#ActuallyAutistic trending

[gorgeousjewel]

I feel I will be flamed for this but I really would like to genuinely understand.

The hashtag #ActuallyAutistic is trending this evening and I think I know what it means - it's for those who have had a proper diagnosis and are a supportive and collective group. (please correct me if I'm wrong)

What I don't understand is what do people who use this hashtag want to achieve?

What are others doing wrong (beyond funding, support, recognition etc..)?

What can I and others do better?

Do #uthenticallyAutistic follows think that there are clear divisions and that those described as "Neurotypical" have an easy/different life?

Genuinely interested and would love to know more - please help me understand

And this one from Sara Gibbs

twitter.com/sara_rose_g/status/1430429176427945985?s=21

@WhenZoomWasJustAnIceLolly

Educational accommodations are based on need not diagnosis as is DLA.

There speaks someone who has never had to navigate the system !

Au contraire. Here speaks someone who navigated the system without a diagnosis for years. But where a child does not qualify for a diagnosis (the context of this statement) then the answer is not to just given them one anyway, it is to address failures in the system that cause undiagnosed children to be left unsupported.

I do wonder as a parent of an autistic child how I’m supposed to get it right.

I've just been on Twitter and seen the #actuallyautistic crowd whipping each other into a frenzy about the research study. It includes trashing Chrish Packham and screaming that the researchers are nazis and TERFS!

^^ can't say I'm shocked 🤣 literal nazis and not a puzzle to be solved bingo?

The whipping each other into a frenzy makes me laugh - Nazis and terfs? It just goes to show that there is no such thing as "the autistic community" just as there's no "the NT community".

@OrangeSamphire - Thank you. That was well written and, based on my experience, all very true.

The lack of training for support staff is shocking, both in social care and in education.

Autistic behaviours are frequently labelled as ‘bad behaviours’. I’ve seen an autistic young person hiding in a toilet in a college setting, clearly struggling with sensory overload, with teaching assistants physically trying to haul him out of there whilst muttering to each other “He is just being lazy and doesn’t want to do his work”. And that is by no means a one off incident or the worst thing I’ve seen in any setting.

Autistic people behaviours are frequently viewed through a neurotypical lens and their behaviours interpreted in the same way.

And example is: “I’ll teach that person how to make socially appropriate eye contact and small talk , as that will aid them at job interviews”.

Rather than: “I’ll support this person so that they have the confidence to say ‘eye contact is uncomfortable for me because I’m autistic’ and I’ll teach them about reasonable adjustments and how to request them before interviews”.

One is about making the autistic person appear ‘less autistic’ so that they fit in with neurotypical norms.

The other is about acknowledging their differences and finding a way to navigate in a mostly neurotypical world. Why ask autistic people to change when neurotypical people could just be educated to understand instead?

If you’ve been able to get a diagnosis easily, you may not understand why it’s sometimes necessary and useful to self-diagnose or to diagnose your own child.

I would much prefer a competent professional to do this for us, but I don’t have the option til I’ve saved £2000.

It’s not remotely like diagnosing diabetes, as pp said. Not all autistic people have the same experiences or way of thinking!

What would be the problem is my child isn’t autistic and I believe she is? What harm would come to her?

@Greenmarmalade

What would be the problem is my child isn’t autistic and I believe she is? What harm would come to her?

Quite a bit, if you had shared this false belief with them.

Self ID is for idiots.

@AlfonsoTheMango

Self ID is for idiots.

Making stupid comments is for idiots.

@Greenmarmalade

What would be the problem is my child isn’t autistic and I believe she is? What harm would come to her?

What is she actually has a different condition and you are denying her the proper understanding, treatment, or community for that?

What if a bunch of people who didn't have autism started requiring all autistic supports and services to reflect their non-autistic wants/needs rather than those of autistic people because they identified as autistic?

In my area, there isn't actually any support for autistic adults and any further support eg PIP requires an awful lot of proof and also that autism impacts on your life eg eating, cooking, washing, moving around.

I'm trying to think what kind of support you mean.
I couldn't get a cea card or a carer ticket to the theatre without pip. Not even my diagnosis report helps.

I can get support in uni with a diagnosis but only after interview with a disability assessor.

There is so much variety in terms of how autistic people present and what our needs are. Some of us are sensory seeking (eg need radio on) and some of us need silence. So you could easily have a clash between the needs of two autistic people.

Unless it was 'everyone in the group must hold eye contact with me at all times' I can't think of an NT need that would clash in the way I think you mean.

It is extremely wanky when people who aren't autistic posture about being autistic. But far more often, someone isn't diagnosed because they're masking. I just heard of a psychologist making extremely daft comments about why he hadn't diagnosed someone. Not backed up by the literature at all. If you can afford a second opinion that's fab but some folk give up at that point.

There is so much variety in terms of how autistic people present and what our needs are. Some of us are sensory seeking (eg need radio on) and some of us need silence. So you could easily have a clash between the needs of two autistic people

We get this with me and DD2... I get very very defensive around touch I can't control (I'm OK with weighted blankets and stuff) and DD2 is a real touch seeker and will request to be squashed and gives cuddles with insane force to them. I focus on meeting her needs because that's what mums do isn't it (and her cuddles are still gorgeous regardless)?

I need to mask harder though - I've just had feedback from a placement I did and (ironically since it's somewhere with a lot of ASD users) the things I've been marked down on are all social-interaction and Autism-linked difficulties. Was just starting to accept that my brain is wired the way it's wired and then I get knocked back into check - I need to pass the course and pass the course well so I'll just have to perform to get through it.

Eye contact I learnt to fool a long time ago - I look at people's upper lips - it's close enough that it gets me by without being pulled up for constantly looking away from the conversation (especially from behind glasses). I remember friends commenting when I was about 13-14 that I kept looking away when I was talking to them - they were convinced I was eyeing up the fit boy behind us - but it's like my eyes are on elastic and just keep pulling away from looking at people - and I have to focus like mad on a tug of war to get them to pull back to look where I'm talking (and then I'm worried I'm doing an over the top slightly stalkers starey eye thing - this internal monologue/tug of war goes on constantly unless I cheat with the top lip thing).

@CoffeeWithCheese Tip of the nose also works well for the “avoiding eye contact” thing.

I tend to find that NT people can get fixated on how things are done. If someone needs me to get information from a third party, why does it matter whether I call them or email them, as long as I get what’s needed? But for some reason it seems to.

www.authenticallyemily.uk/blog/spectrum-10k?fbclid=IwAR2kKmhAqqycex3dOo91mvdEUG_LmP6dqzDRvpMnFWpJFCm2Ar_d3HSB7qU

I feel this is a clear summary of some concerns to do with the DNA sample research

• Tibtom

Greenmarmalade
What would be the problem is my child isn’t autistic and I believe she is? What harm would come to her?
What is she actually has a different condition and you are denying her the proper understanding, treatment, or community for that?*

True.

But I am getting no support from the nhs. None. They say because she’s not a suicide risk or risk to others, she’s not eligible for help in our region.

I am desperate for her to have a proper assessment.

In the absence of this- what would you do?

As a teacher, I have known many children with autism. I’ve read a lot. My siblings are autistic. Im pretty sure she is, but I can’t access a proper diagnosis/assessment.

@Tippexy

• Tippexy

Greenmarmalade
What would be the problem is my child isn’t autistic and I believe she is? What harm would come to her?
Quite a bit, if you had shared this false belief with them.*

Please explain.

@inmyslippers

Can I recommend the following Facebook group

When you're tired of autistic people but you are autistic people

It's an actually autistic uwu free zone

I used to love this group but when they started using the R word loosely and piling on anyone who disagreed with its use, I left. Then there were loads supporting self ID, the opposition of which was what led me to the group in the first place.

It became more uwu than the mainstream groups

Off-topic, but what’s “uwu”? I tried Google but all I could find was a reference to a “cute” emoji, which doesn’t seem relevant here.

In the absence of this- what would you do?

What I did was what you also have to do if you have a diagnosis: focus on needs. What does your child struggle with and how should this be supported? Ask educational psychology, speech and language therapy, occupational therapy (as appropriate) for input. There is no reason why strategies that work for autistic pupils should only be used for (diagnosed) autistic pupils if they also work for others. I do understand that a diagnosis can make it easier to persuade teachers but it can also put your child in a box - they 'know' about autism and 'this is what I do with autistic pupils' which may not be what your child needs.

Off-topic, but what’s “uwu”? I tried Google but all I could find was a reference to a “cute” emoji, which doesn’t seem relevant here.

^^ autistic flavour. Usually self diagnosed, has multiple genders. Will throw around the usual phrases "not a puzzle to be solved" everyone is a literal nazi. Pastel coloured hair. Puts their multiple mental health issues in their bio along with pronouns

[quote Greenmarmalade]@Tippexy

• Tippexy

Greenmarmalade
What would be the problem is my child isn’t autistic and I believe she is? What harm would come to her?
Quite a bit, if you had shared this false belief with them.*

Please explain.[/quote]
You really can’t imagine any problems that would stem from telling a child they had a diagnosis (of anything), when in fact they didn’t? Really? Really?

@inmyslippers Thank you! I know the type you mean, just didn’t realise they were called that.