Discover and read the best of Twitter Threads about #neurodiversity

Most recents (24)

Let’s talk about autism and health care, shall we? (Yes, this is going to be a thread.)

First of all, we all need to acknowledge that autistic people as a community and a population are badly served by the current state of health care and supports.
#Neurodiversity
1/
Both formal research & autistic people's own reports show that autistic health concerns—including mental health issues—are too often dismissed or misunderstood, and that autistic people are also more likely than the general population to have co-occurring health conditions. 2/
It is unconscionable for our autistic & disabled community members to receive improper and insufficient health care. @HonTonyCoelho wrote about Patients Harmed by 'Cost-Effectiveness' Measures in 2017: realclearhealth.com/articles/2018/… 3/
Read 32 tweets
Who wants to see the #Diversity data for @STFC_Matters, that was released by @UKRI_News last week?

The full data release is here, so if you want to see anything for yourself, go ahead: ukri.org/about-us/equal…
@STFC_Matters funds research & training into astronomy, particle physics, space & planetary sciences & nuclear physics. This is important because @ukhesa only report STFC as #physics – it’s so much more!

STFC have a #equality & #diversity statement here: stfc.ukri.org/funding/promot…
So, let’s start with @STFC_Matters #ethnicity data.

Worth noting that @UKRI_News collate three categories; ethnic minority, white, not disclosed.

We can’t separate out different ethnicity, which is a problem in itself. Image
Read 68 tweets
If your child has recently been diagnosed autistic, as my son was in 2003, here's what I want you to know: Learn from me, don't be me. Here are 13 Next Steps For Parents After an Autism Diagnosis.

(Yep, this is going to be a thread.)

thinkingautismguide.com/2017/03/after-…

#neurodiversity
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When professionals first started suggesting that my son might be autistic, I reeled. I didn't know anything about autism at the time, except as disability version of a child-stealing bogeyman. When my son's diagnosis was confirmed, I was terrified. 2/
…And then I was depressed. And then I got to work on figuring out how to parent an autistic kid. And then I made a lot of mistakes. And then I rued those mistakes and tried to do better. 3/
Read 40 tweets
You know what? Let’s make this a thread. I’m going to talk about the four most common fallacies in parent writing about autistic kids, and why they are hooey. The goal here is to teach you to identify baloney, even when it doesn’t have a first name. *rimshot*

1/
Unfortunately, when it comes to writing from parents of autistic kids, too many take the demeaning route. I find this approach quixotic at best: If you write smack about your kids in public spaces, how could you ever expect other people to treat your children well? 2/
So let’s talk about the four ickiest examples of bad parent writing about autistic kids, why using these approaches are not useful, and what you can do instead.

#Neurodiversity

3/
Read 27 tweets
Perhaps I may venture my personal opinions on what #ActuallyAutistic self advocacy & the #Neurodiversity movement is about in a thread?

Hopefully parents and carers will be able to see there is not a conflict of interest between the two. I am an #autistic #autismparent too.
Firstly the neurodiversity and autistic advocacy movements are part of the #DisabilityRights movement that uphold basic human rights for all disabled people. It also refers to the rights outlined in the UNRPD as well as national/ European legislation un.org/development/de…
We still need to advocate for better law, enforcement of the laws we have and better funding for the resources that disabled people need to have adequate and equal access within society.
Read 14 tweets
@JudySgroMP crying about the poor miserable parents, as if the parents aren't already the dominant face of what judy calls the "autism community" #gross
@MikeLakeMP : we need to find common ground.
Says "niche" area groups may not be included in a national strategy.

What does he consider "Niche" i wonder?
@JudySgroMP toting a "unity" strategy and begging organizations to put aside their morals and reservations and rally behind her #NationalAutismStrategy
Read 12 tweets
Autism research is mostly failing my teenage son & his autistic community. Saying something so forthright may seem harsh, but this is the Greta Thunberg era—& we’re now telling people what they need to hear, not what they want to hear.

Saddle up, this is going to be a thread. 1/
I've been going to autism science conferences & scrutinizing #autism research for nearly a decade, and during this time most autism studies have remained mired in areas like causation—a pursuit that does absolutely nothing to improve the lives of autistic people here already. 2/
Even more frustratingly, when research does address the needs of existing autistic people it does so with the goal of "intervention," rather than focusing on quality of life, & largely neglects those like my son who have intellectual disability &/or communication disabilities. 3/
Read 17 tweets
The #autism prevalence, per @CDCgov, is now 1 in 54 children. You may see some alarmists claiming this is a crisis, a tidal wave, etc.

No. Such people are misinformed.

If anything, autism is still under-identified—& that should be our focus. This is going to be a thread. 1/
@CDCgov You need to know that the new CDC numbers demonstrate how, essentially, autistic people have always been here—the CDC is just getting better at identifying them; plus the CDC's understanding of just who qualifies as #autistic has changed over time. #neurodiversity 2/
@CDCgov The criteria for autism diagnoses have not just changed over time but changed to be more inclusive over time (Asperger's, added to the DSM in 1994, was folded into #Autism Spectrum Disorders in 2013). More info on that: link.springer.com/chapter/10.100… 3/
Read 10 tweets
If you missed the recent webinar on Disability & Inclusion Strategies During #COVID19 for parents &/or children with disabilities, the full video & complete transcript is here:

thinkingautismguide.com/2020/04/disabi…

If you’d prefer to read the highlights here, this is the thread for you. 1/
First sincere thanks to @magicalbridge’s Jill Asher for creating the Disability & Inclusion Strategies webinar, & to panelists @AutisticEnough, @ForwardRolling, & Anne Cohen. We addressed some issues disabled & #autistic people & their families are struggling with right now. 2/
We wanted to acknowledge that we are all stressed right now—and that's okay. Although our participants & their children represent a range of disability experiences, we are also aware that our panel did not represent disabled people of all racial and economic backgrounds… 3/
Read 81 tweets
Today is World #AutismAcceptanceDay! (Or, to some, #AutismAwarenessDay). This means you’re probably being firehosed by autism information. But how do you know if an #autism organization is a trustworthy one? Fortunately, we have guidelines & examples:

thinkingautismguide.com/p/position.html 1/
At TPGA, 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 orgs that do not abide by these basic precepts. 2/
We know it can be difficult to identify #autism orgs that legitimately work towards the best interest of #autistic ppl & their families, as questionable autism organizations tend to employ the vocabulary of acceptance & support—even when actively undermining those principles. 3/
Read 19 tweets
If you want to do right by your autistic kid (or any autistic person, really), then please do your best to understand and respect these eleven factors about being autistic. From this article, but this is also a thread:

thinkingautismguide.com/2017/04/eleven… #Neurodiversity #autistic #autism 1/
(1) Processing Time: Almost every #autistic person I know has their own rhythm and speed at which they process information. In my son's case, this means giving him a few beats to respond, rather than impatiently assuming he didn't understand what was said. 2/
Other processing scenarios include relying on captioning for comprehending videos or movies—even for those who can hear—or needing to record & re-listen to lectures. Disregarding processing needs can lead to #autistic ppl having their abilities or comprehension underestimated. 3/
Read 31 tweets
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
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
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
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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
how did we ‘invent’ {god}

look closer at the evolution of human mind: the three Rs- reflection, replication and rationalisation + the evolution of emotions-
when we began tagging reality, we created a replication of its circumference in our minds, a virtual hemispherical space..
see how emotion compounds tag reality (found in human research moment), and how it creates a sense of human identity..
that hemispherical virtual tagged space is a projection of our own identity - imagine millions of vertical neuro-lines darting upwards in all directions..
these thought-lines tag a hemisphere that extends to an entire universe, which in objective reality doesn’t exist..

an evolving awareness of ‘i exist’, outcomed an emotional projection onto that virtual circumference of one’s very own image, hence the surety of god’s existence..
Read 11 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
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
A thread on the historical significance of @GretaThunberg being chosen as the first proudly autistic @Time Person of the Year. The fact that autistic folks often speak the truth bluntly, even rudely at times, is often framed as a social deficit. [1/7]
In Greta's case, her relentless reiteration of the facts of #climate change, and the importance of science, has made her a focus of incandescent hatred by the same pompous liars and paid-for buffoons who are selling the earth from under the feet of their own grandchildren. [2/7]
The "autistic" qualities of Greta's war on the status quo - her visceral distrust of rationalizations and vacuous rhetoric - are precisely the qualities all humanity must emulate at a time when global political discourse is dominated by nonsense and gaslighting. [3/7]
Read 7 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
I'm going to talk a bit about an experience I just had.
So I was saying my experience with a situation that wasnt racist but felt kinda upsetting to me and a group of people got mad at me for talking about it. Once I said I was autistic, one of them apologized and said
I seemed tone deaf. Which I probably was (and am).
If they had moe awareness and acceptance of autism instead of calling me a troll (which they did) and getting upset at me they may have thought that I was autistic and treated me with that empathy of "they may not understand
All of our social norms and we should expect them to."
This is why we need awareness. This I why we need acceptance

#Neurodiversity #AllAutistics #ActuallyAutistic
Read 4 tweets

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