#underdiagnosis

[selectivechaos]

emotions, sm and underdiagnosis of adults.

“People with SM may appear to be sad because they struggle to show any emotion on their face. As a result, they look upset a lot of the time. This is a bigger issue for children than it is for adults as children are usually expected to always be happy and laughing. It can cause problems as it’s hard to know when there actually is something wrong.” source: shecanspeak.com

this is part of the freeze response. it is not because i can’t animate my face (flat affect is, as i understand, an autistic trait), but becauee i am terrified people will see my emotions, intentions, thoughts, reactions, personhood. for me, this stems from negative social experiences of people reacting with anger to, or laughing at, my facial expressions. it is also just very vulnerable, and might prompt people to talk to me.

but in situations i feel safe in, i express so many complex emotions freely.

the expectation that adults can regulate their emotions/behaviour better than children, and the general rule that there is reduced emotional labour expected of adults than children, leads to underdiagnosis of adults with sm. it is seen as less of a problem that an adult ‘never’ smiles or laughs.

but blank face/eyes isn’t true of all people with sm. the NHS lists:

nervous, uneasy or socially awkward

rude, disinterested or sulky

clingy

shy and withdrawn

stiff, tense or poorly co-ordinated

stubborn or aggressive, having temper tantrums when they get home from school, or getting angry when questioned by parents

there are many people with sm who, because they can’t speak, will display a huge variety of complex facial expressions so as to convey as much as possible without speaking. in this case non-verbal communication is not inhibited, but is actually a tool they developed to engage in social relationships fully. one website i found listed this as ‘obscure/strange’ facial expressions, but i argue that is just a pathologisation of a perfectly valid way to communicate. nonverbal and nonvocal communication matter hugely and can signify a lot, and therefore it is just as valid to struggle with this as with speaking.

🌹🌹

[none-gender-left-man]

People need to understand that some intersex people find out late, and not every single intersex person has had invasive medical trauma, and we don't owe you our history or proof of our intersex status. 

Turning it into the trauma Olympics and denying covert intersex people from within the intersex community simply because we aren't yet diagnosed, don't "look intersex" (whatever the fuck that means), or because we weren't detected as intersex in childhood is harmful to the community at large and perpetuates the false idea that being intersex is an inherently rare, "freakish" anomaly as opposed to a Somewhat rare, but also more common than thought condition. 

I don't appreciate our experiences being pathologized and people feeling entitled to our personal medical history just to "prove" we're actually intersex. Especially when this comes from perisex people. 

Everyone needs to remember that being intersex without knowing it is shockingly common and more recent data would suggest the intersex population is much higher than what is currently recorded, because many intersex people will never discover it and never have a reason to identify it. Because it's NOT something that is always obvious or visible, and it doesn't always cause medical issues that lead to it being discovered. Not every intersex person is obviously androgynous, and not all of us have intersex traits that the average person can detect. 

We should NOT be allowing perisex doctors and perisex academia to determine what we are and what defines our community. Yes, our identities are intertwined with our medical history but you are not entitled to that history, and this fact does not mean that being intersex is a "disease". Intersex conditions can cause health problems, but this doesn't mean we're "defective" in some way, and it doesn't work as proof in claiming that it's strictly a medical issue and not a social one. It is very much both.

To be intersex is so much more than just our medical history and anatomy and some of y'all are just fucking creepy and fetishistic trying to figure out what our genital phenotypes are. 

I am intersex. I didn't discover this and accept this about myself until 2020 despite questioning since I was 16. I was too afraid to be attacked for "overstepping" into a community I "don't belong in", despite having clearly intersex experiences throughout puberty and especially in my late teens.

My being told I looked ugly for being androgynous as a child, my being made fun of for having facial hair and a low voice (I was even seated with AMAB kids in choir despite being AFAB and that led to some really nasty bullying), my shame and fear of changing clothes around others such as locker rooms because my body felt "wrong" and I couldn't place why, my asking questions about my body and being told that my actually very abnormal development is "just a quirk" and not having it diagnosed (because doctors avoid diagnosing intersex conditions out of prejudice), my fear of going to a reproductive doctor as a young teen that still continues to this day, my lifelong confusion and discomfort with gender as a whole, and my being treated as a disgusting freak for appearing outside of the norm still fucking counts, even if I didn't undergo the harsh trauma of invasive medical procedures. The only reason that I DIDN'T have those experiences is because I was denied the truth and all doctors in my life have ignored it willfully or refused to see it at all. 

I don't wish medical abuse on anyone and I am by no means attempting to co-opt or compete trauma, those who have invasive intersexist medical trauma are the highest of priorities and that shit HAS to be stopped, but please-- Please consider that not everyone is given access to doctors that acknowledge intersex status as they should, and many of us are forced to go without a diagnosis as a result of these biases, despite still fighting the same struggles and intersexist oppression in our lives and development. Intersex medical abuse is a fucking plague, but so is underdiagnosis.

[adhd-community]

I took a clinical psych class a few years ago and learned about how there’s an over diagnosis problem with ADHD (15% of kids are diagnosed compared to the estimated 5% of kids who actually have ADHD) and sometimes when people dx w/ ADHD judge me for stimming and having poor executive function I can’t help but question whether they really have ADHD or if they’re wrongly diagnosed. Am I bad for this? I know it’s wrong but I can’t help but wonder how an ADHDer could judge me having symptoms

So I will start by saying that diagnosis and estimated rates of ADHD vary by country, and it's important to note that while ADHD is over-diagnosed in certain populations (primarily young boys) it is also underdiagnosed in some populations (e.g. women, adults, high-IQ individuals). It is important we provide doctors and the public with better information about ADHD and become better at identifying and diagnosing this disorder.

In regards to 'are you bad for thinking something' - of course not. You have done the most important thing. You have had a thought, felt unsure about it, and are now critically evaluating whether or not you actually believe that thought. That's great!

How could someone with ADHD judge you for stimming? People with ADHD are very different from one another and rarely share the exact same set of symptoms - they may not experience exactly what you do and vice versa. Also internalized ableism is a real thing - kinda like how you can get queer people who are homophobic because of internalised homophobia. They might try really hard to cover up the behaviours that you are showing to better "fit in" with society, and so when you show these behaviours they might subconsciously feel uncomfortable and try to shut them down.

If you can, try and respond with empathy and compassion, but don't apologise for who you are. Understand that their judgement doesn't mean that you're actually wrong, and they may not mean to be hurting your feelings. The judgement says a lot more about them than you.

[actuallyadhd]

i'm a 21 y/o woc and only now getting diagnosed and im so. mad. about it. because it's affected me so long, to the point that i started going to therapy at the age of 6 (!!), but because im a girl and i had good grades it was all just "in my mind" and just "evading" stuff (whatever that means). if i had had the diagnosis, if my parents had known how to deal with an adhd child, before now my childhood and teenage years would've been so much better! we rlly need to talk about underdiagnosed groups

Sent July 6, 2019

Definitely. Things are getting better, but we have a long way to go. I will see if I can find some more recent demographic studies on diagnosis of ADHD; I haven’t looked for those for a while, and the last time I looked everything was pretty old.

Followers, what groups do you think are underdiagnosed, and why are they underdiagnosed?

-J

[actuallyadhd]

where do you get your information from? don’t make generalisations about the diagnosis rate of adhd in every city if you have no idea, don’t base it off your own knowledge. my city has lots of adhd diagnosis’ and not everyone is ‘overdiagnosed’ because everyone is treated properly by the paediatrician

Sent January 26, 2019

I’m sure the figures are out of date, but all of the general information is based on studies I’ve read regarding prevalence and incident rates, mostly in the US. Now, what this means is that when I’m talking about overdiagnosis and so on, I’m talking about averages and general trends across the US, not specific cities. There are always places and people that buck the trend, after all. (I also talked about underdiagnosis in that post, because there are a whole lot of interrelated factors that contribute to whether or not someone is diagnosed accurately. Only some of those factors have to do with where you live.)

-J

[nxiousxpsistence]

Dear NHS,

I tried and failed to get rediagnosed with ADHD in the UK. 

I can do without my ADHD medication - have done so for a while now. It’s exhausting, chaotic, and adventurous every day and I know I will die early for it with all the stress and demotivation and my body aches all over as I just can’t relax, but I make do.

I understand how doctors here cannot be expected to be familiar with the presentations of neurodiversity in other countries or in older people.

What hurts me, though, is the knowledge that I would be on my medication following a management regimen right now if I had just another 1000 Pounds in disposable income.

Love,

An Old-ish [redacted] Migrant Woman with ADHD

[random-bookquotes]

While an awareness that men or women have, on average, greater or lesser risks of certain diseases is important and useful up to a point, this awareness can lead to diseases becoming so stereotyped as a “man’s disease” or a “woman’s disease” that doctors are blinded to the individual in front of them—to the extent that the stereotype actually becomes self-fulfilling: knowing a condition is more common in one gender tends to result in its underdiagnosis in the other gender.

Maya Dusenbery, Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick

[chiokedmachi]

'#SocialCamouflage' May Lead To #Underdiagnosis Of #Autism In #Girls - NPR https://apple.news/ALlmCtwANTjudiGh-rN846g (at Autism Academy)