Children's perception of AS parents

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I'm thinking of maybe writing a children's book about having an AS parent, because all the books I've found to explain AS to kids focus on a child with AS, not an adult.
But I'm wondering what a child raised by an AS parent would notice about their parent. I'm thinking of writing for both AS and NT kids. If any of you are AS parents, have your kids asked you any questions about your AS traits? If you had an AS parent, do you remember wondering anything about why your parent acted the way they did?

My daughter wonders why I sometimes zone out and don't react when she is talking to me. I feel horribly guilty about it, yet I have little control over it. I've explained it as bad hearing. Sometimes when I find it hard to talk, I can still cuddle her, which helps. I'd buy a book like that.

The Norwegian author Gro Dahle, who has Aspergers, has written several children's books in a similar vein, although as far as I know she hasn't written about Aspergers specifically. The books are pretty dark, aimed at kids growing up in families with serious problems. There is one about growing up with a father who is violent, and another about a mother with mental health problems, where the mother's tangled hair symbolizes her tangled thoughts:

https://www.cappelendamm.no/_barn-og-un ... 8202269807

Also divorce, alcoholism, pets dying. Most of these books I wouldn't read for my kid, because there is no point in scaring her with problems she doesn't have. However, those books are rather fabulous for kids who are going thorough something difficult, because they very consistently take the child's perspective and recognize that some kids deal with horrible things at a very early stage in their life.

It might be useful to try to strike a lighter note, though.

This is from a now 50 yr old diagnosed at age 3 in the 60s. The first diagnosis was like schitzophrenia or something. There was worry of brain damage because I had contracted both scarlet fever and rheumatic fever by that time as well as having had Measles and mumps. (no telling where my mom was dragging me to catch all that in Miami) My father did not accept this. We went overseas in 1968. I had a secondary confirmation of diagnosis in 1974 as well as an IQ test that I scored well on.
Asperger's runs in my mom's paternal side. My Grandfather and Uncles with it are all successful as Math Professors and engineers but quar as F. The uncles were diagnosed as adults in the 80s. My grandfather was diagnosed while in a recovery home after stroke. My mom was not formally diagnosed until very late in life. The years have not really improved her much except reading comprehension and better empathy. And she likely had/has other things with the condition and they are thinking to change it to Moderate Autism. But presently she is considered AS.

As a young child my mother was more like having your weird teen uncle to babysit you than any nurturing figure of security. I despised her from age 6 til I was at least 13-14. At that time I simply accepted that her condition was not something she could just "snap out " of. She was math genius, machinist and musician but totally illiterate til well over 40. She freaked at being touched especially if no warning, she was possessive of her space but a total mess everywhere else. She enjoyed infants but was uninterested in children over 4. Me included. She seemed narcissistic and whimsical and mercurial. Her hobbies she would OCD concentrate on. I had an affectionate phase that I stopped offering to her after a couple years. Though I understood once I got older, I too feel like my heart will flip and I'm being joke buzzered when held too long, I had been conditioned to tolerate touch as what it stood for; connection. My Dad was mom, dad, tutor, advocate and provider. After a few stings of rejection I simply excluded her.

My perception as a child was she couldn't be trusted to take care of anything, that she could be instant good at something but only if she tried. She didn't like people much. She would never read. I'd always have to take care of her. I learned sarcasm because she couldn't, it was a way to be snarky. But I still miss dry comments myself very often . I am too literal.
I am not sure how a NT child would have handled it at all in my era of childhood. My feelings were often pragmatic and disassociated. So I didn't feel crushed at her rejection except when really little , only annoyed. Dad said she couldn't help it and called her a savant and said she loved me inside. My sister is 20 years younger and a train wreck, she is NT and I suspect part of her problems are home not just regional environment. Her dad was not involved and I was not always near, but most is guess without her being in therapy or something.

Because of her, I schooled myself for my own kids. I was considered overprotective broody hen when they were little and overexpectant as they were older (for making a 7 yr old clean up after her dog and feed it after school. and sort her laundry to throw down chute). All 3 are on spectrum though my middle child is not formally diagnosed. His father refused to allow it (as in said he'd kill me). The fathers of the youngest and 2 oldest have 1st cousins diagnosed in severe spectrum side of Autism and both had learning disabilities growing up as well as even physical ones (back brace for 1 and leg brace with PT for 2). How.... just how did I pick a genetic bad direction twice as mate? No telling. My now adult older kids have no negative memoirs of me other than the marriage breakdown. And that I was rigid planner and neat freak. They thought that was me being catholic. It was excruciating on the inside.. I am glad I handed no phobias down. I wish I could have showed them a stable relationship to model on.
But I only had control of half that equation.

Well, this is what I've told mine so far that seems to have worked:

"Mommy can't really hear you when you yell or talk right in my face. My ears hear you, but my brain doesn't." Auditory hypersensitivity.

"Too close hurts right now. Sit beside me, not on top of me, and I'll put my arm around you." Tactile defensiveness.

"Mommy can do two things at a time. Right now I'm [cooking] and [talking to Daddy]. You have to wait your turn." Non-multitasking. Caveat: they have to get their turn within a reasonable length of time, whichever task that means you have to put down. And you can't use it if someone's bleeding, sobbing, missing, doing something dangerous...

"Mommy can't hostess a birthday party. I don't know how. I can't talk to that many people at once. I feel like you do when you've had a bad dream. We can invite a few of your little friends for a sleepover, but Mommy can't do inviting your whole class to Chuck E. Cheese."

Very specific things. I don't try to explain autism as a concept until they hit puberty. So far, so good.

Something I have told them that I DON'T recommend, that I regret and will try very hard not to say again (even if it might be true, or sure feels true sometimes), is that I'm often sad and tired for days at a time because I have this monster or terrible disease in my brain that makes me unacceptable and bad if I don't keep it hidden, so I have to hide it and fight it all the time and that makes me tired and sad and angry.

That's not something I'd EVER tell them about themselves if one of them turns out to have it.

That's not something I'd want them to tell their kids if one of them turns out to have it. I'd probably lose it on them if they told my grandbabies that.

It's sure not something I'd want them to say to an ASD classmate (and statistically speaking, every one of them is apt to have one at some point in time).

So I shouldn't say it to, or about, myself.

Here's my point of view, growing up as a kid in a family with multigenerational autism on both sides (and very different ways of handling it).

It took me a loooong time to figure out that my maternal grandfather had it. He was deeply ashamed of being "crazy" and was bullied relentlessly by schoolmates, his mother, and 6 out of 7 siblings. I don't think his autism was really tha at severe-- he had very little noise tolerance, was very rigid about rules and behaviors, kept a schedule you could set your watch by, spoke slowly and with a terrible stutter (not necessarily an autism thing, though I see the same stutter emerging in my speech these days). He was terribly anxious and not demonstrative of affection. I don't every remember not knowing it was there, but he showed it by worrying, or making sure there was always money for the basics, or keeping things in good repair. I heard the words "I love you too" pass his lips one time in my entire life (I was 19 when he died). I went running upstairs to tell Grandma. She got down on her knees and praised God, weeping with gratitude. He would accept affectionate touch, but return it only very awkwardly and very seldom.

How much of that was autism, how much growing up in an abusive home almost totally devoid of affection, how much PTSD or OCD or some other comorbid that might have been hard wired or might have been acquired from a sh***y childhood and a lifetime of making a daily Hurculean effort to hide autism in a rejecting time in a rejecting place (he was born in 1923 and other than a stint in the Army under the Marshall Plan lived his whole life in West Virginia-- the stigma was vicious and honestly still is, and I think it was this century before they finally got around to repealing compulsory sterilization)???? I don't know. My personal theory is that the stress of abuse and the stress of hiding were a lot more damaging than the autism.

I knew a very different man from my mother and aunt. I knew him after two massive breakdowns (one in the mid-60s and one in 1982). I knew him after some very intelligent person prescribed him a very low dose of Xanax and told him to take it twice a day for the rest of his life. I knew a much happier, much more relaxed, much more affectionate man. His daughters knew a man so obsessed with fitting in that he made himself a tyrant.

I knew a very different man... He was a very good man, but he still wasn't a very happy man. I think the only places he ever felt anything approximating OK were in the mine, in the library, and fixing or cleaning stuff at home, in the church, or for someone else.


My aunt on that side always struck me as very cold, very rigid, very concerned with social convention and looking like the right kind of people. Her one deviation from that was in her choice of men. She got pregnant out of wedlock twice, both times with an African-American guy (a HUGE deal in a small WV town in the late 60s or early 70s) and then married an Indian guy (not Native American). She felt a lot safer and more comfortable in his culture-- I realize now because the autism appeared as foreignness instead, and it was acceptable for a white American to be foreign in an Indian family.

Based on my grandmother's descriptions, I should have seen in it her PDQ. Because of the inherited (taught) obsession with hiding and fitting in, it never dawned on me until shortly after I realized Grandpa had it, and I wasn't sure until 2013. She made a very rare visit to Grandma, needed to get away, and there we were, standing in a parking lot, smoking cigarettes, avoiding making eye contact with each other (not in a shy way, in a very autistic way). CLICK.


My dad?? Uh, yeah, I diagnosed him about 30 minutes after I diagnosed myself. It was OBVIOUS. Obvious because he never made any effort to hide it, beyond forcing himself to keep appropriately quiet at polite society events and formal occasions, which he avoided if at all possible.

He was boisterous, inappropriate, stimmed almost constantly at home, loved his menial and repetitive job in the coal mines (about the only thing he had in common with Grandpa), awkward, horribly embarrassing from the point of view of a daughter between the age of reason and puberty, loud, and somehow all of the above and simultaneously incredibly shy around strangers (strangers being pretty much everyone but immediate family, long-time coworkers, and his very very very few close friends). Almost no one visited us; the only people we visited were his buddy from high school, his sister, his mother, one coworker, and my best friend. He liked it fine that way-- his dogs and his family were company enough, he didn't even bother dating much from the time my mother left him (1980) until after I moved out and got practically married (1998). He was childlike (not childish, really) until the day he died. Loved routine and repetition. Immune to boredom. He self-medicated with huge amounts of marijuana, and he was a nervous, grouchy, short-tempered wreck on the few occasions when he had none. He was prone to meltdowns.

He was never abusive in any way. I guess verbally might be debatable during meltdowns, but he ALWAYS took any insults back, was quick to explain that they were said in anger and untrue, quick to hug and hold and make amends. Friendly as a big dumb dog to people he trusted. He was sweet,and kind, and open. I heard a lot of people call him stupid in life; I never saw a man missed so much in death. Everyone who actually knew him, loved him. All my friends loved him. Old people and little kids loved him. Dearly. He was the best father a kid like me could have had.

He was sometimes lonely and often sexually and female-companionship frustrated (at least, until my stepmom, who had some pretty profound intellectual disabilities from an undetected stroke in infancy). He f*****g SCREAMED Aspie.

But he never learned that there was anything wrong. He never learned to hate himself, and therefore never got withdrawn and hateful or uptight. He was the most affectionate, demonstrative person I've ever known. He was the happiest (actually happy, not forced-happygace happy) person I've ever known.