Discover and read the best of Twitter Threads about #Autistic

Most recents (24)

Sometimes it's hard to be the parent my #autistic son needs me to be, & I’m always learning about best & better practices. But I wish the research that could help him was better, too.

This is going to be a thread based on a recent @AutismOAR post:

researchautism.org/striving-to-be…

1/
@AutismOAR How is it that my #autistic son is nineteen years old? How is he not still the cute little dude who used to fit on my lap; how is it that he is now so much bigger than me that I am now wearing his hand-me-downs? #parenting #autism #Neurodiversity

2/
@AutismOAR Time flies just as fast when parenting an autistic child as with any child, which is a truism I wish I’d been told when my son was diagnosed as autistic almost sixteen years ago. What else have I discovered about raising an autistic child? 3/
Read 22 tweets
Today I want to talk about how ‘Autism Warrior Parents’ Harm Autistic Kids. These thoughts are from an evergreen article I wrote for the dearly departed Establishment: medium.com/the-establishm…

This is going to be a thread.

#autism #parenting #Neurodiversity 1/
Parenting approaches differ, but mostly, everything we consider “good parenting” fulfills two basic needs: It makes children feel safe, and it makes them feel loved. Parents and non-parents alike tend to scorn any parenting approach that doesn’t meet these goals. #autism 2/
…That is, unless the kids in question are #autistic—in which case parents are too often encouraged to pursue approaches that traumatize & alienate their kids. I call these types “Autism Warrior Parents,” & people caring for autistic kids can learn a lot from their mistakes. 3/
Read 46 tweets
Why I class #Autism as a disability, and also why I have no problem with you if you don't.

A thread. Please read and share. Thank 'ee kindly. /1
There's a lot of argument about the status of #autism out there, and whether it should be classed or seen as a disability. Things can get rather heated (which in autistic people's case tends to mean awkward silences and then a minor meltdown in private later). /2
Some people argue it is a disability, others argue it should not be viewed in that way. Each have very valid reasons. I fall into the former camp as I believe it to be a disability. /3 #autism
Read 18 tweets
So, time to more thoroughly explain some of my positions here. Please share if you can.

First - why do I think ABA is abuse? /1 (takes a deep breath...)
Applied Behaviour Analysis is a form of training that is 'done to' some #autistic people in an attempt to modify their behaviour and 'help' them operate in a neurotypical environment. /2
It is heavily based around the concept of conditioning, whereby children are conditioned by rewards or sanctions to modify their habitual behaviours. This can be, for example, praising them for not stimming. /3
Read 11 tweets
#Autism and Parenting an infant school child - a thread.

Please read and share as you wish - reply too!

Let's dive facefirst into the morass that is trying to cope with the stress of taking a child to school every day... /1
Routine - oh goodness me I like routine, as I think a lot of #autistic people do. I live for routine. Threaten my routine and I freak out big style. Break my routine and... well... I'll not be particularly chuffed with you.

But children. In the morning. Oh. My. God. /2
My morning routine has been much the same this past 400 years or so. There is so little variation, in fact, that I'm pretty sure I could be used as some cosmic constant for astrophysics.

But these days I have to incorporate the huge will and cheeky disposition of a child. /3
Read 14 tweets
I’m the mother of a high-support #autistic young adult. I’m going to give it to you straight about antivax disinfo: why it’s nonsense, why it’s dangerous, & why it’s hurtful—especially to people like my son.
This is going to be a thread.

#autism #VaccinesWork #Neurodiversity 1/
I want to talk about a critical aspect of vaccine advocacy, which is understanding how vaccine-autism misinformation hurts the amazing people in the #autistic communities in general, and people like my wonderful, happy, autistic son specifically. 2/
If more people understand that #autism is nothing to be afraid of & is part of human diversity—if we share more messages about accepting #autistic people like my son, who need significant support but also have unrecognized abilities and have always been part of our society… 3/
Read 35 tweets
So—

—yep, it's time for more thoughts

One of the strangest things of living with autism, and knowing that you live with it, is the weirdest disconnect it gives you (well, me but I tend towards disassociation in such conversations)

I know I'm #autistic

1/n
I know that I'm different from others

To borrow from elsewhere; A Stranger in a Strange Land

And yet almost inevitably I hear from others that they couldn't guess I'm autistic, or that I'm "not as autistic" as somebody else

I loathe that

2/n
There's so many reasons to loathe it

On an external point of view, how allistic people view autism is on the old, highly discriminatory, highly unreliable (and down right racist) view that autistics can be divided into two groups: the intelligent and the not-intelligent

3/n
Read 24 tweets
#Autism and #Depression - a very personal thread. Despite that, please share widely as it might help folk.

All based on my own experience. /1
It's an interesting thing that mental health is so universally taboo, as it means our mental health gets progressively worse. So, following in the example of people like @matthaig1 and @Sara_Rose_G, I'm going tk be pretty open and honest about my poorly little brain. /2
Please be aware that I'm not classing #Autism as a mental illness. Because it isn't. I'm talking about the black dog - depression.

It's shit. /3
Read 15 tweets
Dear #edutwitter, particularly those of you in Mainstream Secondaries: our closed group is full of current crises for Yr7 girls, diagnosed #autistic and also awaiting assessment, who are absolutely breaking. Harming, not eating, in full blown panic mode, anxiety attacks 1/
... showing signs of potential co-occurring debilitating serious MH conditions like OCD & eating disorders. Some have been rejected from #CAMHS following referral. Some have been accepted but the waiting lists are so very very long. We’re asking for increased awareness of the 2/
...disparate experiences of #autistic pupils in secondary, but in particular #AutisticGirls.

As hugely committed teachers we know you’re also probably on your knees professionally & personally, that you have so much responsibility to fulfill. And we thank you for all you do 3/
Read 8 tweets
Here's my latest* update to my vetted collection of Twitter Disability and Chronic Illness hashtags. Please share it!

Thank you :-) Graffiti background. Foreground in black letters on a  white background to the left reads “Twitter Disability and Chronic Illness Hashtags”<br />
This collection is current as of 01.30.20, previous Twitter update 09.11.19.

There's a PDF version coming up this weekend, to be posted to my Kofi profile. I'll add the link toward the end when it goes up, after the questions, where you can also sign up for email updates.
This version has added

- community suggestions,
- mental health hashtags,
- Medical crowdfunding hashtags,
- and a section for cancer-related hashtags.
Read 84 tweets
Thread: #autism #employment statistics are unreliable but 44 years of working has taught me this: #autistic people struggle to reach their full potential unless organisational culture and environmental issues are addressed.
#neurodiversity
#employability
#inclusion
#careers
1/
I once did some work on job design and evaluation for the NHS. In attempting to improve #employment outcomes for #autistic people we often start in the wrong place. It’s no good trying to fit people into roles that are unsuitable, and this applies to working environments too.
2/
A degree of mutual adaptation is possible, but true workplace inclusion begins with design.
We have plenty of information about common challenges experienced by autistic people - our #sensory and #communication differences are well-defined.
So what seems to be the problem?
3/
Read 19 tweets
#AutismFYI
Thread on #autism, double empathy and #communication.

Most people are familiar with the idea that #autistic people are often direct when they speak and that this sometimes leads to misunderstandings, in a society like ours which values indirect communication.
1/
There is much less discussion around non verbal communication (NVC) for #autistic people, apart from the stereotype "they just don't get it".
Many autistic people I know are in fact experts in NVC, because they've studied it in great depth.

Does double empathy apply here too?
2/
I see many people who consider themselves 'experienced' in #autism who fail to recognise the most basic NVC from #autistic people.

Body language or behaviour which (to me at least) very obviously communicates distress or anxiety gets misinterpreted or ignored altogether.
3/
Read 9 tweets
Autism and bereavement or grieving - feel like there's a lot to talk about there but can i face going there? I'm sure #autistic people experience death differently to neurotypical folk, it stands to reason after all, but I'm not sure how to put it into words...
I've had quite a few old relatives shuffle from this mortal coil over the last twenty years and my personal experience has always been the same. I've described it before as rather than being a burst of emotion that tails off gradually, its a constant, steady state.
So rather than feeling *awful* for a while after the death, only to slowly come to terms and eventually be pretty sort of OK, I have a constant level of sadness that never changes. Means at first I seem cold, but later more affected than others?
Read 8 tweets
Why is there so many #autisms around these days? A thread exploring the high rates of diagnosis.

CW - may have some jokes in. Maybe even sarcasm. /1
Current official estimates for the prevalence of #autism on the UK are around 1 in 60 to 1 in 100 depending on who you listen to. However, given that we *know* that many individuals go undiagnosed (especially women) the rates are likely to be much higher, maybe even 1 in 30. /2
Incidence rates over time show a clear upward trajectory - here's the USA over the 11 years 1996-2007. Naturally many people see this and panic, assuming #autism is somehow on the increase, or more 'catching'. /3
Read 21 tweets
@sbaroncohen Autistic mum of four here, no problems multi-tasking, always prioritise my kids needs like a lioness and fight for truth & justice. Gets me into trouble sometimes.... but it makes me a better mother, not worse.
@sbaroncohen My kids benefit from significant 1:1 time which many neurotypical mums report is difficult to achieve, & whilst group functioning might be more challenging #teamthompson is, on the whole, #winning :)
@sbaroncohen I won’t stand for errors & inaccuracies which compromise my children which in healthcare & education is never appreciated but I make no apology for it. We should all be less tolerant of bad practise.
Read 6 tweets
CN: murder, disability, & mental health.

There is a horrifyingly typical coupling of devotion with murder, whenever disabled people are involved.

I'm here to say: Fuck that.

This is going to be a thread.

#Neurodiversity

1/
I need you—and judges and reporters everywhere—to understand that, however difficult it may be for families to support their disabled loved ones, *murder is never excusable*. There are always other options.

Always.

2/
Consider that disability-related murders are more common than the occasional high-profile story might have one suppose—according to Julia Bascom @JustStimming of the Autistic Self Advocacy Network @autselfadvocacy, the average rate for these murders is…

One. Each. Week.

3/
Read 11 tweets
Autism and masking, or

who the hell am I then?

A brief intense thread. Please share. /1
Masking is the conscious or subconscious effort that an #autistic person makes to appear neurotypical to the people around them. It's an intensely resource-intensive activity that is exhausting to maintain. /2
It's a bit like running two new, graphically impressive video games simultaneously on a decent PC. It's possible but it slows things down considerably and your RAM is screwed. /3 #autism #masking
Read 15 tweets
THREAD. So I went to my local NAMI (National Alliance on Mental Illness) group meeting tonight. TWO things annoyed me. (1) We had to pledge allegiance to the medical model, implying participants must denounce any version of a social model or combined social-medical model. /1
(2) Reinforcing (1), the moderators jumped all over me when I mentioned a medication name. Apparently, there is an “unwritten rule” that people are not allowed to talk about any medications that they’re on by name. Only circumlocutions are allowed. /2
What was the reason given for (2)? Supposedly, “they” don’t want people to take questions back to their doctors about their medications or treatments, or heaven forbid to not take a medication. /3
Read 17 tweets
My #Autistic Son Needs 24/7 Support. And That's OK.
We have a good life, because we stopped buying into mainstream notions about what happy families look like.

This is going to be a thread.

#neurodiversity #autism 1/
I’m the parent of a high-support autistic teenager, which means some people would say he “has severe autism.” By our own parameters, my family is a happy and well-adjusted crew. But before you make assumptions about me being a positivity unicorn… 2/
…or that my son must be only “mildly” #autistic, please know that my beloved dude is a mostly non-speaking ball of# autistic energy who requires 24/7 support. 3/
Read 29 tweets
Autism and relationships Thread #1

-+-+- Flirting -+-+-

A thread on one of the ludicrously difficult social activities known to humanity. Based broadly on my experience and reading. Please share widely as it might help people. /1
Right, I'll start by saying this is not a 'how to' guide. Nor is it a full explanation of what people mean when they flirt. Sorry but I'm actually dreadful at flirting - World class bad - and it's this that I'll draw on - what is flirting like for some #autistic people? /2
Flirting seems to me to be a sort of game that humans in certain cultures play to determine whether or not the other person both finds you attractive and is willing to act on that fact. It is *extremely* ambiguous and that is where #autistic people may struggle. /3
Read 24 tweets
Sometimes, it can be really hard to tell the difference between good autism organizations and not-good autism organizations. We totally get this! And that’s why we put together handy guidelines on identifying useful #autism orgs. This is going to be a thread. 1/

#Neurodiversity
We believe #autistic people of all ages & abilities deserve to be treated with respect, have their civil rights & humanity recognized, & have access to the resources & accommodations they need. We will not support autism organizations that do not abide by these basic precepts. 2/
We acknowledge that it can be difficult to identify #autism orgs that legitimately work towards the best interest of autistic people & their families, as questionable autism orgs tend to employ vocabulary of acceptance & support—even when actively undermining those principles. 3/
Read 12 tweets
This thread is in response to a recent thread by @leoniedelt that was interesting & provocative & hopefully won’t be a magnet for trolls, but as it stands, deserves a healthy debate.

As a bereaved parent & multiple trauma survivor & a psychiatrist of 30 years & a multiply

/1
#Disabled #ActuallyAutistic & #AutisticParent, I am very accustomed to being a member of heterogenous groups that share one overarching life experience that sets them apart from the rest of society.

In a bereaved parents’ group, we are there to support one another

/2
unconditionally.

Everyone is in the same boat, having suffered unimaginable loss, so it really isn’t cool to create a hierarchy of suffering based on how old your child was when they died or their cause of death or how many children died or how many are still alive or

/3
Read 25 tweets
Autism researchers and research funders: if you don’t listen to autistic community members and leaders about what #autistic people want investigated, you are not actually helping the autistic people you really, truly think you’re helping. This is going to be a thread. 1/
Autism research is mostly failing my teenage son and his autistic community. Saying something so forthright may seem harsh, but this is the Greta Thunberg era—and we’re now telling people what they need to hear, not what they want to hear. 2/
I've been going to autism science conferences & scrutinizing autism research for nearly a decade, & during this time most autism studies have remained mired in areas like causation—which does absolutely nothing to improve the lives of autistic people who are here already. 3/
Read 26 tweets
#Autistic people and industrial action: A THREAD.

Anyone who either follows me, or works in a UK higher education institution at the moment, probably won’t have missed the fact that members of UCU will be taking strike action from 25 November to 4 December... 1/
I thought I’d put together some thoughts on the potential impact of industrial action on autistics – whether they are participating or not. To make clear: I AM participating in the action. To make clear: I AM participating in the action... 2/
However, whilst striking is difficult for anyone, there are extra layers of difficulty for many autistics like me who might be doing so. (Caveat: I only speak for myself, but there are some generalisations that follow which will be quite widely applicable to others)... 3/
Read 51 tweets

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