challenges, no matter where they are on the spectrum, to also have to navigate PTSD is just inexcusable. I am convinced that if my mother and I had one school administrator, teacher, or counselor notice that we needed help in our school years, maybe we would have received it.
I cannot change the past. But I can damn well make sure that no other Autistic child has the kind of life my Mother and I were forced to have while Autistic and undiagnosed in this world not made for us.
My grief may be paralyzing but I am determined to turn that grief into fodder for the fire within me to change a system that has let down so many Autistic females, left to navigate social situations, and even dangerous situations completely unaware of their differences. This then leads to a lifetime of confusion and abuse and in many cases even PTSD, not to mention the bodies reaction to this kind of stress where inflammatory illnesses abound. Something needs to change. I am determined to use my story to help make that happen.
-Angel Marie Russell