Children can understand “difficult topics” better than you think.

My son and I were on one of our nightly walks last night. Out of the blue he said to me “you know, when you think about it, we have a good life and a lot of it is down to luck. Because we don’t have black skin we don’t have to face racism”.

I told him this is called “white privilege”.

We then talked about other areas of privilege he had. Like male privilege. He has always hated the fact that 50% of people automatically have privilege that the other 50% don’t have. I decided not to correct him on exact numbers if you factor in non-binary genders etc. Not that he wouldn’t understand but he doesn’t like having his flow interrupted when he’s on a good rant. He absolutely hates gender divisions based on clothing for example and will express this very loudly in clothing stores!

So we had a great chat about privilege, about intersectionality, and all that “difficult” stuff.

And I thought back to when I tried to discuss these same issues with grown men. And got shouted down and blocked.

It’s just pure ageism to think that we can’t have these conversations with our children. We can, and we should. And I’m glad I did.

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Self-identified and Proud Âûtistic.

Today I shared a FB post advertising an adult ASD assessment service in my city. I added that I personally had no wish to be formally diagnosed but was sharing it in case it helped someone who did want a formal diagnosis.

And some random stranger took offence and instead of just scrolling on, they left an angry comment.

So, I’ve decided to analyse that comment, sentence by sentence, and point out why it is just plain wrong.

I’ll write out the original comments in Bold and my answers in italics for clarity.

Undiagnosed “autistic”, eh?

Yes. So? Given that you won’t have been diagnosed at birth, I assume you too were “undiagnosed” at some point. Did that mean you weren’t autistic at that time? One minute you aren’t autistic, the next you are given a magical piece of paper and suddenly you’re autistic? That’s not how it works. If you actually care about why I have chosen not to go down the diagnostic route, I wrote about it here.

Recently I have become even more radical in my views on the diagnosis of autism. I believe autism has no place in the DSM as it’s not a mental illness, or any other kind of illness. Did you know the DSM once listed Asthma and Homosexuality as mental illnesses too?

There goes the credibility, no matter what “research” you churn out.

Why the inverted commas around the word research? I don’t “churn out” research. I don’t conduct research. I simply write my thoughts in my blog and recently on my Facebook page. And I’m not seeking credibility or validation or anything like that. I’m simply writing blog posts because I like writing blog posts. If you don’t find them credible then maybe don’t read them?

Makes a mockery of those of us who genuinely struggle with ASD.

My struggles are genuine. But I don’t “struggle with ASD”. I struggle with ableism and attitudes like yours. I’m sorry that your self esteem is so low that you take my blog posts personally and think I mock you.

At least you admit it.

Why wouldn’t I? I have never hidden it. There is no shame to not having a formal diagnosis. Most autistics don’t. Those who are privileged to have access to gaining a formal diagnosis are merely the tip of the iceberg when it comes to how many autistics exist.

By all means, be an ally.

Oh thank you so much for bestowing upon me the honour of being able to claim to being an ally. Aka Fuck you.

Just don’t title your page “Autistic Zebra”.

Is that because I don’t have a formal diagnosis of being a zebra? Where do I go for one of those, the zoo?

It is misleading to those in the Autistic Community.

Which Autistic community? Yours? Or mine? Because in My Autistic Community self identification is seen as valid. So, you’d be the one who would be seen as misleading them if you try to insist that they think it’s not.

Get a formal diagnosis and you won’t come up with resistance.

You really believe that? Plenty of autistics who have a formal diagnosis are met with resistance. Told they don’t look autistic. That they aren’t autistic enough. That they need to plaster their diagnostic papers all over the internet to “prove it”.

Many other conditions mimic Autism…

Autism is not a condition. It is a neurotype. I sense internalised ableism from this comment.

…and that is why professionals have very specific criteria to diagnose Autism.

Professionals don’t understand a thing about autism. The diagnostic criteria are biased towards boys and are just plain wrong. This is common knowledge at this stage. Autism is misdiagnosed and underdiagnosed in epic proportions. So forgive me if I burst out laughing at that comment.

So, there you have it. I managed to get a whole blog post out of that so thank you random commenter.

Of course, my reply on my FB page was a lot more succinct and to the point. “Fuck off”.

App Review: Daylio

So, in my never ending quest to improve my mood and escape the black hole that is my soul, I downloaded an app I randomly came across while trawling the App Store.

Daylio is a daily mood tracker/journal. And it’s genius. It only takes a few seconds to capture your mood and what may have triggered it. You don’t need to write a word if you don’t want to as it’s based on icons. But there’s space to write if you want.

And it does out lovely graphs and images so you can spot trends.

There’s a pro version for a one-time fee but I haven’t bothered with it (yet). The free version is very customisable as it is and so far does everything I want.

Hopefully I can keep up the habit of going it several times a day. I’ve set it to send me daily reminders. And let’s see what patterns it uncovers. So far, it’s picked up that baking lifts my mood!

Yes, Mr. Larkin, you are a racist.*

*Some people may argue that Irish Travellers are not a separate race and so the word racist doesn’t apply. I disagree with this. But if you prefer to use the term “anti-Traveller bigot” then that’s fine by me.

Yesterday I read a “Letter to the Editor” in an Irish newspaper. It was written by a Galway city councillor, Mr. Noel Larkin. And it is a total and utter disgrace that it got published. Sadly, the views expressed in it are common amongst settled people and demonstrate just how badly discriminated against Irish Travellers are.

The letter itself is very long and I haven’t had the energy to write it out in full, though I’ve attached a screenshot of it. And will be quoting out of it.

He has a problem with the recommendations of an Expert Report published last week with respect to Traveller housing needs. He fails to mention that councils legally have to develop Traveller Accommodation plans under the Traveller Accommodation Act 98 yet since then have continued to fail to implement them and underspent their Traveller Accommodation budget year on year. This led to Traveller organizations calling for a review of the Traveller Accommodation Act which gave rise to the Expert Group recommendations. Traveller Accommodation cultural needs are not being met. Traveller specific accommodation is not being provided. Instead Travellers are offered houses which they don’t want and which aren’t suitable to meet their needs. He believes Travellers ought to be discriminated against due to several “problems” he had identified occurring when Travellers are housed in local council housing.

Problems associated with Travellers being housed in some areas are: anti-social behaviour, roaming horses, green areas being used to feed horses, sulky racing, feuding traveller clans, scrap storage, destruction of properties, and many more.

Ok, so let’s break down these “problems” and see if we, as in settled people in partnership with the Traveller community, can come up with solutions to them.

Anti-social behaviour:

Ugh. What exactly does that mean? It’s a very vague term used when people don’t like how others behave. The thing is, anti-social behaviour is not exclusive to Travellers. It’s something that occurs everywhere. We all have neighbours who make our lives hell. Singling out Travellers like this is discrimination.

Roaming horses:

This one is easy. Build them stables. Travellers and horses belong together. Horses are a huge part of Traveller culture. You cannot expect Travellers to give up their horses just because you give them a council house. What are they expected to do with their horses? Give them away? Have them put down? Their horses are more than “just” a pet. You can’t then go and blame them when they literally have nowhere to keep their horses. So, give them stables. And before you go on about the land and money that would cost, think about something that’s part of settled Irish culture. The GAA. Plenty of public funding, and land, goes to GAA clubs. If we can find those, why not stables for Travellers horses? In fact, having stables and horses on public council estates would benefit the entire community. Settled and Traveller children could bond over their love of horses. Travellers could give horse riding lessons. My sister has an intellectual disability. She benefits a lot from working with horses through an organisation called Festine Lente. Some autistic children benefit from equine therapy. There is no reason why Travellers can’t be trained to provide these services. And to run Community Stables that benefit everyone.

Green areas being used to feed horses:

So, give them pastures to graze their horses on. Again, alongside the Community Stables. Fenced off green areas dedicated to horses. And provide grants for hay during the winter.

Sulky racing:

What if we celebrated sulky racing? Created special tracks for racing on. It could become a huge sport. Sulky racing requires huge skill and athleticism. Could you imagine if it became an Olympic sport? We celebrate indigenous Irish sports through the GAA. Why not sulky racing?

Feuding Traveller clans:

I have a sister who lives in Waterford and is friends with Traveller families there. Her husband is part Kurdish and so understands about feuds. He has taken part in a few feud fights, helping out his Traveller friends. Because they are part of the culture in a lot of the world. He grew up in a similar culture. In the same way that blood feuds are still an issue in parts of Turkey, nobody is denying that they are a problem for Traveller families. Also feuding happens in the settled community here too. For example there are well known feuds between rival criminal gangs in Dublin and elsewhere. Also, to a lesser degree maybe or at least less visibly, I know many settled families torn apart by feuding over inheritances. But the solution is not to simply say “why can’t you all just get along?” These things take time. An awful lot of time. They take mediation. They take dialogue. The root causes of the feuds need to be worked on. Later on, Mr. Larkin states that Travellers shouldn’t get to refuse a council house based on another Traveller family that they are feuding with living in the estate already. So, how is he proposing to reduce feuding if feuding families can’t engage with each other in neutral spaces? If they are forced to live cheek by jowl before they are ready to make peace?

Scrap storage:

I admit I know very little about scrap storage. But I imagine that sheds could be made available if outdoor storage is unhygienic or unsightly. There is a scrap metal business operating out of Galway Docks. It’s been there for decades. It is very unsightly and the rust particles in the air fall on nearby boats as a fine dust that’s hardly healthy. Why doesn’t Mr. Larkin campaign to get this business closed or moved if he’s against the storage of scrap?

Destruction of properties:

What exactly does he mean by this? I’ve seen some photos of council houses “destroyed” by conversion into makeshift stables. Is this what he is referring to? Because Community Stables would solve this problem. Travellers are not “destroying” properties for fun. They are simply doing the best they can with properties that don’t suit their needs. Instead of condemning them for doing so, why not try to find out the underlying reasons it’s happening and try to solve those?

And many more:

Those words are so vague as to be meaningless. I can think of “many more” problems. Not with Travellers but with Mr. Larkin and his gang.

The solutions I have presented here are merely ideas I’ve thrown out off the top of my head. To show how it’s not an unimaginable feat to accommodate the needs of Irish Travellers. Obviously the only people qualified to come up with solutions that might work are Irish Travellers themselves. Unfortunately their ideas are rarely listened to or acted upon. Has Mr. Larkin ever sat down with Traveller Activists and actually listened to them? He’d be better off doing that than writing incendiary rubbish such as this.

He then goes on to demand an apology by Traveller activist groups to the settled community for “branding them all as racists”. I’m sorry but all settled people are racists. This is simply a fact. Yes, even settled people who are from families that are friendly towards travellers, like mine was. Settled people grow up surrounded by a culture that discriminates against travellers and we are all influenced by this whether we like it or not. All we can do is actively work towards being less racist. And we can’t do that if we deny our inherent racism.

Here are more choice words by Mr. Larkin:

Travellers are now being given every opportunity to be housed and to be integrated into society. But some choose to reject these opportunities and instead choose a life associated with a culture which may not blend itself with the settled community way of living.

Travellers, like all minorities, should not have to “be integrated into society” in order to be accepted. Integration is not the same as inclusion. They should not have to give up their culture, to be made to blend in to settled culture. It should not be up to Travellers to lose their identities, their language, their accents, their way of being, just to have access to housing.

He goes on to say:

Traveller accommodation will only be tolerated in settled communities when the major problems associated with Traveller accommodation are identified and adequately dealt with.

Let that sink in. “Tolerated”. “Dealt with”. This is not the language of acceptance. This is not the language of friendship. This is can basically be translated as “change everything about yourself, and we may deign to tolerate your presence”. As an Autistic person, I’m all to familiar with this rhetoric. Is it any wonder the suicide rates in both the autistic and Irish Traveller communities are at epidemic proportions.

Ironic that his parting words are “Fairness and equality for all is required!” It is obvious he has no idea what those words mean.

There is no Autistic Community

No sooner had I written this blog post about The Autism Community vs The Autistic Community, then I realised I’d made a grave error. I’d mentioned The Autistic Community as of it were a unified thing.

But of course it’s not. Like every group of people that numbers in the hundreds of thousands (or in the millions?), it cannot be considered a single entity.

Because in reality there are many Autistic Communities. Each a group onto its own. Some groups get along, some don’t. Some don’t know of the existence of the others.

There are large groups, small groups, splinter groups. There are Aspie supremacists and other groups I’d rather didn’t exist. There are groups that rally around a central figure. A leader, a guru, a bully. Groups who bully, who accuse those they bully of being bullies. Being Autistic doesn’t immunise us against infighting. That’s the painful truth.

Sometimes it takes years to untangle who said what about whom. Sometimes we find we have friends from two groups who hate each other. Sometimes they ask us to chose between them.

Which Autistic Community do we belong to? Do I belong to? My autistic community is my group of friends. Of supporters. Of allies. My autistic community is not The One and Only Autistic Community. Because there is no such thing as that.

August 8th is Autistic Dignity Day.

Today is August 8th. And the very first D-day. That is, Autistic Dignity Day. Today is about so much more than being proud of who we are. It’s about standing up and demanding that people respect our dignity.

Standing up can be difficult for a lot of Autistic people to do. Both literally (due to physical disabilities) and figuratively (due to survival instincts). And I’m certainly not trying to put pressure on anyone who cannot do so. It can be safer to hide behind the mask. It can be a life-or-death matter for some. Or a career-and-income saving measure. Or a response to trauma.

But just as with the #TakeTheMaskOff campaign, it can be life-changing in a positive way to declare “I am Autistic. I have Dignity. I have Autonomy. I deserve and expect Respect. I believe in Empowerment. I DARE to be Âût.”

We can no longer just wait around for the world to give us these things. These human rights. The time has come to demand them. To fight for them.

And fundamentally it all starts with Dignity.

The first sentence of the United Nations Universal Declaration of Human Rights states “All human beings are born free and equal in dignity and rights“. But what, exactly, is Dignity?

Dignity is the right of a person to be valued and respected for their own sake, and to be treated ethically. 

It can be a confusing term for sure, but I found this great article that explains it clearly. The article ends with these words:

The idea of dignity is fundamental to how we regard ourselves. It’s something that connects people from all kinds of cultures and beliefs, and which has ultimately led to the universal recognition that we need to protect and realise this dignity for each and every person. We do this through human rights.

So, today, on Autistic Dignity Day, we are demanding that our human rights are recognised, starting with the right to Dignity.

How pain amplifies my senses.

Right now I’m in the middle of a huge pain flare. Specifically a headache that’s actually two headaches. A TMJ based headache and a neck muscle based headache. So, what I’m writing about is not caused by a migraine as I know those can effect senses but in a different way.

Anyway, rather than curling up in a ball in bed like I ought to and want to, I’m attempting to get on with my day. And what I’ve noticed is how my senses are heightened in the extreme.

I can hear every single noise and they all bother me. Even things I usually can filter out, like the clock ticking or cars going past the house.

I can feel my clothes on my skin. Every tag, every seam. I want to rip them all off.

I can smell every smell. Most are bad. Like the bin that I really need to put outside.

I can see everything in great detail. Yet also with a weird effect like things are vibrating. And even dimmed lights hurt me.

I am trying to drink some water but it just tastes too bad. I’ve never really liked the taste of water. We have a water filter and yet I can still taste it. Normally I can ignore the taste but not right now.

It’s like a feedback loop. The pain intensifies my senses. My intense sensory reactions intensify the pain.

Only thing for it is to get into my pyjamas and curl up in bed in a really dark and quiet room.