Autism Diagnosis - Tumblr Posts
Got diagnosed with autism today
Autism Diagnosis Criteria Explained
@neuro_lou
Today, the Centers for Disease Control released the Autism and Developmental Disabilities, Monitoring (ADDM) Network report. This report estimates how many autistic 8-year-olds there are in certain areas of the country. The report shows that better recognition of autism and continued efforts to reduce racial and gender disparities have caused rates of diagnosis to continue to rise. There is still more work to do to address the remaining disparities in diagnosis, and more work to do to ensure autistic people in all communities receive the support we need.
The report released today uses data gathered in 2018. This research reviewed records of 8-year-old children in 11 communities across the United States. The report released today shows that the rate of autism diagnosis has increased to 1 in 44 children, or 2.3 percent of the children surveyed. This is an increase from earlier reports, which estimated that 1 in 54 children were diagnosed with autism.
ASAN is not surprised to see the diagnosis rate increase. We believe this increase reflects better recognition and diagnosis of autism across the U.S. We know that many disparities in diagnosis have become smaller, and we know that children were evaluated earlier in some places and later in others. We expect that diagnosis rates will continue to rise as we work to address diagnostic disparities and improve access to diagnosis and support.
Unfortunately, the report shows that while some improvements have been made, diagnostic disparities continue to be a major issue for autistic people of marginalized races, ethnicities, and genders. The report showed that Hispanic children were less likely to be diagnosed than white children. Black children were more likely to also be diagnosed with an intellectual disability compared to white or Hispanic children, reflecting a longstanding history of racism in how Black children with disabilities are labelled. Children assigned female at birth were less likely to be diagnosed than children assigned male at birth. Researchers, clinicians, and policymakers must work to end these disparities and remove bias from the diagnostic process.
The results of this report also make clear the need for improved study of rates of autism diagnosis in adults. While improvements in early diagnosis are important, substantial disparities remain. Autistics of color and those who are assigned female at birth are less likely to receive early diagnoses, meaning that a survey of 8-year-olds gives an incomplete picture of the autistic community. Surveying adults can provide a clearer picture of how frequently early diagnoses are missed, demonstrate the need for adult services, and help to correct misconceptions by demonstrating that autism is just as common among adults as children.
Autism is not a bad thing, and autistic people, of all races, genders, and ages have always been here. The ADDM report represents an encouraging sign that our diagnosis practices are catching up to that reality. This is good news for the many autistic people who have been overlooked in the past, and can now get the recognition and support they need.
The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement with regard to autism. ASAN believes that the goal of autism advocacy should be a world in which autistic people enjoy equal access, rights, and opportunities. We work to empower autistic people across the world to take control of our own lives and the future of our common community, and seek to organize the autistic community to ensure our voices are heard in the national conversation about us. Nothing About Us, Without Us!
A well informed autism self diagnosis is just as valid as a psychiatric diagnosis. Additionally, under the given circumstances it is safer, most probably less expensive and you don't need to wait for any appointment.
10 screenshots from a twitter thread by @devprice with white text on black background.
The thread reads as follows:
I hear from many trans & nonbinary people who are actively seeking an Autism diagnosis. My advice is RETHINK THIS. Restricting Autistic people's access to gender affirming care is a major TERF talking point. As legal attacks on trans healthcare mounts, a psychiatric dx is a risk
The high overlap between Autism & transness was one of the main "concerns" JK Rowling rose in her "TERF Wars" blog post. Numerous fearmongering anti-trans articles influenced by TERFs have raised the issue since. if youre trans now is not a good time to seek a formal Autism dx.
An Autism dx does not unlock access to any beneficial therapeutic treatment, bc there is no "treating" Autism. Formal diagnosis makes us vulnerable to legal & psychiatric control and gets our competence challenged -- you dont need to subject yourself to this. diagnose yourself
I am close with dozens and dozens of Autistic people, and I have no idea who has a diagnosis and who does not. It does not matter. There is no reason to ask, no reason for others to care how someone identifies and how they arrived there -- all that matters is community support.
also if you cannot afford to pursue a lengthy & expensive lawsuit, it's unlikely a formal diagnosis will actually protect you from discrimination at work, in school or in housing. if you have the means great, but most don't. disclosing disability can be more risk than its worth.
if you need a dx to access resources such as disability benefits or extra test time, by all means go for it, but be cognizant of the potential costs. you could be denied for surgery, lose control of your assets, be found legally incompetent, lose custody of your kids...
Tweet replies to this thread:
By Greysquirrel @/treerat93
My autism dx was forced on me at age 2 and kept me out of the military in my 20s. It’s been nothing but destructive. I was beat up in sped and believed myself to be stupid my entire life because of it. I can’t even buy life insurance.
By Emily Johnson @/emily_rj
In some states, people with autism face being denied organ transplants, are at higher risk for forced sterilization and/or denied contraceptive and reproductive care, and have a higher risk of police brutality I considered this and decided informal diagnosis was best for me
By AK Faulkner is sweet and...
In the UK, an autism diagnosis is already a significant barrier to gender-affirming care. The GICs automatically try to discount dysphoria as autism during your initial assessments with them. If you arrive pre-diagnosed with autism they write your dysphoria off as that.
little different then what i usually post about but a bit pissed off and honestly just a rant
Alright, basically for context, I guess: Autism, ASD, ADHD, dyslexia, etc. (but autism is important for this rant) runs both sides in my family; we're all VERY neurodivergent. Though we're usually high-functioning and can mask well, it's still very visible. (like the magnet thing where neurodivergent people make friends with neurodivergent people because they're like drawn to them,, or something??? I like to call it 'your people finder')
The rant: In my life, I've been diagnosed with ADHD, and I am currently on medication, though something we've noticed is that I'm also showing signs of high-functioning autism. which is like, 'Oh cool, I guess I should get tested because, honestly, why haven't I before? I'm most likely going to get a positive result, and I think a diagnosis would help my 504 and shit.' So I went through the testing, which was honestly really… weird? I felt like I was being tested on only one end of the spectrum to see if I had a good reaction time, if I could read social cues, and if I could decipher figures of speech. Which was like alright, okay, I guess that's some signs that should be written down, important knowledge, I guess. So I get my results in,, waiting 3 weeks for this,, did 1000+ questions for this,, did 3 hours of testing for this,, to turn up as negative. I'm not upset I got negative. I'm not one to glorify autism or make up some shit to feel special. I'm upset because I've been looking through the diagnosis system, and the place I live has a mindset of 'you're only autistic if you flap your hands, can't pick up on how the other person is feeling, you're good at noticing patterns, etc.' or just that low-functioning autism is the only way of autism and that's not fucking okay??? I understand how autism has not been around for like a really long time (which is actually very interesting; I would recommend reading about Donald Triplett), and we really only have studies on male-bodied people (which is a whole thing about how autism is represented differently in different sexes), but it's actually hard to get an autism diagnosis. Like if you're male-bodied or female-bodied, and especially if you're an intersexed person. (Like, come on, dude, it's already hard enough for one sex to be severely undiagnosed, but two?? Really??) Though, I guess I give props for them noticing I have ADHD and saying I most likely have anxiety and a small chance of OCD.
Conclusion: I don't give a fuck if I'm not autistic or not; this diagnosis system needs to change. At least where I'm from; I'm not sure how it is in other places.
SORRY ABOUT THE LONG ASS RANT, and thanks for reading!! Please don't feel the need to respond or comfort to this, I'm just sharing my frustration.
Adding: I know self diagnosing (the one that's actually well educated not the tiktok shit where they spread misinformation so they can get attention) is common due to this, I just wish shit like this was more.. easy? Like easy to go though the process of getting an actual diagnosis, or even the chance to get one. Which, I am lucky to have that chance of at least getting tested, I admit.
Autistic community of tumblr I call upon you!
I passed my whole life feeling like an alien, being left out etc. I was bullied during all time in school and friends groups left me and I didn’t understand why. I thought that all of these traits and my situation came from being traumatised but it didn’t sit right with me.
So, then came TikTok. I know, I know, it’s not the right way, but please read until the end. All the things that were described in the autism tag were very similar to experiences of mine. Being very sensitive to noises, doing random noises, not understanding social cues, being tone deaf, a lot of them intertwined with my life experience and difficulties.
I read papers and reflected on it for years. This year I met a bunch of neurodivergent people that encouraged me to get a diagnosis.
That’s when I talked about this with my mom and opened Pandora’s box.
My father was autistic (he’s dead now so no way to confront him) he was not diagnosed but he never wanted to but knew what it was because he was a doctor and autism apparently runs in my family (I had other autistic undiagnosed relatives).
So, because I was weird when I was little I got tested. Yeah, tested for autism.
And you know what? I was deemed as “having autistic traits but being too good functioning and having a genius personality, so no need for support”. What the fuck does that mean. Like what in the eugenetic bullshit does that mean. I know it was the early 2000s when autism was not seen as a spectrum so either I was non-verbal or was “ok” but what the fuck does that mean. I would take it as a diagnosis but I do not know genuinely how to take it.
So, any experienced autistic person has advice?
GUESS WHO FINALLY GOT THEIR AUTISM DIAGNOSIS, FUCK YEAH
i told my sibling and they just went “yeah i guessed” and then my friend went “Tbf it isnt that hard to tell lmao”
something happened and im really sad and also happy.
happy chinese new year to all, but YOU GOTTA READ THIS.
for more than a year (3 yrs almost), i’ve done a self diagnosis on myself with spd (sensory processing disorder) and adhd (few others too)
the man took an hour late to arrive but LOL
went to this place and told the man about how i’ve been bullied and what was going on. so i obviously didn’t say i was gay but my mom did bring up how somebody was gay and was bullying me as a gay person (smart man knew i was gay from how I went 😝✌️ along with saying the word “gay” but he didn’t make it obvious until my mom looked away and he smiled and mouthed “yes good im proud for you”).
since i get extremely uncomfortable when they kept talking about my ASD so then i felt like crying cause yk mental health issues + illnesses, etc shit being exposed and almost cried (they never knew bc i never made it obvious but my eyes watered under my hoodie), and yk I felt really really sad than my mood was today.
THEN THE BIG NEWS CAME.
since you never knew i was neurodivergent, i’m gonna let you know.
i didn’t know HALF of what he said because he spoke fast but
i managed to catch half (idk if half atp cause he got LOADS of diagnosis for me but it was too much and he spoke really really fast)
HE WAS FRIENDLY BUT
i FUCKING KNEW. that the spd was right. I WASNT SURE BUT HE SAID I HAVE IT. YESSS A REAL DIAGNOSIS.
he said im diagnosed with asd, adhd, spd (sensory processing disorder), tics (not like tourettes but he did say something WILL cause me to tic but it’s only anxiety that will cause it a few times but if it gets worse, i must tell him) + my anxiety will cause me to tic (like shivering and form different tics but its not like tourettes that people ACTUALLY have).
he also said my auditory sensory processing disorder as well (+ with sensory processing too), he said i had something sensitivity (idk what it was because he spoke REALLY fast) but i think he said sensory or sensitivity disorder (if you knew what it’s called, PLEASE lemme know).
stuttering disorder + high functioning on asd + low functioning on adhd (lemme know if functioning is out of date or not) and some other stuff.
BUT I GOT AN OFFICIAL DIAGNOSIS GUYSSSSS
i’ve tried to find the “congratulations on the neurodivergency cake” but I found this.
congratulations to me on my further neurodivergent diagnosis :))
cw: ableism against neurodivergent folks, discussion of police violence, contains a personal story about a negative interaction with security officers
Most of the time I exist in a strange middle ground where I pass as neurotypical to some, albeit a weird one while some people just assume I’m autistic. Part of the reason why I want to get a diagnosis is because while yes, people who assume I’m autistic sometimes treat me like a child, I rarely encounter outright hostility with them when I can’t hide my autistic traits. Neurotypicals seem to need to have a diagnosis disclosed to them before they’re willing to tolerate perceived strangeness. It’s that thing where it’s okay to bully someone for autistic traits, but it magically becomes discrimination when the person discloses a diagnosis. I see people talking about this a lot, but I want to emphasize the potential danger of not being able to prove your autism.
In meltdown, I have had campus security called on me. Fair enough. I couldn’t stop screaming. I can see how that might scare someone. They wouldn’t believe me that I wasn’t high. I had to give them way more personal information than I should have had to to convince them that I was not, in fact, taking drugs I wasn’t prescribed. I had to tell them what medications I was on, convince them that I was taking them, tell who my psychiatrist was, and that I was on a wait list for a therapist before they would stop trying to convince me to admit I was high. Before they would treat me like a person and not a threat. I essentially had to prove that I was an acceptable mentally ill to them.
First I say, so what if I had been high? So what if I wasn’t being "appropriately managed?" Even in those cases, it is not helpful and potentially dangerous for the person in crisis to treat them like they’re a threat. That’s ableist. Requiring people to convince you that they are receiving or pursuing certain treatments or otherwise meet specific standards of respectability before you treat them like a person is ableist.
What if I had been having a verbal shut down that day? I was barely able to talk at all in that moment. Speaking felt physically painful and I was struggling to form complete sentences. I was lucky I was able to communicate the necessary details to earn safety from them. What if I hadn’t been able to? What if they had been real cops? What if I hadn’t been able to say "no touch" or communicate other basic needs and the situation escalated?
What if I had had an autism card? That situation would have been much less terrifying. I would feel safer going out in public knowing that if I get upset and can’t communicate, I have a diagnosis other people are likely to believe to back me up. I can make my own warning card with instructions on how to help me, but ultimately, people don’t listen to disabled people, they listen to their doctors. If I say I’m autistic to an authority figure and later on I can’t prove it, I will be in trouble.
The same way I hope people in my classes assume I’m autistic so they are willing to be tolerant of my autistic traits, I hope people who can genuinely hurt me assume in my worst moments that I am autistic so they won’t fucking tase me.
If I, a white person, a housed person, am worried about being hurt because I can’t be clear about my autism, imagine what it’s like for people from other demographics that are already more vulnerable to police violence. People who are also less likely to receive an official diagnosis.
I am willing to discuss this and would love to hear other people’s perspectives, but I will not be debating people about my choice to self-diagnose.