Introducing Ragnhild….

Ragnhild I H Jordahl is lead singer in a band called Soda Fountain Rag.

The band consists of

Ragnhild on drums and vocals

Moa Paulin on keys

Alessandro Paderno on guitar

Fabio Benni on bass

How would you describe yourself?

I am an autistic, non-binary, and very geeky person. I am trying to become a philosopher (currently working on my PhD), and I have a music project which is called Soda Fountain Rag. Soda Fountain Rag has been going on in some shape or form since early 2006, and currently it is a band with three people besides myself.

I find describing myself a really difficult thing to do, as I do not know what people might find interesting. I am a cat person. I love the moons of the solar system. I am scared of driving, but working on becoming less scared. I love headphones. I am scared of being an adult. When I think about my school days I get nauseous. I enjoy being an adult because that means I never have to have a gym class again. I contradict myself. I enjoy and appreciate things being “OK”, because OK is far above how bad I know things can be. I live in the countryside outside of Bergen, Norway, with my husband and our cat. I am never lonely, and never bored. I like to climb trees, but finding good trees to climb is hard.

When did you first realise you were autistic?

It was first suggested to me by my then psychologist in January 2015, after I had been very ill for a long time. I was just being shipped from psychologists to psychiatrists and back again, and no one really did a proper job, until this one person asked me whether I had heard about Asperger Syndrome, and said that she suspected I had that. I reacted to this by going to the library, because I didn’t have enough information about autism to really know what she had suggested. After reading about Asperger’s and autism for a short while I started to recognize myself in the descriptions I read. The stuff I struggled with, and the stuff I had struggled with in the past suddenly started to make sense. It was a wonderful feeling! After this we started on the path to a formal diagnosis of Asperger Syndrome (still a diagnosis in Norway where I’m from). In the beginning the Asperger diagnosis was important for me, but after some months had passed I settled for autistic as my identity. Discovering other autistic people, and seeing that there is a whole autistic community out there has been truly wonderful for me. Both because it is lovely to meet people with similar experiences to mine, but also because this community teaches me a lot. There are still lots of things about autism I do not know, or do not understand, and I want to learn more. Lately autism in itself has been a special interest for me.

How do you think being autistic has impacted your art?

I think it has impacted both the art in itself and also the fact that I am an artist, and that I feel I belong on a stage. Particularly in childhood, when life at school was hell, the life on stage as a dancer was very important to me. This was a way of interacting with people which was scripted, which had distance, where everything had its place and made sense, and where I could pretend to be someone else, someone with different properties. When I was dancing I was worth something. This was not the case in school. I am forever grateful to my dance teachers for giving me the feeling I was worth something, and equally disappointed in my school teachers for the opposite reason.

The same things apply now that I am a musician. I think it can be hard to understand how someone who is not very competent on human interaction and who has pretty grave social anxiety can thrive on stage, but I think it is connected to the fact that the concert situation is mine, and that when I am on stage it is a situation I can control. You cannot control an ordinary conversation in the same way. And even though the songs are written some time ago, and the set list is decided, it is still communication, and I still have something important to say to my audience in those moments the concert lasts.

In addition, I think that being autistic both influences the songwriting process, and also the topics explored in the lyrics, with songs like “Lovesong for the Geek”, and “I sit and wait for what” for example. I need to be hyperfocused when writing songs. I want the process to be fast. Songs which are not more or less finished in one day will most likely never be finished.

It is of course also the case that it might have been easier to travel around and play concerts with a neurotypical brain… So in that sense being autistic does not only influence things in solely positive ways. I assume it is practical to be able to contact promoters, to not be afraid of meeting new people, and so on. However, I have wonderful people in my band which makes it possible for me to have gigs organized without me being the one trying to organize these things.

What advice would you give other autistics who wanted to develop their creative side?

Always do something you love doing. Don’t try to make compromises with your art to fit a particular public. I have very marginal success with the stuff I do, but I was able to find a tiny group of people who like the stuff I make, and I would rather mean something to this tiny group than try to find a larger audience and then fail at that…

Here’s a link to a video of the song Lovesong for a Geek played in London 2016

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“I have some autistic traits, but….”

Something I keep coming across is people saying things along the lines of “A lot of people think I’m autistic. I do have some of the traits but….” And then they list some trait that is considered “autistic” but that they don’t have.

“I am too social.”

“I’m an extrovert.”

“I have no problem with eye contact.”

“I don’t stim.”

“I don’t like routines.”

There are two points I want to make about this phenomenon.

First of all, are you sure?

I thought I didn’t stim. I had a very narrow definition of stimming and didn’t realise things like rubbing my clothes, picking my scalp, biting my lips etc were all stims. A lot of us have “hidden” stims. We tone them down, cover them up, or go for more socially acceptable ones such as biting our nails. This can either be deliberate, when our more obvious stims have been shown to be frowned upon, but also can be unconscious. Stims are as broad and varied as we are. So, you may think you don’t stim, but actually you do.

Same goes for things like socialising. You may think you socialise well, and indeed that may be true. But you may need more “down time” after than a non-autistic person. You may think your social issues derive from tiredness or depression rather than autism. But an extroverted autistic person may present exactly as you do. You just haven’t compared notes with one.

Secondly, autistics aren’t a monolith. We don’t all have every single trait.

Some autistics make eye contact, others don’t. Some like routine, others don’t. We are as varied as any other sector of society. We don’t all have every single “autistic trait”. Just because you are missing a few doesn’t mean you’re not autistic. Also, the criteria of “traits” has been shown over and over again to be flawed. The push towards expanding out to “PDA traits”, “female traits” etc shows this. So many autistics are being missed due to the narrow focus of the current criteria.

So, again, I re-iterate a point I have made many times. If you think that you’re autistic, then you probably are. And if you’re not sure, then I suggest you do more reading and self-reflection and you will soon find your answer.

Unrested

I am tired.

I am weary.

I am fatigued.

I am bloody exhausted.

There’s this tiredness those of us with chronic illnesses and disabilities get. Medically it’s referred to as “fatigue”, but it is so much more than that.

Too tired to eat, to drink, to move, to think.

Imagine the tiredest you’ve ever been. And multiply by infinity.

I don’t have CFS/ME, but my conditions are heavily linked with it. The fatigue felt is probably very close. And so I identify very closely with that community.

And a member of that community, Jennifer Brea, has made a wonderful documentary that really captures the exhaustion I feel.

I have written about this documentary before. And will again. As it covers a lot of topics that affect my life.

It’s called “Unrest” and I watched it on Netflix. And I really recommend it to everyone and anyone. Whether directly effected or just an ally.

Please watch it.

While I lie here, too tired to get out of bed, and wait for this day to be over.

Revised thoughts about PDA.

I have written before about Pathological Demand Avoidance. I fit a lot of the criteria and see so much of me in it. But, having done more reading, as I always do more reading and never think I know it all, I have changed my views on it.

As with many people, I hate the name, especially the “pathological” part. But I’ve always hated the name, and the medicalisation of the group of people labelled with PDA, so that’s not news.

What has changed is that I can now understand the objections that some prominent autistics have to not just the label but also the framing of PDA. This piece by Damien Milton is very well written, though may need reading more than once to fully understand the points he’s making.

And so I now realise that PDA is not a “subset” of autism. And neither is Aspergers. And I no longer think you can distinguish between the PDA and Aspergers profiles. Yes, my daughter fits a lot of the criteria for the former, and my son the latter, but there are much more overlapping similarities between them than differences.

I wrote before about why I hate distinguishing between Aspergers and Autism. And it was hypocritical of me to then do the same to PDA. They are all just flavours and hues of autism.

I do understand why PDA, “atypical” Autism, “female” autism etc were conjured up. The criteria and checklists for “typical” autism miss so many of us. But instead of creating new categories of autism, new labels etc, I feel it would be more useful to have better, more inclusive, criteria.

I had thought PDA would be useful for explaining my daughter’s behaviour to her teachers. But have noticed I’ve never used the term PDA when talking to them. I just explain her traits as her personal autistic nuances. It does take more explaining as she doesn’t present as “typically” as her brother. But they are both just as autistic as each other, and just as unique. Like all autistics.

Broken Heart

Symptoms

• Everything hurts

• Constant headache

• Spontaneously bursting into tears

• Burning eyes

• Ache in your chest

• Nausea

• Struggling to breathe

• Constant questioning of him

• Constant questioning of yourself

• Rethinking every nuance of every word said

• Hating yourself for letting it happen

Treatment

• Allow yourself to grieve

• Take it one day at a time

• Detach

• Talk about it

• Get rid of any mementos

Prognosis

Good chance of healing once treatment

plan adhered to and given enough time

The Real Autism Epidemic [TW suicidal ideation, death, murder]

People like to scaremonger that there is an “Autism Epidemic”. That the numbers of autistics is rising wildly, like some sort of tsunami. When all that’s happening is that more of us are being recognised for who we really are.

But I do think there is an epidemic in autism. Just not of that nature. The real epidemic is the number of autistics killing themselves, or considering doing so.

Several studies have shown that autistics have a lower average lifespan than the general population. Although some of these can be accounted for due to factors such as epilepsy and other co-morbid health conditions, through accidental drowning, even to murder by parents and others, a large proportion of these earlier than average deaths are due to suicide.

We are in crisis. I am in crisis, my kids are in crisis, most of my friends are in crisis. I hardly know any autistics who have not contemplated suicide at one point or other. Some of us think about it daily.

Just as an example, I conducted a Twitter poll yesterday, to gauge how many of my autistic respondents had thought about suicide. The answer was 90%. And over a third of those though of it daily.

That is an epidemic if there ever was one.

We need more research into this, into the causes (the main one, I would imagine, would be simply living in an ableist society) and into how to prevent these thoughts and/or actions.

Looking at my poll results makes me sad. More than sad, devastated.

So, I’m off to look at photos of puppies for a while.

“You don’t look sick.”

Today a neighbour invited me in for a coffee as I was walking by. I’ve known her ten years, she’s really nice and friendly. Has even babysat for us a couple of times. And I know she’s always keen for a chat as she lives on her own. So, in I went.

We talked about the usual things. Mainly about the painters we had recently, and various builders etc. Her house is identical to ours, originally, and she needs a few repairs done. So, just friendly chit chat really.

Then she asked if I had to go back to work soon. Turns out she assumed I worked from home. Told her I was too sick to ever work again. Cue raised eyebrow and “You don’t look sick”. I could tell that she didn’t mean it in a “you’re a faker” kind of way, but rather as a compliment. That I looked well for a chronically ill person. That I looked better than her daughter.

Turns out, her daughter has fibromyalgia. So, I told her about EDS. She was very interested, as she and her kids are all hypermobile. She has a congenital hip deformity. Her grandson from another daughter is autistic. Putting two and two together…is always fun.

We discussed how you never really know what goes on behind closed doors. She told me her daughter is mostly bedbound. I told her I was too. Maybe not as badly, but enough to really appreciate the view out my bedroom window. I told her about my kids, about the autism and the EDS-related health issues. And lots of other things going on behind the scenes.

She, of course, would never have guessed. Because I look fine. I put on my mask. I’m nice and friendly to all the neighbours. I get out and about and leave the house most days, looking fine. I manage without my cane most of the time. My mask is still intact. I don’t look sick.

But I am. When she heard the extent of it all, she just shook her head. “You certainly have a lot on your plate. I don’t know how you manage. I guess you’re used to it.”

I guess I am.