Monthly Archives: July 2018

#TakeTheMaskOff: What Is Masking?

Today, rather late, I found out about the #TakeTheMaskOff campaign designed to promote autism acceptance and awareness of the effects of masking. I really want to participate, so even though it’s incredibly hot here, I’m writing a post.

The campaign consists of six consecutive weekly themes about which participants blog, vlog or post on other social media. The first weekly theme is “What is masking?”

Masking, put simply, is pretending to be something you’re not. This can be done either consciously or uncnsciously. Many autistic adults have learned to mask so well it’s almost second nature. We’re also encouraged to mask on a daily basis when people judge us about being autistic. Then when we mask successfully, we’re told we don’t look autistic.

For example, I’m often told that I don’t appear autistic. After all, when I hold a conversation, I appear pretty “normal”. I am told I can hold down a reciprocal conversation that doesn’t sound stereotyped or like I’m scripting. I ask people about their interests, for example. Now that it’s been extremely hot here for a few weeks already, I have even mastered some smalltalk about the weather.

This obviously (to me) does not mean I’m not autistic. Autism, despite what many people think, is not about social niceties. Autism is not the same as a lack of interest in others. Besides, I have 32 years of experience being told how selfish I am for not appearing to show an interest in others. So instead of showing a genuine interest in the people and topics I’m genuinely interested in, I learned to appear to be interested in whatever and whoever I am supposed to be interested in. In other words, I learned to mask my autistic curiosity.

For example, I was eleven when my mother told me I might be institutionalized if I didn’t become more age-appropriate. My having too many toys and dolls, according to her, contributed to my challenging behavior and I was to get rid of them. Instead, I was supposed to develop an interest in music. I wasn’t all that sophisticated at the time, so rather then developing a genuine-appearing interest in music, I hung Backstreet Boys posters on my wall.

Similarly, I was encouraged to wear jeans rather than sweatpants even though jeans were a sensory nightmare to me. It was assumed that I wore sweatpants because I didn’t care about my appearance – which is partlty true – or because I, being blind, didn’t know that my peers were wearing jeans.

Masking can become so internalized, apparently natural, that you no longer notice you’re doing it. For instance, I wear jeans without a problem now.

It is easy to assume that, because the autistic person no longer notices that they’re masking, it must not be affecting them. This often leads to the assumption that, if someone doesn’t appear autistic and isn’t acting out, they must not be autistic after all. Then people go on to assume that, if said neurotypical-appearing person does act out, it must be “manipulativeness”.

I am, however, definitely masking when I wear jeans, or listen to my husband’s favorite radio station in the car, or engage in smalltalk about the weather or someone’s upcoming vacation. It isn’t always a negative thing, but it is still masking.

Book Review: The Hospital by Barbara O’Hare

A few weeks ago, I heard about The Hospital by Barbara O’Hare in a foster care and inspirational memoir group on Facebook. I decided to check it out and it sounded great. Having been in a psychiatric hospital myself and having endured some controversial treatment there, somehow I was drawn to this book. Maybe it’s because I want to be reassured that it could’ve been worse. I don’t know.

Synopsis

“Nobody knew what was going on behind those doors. We were human toys. Just a piece of meat for someone to play with.”

Barbara O’Hare was just 12 when she was admitted to the psychiatric hospital, Aston Hall, in 1971. From a troubled home, she’d hoped she would find sanctuary there. But within hours, Barbara was tied down, drugged with sodium amytal – a truth-telling drug – and then abused by its head physician, Dr Kenneth Milner.

The terrifying drug experimentation and relentless abuse that lasted throughout her stay damaged her for life. But somehow, Barbara clung on to her inner strength and eventually found herself leading a campaign to demand answers for potentially hundreds of victims.

A shocking account of how vulnerable children were preyed upon by the doctor entrusted with their care, and why it must never happen again.

My Review

The story begins with Barbara’s early childhood memories of being abused by her Dad and step-Mom because of being a “dirty tinker”. The abuse unfortunately only continues oce Barbara is cared for by Edna, a woman renting her father’s house while he’s working off-shore. Barbara from there ends in a children’s home, where she tries to run away, so she’s placed in The Cedars, a locked children’s facility.

There, Dr. Milner meets her and tricks her into going into Aston Hall. Once there, she’s tied down, drugged and abused regularly throughout her eight-months-long stay. Barbara discovers that the other girls on her ward share two things with her: most come from The Cedars and all don’t know their biological mothers. What struck me as interesting was the dynamic between the girls while not in “treatment”. They were pretty typical girls, forming cliques and friendships and bullying one another.

When Barbara is on leave with her father and yet another of his girlfriends, she confides in them and they decide to get her out. They get Barbara into an approved boarding school, which is a lot better than the hospital but still very strict. Barbara yearns to meet her biological mother and tries to escape the school to find her. Her father than moves her to a girls’ hostel, where she is free to go as she pleases. She eventually goes on a search for her mother, which ends in disappointment.

I must say that it’s not too clear throughout the book how the hospital affects Barbara long-term. She does explain in a chapter about her ongoing PTSD symptoms and risk-taking behavior (possible dysregulation from complex PTSD).

Most people in the Facebook group said that they didn’t like the ending of the book. I had no problem with it though. I mean, I didn’t feel Barbara’s appreciation of her father was all that warranted given his early abuse of her, but then again he did get her to escape Aston Hall.

Overall, I really loved the book. It was a pretty fast-paced read and I finished it within a few days.

Rating: five out of five stars.

Book Details

Title: The Hospital: How I Survived the Secret Child Experiments at Aston Hall
Author: Barbara O’Hare
Publisher: Blink Publishing
Publication Date: Feburary 9, 2017

I Found New Day Activities!

It’s becoming a cliche but I really want to write more regularly. Instead of actually writing, I’m looking at journaling guides on Amazon and buying some of them. They’re cool, but if you don’t actually sit down to write, nothing will flow. I started a private journal again on Monday, but didn’t get beyond that first entry. That’s usually how it goes. In that sense, it’s surprising this blog runs for almost five years already.

A daily journal could really benefit me, as I tend to omit many of the seemingly less and even more important things in life on my blog. For example, I never shared how I’d been doing looking for new day activities. Guess what? I’m starting at a new place soon!

I went to tour several day activities places in an area about 20km from my home on June 11. They’re with the same organization my current place is with but in a different area. I think I shared already that the more work-related places weren’t suitable, but a day activities center did sound suitable. It happens to be the closest by my home out of the four places in that area, which is good because of transportation.

On June 25 and 26, I spent the mornings there at the highest-support group. The first day, I was quite overwhelmed, but the second day was better. The staff are all really nice and accommodating. The next week, I spent each morning at the place and loved it. Granted, it was a lot quieter due to some clients being off, but I reasoned I’d probably get used to the noise I’d endured the first days.

This group is for people with severe intellectual disabilities, but most are at least partly capable of performing their personal care. By contrast, at my current group, all clients need help with toileting, most with eating and some need full care. The staff/client ratio is similar. As a result, the staff at the new place are usually more able to do activities rather than running from care moment to care moment. They’re also more used to challenging behavior, as several clients have behavioral issues.

The actvities are varied. They go for walks, some clients go swimming every other week and some go horseback riding (at the place I go to as well). On Wednesday morning, they do a cooking activity and on Friday they visit the marketplace. There also is a fenced yard attached to the group, which has cool swings and a rocking lounger. They have a variety of table-based activities too, some of which I liked and others I didn’t.

I had my “interview” for this new place on Tuesday and both I and the staff were really content. So I have a new “job”. I’ll start on August 6.

One thing that did bother me a bit is the fact that the staff didn’t see a need for a meeting with the Center for Consultation and Expertise (CCE) consultant. At least, that’s the impression I got. They also said we don’t need to involve the manager, as that’s not how things work there. Since with my current place, the manager was the one accepting me and the ultimate decision-maker on kicking me out again, I feared the same might happen the first time I’d have a meltdown there. According to my support coordinator, the staff are in fact open to meeting the consultant but this doesn’t need to happen before I start there. I understand that.

How Far I’ve Come

Today, in a complex PTSD support group, a member shared her story of hope and healing to lift other members up. I was inspired to share mine. Not that I’m as successful as she is, but I’ve come a long way on my healing journey especially given how deeply troubled I was several years ago. Regular readers will know most of this already, but I’m still going to share where I’ve come from and how far I’ve come so far.

In 2007, I started university in Nijmegen. I didn’t really want to go to university, but I felt I had to because my parents expected me to. I felt I had to live up to their expectations or I wouldn’t be worth much and would not have anyone to support me. My parents had instilled in me that I wasn’t wired for relationships, so if they decided to abandon me, I’d have no-one left.

Two months in and I crashed. I was so dysregulated and suicidal that I had to be admitted to a mental hospital. The psychiatrist who admitted me felt I needed supported housing. We searched for this for many years, but no place wanted me.

Meanwhile, the other half and I started dating. This could’ve given me some hope that I may in fact be able to develop social and even romantic relationships and wouldn’t be dependent on my parents for the rest of my life. You see, despite the fact that my parents only ever visited the hospital to argue with my treatment team, I was still heavily emotionally dependent on them. I still felt I needed their approval to be able to have any sort of meaningful life.

That changed around late 2010 to early 2011. The other half had proposed to me in June of 2010. I was diagnosed with dissociative identity disorder and PTSD in late 2010. Finally finding a treatment provider who believed me and realizing the other half was here to stick by me, gave me the strength to stick up for myself.

I still had many setbacks in the years that followed. I changed hospitals and my new psychologist didn’t believe I had DID/PTSD. The next psychologist even removed my autism diagnosis that I’d had for many years. She diagnosed me with dependent personality disorder, not because I was passive and compliant, but because I was too assertive, claiming care she felt I didn’t need.

In early 2017, I finally found the determination and courage to fight like a lioness for what I need. I sought an independent second opinion on my diagnosis. I started the process of finding suitable support, eventually enlisting the Center for Consultation and Expertise. I started to realize that I’m not just the crazy one in my family. In fact, even though no-one has a diagnosis other than me, I’m pretty sure my entire family has fallen a bit off their rocker. I finally realized (though I still don’t fully feel it) that the trauma I endured wasn’t my fault.

These strong parts of me are still a bit split off from the core of me, but that’s okay. Ultimately, I will hopefully learn to synthesize their qualities with the ones of the weaker or smaller ones. I don’t need to become “one”, but I hope I can someday live as the whole person, made up of all these parts, that I am.

Currently – July 2018

It’s still hot, so my book review and several other complicated posts will have to wait yet again. Today, I’m participating in this month’s Currently, hosted by Anne of In Residence and Shelly of The Queen in Between.

Celebrating: my birthday. It was last week, but I still have yet to get my husband’s present for me, as I asked him for a summer jacket, so he’ll have to have me pick one. I don’t like online shopping for clothes, as I won’t be able to feel the fabric then, so we’ll have to go to a brick and mortar store. We were in the nearest larger city yesterday for a mental health appointment for me, but my husband felt it was too hot to go shopping.

My oldest sister-in-law’s birthday is also coming up on Sunday. She doesn’t seem to like celebrating it though.

Visiting: my in-laws. I felt rather lonely and stressed this afternoon, so called my mother-in-law. She offered to pick me up and we drove to my in-laws’ house. I had dinner there and we walked their dog.

Baking: I’m not baking anything at the moment. I wasn’t at my current day activities today, as I was taking a look at a possible new day activities place. We usually do a simple baking or cooking activity at my current day activities on Wednesday and they do the same at the potential new place, but not today.

My husband though baked a delicious strawberry cheesecake for my birthday last week. I am used to getting apple pie on my birthday, but didn’t want that this year. My husband said we did need to have some cake for my parents, who were coming over, so I chose cheesecake.

Wearing: skirts! One of my favorite aspects of summer is being able to wear skirts. I have three of the same kind in red, blue and green. Then I have one other skirt, a blue one with a rose on it, that I got from my husband for my birthday several years ago. Lastly, I have a green one which is just a little too tight for me now, but I’m hoping to fit in it again next year.

Loving: life, mostly. I am genuinely feeling much better than I was several months ago. I still can get self-destructive when triggered, which still happens every now and again. However, I think I can be fairly confident that I’m no longer seriously depressed.

What have you been up to?

My Favorite Ways of Staying Active

It’s still pretty hot here. On Saturday, I paid the price for having said that hot weather is good for practically everything, as I spent the day mostly in bed feeling pretty rubbish. Today, I’m doing better. I am starting on yet another great-seeming Kindle book while still having to review the last one I finished. However, I don’t feel up to this. In fact, I wish the weather was slightly cooler so that I could’ve been more active physically. Instead, I’m going to share in this blog post about my favorite ways of staying active. This post was inspired by Emilia of My Inner MishMash, who asked a week or two ago which sport we’d choose if we had to pick one.

1. Swimming. Oh, how I love this. In the Netherlands, most children get swimming classes at school at least in the early elementary school years. I did too, but at my school for the visually impaired, I wasn’t progressing because my teacher was over-protective. My parens enrolled me in swimming classes at the local pool and I got my first diploma when I was nine and my second about eight months later, when I’d just turned ten. These two dplomas are the ones most people in the Netherlands have. Since we got swimming classes throughout elementary school at the school for the blind, I was able to stay in classes for another two years. I never earned another diploma though.

Back in the day, I still had some vision, so was able to swim in a relatively straight line. Now I can’t to save my life. My left side is weaker than my right, so I often swim in circles and sometimes, when I think I catch myself doing this, I overcompensate. My husband finds it pretty challenging to keep an eye on me while swimming. I still really hope I can find a way to go swimming regularly.

2. Horseback riding. I went horseback riding a handful of times when on holiday as a child. We just did steps on a pony with my parents each walking beside my sister and me. At one point, I asked my mother whether I could get riding lessons, but she said it was too expensive as I’d have to get a private instructor.

I forgot about the whole thing until 2012, when I was in the process of finding suitable day activities while in the mental institution. I had heard of an adaptive riding school and wanted to know more. Unfortunately, they catered mostly to those who are just autistic or learning disabled, so they didn’t feel they could safely get me riding classes. Instead, I was allowed to brush the horses under supervision.

Fast forward another several years and I heard of my current riding school through my mother-in-law. I love it. Usually, we step around for about twenty minutes and then trot for a few rounds. I can’t say this is truly active exercise, though my Fitbit does recognize it as such.

3. Walking. I just love going for walks, although I prefer staying on the pavement rather than walking in nature. With my blindness and mild mobility impairment, walking on uneven ground is just too hard. I like to go on at least one walk a day, usually at day activities.

4. Cycling. I own a tandem bike that I got through disability services back in 1999. It’s in terrible condition though, so we’ll either have to throw it out (as it takes up a lot of space) or get it repaired. I didn’t usually like tandem bike rides and am still not too sure. Last year at day activities though, I discovered the side-by-side bike. I love that one!

5. Going to the gym. I don’t currently have a gym membership, as I won’t be able to afford transportation to the nearest gym. However, I love most gym equipment. I specifically like the treadmill, rowing machine and elliptical. At home, we have an elliptical in my office, which I go on a few times a week.

What are your favorite ways of staying active?