Feeling guilty

I haven’t exactly been feeling guilty for not blogging much, but I’m still going to back-date this post so the February archives link doesn’t come up empty – because that “Page not found” thing annoys me. So. Yeah.

I don’t do guilty well. It’s an emotion I’ve never really gotten the hang of. Either I’m powerless to change an outcome, in which case feeling guilty isn’t going to help much, or I’m personally responsible for the outcome, in which case DOING something about it works much better. I’m sure that guilt is a far more complex feeling in others, but I have trouble with emotions anyway.

My silence here isn’t something I feel guilty about. Even though I love writing, I simply haven’t felt that itching in my fingers. Too much stuff going on in my life to be able to process it verbally. It’s one of those times where it really becomes clear how verbal thinking, no matter how verbal I may seem, isn’t my primary coping mechanism.

I’m slowly getting back into the verbal, but I’m not rushing myself. The words will come when they’re good and ready.

And in the meantime, here is a pretty picture.

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Hang on, I’m different

This article is part of the T-21 Blog Hop. Although the name is reflective of Down syndrome, this hop is open to all blogs in the disability and special needs communities. Self-advocates, allies, parent advocates, all are welcome. Posts should be about advocacy or activism.

Join Down Wit Dat on the 21st of Every Month!Click here to enter your link and view all the participating blogs.

In my entire road towards an autism diagnosis, it seemed a bit strange that I’d only talked to autistic bloggers, through blog posts and comments and email. On top of that, the majority of those bloggers came from the US, the UK, and Australia. Aspie Story and Blogging Astrid were the only fellow Dutchies I’d found so far. I still hadn’t met a single autistic adult in person.

So when my psychiatrist offered me the chance to participate in a series of group sessions for autistic adults to learn more about autism, I thought that would be a pretty good idea. Even though the session subjects seemed to cover a lot of ground that I was already familiar with, I was looking forward to meeting other Dutch people on the spectrum.

The group consisted of me and three other women. I won’t go into details to respect their privacy, but what really stood out for me was the reaction when I told the group about my own experiences in coming to terms with autism, about wanting to be autistic because it was the only thing that felt like all my experiences finally made some sense. About redirecting my energy and efforts towards things that would help me cope, instead of things that would make me appear normal. Allowing myself to be more visibly autistic.

At those last words, the entire group gasped in shock.

I’m not joking. I was the only one there who thought it wasn’t actually all that bad to be stimming in public.

Throughout the session, that impression was reinforced over and over. People were asking “If I don’t do things like that, then maybe I’m not actually autistic?” Looking for things that would prove they weren’t doomed for the rest of their lives. Looking for hope that maybe some day they could be fixed and be normal. Only seeing the negatives. I felt like I was the only one emphasising the good bits, the strengths, the FUN aspect of autism, the connection with other autistic adults, the recognition and acceptance that comes from finally belonging somewhere.

It was heartbreaking. It was exhausting.

So naturally, I decided to attend another networking group for autistic adults in the evening.

Yeah. That bit where I talked about learning how to redirect my energy and efforts to cope? I was lying. I’m used to a lifetime of pushing myself to do things. To push through the exhaustion. So of course it made sense to go to the evening gathering as well. Because autistic people, right? I can be myself there, right?

Wrong.

There was a pub quiz. People told me, like they always do at pub quizzes, “How do you know all that stuff?”, with the that-is-SO-not-normal look in their eyes that I recognise so well. I had my Tangle with me and people asked why I was constantly fiddling with it. People made remarks about how nice it was that this evening was just for high-functioning people and then looked at me and noticed me rocking. Unapologetically. Smiling. And I could see them judge me. Rocking is for Rain Man types.

In a gathering of autistic people who all tried to outdo each other in how high functioning they were, I talked about going non-verbal, and how emotions often feel overwhelming, and how hard it is to take good care of myself by eating on time and keeping my house clean. I made them laugh and nod in recognition. I talked about the energy and frustration it costs to pass for non-autistic, and why. I talked about not passing even when I try so hard. I talked about all the things that I read on all the blogs I’d been reading since the start of my diagnosis.

And in the middle of a discussion about high functioning and low functioning labels, and how maybe we should look at what a person is actually capable of, one of them said to me that maybe I needed a time-out to calm down, because I was rocking back and forth so much. And when I said I was just focusing on the conversation, and not feeling anxious at all, he didn’t believe me.

I still can’t truly come to terms with the fact that this happened. It happened. In a group of autistic people. It was just so entirely different from the autistic community I had experienced so far. The online blogging community. The community I’d taken to be… well, NORMAL. With their acceptance. The explanations that made so much sense. The empathy.

What I’d taken to be normal for being among our own.

In reality, the blogging community – that I accidentally stumbled upon when researching ways to get diagnosed as an adult  – was completely different from the real life community that I’d hoped to find. And it made me realise. My ENTIRE perception of autism as something that is intrinsically part of me, with the good and the bad, the meltdowns and the laughter, has been shaped by autistic adults who write from a place of acceptance.

What a difference that makes.

Acceptance has made me different.

Quick update

I haven’t posted in a while. The reason for this is that I’m stuck on two things, both related to the second phase of my diagnostic testing.

Last week I had my first interview, together with my mother, about my behaviour in childhood. I am still processing what happened during that interview, and I haven’t gotten to the point yet where I can write about it.

Update! I’ve finished my post on the childhood behaviour part of my diagnosis, in case you’re interested.

My second interview is next week, and I’m working like crazy on getting some sort of grip on my thoughts so I’ll be able to present a coherent picture of how autism is affecting me at the present moment.

It’s hard work, but I think I’m sort of coping. Well, apart from pretty much not having left my bedroom for the past two weeks. Which is OK. I’m not going to push myself out of my comfort zone, there are more important things to focus on right now.

Hopefully I’ll be able to write about everything at length soon! In the meantime, here is a link to an animated kitty who purrs if you rub her belly.

flash-kitty-screenshot

http://s3.amazonaws.com/wbx-files/maukie.swf

Yay more pictures!

I’m getting addicted to taking pictures for the blog header! It’s a really nice challenge to look for things and colour schemes that would suit the overall blog theme. No rainbows this time, though.

This is the roof of the new bus station behind Amsterdam Central Station. The coloured panes will eventually spell out “Amsterdam CS”, I think. They’re not finished yet. I especially like the blue sky in the background here.

Close-up of a basket full of lobelia at the beer festival last Saturday.

Close-up of the multicoloured ficus plant I have in the front window. No idea what the official name is. It’s still alive and with my plant caring skills, that’s saying something.

The stained glass window in my living room. One of the reasons why I fell in love with my house.

Close-up of the Moroccan lamp in my hallway.

One of the pages from “The Ballooning Adventures of Paddy Pork” by John S. Goodall. One of my favourite childhood books, together with Eric Carle’s “The Very Hungry Caterpillar” and Dick Bruna’s “The Apple” (click on bekijk trailer, Dick Bruna is awesome).

Playing with pictures

So I’ve finally gotten around to creating some header images to liven up the place.

Some flowers I bought last Wednesday to celebrate one week of not smoking. I edited the photo quite heavily in GIMP to get the vibrancy of the colours, because apparently my camera hates vibrant colours and makes everything look washed out. The flowers are really that beautiful shade of orange/red. Although of course a lot depends on your monitor as well.

Picture I took some time ago, cracked safety glass. You can’t really see it here but when it’s in the header, you can see small colour refractions especially on the right hand side. Plus I like the spidery pattern.

Spices! Well, I love to cook, especially Mediterranean and Middle Eastern food. I really like the textures and colours in this picture, I wish you could also smell it!

A close-up of my bookshelves, one of many many bookshelves. I have a bit of a book problem. But who cares. These are pretty close in height and all paperbacks and I loved the progression of colours so that was a nice shot to take.

A close-up of my window sill. I have some vases and things standing in my window sill because I read somewhere that women are supposed to collect knick-knacks and put them in random spots to “make the space more personal”. So I’ve been experimenting with that. It seems to reassure visitors and I like the colours but it is a bit of a mess. The hands belong to a very pretty wooden statue from the 40s or 50s that I inherited from my grandmother. The number of times I’ve knocked that statue down and broken its neck… Clumsy, me?

I think the books and the window sill are my favourites because. Well. Rainbows. I really am helpless when it comes to rainbows. That’s why the gay pride flag is so awesome. And why autistic pride day is so awesome.

Some questions for you

Yes, you. The person who reads this. I have some questions for you!

I have a little bit of background in websites and internet and that sort of thing. And one of the things I’m always very focused on is usability, the art of making a website nice for the visitor instead of the owner. I mean, I’m not an expert, but I know enough about it to catch the most common mistakes and to help people build better websites. But I don’t have any knowledge whatsoever about blog usability. So, I figured, I’m just going to ask my awesome reader panel. 🙂

  1. Which of the following do you prefer?
    • A homepage with each post having a short introduction and a “Read more” link, which makes it easier to scroll through and see if there’s anything you’re interested in (this is what I have now)
    • A homepage with every post published in full (all information in one single glance)

     

  2. What would you like to happen when you click on a link to another post?
    • Open in the same window or tab, so you have to use the back button (this is what I have now)
    • Open in a new window or tab, so before you know it you have 15 windows open

    Links to other websites always open in a new window or tab, by the way. It’s just the internal links I’m curious about.

  3. What do you usually pay more attention to?
    • Categories and the top navigation menu (I don’t really have one at the moment)
    • Tags and the tag cloud in the side bar

     

  4. I sometimes use smaller version of images and photos inside my posts. How would you like to look at the larger image?
    • Open as a new page, with the top navigation still there (this is mostly what I have now, although I’d like to be able to add the right hand navigation as well)
    • Open as a “pop-up” gallery which you can close with the little X in the upper corner (I have this sometimes for posts with multiple images)

     

  5. Anything else that annoys the sh!t out of you every time you come here? I love honest criticism (yay! honesty! no unintelligible social scripts!) so please take this chance to unburden your frustrations.

I would love to hear from you all in the comments! And to make it even harder to resist, I’m going to call you all awesome again. I mean, look at this. YOU ARE AWESOME. 😀 *doing bouncy happy thing*