Dear Autism Parents: On Unconditional Acceptance

I just read an essay in What Every Autistic Girl Wishes Her Parents Knew and it touches home with me. In it, the author, Haley Moss, mainly describes how she feels parents need to ucnonditionally accept their autistic daughters. She particularly emphhasizes the need to support the girls’ special interests even if they’re not age-appropriate or girly. Boy, do I want to tell my parents this. It’s too late now, as I’m 32 and have half a lifetime of conditional love behind me already.

Moss herself too was encouraged to develop age- and gender-appropriate interests as a child. She recounts a fourth grade memory of being advised to trade her rare cards for Bratz dolls. I have no idea what they are, but I remember in fifth or sixth grade also being encouraged by my mother (in not so subtle ways) to trade my Barbie dolls for pop music CDs. After all, Barbie dolls may be girly but they’re not deemed appropirate for an eleven-year-old.

The negative effects of one such incident, like Moss experienced, can be undone by a greater occurrence of open acceptance of the autistic’s special interests. For example, Moss’ paretns eventually affirmed her interest in video games. In this respect, I felt generally okay about my interests in fifth and sixth grade, because, though my mother did not support my playing with Barbie dolls, my father did support my drawing maps.

As a general rule though, I have commonly felt only conditionally accepted by my parents. This is reflected in constant victim-blaming when I was bullied. They were at least somewhat consistent in that, in that at least my father spoke negatively about the intellectually disabled girl whom I bullied too. Of course, he set an example of ableism by doing this as much as my parents did by victim-blaming me.

When I went into college to major in applied psychology, I still got my parents’ reluctant approval. After all, though my major wasn’t that well-liked by them and my college wasn’t as prestigious as they had wanted for me, it still was college. Since having experienced my breakdown in 2007, it’s pretty clear my parents are not there for me anymore. That’s sad, but it’s true.

The saddest part about What Every Autistic Girl Wishes Her Parents Knew is, unfortunately, that those parents who most need to hear the messages in it, will not read it. My parents don’t even think I’m autistic despite my having been officially diagnosed half a dozen times. Other parents may’ve gotten the diagnosis but choose to join the likes of Autism Speaks and shout “You are not like my child!” at every autistic adult trying to educate them about acceptance. That’s so sad. However, if some parents are helped by this blog post or by the book in showing unconditional acceptance to their children, that’s already good.

Tuesday Ramble

I don’t really know what to feel. Today was, well, chaotic. It started out with me getting up at 7:10AM as usual, still tired as usual. My energy level usually rises during the day, but being on high doses of psychotropics still means I’m at least somewhat tired all the time.

At day activities, everyhing went okay. I did some table-based activities and went for a walk with one of the staff trying to learn the route around the building. Meanwhle, a lot was on my mind. Yesterday, the staff had been telling the new intern how one of the clients acquired his cognitive disability. This was such a sad tale. I mean, yes, it may not be ideal to be born with a severe intellectual disability, but at least then you don’t know better. This man, the staff said, probably doesn’t realize much of what his life was like before his brain injury.

Still, it made me sad. I, after all, do know about my life before my extreme autistic burn-out in 2007. I could reason that, since high school was hard for me too, I should be happy I no longer experience that level of pressure. And I am. But that part of me, the would-be-university-professor, is still there.

After lunch, I went home. I wasn’t even home for ten minutes when we had a massive power outage. I didn’t discover it at first, only noticing my Internet connection had gone. Then, I discovered that my computer was running on battery power, so I went to check the rest of the house to see if we still had power anywhere. That’s hard, being blind with light perception, as I’m not sure I trust my vision enough to check the lights but I tried to anyway., I eventually went to check some other electronic devices throughout the house. Then, I called my mother-in-law and texted my husband. My mother-in-law texted back that she couldn’t find any news about a power outage, but my husband called back to let me know the whole village was out of power. Later, we joked that I had somehow caused the power outage.

My mother-in-law came to pick me up, so that while at my in-laws’ home I could at least do something on the computer. Which reminds me of how dependent on electronics I am, especially when alone. Like, I hardly ever touch my phone while at day activities, but at home, practically the only thing I do involves my computer or phone.

In the evening, my father called me by accident. He never calls me and even when my paternal grandma was dying, all I got was a text message from my mother. As such, I immediately panicked, because why in the world would he suddenly want to call me? As it turned out, it was nothing.

Now I’m supposed to feel good, or at least okay, but I don’t. Oh well. No time for processing, as I’m off to bed in about fifteen minutes.

Do I Have to Be Loyal to My Parents?

Last week, I had a meeting with my nurse practitioner. We discussed my experience of being multiple, of having roughly 25 different selves. We also went into part of the reason I’m like this: childhood trauma.

There are selves who are pretty loyal to my parents. They keep wanting to call them, visit them. They keep worrying about what happens to them shoudl they fall ill. My parents are in their sixties, so it is pretty well possible that their health will fail anytime within the foreseeable future. Of course, I don’t hope so and they’re still pretty active, but well, religion aside, no-one has eternal life.

Then there are parts who have stopped caring about loyalty and who are focusing on me. One of these selves emerged shortly after my grandma’s death last May. This event seemed to be cathartic, having caused me, or at least that part of me, to let go of the idea that my parents will ever be what I wish them to be. Just like I won’t be what my parents wished me to be, they won’t be what I wished them to be.

This split between wanting to be loyal to my parents and wanting to move on with life and my own process, also comes to light on this blog. I usually write pretty openly about my experiences, but each time I keep wondering what my parents will think if they ever read this. Part of me doesn’t care, as I’m not lying about my experiences or feelings. Part of me feels I’ve been scapegoated enough that I have a right to tell the truth even if it hurts. Yet part of me still feels I have to be loyal, show respect, honor the people who brought me into this world.

Linking up with Five Minute Friday. The word for this week is “loyal”.

Emotional Flashbacks: I Tend to Fight

I just read up on trauma-related symptoms and was flooded with emotional flashbacks. An emotional flashback is where you are reminded of a past traumatic event but don’t remember it in visual detail. Rather, you feel the emotions associated with the event. You then respond in a usually maladaptive way that is associated with your trauma.

According to Pete Walker, there are four types of trauma responses related to emotional flashbacks: fight, flight, freeze and fawn. I have yet to read up on them all in Walker’s book Complex PTSD: From Surviving to Thriving, but I think I most relate to fight, followed by freeze and fawn. Interestingly, in this book, Walker also discusses specific combinations of responses, such as the fight-fawn hybrid (I think that would be me).

I feel sad, because Walker calls the fight response, which is my most common first reaction, “narcissistic” and on his website relates it to being spoiled. I have yet to read up in his book on whether this is the only trauma that can elicit a fight response, as I was not usually spoiled. Or was I?

When discussing my upbringing with the psychologist who gave me my autism diagnosis back in 2017, after another psychologist had taken it away, I mentioned my parents not letting me develop my independence skills. That is, when I tried to develop independence skills, I was often left to my own resources and not consciously taught. Then as soon as I got frustrated (which I reckon is a natural response), my parents gave up and would do stuff for me. The psychologist called this simultaneous over- and underestimation.

I was rather frustrated with the fact that I was seen as having been underestimated, as this didn’t resonate with my feeling of chornic overwhelm. Also, it somehow feels like it’s a character flaw on my part that I got let off the hook, whereas I consider other forms of bad parenting that I endured to be my parents’ responsibility. Really though, ultimately, it’s my responsibility to heal.

Linking up with RDP #83: Remember.

Dropping the Mask: Does It Take a Diagnosis? #TakeTheMaskOff

Today, the theme for #TakeTheMaskOff is diagnosis or self-discovery and its effects on masking. This is applied mostly to the experience of being autistic, but I can relate to it from a trauma survivor perspective too.

I haven’t yet read any of the other contributions for this week, but I assume the idea behind this challenge is that discovering you’re autistic, either through professional diagnosis or not, can help you drop a facade.

This is definitely true for me. When I was first diagnosed with autism in 2007, my staff claimed that I was using it as an excuse, because I reacted more to for example loud noises than I’d done before diagnosis. Similarly, my parents claimed that I was over-protected by the staff who felt I’m autistic and this led to my psychiatric hospitalization in November of that year.

To be honest, yes, I may’ve started to use autism more as an explanation for my behavior once I was diagnosed than I did pre-diagnosis. Note that I say “explanation”, not “excuse”. I don’t feel I need an excuse to act like myself, unless acting like myself were harming other people. Saying that we use autism as an excuse for our behavior is really saying that we should conform to non-autistic standards of behavior at any cost. Autism is an explanation for why I can’t conform to these standards, but even if I could, that doesn’t mean I should.

Then again, once my autism diagnosis was taken away in 2016, I did feel like I needed an excuse. And so did many other people. I was kicked out of autism communities that I’d been a valued part of for years. Suddenly, I’d been faking and manipulating and “acting autistic-like” all those years rather than just having been my autistic self. One Dutch autistic women’s forum’s members and admins were notorious for spinning all kinds of theories on why I’d been pretending to be autistic all those years and had finally been unmasked.

<PAnd at long last, I started to believe these people. I started to believe that self-diagnosis may be valid for other people, but it isn't for me. I started to wonder whether my parents were right after all that I'd been fooling every psychologist and psychiatrist before this one into believing I'm autistic.

This process of self-doubt and shame led to my first real episoede of depression. After all, if I’m not autistic, why did I burn out and land in a mental hospital? I’d been diagnosed with dependent personality disorder by the psychologist who removed my autism diagnosis, so were my parents right after all? I suddenly felt like I needed an excuse to act autistic-like, as if being autistic is indeed less than, not just different from being neurotypical.

I sought an independent second opinion and was rediagnosed with autism in May of 2017. I still am not cured of the idea that it takes a professional diagnosis to “excuse” a person from acting non-autistic. I don’t apply this to other people, but I do still apply it to myself and that’s hard.

I use this blog to counteract this self-stigmatizing attitude. This, after all, also applies to my status as a trauma survivor. I got my autism diagnosis back, but I never got and most likely never will get my trauma-related diagnoses back. I still mask, hiding my trauma-related symptoms when I can. And that’s not usually hepful in the long run.

Remembering the Onset of My Temper Outbursts

I have been a member of groups on the topic of disruptive mood dysregulaiton disorder (DMDD) for the past year or so. DMDD was introduced to the psychiatrist’s manual with DSM-5 in 2013. It is a condition in which a child or teen is irritable or angry most of the time and has severe temper outbursts on average at least three times a week for a period of at least twelve months. The diagnosis cannot be made in a child under six or a person over eighteen. This being the case, I’m not in these groups because I currently think I may have DMDD, but because I think I may’ve had it as a child.

According to my parents, I was just a little immature emotionally until the age of around seven. I switched schools, transferring from mainstream Kindergarten to a school for the visually impared, when I was nearly six in 1992. In 1993, I started to learn Braille. This is around the time my temper outbursts started. According to my parents, I wasn’t even regularly irritable up to that point. They describe me as a relaxed, cheerful child.

My own memories are hazy. Of course, I remember temper tantrums from before age seven, but what child doesn’t have those at times? Between the ages of seven and nine, my mood got worse and worse. I remember being suicidal at arund the age of eight.

So was this DMDD? We will never know, as the diagnosis didn’t exist back in 1993. Was it, like my parents believe, a way of expressng my frustration with the fact that I was going blind? Was I being manipulative, also like my parents think? Trying to elicit care from my parents and professionals by acting out? Or was it a form of autistic burn-out? Had neurotypical developmental expectations overwhelmed my autistic brain?

Like I may’ve said, my parents don’t believe I’m autistic. They believe I have some traits, but not enough to impair my functioning or warrant a diagnosis. They say I’m just blind and of genius intelligence. And oh, the rest is just me trying to manipulate people for attention. They don’t seem to realize, then, that I, too, suffered from my irritability and anger outbursts.

Angry

Hiya everyone,
My name is Kelly. I am 10-years-old. I am so angry now. I wanna call my mother and shout at her and all that, but the grown-up people say I can’t. I am angry because my parents say I’m angry too easily when in fact it’s them who do stuff like tough love.

I mean my mother says “So you wanna go residential at Bartiméus?”. That’s the school for the blind we go to. So if I’m not being good she’s gonna send me away. She also throws out my toys cause she says I’m defiant because I have too many toys.

Oh and Mrs. B our low vision teacher doesn’t want me to do low vision anymore. Well I don’t care what people think.

I was typing up this memory thingy but then my Internet crashed and I lost the piece I’d written. I will try to share again.

One day a social worker comes by my house to talk to my parents. I dunno who wants it my parents or the social worker. My mother says the social worker had said I’m angry too easily and I need play therapy. I go there during biology class, which is the only interesting class in school. so it sucks. I gotta play with this grown-up man I don’t even know. I wanna flood the water tray and throw out the purple dolls in the dollhouse because ya know, dolls can’t be purple. I don’t know why but my parents take me out of this therpay after four sessions. So why the fuck did they put me into it? I mean I’m not supposed to magically snap out of my anger by four sessions of stupid play therapy am I?

I’m confused now. Yes I’m angry. My parents say I wanna make them miserable. I have stopped caring. They’re gonna put me in residential if I don’t stop playing with my toys anyway and yet I’m suppose to play with this grown-up during biology class. I’m so angry. I don’t know why, cannot write it in English or maybe not even in Dutch either. I’m just pissed off.

It Was the Summer of 2007

Today, for the first time in a long while, I’m linking up with Finish the Sentence Friday (yes, on a Sunday, but I wasn’t inspired on Friday). The prompt this week is “It was the summer of…”.

Last Wednesday marks eleven years since I started living independently in the city of Nijmegen, where I’d go to university. It was a Wednesday back then too. It was the summer of 2007. We’d had a heatwave in July, but as far as I remember, the weather wasn’t good in August.

On August 1, 2007, my parents drove the 40’ish miles from the independence training home in the city of Apeldoorn to Nijmegen with me. The car was packed full of my belongings. While the training home apartments were furnished, I still had some ofmy own furniture. Besides, my new apartment was only partly furnished.

I didn’t feel much on my way to Nijmegen. I was drugged up with the antipsychotic a psychiatrist had prescribed just a week before. I still find it rather weird that I’d started a new medication just a week before a majr transition, because how would we know whether it was working then?

When my parents had put together my new furniture, we went to the nearby Chinese takeaway. I had learned to cook in the independence training home, but I don’t think my parents trusted me enough to do it for them.

After finishing our food and putting the leftovers in the fridge for the next day, I crashed. I cried. I still find it painful to remember, as I was always taught not to cry. My mother saw me cry, whcih was terribly embarrassing. She didn’t comfort me. I was 21-years-old, after all, and no longer my parents’ responsibility.

Good Mother Messages

I am currently working in the book The Emotionally Absent Mother by Jasmin Lee Cori. My first response to it was: why mothers? I was, after all, raised primarily by my father in my early years. Since my mother didn’t breastfeed me, I’m not even sure she was there much at all when I was an infant. Besides, I spent the first three months of my life in hospital, so didn’t have either parent as a primary caretaker then. As such, my main reason for downloading the book was to work through emotional hurts from my past regardless of which parent inflicted them on me.

In the first chapter, the author talks about “good enough” parenting. She goes on to list “good mother messages” children raised by good enough mothers received. Today, I want to share these and my thoughts on them.

1. I’m glad that you’re here. This message shows that as a child we’re wanted. It isn’t black-or-white though, since many children feel unwanted at times, but this message can be countered by a greater sense of being wanted. Some clear memories pop up into my mind now. The countless times my parents, mainly my mother, threatened to institutionalize me when I attended a school for the blind as a non-residential student from age nine to twelve. Also, when I was fourteen, I was rejected for a summer camp and had a meltdown. At some point, my parents were angry and so was I. I said they’d just as well put me in a children’s home, at which point my father said: “None wants you.”

2. I see you. This message is conveyed through our parents knowing what we’re interested in, how we feel about things, etc. I am not sure about this one. On a deep, emotional level I feel consistently unseen, but no clear memories pop up. My father was relatively tuned in to my interests.

3. You are special to me. The author points out here that this message needs to be paired with us being seen for who we are. Yes, so true. I was seen as special, a genius even, by my mother, but only for superficial achievements such as calendar calculation. I hated this.

4. I respect you. God, this one strikes a chord. The author explains that a parent who sends this message, allows the child to discover and express their unique self rather than having to conform to the parents’ blueprint for them. One particular memory comes up, which isn’t a traumatic memory but is a funny example of the larger scheme of things. When I thought I was a lesbian at age fifteen, I tried to figure out whether my parents would be open to this before coming out. My mother said: “I accept you as you are, even if you turn out to be a conservative.” Well, that said enough: she didn’t accept me as I am.

5. I love you. As the author says, some children hear this multiple times a day, while others go a lifetime without hearing these words. They also need to be felt as sincere. In my case, my mother would often say “I love you” when we’d just had an argument. She was physically affectionate, but it was usually in a ritualized way. Like, I was given a goodnight kiss each night until I was at least twelve. One memory in this respect, happened when I was around eleven. My parents required me to read a certain number of pages of a Braille book. If I didn’t finish them, I could go to bed but without a kiss or any affection. This is probably a relatively minor incident, but it is again a sign of how affection was used generally.

6. Your needs are important to me. You can turn to me for help. This one is a mixed bag. I was helped, yes, sometimes too much so, but I wasn’t taught how to do things on my own. Then once I turned eighteen, my parents expected me to be fully independent. My needs are currently definitely not important to my parents. As I sometimes half-jokingly say, they fed me for eighteen years and then they thought their job was done.

7. I am here for you. I will make time for you. See above. Until I was eighteen, my parents were a relatively consistent presence in my life. They never actually institutionalized me and they’re still together. Then when I turned eighteen, they said I had to take care of myself and more or less vanished. This was clear to me from an early age on, too. As my father at one point told me, a family is like a business, it has to be run efficiently.

8. I’ll keep you safe. I am not sure. This one feels odd on a deep, emotional level. One memory that pops up though, is my parents consistently blaming me for being the victim of bullying. My parents also were pretty much the opposite of helicopter parents. Like I said, they were hardly involved in my life past age eighteen. Not that I care much now, but it feels as though I was hardly protected by my parents. The author says that those who don’t receive this message, feel small and unable to explore the world. Yes!

9. You can rest in me. I’m not sure. I don’t understand this message really. It conveys feeling at home with your parents. Definitely not. However, I don’t feel like I can be at home with anyone.

10. I delight in you. This one is mostly conveyed in non-verbal ways, of which I’m not aware due to being blind. As a result, I’m not sure of this one.