Mastodawn

If you're considering a professional autism diagnosis, it's worth researching what a diagnosis would do for you.

Depending on individual circumstances, an autism diagnosis can put people in danger and I can't recommend it.

A diagnosis doesn't really give you more information on autism, it just confirms you are autistic. It can mean you get accommodations for school or work, and help you get disability pensions and the like. For those things a diagnosis would be required. You don't need a diagnosis to understand the condition, be part of the community, or start making changes to your life.

So why might a professional diagnosis be bad? It depends on where you live and how marginalised you are as a person.
During 2020 there were many reports out of the UK of diagnosed autistic people being given involuntary Do Not Rescusitate orders by their doctors, to compensate for COVID hospital overwhelm. Some people did die. Autistic people across the world were also put lower on triage lists and received less care when hospitals rationed healthcare in that time. They were given lower priority for ventilation and other life support. This was the case for multiple countries, not just UK.

In the UK and some USA states, having an autism diagnosis can prevent you from accessing gender affirming care (trans healthcare), because of rising rhetoric that autistic people cannot do informed consent (which is bullshit). The expectation is this could get a lot worse and expand to more elective surgeries and treatments. So you need to consider how laws might become worse in the future.

I have heard anecdotal evidence of an autism diagnosis being used as evidence against autistic parents and then having children removed from the family. Sometimes after court the children are returned, but it's an awful process.

If you are a thin, white, cishet man who is unlikely to be thrown under the bus in a medical setting, you are probably pretty safe. If you have concerns about the other things I spoke of, then I would talk to more people and look at the laws where you live that may impact you. I urge BIPOC folks especially to consult the BIPOC autistic community on this.

To clarify, a diagnosis of autism in a vacuum is not dangerous. It's not different to a diagnosis of other things. However due to recent politics, there are risks attached and for some people its a considered decision.

#autistic #autism #actuallyAutistic #neurodivergent #neurodiversity #disability #NEISvoid #disabled
@disability

@essie_is_okay To take this a step further, one or two "scientific" articles have claimed that autistic people are more likely to be trans (I'm not using the specific medical term they used for obvious reasons). The response from the autistic scientific community has been that autistic people are more likely to come out as non-binary or trans because they are less impacted by social norms.
In the same vein, I know trans friends who refuse to identify as autistic because they don't want another medically labelled identification, with the attendant prejudice in our society.

Pamela Ehn Jul 8, 2023

@olireiv @essie_is_okay I’m not so sure it is social norms so much as that most autistic people just fall on the LGBT spectrum (70%), which we know isn’t socially constructed. Straight cis autistics like myself are an outlier. Now the preference for polyamory, which I’ve also practiced, is socially constructed and autistic people are more likely to be polyamorous because of less adherence to social norms. But sexual orientation and gender identity tend to be hard wired. I mean my poor mom wanted a bull-dyke for a daughter. I was a constant disappointment to her because I was too tiny and girly to be that. She was SO disappointed when I told her I liked boys.

@cadenza @essie_is_okay You raise an excellent point, but even certain feelings known to be hardwired or innate are considered by some to be social constructs. [edit: and "psychological construction and neuroconstruction", so I think the both of us are right]
Source: https://en.wikipedia.org/wiki/Theory_of_constructed_emotion

Theory of constructed emotion - Wikipedia

Pamela Ehn Jul 8, 2023

@olireiv @essie_is_okay well, yeah, how those traits are expressed is definitely affected by society. I mean, in Elizabethan England, homosexuality didn’t exist as a concept, but it “passionate” same-sex friendships were quite common. It was not unusual for a deep intimate friendship to become sexualized. Like marriage was for continuation of property and if you managed to marry for love, bully for you, but it wasn’t considered the *point* of marriage. But friendship was rarer, deeper, and more intimate than we consider it today.

@cadenza @essie_is_okay Since you are a filmmaker, I believe this article/essay may interest you:
https://autcollab.org/2023/06/26/life-is-at-bottom-diversity

Life is, at bottom, diversity

Click here to use Google translate to read in your language. All living systems, from the smallest forms of life to the planetary ecosystem are best understood as complex systems of feedback loops.…

Autistic Collaboration

Pamela Ehn Jul 10, 2023

@olireiv @essie_is_okay hmm this reminds me of what my best friend once said: “The problem with you is that you think so far out of the box.” I responded autisticly, “There is a box? What is this box of which you speak?”

@cadenza @essie_is_okay

Brain Pilgrim Feb 21, 2024

@cadenza @olireiv @essie_is_okay

I find US neurotypicals oversell themselves on the benefits of compliance and conformity.

I don't it at all the same way.

@essie_is_okay I have absolutely no idea how to navigate any of this

@hellomiakoda
Are you thinking about autism diagnosis?

@essie_is_okay It was SUPPOSED to happen already, and I was already given confirmation I am... but it doesn't seem to be written down anywhere.
I definitely am not "no support needs", definitely would need accommodations at a job - which I don't seem to be able to do for enough hours to keep my EBT, and I am definitely not functioning enough to sustain... but there seems to be no help.

@hellomiakoda
Usually an autism diagnosis involves you filling in a questionnaire, and depending on your healthcare system, can cost thousands of dollars. Did you go through that process or did your doctor just write it in your file?

Alex@rtnVFRmedia Suffolk UK Jul 9, 2023

@essie_is_okay another risk in UK is that depending on the opinion of a GP, an diagnosis of autism or ADHD (especially if meds are prescribed) can be notifiable to the DVLA (driving licence authority) - and by extension insurers) - this can result in a licence being suspended pending medical assessment and higher motor insurance premiums (and mistiming meds can result in a DUI charge)

@vfrmedia
Damn another thing I'll add to the list of things to warn about I guess. Thanks for letting me know.

Alex@rtnVFRmedia Suffolk UK Jul 9, 2023

@essie_is_okay I was lurking on a UK motoring forum and there was a thread about drivers with autism - which pointed out many are *more* focused than neurotypical drivers) but also had anecdotes of young adults with autism being covertly notified to DVLA by unknown persons and their GP being contacted (luckily the GP replied to DVLA that there was no risk from the patients driving)

Driving has got much much harder for me since I went into autistic burnout. Being aware and alert constantly and make precision movements without looking at your hands or feet. Anticipating how others drivers will act, reading all the signs, processing the signs, making decisions to change lanes or overtake. It's all so much. A lot of autistic people can't drive but taking away a licence based on diagnosis alone and not actual driving ability is plainly discrimination.

Alex@rtnVFRmedia Suffolk UK Jul 9, 2023

@essie_is_okay I only learned in my 40s (after some false starts in younger days, when I simply got overwhelmed and scared off the whole idea). I decided to drive a car with an auto 'box to reduce some of the cognitive load (+ being older and finding the clutch aggravated my knee) - I enjoy driving most of the time but it does take a lot of spoons, I have to plan long journeys like a military operation >>

Alex@rtnVFRmedia Suffolk UK Jul 9, 2023

@essie_is_okay the biggest potential hassle is to those with both autism and ADHD who are prescribed stimulant meds - although the permitted bloodstream level for these is a fair bit above that of partydrugs (due to their legit prescription) its not something you could test at home (unlike an alcotester), which leads to the risk of a DUI charge (with a 1 year ban, and 11 years higher insurance premiums!)

@vfrmedia
That's awful

Alex@rtnVFRmedia Suffolk UK Jul 9, 2023

@essie_is_okay the govt have created a situation where its only worth getting diagnosed and/or meds if you live in a big city area and don't have to drive (this is also a consequence of the DUI laws being used to goldplate the war on drugs over and above what is legitimately required to ensure road safety...)

extraneous Jul 9, 2023

@essie_is_okay
I think it's worth noting that UK clinicians told NICE that the blanket DNR instruction for non-consenting autistic people as well as anyone with intellectual disabilities violated the Hippocratic oath and they refused to comply. Autistic charities also complained and the instruction was deleted.
Yes Autistic people died disproportionately during the pandemic but this was not because clinicians complied with the instruction, they didn't. Autistic people are always more vulnerable to death in hospitals because hospitals are ill equipped to deal with us appropriately. The UK government is currently funding research into solutions. I'm not holding my breath though.
I was recently surveyed for research into autistic experience of healthcare, I mentioned the UK Equalities Act and the researcher remarked that no one else has mentioned it. But the NICE guidelines also breached this law and the government could have been sued had they not deleted the guideline. Hospitals are well aware of it though, they're just not very good at it, you have to explain what you need and obviously this is difficult for autistic people with intellectual disabilities or non-speaking. Much needs to be done but it isn't true that clinicians were prepared to leave us to die whatever the evil Johnson government had in mind.
I wanted a diagnosis partly in order to "be counted", greater visibility is important to me, especially for autistic women and girls. I'm white, gay, non binary cis female, far from the most vulnerable in society but somewhat socially vulnerable none the less. I'm aware of the risks and obviously agree that people should consider the consequences of a diagnosis and make a safe choice for their circumstances, but I also think visibility is important for social change.
Frankly if we ended up with a fascist government I'm already gay and non binary besides my long history of left activism so what the hell, might as well be 'out' as autistic too.
Again, aware that others may evaluate their own circumstances differently and totally support them in doing so.