Questions We Ask Ourselves

I collected common themes from the material in the Resources I found. Not super scientific but it was helpful for me to collect data, synthesize, and then summarize my own experiences against the results.

Since I wrote this, I have come across a dissertation that confirmed many of these themes. (Experiences of Neurotypical Adults Raised by Parents with Asperger’s Syndrome: A Qualitative Study)

I hope this list might help you process some thoughts/ feelings/ experiences.


 

Some NT offspring of AS parents have grown up feeling unloved, that their parents were not able to tune in to their needs and their feelings. As children, they blamed themselves for a disconnect between them and their parents. Often as adults they have continued to suffer from the lack they experienced in childhood.

  • Reasoning, pleading, explaining did nothing to sway her my way or to help her understand me as her child, a person. I would often try to use empathetic arguments to get her to feel something, anything but I didn’t realize how futile that was at the time. I am your child, I love you. Whether she loved me or not, she couldn’t or didn’t express that to me. I grew up feeling like I had to over explain everything and it felt exhausting to complete an emotional marathon with my mom and not even get a ribbon for effort. I questioned my ability to express myself and so I stopped doing so. I started coming across as mysterious and that gave me power in other areas of my life. I kept my feelings to myself because I was done running emotional marathons. I would like like to start again though, with others who can run alongside me. Not like her, who sat at the finish line, only to trip me.

AS parents have obsessions that overshadowed everything else.

  • She was obsessed with school, becoming an eternal student. She seemed stuck in a period of her life that she can’t stop replaying. She never went to college, instead getting married and having children. My mom was obsessed with me earning a high GPA but then sabotaged me when it was time to go to college. Was she obsessed with rewriting the story of her life? Had her obsession become mine? I hang onto who I was in highschool, before the rape, before she ruined my chances of going to college. Did she not allow me to go to college because she was never able to? Was she always watching my progress, resenting it, then preventing me from striding past her?

AS parents do not like to socialize.

  • Since she had limited need to socialize, she did not recognize my need to socialize, which was strong. I was starved for interaction from living in a sterile home. I was depressed and isolated, emotionally and mentally abused. I knew that I deserved better and that I was worth more that what was handed to me. I knew the outside world held such things. My need was so desperate that I pushed through panic attacks and the risk of being grounded and humiliated to make friends, who would become my anchors. They would save me from being swept out to sea.

Some people with Aspergers/ advocates for Aspergers get offended/ defensive about the stories NT children of Asperger parents tell. They say that there are good Aspie parents out there and bad NT parents too, that it has nothing to do with the spectrum.

  • My life would be different if my mom did not have Aspergers. Both of our lives would have been different if she had been diagnosed. Unfortunately, in our case, there was no diagnosis or treatment at that time. In fact, she had a pretty terrible childhood which no doubt emotionally crippled her regardless of her Aspergers. But the truth is that she did have it and it affected me in a way that was different than having an NT abusive parent. There is something different about not feeling any emotion from your mom, the person who birthed you. To not have her hug me or say she loved me. All physical chaos aside of the moving and the kidnapping and the divorces/ marriages…. I was always denied the most basic thing a child should feel, and that was to be loved (even fleetingly) by their mom. She was right there, in front of me, but looking past me, never at me. I begged her to love me, I tried to perfect myself for her because maybe that would make her love me. I still reach out to her every year or two, trying to reconnect. I have done research on Asperger parents since the day she told me. I have tried, and tried, and tried. If you tell me there are good Aspie parents, I believe you. But I didn’t get one, and I have every right to tell my story so I can heal and find commonality with others. I have found that the only thing keeping me going and believing in this life, is love for one another. We can only love one another if we love ourselves. We can only love ourselves if we share who we are with others. It’s taken me a long time to step out of my solitary cell and into this labyrinth of life. But I am here, I hope we can listen to each other, walk with each other.  

NT children are not the cause of their own depression, loneliness, sorrow, grief.

  • There is much guilt associated with feeling like I was a failure of a child. To feel like I tried my best and it was met with aggression and apathy made me feel like a failure in every way. Even when I intellectually knew the truth, emotionally it was hard to work past. The doubt became a soft whisper, a paranoid monster who tried to undermine every accomplishment and success. It played with emotions, it’s fingers razor blades against harp strings, hammers against piano keys. It’s easy to tuck these emotions away and put on a brave face, smile and interact with the world because we are also strong. But they will begin to rot eventually, in that dark hiding place. A thousand scented candles can’t cover up that smell, you must purge yourself of it.  

Thank you for saying it’s OK for me to open my mouth and speak, and expect to be heard, to be visible to other people.It’s OK to expect, to require, something for myself in my relationships.

  • I was shy for many years but ended up making friends, finding my voice. I have always been a giver, but I have learned to hold back, expect things in return. I don’t get into serious/ close relationships often, friends or dating, because I have become cautious of finding a balance. It feels complex because I am needy yet distant. A giver, and not able to take. When others offer me something it makes me react outside of a normal scope. With friends, I get self conscious and am tentative of our friendship. With relationships, if someone starts to give to me, I become suspect and uncomfortable because I feel like there is a motive behind it. I’m still working through this. I’m learning to identify real exchanges of interest and love, I see it like a pinpoint of light at the end of a dark tunnel.

NT children have a feeling of invisibility and of having no voice.

  • It’s a challenge to feel validated after spending a majority of my life feeling invalidated. I tell my therapist things I have never told anyone else. I minimized many of my experiences for decades and saying them out loud is shocking to me, and at times, him. These confessions tumble out of my mouth, like yahtzee dice. They rattle and land, and I have to look down to see what shook out.

The fear of rocking the boat or of being called selfish for talking about yourself and how you feel may be deeply ingrained.

  • I feel this the most at work. It’s twisted and embarrassing to admit. But the hierarchy at work is the most like a parent/ child relationship. We seek validation and feedback. We work on rewards and accomplishments. We look to our managers to develop our skills, provide guidance, help us grow. I am recognizing that I am too tentative sometimes, and that cripples my growth. I see men, women who do not have this struggle. Who have less qualifications, but who have a knack for playing the corporate chutes-and-ladders game. I have never been that way. Instead, I build relationships with my clients who build the products that I care about. I focus on finding people the jobs they will love. I help build our LGBTQ community within the workplace because it took me a long time to come out, and it was a safe space for me to develop and grow. They understand the challenges of being gay in the workplace, how we are often overlooked because we don’t fit the heteronormative world. I wish I could be more selfish here but then again, it might be more meaningful to direct this towards friendships, potential relationships. Writing my memoir is the most selfish thing I have ever done and it feels amazing to do so after years of holding back. I was afraid of sounding self indulgent, like a complainer. But I realized that I stayed afloat for so long because of other people sharing their stories with me. It’s not selfish, it’s human.

In their early lives their thoughts and feelings weren’t acknowledged so the ability to develop healthy relationships later in life was stunted.They don’t expect to be heard. They don’t expect to be understood. They have no frame of reference for it. And though they don’t have the Asperger’s neurological profile, some never learned how to fully express and receive love and affection for those around them, and so the ripples of isolation spread.

  • I thought I might have Aspergers for awhile because of my mannerisms, my matter-of-factness, my ability to assess and execute while keeping a cool head. Then I thought, maybe I am this way because I am gay. A stone cold butch. More like a guy. It could be all of these things.

Cannot read the child’s emotional state and needs, including an infant who does not yet have a language?

  • My mom told me she didn’t know what to do when I cried. She would look at me as I cried in my crib, and not know what to do, could not understand that I was in distress or what I needed. So she would leave me there.

Cannot switch instantly from one situation to another and respond immediately to the child’s needs?

  • She would become impatient and irritated. Like the time I was trying to wash out the crisco from my hair after halloween. Even though she was the one who had put it in there, I felt ashamed like I had done something wrong. If I didn’t exist, then she would not have to be dealing with a situation that frustrated her so. Because I had a fun night, she was now miserable and angry. I associated her negative reactions with my own needs and started to negate what I needed if it meant keeping her from distress.

Has difficulty in appropriate physical contact?

  • At holidays, I would try not to flinch when she put her hand on my shoulder as she talked to relatives, told them about my good grades. Her hand felt strange on my skin, my name sounded foreign and exotic when she said it out loud. I pushed record in my mind so I could replay this moment later, over and over, until the ribbon would wear thin.

Cannot distinguish or check whether the child is in danger, sad, tired, scared, lonely, happy, in crisis?

  • As evidenced by her hostile takeover of my sister and I’s childhood. The trauma never addressed, explanations never given. A declaration of “I am so happy to have you” never given. Just “If not for you kids, I would never have to deal with your father.” We were crumbling like a sandcastle at as the tide washed in, strong winds knocking our towers over.

Does not have adult impulse control over themselves, including over their own anxiety and meltdowns?

  • I don’t remember my mom at any award ceremonies, graduations, sports events, PTA meetings. She would meltdown over us not eating food she had made for us, like lima beans and chop liver, turning into full blown fights, ending with punishments.

Has difficulty organizing time, planning and carrying out practical tasks?

  • We never depended on her for grocery shopping regularly, taking us to school/ sports events. She would cook sometimes but that became sporadic, turning into a fend for yourself scenario.

Is extremely preoccupied with their own interests?

  • My mom was obsessed with computers, books and college. Little else mattered.

The emotional atmosphere at home is characterized by the AS/ASD parent’s negativity and irritability.

  • We tiptoed around the house, never knowing what would tip her off. I was always watching her for warning signs.

Asperger’s puts a damper on the other family members’ enthusiasm.

  • Accomplishments in others homes were considered meeting the bar in ours.

Forced to adapt to Asperger-parent’s intolerance to noise, spontaneity, playmates and guests, and they must endure Asperger’s black and white perception of others.

  • Between my step-dads need for quiet & privacy and my mom’s lack of understanding of socializing, I was rarely allowed to have friends over.

Learning that to attempt conversation with their AS/ASD-parent results in a monologue about the adult’s own problems.

  • Every attempt to speak with my mom ends in her speaking about her struggles and problems. She completely ignores any reference to any pain or hardships that I have suffered. Except in one email, she apologized for not holding me as a baby. She said she did love me.

Special problems that arise around the kids, if the adult relationship is dissolved by separation, and if the divorce and child custody authorities including social workers, lawyers, psychologists etc. do not have specialized experience and knowledge of the impacts on children of a parent’s autistic, invisible disorder.

  • The courts/ CPS did nothing to protect my sister and I in 1990 or 1996 despite evidence of neglect, trauma, and abuse.

Ongoing traumatic relationship syndrome (OTRS): In 1997, Families of Adults Affected by Asperger Syndrome (FAAAS) came up with the term “mirror syndrome” and later “Cassandra phenomenon” to explain the stress of living with Asperger Syndrome family members. But these terms were still too vague. Currently, FAAAS favors the term “ongoing traumatic relationship syndrome” (OTRS). They define it as “a new trauma-based syndrome, which may affect individuals who undergo chronic, repetitive psychological trauma within the context of an intimate relationship.”

  • Every day was like walking in a land mine, panic bubbling beneath the surface. It was like playing a mind game that never ends, having to stand all of the time because the chairs were covered in spikes, like being trapped in a tank with your head barely above the water line, gasping for air.

 

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