[Edit: at the time when I wrote this post, I mistakenly thought of myself as an extrovert. I was incorrect in this assessment of myself – as I explain here. This is a big, long, journey of self-discovery, readers! However, in all other respects, the words I present below are as true as they ever … Continue reading Information, social communication, and empathy – let’s look at a little closer…
[Author's note, 27 September 2017: looking at this post over a year on since writing it, and I HATE some aspects of it. I HATE the term "differently abled'. I'm disabled. And I'm happy with that. I leave it up as is, because this was my perspective at the time.] It's coming up to a … Continue reading Positively differently abled…
Earlier this week, I had a missed call on my mobile from a private number. This washed waves of anxiety over me. I'd asked my local NHS adult autism service to put me on the callback list in the event of any appointment cancellations - a year's wait from the date of referral for assessment (the … Continue reading And just like that, I’m official.
“It’s time to accept what is, and work on making the world a better place. The time has come.”
I can’t begin to express how important, and true, the messages are in this post. In a world where my daughter and I face a year – or longer – of waiting for diagnosis, then the prospect of very little post-diagnosis support, and where, in other countries, the ability to get assessed is based on the ability to pay, something needs to change. We are here. We are valid, and we need support to be, as Rhi puts it, “the happiest versions of ourselves.” The funding needs a refocus.
Can we talk about a cure?
There’s a real problem when it comes to Autism, and it’s not to be found in us autistics. It’s to be found in the focus of funding.
Time and time again I see people struggling to get diagnosed, and then struggling when there is so little real support post-diagnosis.
The vast majority of funding appears to be spent on finding a cause for Autism, and studying what it really means neurologically.
I’m not saying those things shouldn’t be funded, but that leaves a tiny percent left for actually supporting people.
I’ve recently seen a disturbing comment by a parent of an autistic child, berating an autistic adult for calling themselves autistic, “You wouldn’t call a child with cancer a cancer child!” is the argument.
I wonder if they know how hurtful and offensive that is? I wonder if they realise that they’re comparing a…
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[Edit: since writing this post, I have come to the realisation that I was wrong in my assessment of myself as an "extrovert", having misunderstood the definitions. However, I leave this post here as is – I'm still going through the process of learning about who I am, post-formal diagnosis, and this was me back … Continue reading The Atypical Introvert?
I meant to share this wonderful post a little earlier than this – have only just got round to it! So much of this resonates with me. Carrying my little boy helps me feel calm and safe too.
Babywearing is a fantastic tool for parenting an autistic child. It allows us to meet the world where it is without fear for safety in crowds or over stimulation. Both are still a factor, but wearing E makes them easier to manage. This is all really great, and I’ve touched upon it before in the post titled Sensory Overload.
Jade, A, and E on the train at Busch Gardens
But how does babywearing affect me as an autistic adult? It’s actually helped me in a few ways as a parent and as an individual. As a parent, it makes going out seem possible. Outings are overwhelming and exhausting. I typically limit myself to one errand a day as more than that has me burnt out for days after. When I need to take the kids with me to do these errands, even thinking about the day’s tasks feels like…
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A couple of months ago, I was indulging in one of my kitchen disco sessions. The husband's preference is to select individual tracks to listen to, whereas I tend to go for full albums (I'll explain why in due course). I had The Clash's London Calling playing whilst cooking. Hubby asked me the name of the … Continue reading Why I “can’t possibly be Autistic”, Reason #1: I don’t do ‘geek’ right
There are often times when I envy my daughter and other children her age. Autism or no autism, it's not considered socially unacceptable for a preschooler to spend a lot of time dancing and twirling around, even in public. If I could, I would probably spend most of my time dancing. I don't really mean … Continue reading It’s no good. Start the dance.
You know that validation thing I talked about in my last post? This, from the autnot blog, was a really pivotal post for me. I’d already been considering that I might be autistic, and by this point my GP had agreed to my request for a referral to the local adult autism service, but reading this crystallised my conviction that following this path was the right one.
You don’t look autistic.
Yes I do.
You don’t act autistic though.
Yes I do.
Yeah, but you’re not like “properly” autistic.
Yes I am.
You can make eye contact.
Yes I can.
You don’t flap all the time.
I do at birds.
You flap at birds?
I flap at birds.
Why do you flap at birds?
It would be rude not to wave at them when they wave at me.
That’s a bit weird.
But you don’t do all that proper stimming and stuff, do you? Or do you?
Every day. Most moments of every day. See this?
Looks like a tiny bead mat.
Yup. I made it, I made lots of them, for when I lose them. I get distracted easily.
Can I have a go?
Go for it.
It feels nice.
It feels essential.
Why do you do it?
I’m an addict.
But it’s not…
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My husband doesn't share my enthusiasm for social media. That's fine; there are many people who see it all as vain, vacuous, narcissistic, soul-sapping nonsense. And certainly, there is much of it that is. But my husband's chief objection to it is that he can't fathom people's need for constant validation. People have always needed validation. … Continue reading Validation