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31 Days of Autism Landing Page #Write31Days

Welcome to my #Write31Days for 2017. I’ve not written regularly on this blog, or any blog, in almost 1 1/2 years. With #Write31Days, I’m attempting to change that. For those who don’t know, I participated in this challenge in 2015 on the theme of mental health. It’s a challenge where bloggers write a post every single day for the motnth of October. As such, it’s quite a huge challenge to take on for me – going from four posts a month or so to 31. Please all send positive vibes and have your fingers and toes crossed that it’ll work out – and hopefully give me a boost to blog again more regularly for the months after October.

For this year’s theme, I have picked “autism”. I know, I chose this for the #AtoZChallenge in April and failed, but I didn’t have a diagnosis back then to give me a reason to persevere. I do now. I mean, I know self-diagnosis is valid and, besides, I was formally diagnosed three times before. I had however internalized a lot of prejudice. Since this was the main reason for my not sticking to the #AtoZChallenge, maybe #rite31Days will be more of a success. I hope so.

In 2015, I wrote mostly infmrational posts on topics related to mental health, such as personality disorders. Though I will share the odd informational post in this year’s #Write31Days, I will mostly focus on my own lived experience as an autistic person. I will mostly pick my topics from the 30 Days of Autism Acceptance challenge. There are 32 topics in the challenge, since day 9 and 10 have two topics to choose from. Since I already wrote several posts based on this challenge though, I’ll have to be a little inventive too.

This is my #Write31Days landing page, where I’ll link to each day’s post so you can easily see them in one place. Enjoy.

#AtoZChallenge Theme Reveal 2017: Maybe This Is a Big Mistake, But…

As regular visitors to my blog know, I am currently in the re-assessment process regarding my psychiatric diagnosis. Last year, my psychologist removed my autism diagnosis, that I’d had since 2007. I initially went along, because her reasoning – that I had some type of brain njury instead – seemed plausible at the time. Besides, I wanted to spare myself the emotional rollercoaster of yet another assessment. I had several since my initial diagnosis after all, though most of these reports disappeared. After my psychologist decided to diagnose me with just a personality disorder and depression though, I decided to seek an independent second opinion anyway. I’ve never had an assessment more thorough than this one, I must admit.

I participated in the #AtoZChallenge twice already. In 2015, I had autism as my theme. In 2016, I went with general mental health. This year, I’m still in doubt even as I write this post. Brain injury, premature birth and disability rights crossed my mind, but I have a hard time thinking of topics for each letter that are relevant to these themes. Since I don’t know yet what the outcome of my re-assessment will be, I am rather daring by picking “neurodevelopmental disorders” again. This is broader than autism, so I can have an excuse and write on unrelated topics if it turns out I’m not diagnosable as autistic after all. Neurodevelopental disorders are still a major (special) interest of mine. However, I don’t know yet how I will handle the outcome of my assessment, so it might be I’ll be so depressed I’ll stop blogging. My blog has been rather inactive lately anyway. If it turns out I’m not diagnosed with autism, I’ll hopefully finish the challenge and then close the chapter. I contemplated skipping A to Z and choosing this theme for #Write31Days in October (if that challenge stll exists) should I be diagnosed with autism again. However, maybe my blog will have died of inactivity by then. In an attempt to kick it when it’s down, I’ll take on the #AtoZChallenge anyway. Wish me luck.

Racism and Black Peter

Last year, not for the first time but for the first time I did notice, debate sparked in the Netherlands about the St. Nicholas celebration and the color of “Zwarte Piet” (Black Peter), St Nick’s helper. I didn’t pay much attention to the debate, but when a number of my Facebook friends signed the “Pietition” to keep Black Peter black, I did so, too. I had never thought of Black Peter as referring to slavery. Possibly, it’s because I didn’t know that he was decorated rather steretoypcially with red lipstick, earrings, etc. More likely, it’s because I possess White privilege and I horribly neglect racism in my attempts at educating myself about minoriyt points of view.

Around the discussion last year, my husband introduced me to a point of view which said that apparently White people’s enjoyment of the tradition is more important than Black people’s dissatisfaction with it, and this is racist. We, and I include myself here, often say that Black people who complain are just “professional niggers” shouting “racism” at every opportunity to do so. Then again, I for one am pretty well-known for calling out ableism (discrimination of people with disabilities) at every opportunity at least on my blog.

I understand both points of view. White people insisting on tradition probably aren’t otherwise racist, rather more likely having trouble shifting perspective from their own privileged stance to the minority person’s. Of course Black Peter has got to be black, everyone knows this, because I’m in the majority here and I know. On the other hand, Black Peter does have a traditional helper role, which could easily be interpreted as a reference to slavery (and it is likely that the historical St. Nick had slaves too, though they may not have been Black). Tradition is important for many people, but can’t we shift it a little bit for some people’s comfort?

St. Nick will arrive in the Netherlands in Gouda on November 15 this year. The St. Nicholas committee has decided to include a majority of black Peters, but to include yellow-faced “Gouda cheese” Peters too. That way, they give both parties a little of what they want, but I doubt either will be satisfied. Particularly some people supporting traditionally black Peters have radicalized over the year a bit towards a more hostile form of racism rather than mere ignorance.

Mama’s Losin’ It

#AskAwayFriday for July 4, 2014

Today, I am pleased to participate in #AskAwayFriday again. This time, I partnered up with Carol Graham from Battered Hope. I know some people say I’ve overcome a lot, but when I read Carol’s blog, I was astonished at all that she’d endured and how she still manages to keep such a positive attitude. Check out her blog and get to know her through the questions I asked her. Below are my answers to Carol’s questions.

1. You were born the same year as my daughter. She was two months premature. My heart reaches out to you and I know you have had some incredible challenges in your young life. What challenge are you the most proud of overcoming?
Surviving prematurity against all odds. That may not be something I remember, but without overcoming this challenge, I wouldn’t be here.

2. As an advocate, what are some ways that you have raised awareness to help the mentally ill?
Mostly blogging. I’ve also been in a recovery group, which is a group where mentally ill people help each other on the path to recovery. Recovery, here, is not cure, but living a full life in spite of mental illness.

3. Do you have any brothers or sisters? If so, please tell me about them.
I have one sister. She is two years younger than me, so now she’s 26. She is about to earn her Master’s degree in history, for which I admire and envy her. I don’t really know what else to say about her.

4. You have been living in a facility since 2007. What is the most difficult part of institutional life?
Having the staff make decisions about my daily life. Institutions now claim to be all about rehabilitation, which in theory means the patient directs their own life. In practice, it means staff tell you to be independent in practical skills but still make important decisions for you.

5. What is the best part?
The day activities.

6. Do you have any hobbies other than surfing online?
Writing of course, but also reading non-fiction and autobiographies (I’ll be sure to check if yours is available as an ebook). Oh and crafts. I love cardmaking, polymer clay and jewelry making.

7. If you were not limited by finances or any disability, how would you like to help others who have experienced similar anxieties?
I would start my ideal supported housing and working project. It would be similar to workhomes for autistic people (where they can do day activities close to home), but it would be all about clients truly directing their own lives, with staff available to meet the clients’ needs and help them have a comfortable (as opposed to productive) life.

8. You said that you were legally blind. Do you have a guide dog?
No. I would like to get one someday though. The largest guide dog school in the Netherlands also trains service dogs for autistic people, so I’d like to get a guide dog who is also an autism service dog.

9. I admire your courage and positive attitude towards life. How do you encourage people with similar problems?
I don’t know that I have all that positive an attitude. Honestly, I have no clue how I encourage others. If they’re inspired by my writing, that’s great.

10. And finally, a question I ask anyone I meet for the first time — tell me about yourself in FIVE words.
I am creative and imaginative.

#AskAwayFriday for June 6, 2014

I’m participating in #askawayFriday for the first time this week. #AskawayFriday is a way to get to know other bloggers. You partner up with anotehr blogger and ask each other ten questions. This week, I’m swapping questions with Echo from Domain of the Mad Mommy. Check out her blog and get to know her through the questions I asked her. Below are the answers to Echo’s questions to me.

1. You’ve been blogging since 2002. How has the blogging world changed since you started?
Well, in all honesty I’ve been doing actual blogging since 2007. Between 2002 and 2007, I kept a number of online diaries. These are much more personal, and with me being on DiaryLand most of that time, there was no way to comment (a commenting system cost a ton of moeny). That being said, when I started actual blogging in 2007, I wasn’t nearly as aware of the blogosphere as I’m now, and kept mostly to the tiny niche of autistic advocacy bloggers. I don’t know whether the blogosphere has changed, but my blogging certainly has. when I started blogging here at Blogging Astrid, I wanted to make my writing accessible to people not familiar with disability advocacy, so I started blogging for a wider audience.

2. You grew up with undiagnosed Asperger’s Syndrome. Do you think a diagnosis would have helped you in your youth?
Definitely. My parents were unwilling to have me assessed because they thought I’d be seen as intellectually disabled. Then again, Asperger’s Syndrome specifically requires no intellectual disability. It’s not always wise to look back, but I think I could’ve benefited from more tailored supports had I been diagnosed early on.

3. You feel very strongly about advocating for mental health. Is it your own experience that drives that passion?
Yes. Besides autism, I have a diagnosed mental illness (borderline personality disorder). I’ve also lived in a psychiatric institution since 2007. I like to advocate for the rights of mentally ill people, because I’ve myself experienced the authoritarian system that psychiatric care still is. I also want to raise awareness, so that people without mental illness will understand what it’s like being mentally ill.

4. You live in the Netherlands, but have you ever traveled outside of Europe?
No. The farthest I’ve traveled is Russia in 2000.

5. If you could visit anywhere on Earth, where would you go?
The United States, definitely. I’d like to someday take a culinary trip to the southern U.S. When I was a teen, I dreamt of living in the U.S., in fact.

6. What is your favorite way to relax?
Hanging out online and writing.

7. What is your favorite song right now?
Take It Easy Altes Haus by Truck Stop. It’s a German country song. I don’t think it’s on YouTube and besides, I have YouTube blocked for now, so can’t go find it.

8. What is the best thing you have ever eaten?
Kofta.

9. Where do you see yourself in 2 years? Still blogging? Advocating?
Hopefully still blogging, if the blogosphere doesn’t disappear entirely. I think as for advocacy, I’d still do it online mostly, but I’d like to expand my horizon and advocate in the real world too. I also hope I’ll have left the institution in two years and right now I’m thinking that wherever I reside then, it’s got to have Wifi. 😉

10. If you could give us one piece of advice, as an adult on the spectrum, what would it be?
Accept others as they are, which doesn’t necessarily mean accepting all their behaviors.

Play the Game of Pim-Pam-Pet

The game of pim-pam-pet

I go to the activity room in the building across the street from my ward regularly. Usually, I do crafts there, but I sometimes play word puzzles and card games too. One such card game is pim-pam-pet. It’s a very family-friendly game, which I played as a child too. I could hardly find English-language information on it so don’t know whether the game is sold in the U.S. or UK, but the cards are easy to make. There also seems to be an iPhone app fo rthis game. Pim-pam-pet isn’t played with a regular deck of cards. Instead, there are a set number of cards with category words on it, such as “book”, “girl’s name”, etc. Then the game contains a letter wheel used to select the letter with which the answer to the word on the card needs to start. If, for example, the card says “girl’s name” and the letter showing on the wheel is A, the players need to come up with a girl’s name starting with A. The first person to name a girl’s name starting with A (Astrid!) wins that card. At the end of the game, the player possessing the most cards has won the game.

There are premade sets of cards which you can buy at a toys store. However, you can also make your own cards using pieces of white cardstock. On those, you can put funny questions such as “What do you like eating for dinner?”, “who do you love most?”, etc. Of course, the letter showing on the wheel limits your choice. I myself find I sometimes get stuck when I can’t think of something I genuinely like with the letter showing, but other people I play with name random things. For example, it’s quite funny to hear someone who can’t stand broccoli answering that to the question of what they like to eat for dinner when the letter B comes up. Similarly, when the question is to name a book and the letter showing is I, my activity staff has come up with: “In the summertime. I bet there’s a book titled that.”

When you are playing seriously, this game is a good way of teaching object categories to children. It may be that you’ll need to turn the wheel multiple times. After all, what if the letter Z comes up and the question is a color? When you’re playing for fun, the answers to questions like “who do you like to play with?” can be good conversation starters. When people give random responses, it’s just a way to have a good laugh. In any case, pim-pam-pet is a really fun and sometimes educational game for anyone old enough to know their letters.