#getting a diagnosis

[my-autism-adhd-blog]

The Road to Diagnosis

The Autistic Teacher

[angelicgarnet]

the way people online talk about autism is getting really weird, like do they know that neurotypicals still have interests? that someone being passionate about a hobby doesn't mean they're autistic? you guys know that right

[pangur-and-grim]

Belphie feels good enough to climb!!! that's actually huge

[firefrightfic]

to anyone missing my writing please know i am also missing my writing

[jackalope78]

The Diagnosis

When I started this tubmlr back in December, I wasn't really quite sure what I wanted to do with it. I still miss Livejournal and have long wanted some kind of replacement. Now though, I need a place to work through medical shit, someplace mostly anonymous where I won't accidentally hurt my friends with my anger. Because oh my god I'm angry and hurt and scared, but I also don't want to put that on the people who love me because they don't deserve it.

So hello void, this is my scream. Feel free to yell back, I completely get it.

I'm going to put down a timeline of the past three weeks, because I don't want to forget it.

March 21 I noticed my feet were numb. Like a Reynaud's attack but I wasn't cold. Thought hm... I should probably go in to the doctor about that.

March 25, noticed my legs were not quite as sensitive as they should be after a shower, the towel felt weird when I dried them

March 26, morning. Called the helpline for my insurance. The nurse I spoke to was very nice and calm, but I could hear the "OH SHIT" in her voice as she said, "I need you to go to the emergency room, these are the hospitals near you that we work with, please don't drive yourself, if you can't get someone to take you, we can arrange for an ambulance"

This is indeed about when I realized this was serious. still didn't know how serious but you know... maybe it's better that these things happen in stages.

Anyway, I called my very dear friend. someone I knew was currently taking a work sabbatical, and asked her if she could come pick me up and take me to the ER. I then went to my weekly work meeting, as I knew that it would be a while before my friend would arrive. Meeting went well, friend showed up, I told my boss I needed to go, and off we went.

I was seen pretty quickly for being a non bleeding patient in the ER. They did some tests, including an MRI of my spine, and that showed bad things. Bright spots. Demyelinating Fassomething I can't be bothered to look up how to spell right now. So around 4pm (we got there around 11:30AM) they admitted me to as an inpatient there in the hospital because they wanted to do more tests. Another MRI for starters. My friend, who stayed with me the whole time, did I mention she's a dear friend and an absolute champ, went to my apartment to bring me pajamas and feed my cat and get some overnight supplies like toothbrushes and toothpaste and deodorant. She also made me a little snack "hey you're in the hospital and it sucks" care package and it was the absolute best. Have I mentioned she's the most amazing? Cause even in this relative anonymity she deserves a shout out. I let my boss know that I was being admitted and then called my parents to give them an update. They live halfway across the country and I didn't want to worry them, but also they should know. I told them I was fine, don't panic. Don't fly out. I would keep them updated.

Here's where my timeline goes kind of fuzzy? Time is liminal in the hospital and it can be hard to keep track. It both expanded and shrunk down to nothing. I did get another MRI, this time of the brain and neck and both with and without contrast. I'm pretty sure that happened on the 27th. A neurologist came to see me. Again I think on the 27th. Due to the results of the second MRI they said they wanted to do a lumbar puncture, but the techs were swamped so it might be Thursday, but more likely Friday. The neurologist also mentioned that she's leaning towards multiple sclerosis, but she couldn't be sure until after the lumbar puncture. But I should prepare myself for that.

Sometime on the 28th my arms went a little numb. Because stress. So they decided to do an intravenous injection of a steroid. which meant I had to get a new IV port put in because damn my little rolly veins and their inability to hold a port. That in an of itself was an ordeal. I had quite a few nurses come in to try and find a good vein, they had to call in the specialty nurses to do it, but since they had a trauma to deal with, it didn't happen till late. I was there in the bed, one nurse on each arm, putting in two ports so they wouldn't have to do it again. I absolutely went to the zone out place. I shut my eyes and started humming "In The Bleak Midwinter". Why that song? I HAVE NO IDEA. I love it, it's one of my favorite carols, and it's soothing in a way I can't describe. The weirdest thing for me is that since they came so late in the night (around midnight I think) I didn't have my glasses on, so I have no idea what either one of them looks like, one was male, the other was a woman with big curly hair that she had up in this high poufy ponytail. They were just blurry shapes with hands.

Friday the 29th I got the lumbar puncture. WHICH WAS A NOTHING PROCEDURE. Holy cow, medical dramas lie about that one. I went in, they had me lie on my belly, they numbed the skin with something that felt like a tiny pinch, and then they raised me up on an angle. And the doctor said, we're just collecting the fluid now, we'll be done soon and I said, "wait you stuck me already". Absolutely nothing. Best thing I had done. Way nicer then the MRI. (I hate those things).

I was released late Friday, I had another injection and then I could go home. I needed to go to my provider on Saturday for the third injection (I ended up being told to go have it done again on Sunday and Monday).

On Monday April 1, I had some kind of weird reaction to the stress and just everything and got a bout of vertigo. I did go back to urgent care, a friend went with me. They wanted to do another MRI, just incase, so it was anther overnight for me. Then Thursday April 4 I had something? I don't remember, but once again I was back at urgent care. I was fine. And they found a last minute appointment with a neurologist, which was nice because the one I had originally was for April 23rd to go over test results. And that's where I got my diagnosis of multiple sclerosis. Yay. It's been a week now of digesting and processing the news. I have had a call with a clinical pharmacist to go over the medication they're going to put me on. I need to get blood drawn for more lab tests. I have an upcoming appointment with a physical therapist and another doctor. But god is this a lot to process and deal with.

On one had, it explains SO FUCKING MUCH about various things that have been happening over the past- god I don't even know -5ish years? On the other hand, why the fuck didn't I push harder or even go to the doctor about these things. Why did I (not even the doctor, but ME) just chalk all this up to being older, fat, and out of shape. Please, please if I could tell the internet one thing, don't chalk things up to getting older. Please talk to your doctor about small changes that you notice. Even if you do think it's just that you're getting older and you're kind of out of shape and maybe a bit fat.

[sufferblr]

so sad that in america the only options after a terminal cancer diagnosis is either to make meth or make saw traps

[dokani]

decided i’m gonna get this printed as a poster and just hang it above my bed so each morning i can wake up feeling like a victim of medical malpractice

[ivebeenmade]

Have to go back to the doc in a few days now that my latest blood test results are in. Not anemic, thyroid normal. Still having the same pain, but most days it's tolerable enough to get around and go to work. But the pain is *real*. I think any doubts about having fibromyalgia by myself or my docs have been ruled out.

[vizthedatum]

My evolving decision-making and thoughts on getting the official autism diagnosis (one of many posts I will make and have been making)

Realizing and internalizing that I'm autistic the past 1-2 years has been a significant upheaval in my life. It's brought a lot of clarity.

Yesterday, I had a long and sad conversation with my primary care provider (well, she's a PA-C (Physician Assistant-Certified), but honestly, I trust her more than the doctor she works with... I call her my PCP because she knows her stuff and actually helps me coordinate everything) about my getting my autism diagnosis... and how not having been evaluated or diagnosed as a child has severely impacted the quality of my life (made me more prone to abuse, lack of support, increased risk for stress and inflammation, etc.).

For those who know, getting an official autism diagnosis on your chart as an adult is difficult. Not many practices will do it, and what's more, the ones who will do it... there are long waitlists, insurance incompatibilities, and outdated and tedious evaluation methods.

After all (as I remind many people), the way that autism and the spectrum are characterized in the Western medical system is based on studies done on young white boys. Also, in my professional and personal opinion, the DSM-5 is outdated and not very generalizable to most of humanity.

Additionally, getting the official diagnosis on my chart puts me at risk for discrimination. I already have credibility issues with my healthcare providers... although since getting my PhD, it's gotten a lot better? And also being more assertive in general. I do a lot of research before going to a healthcare visit, but that's a privilege I have that not many of my peers have. I was diagnosed with many of my chronic conditions later in life, which was unfortunate.

The way that US socio-politics is going... being officially diagnosed as autistic will put me at risk for not receiving gender-affirming care. I really want to be on testosterone and get top-surgery after breastfeeding my future child. An autism diagnosis in some states, the way legislature is going, may prevent me from getting that care. And I may not be welcome in many countries for being autistic.

--

I have struggled for so long. And so have my friends. Most of my friends are neurodivergent (autistic, ADHD, DID, BPD, etc. etc.). Some are diagnosed, some are self-diagnosed, and some are figuring it out. And even then, most of my friends have been traumatized due to a lack of support.

They say that autistic people can't be social. I've been friends (very close friends) with autistic people of varying levels of social "functioning" my entire life. When I've taught swimming or academic subjects in universities... I could reach autistic people far more readily than my "neurotypical" peers/colleagues. It's not that we can't be social... we have our various ways of interacting with other beings and our environment. And many of us have masked and mimicked our way into mainstream society to... survive.

The perception of what the spectrum is needs an overhaul.

I even had (and this will be a whole other post) a discussion about the nuances of "black-and-white" thinking that many autistic people do... with my therapist.

I hate "functioning" labels that get put on neurodivergent folk.

I don't know if it's obvious but the reason why a lot of autistic people struggle in this world is not because of us.... it's because our environments are not built or accommodated for us.

Being autistic isn't a disease. And while it's a disability - it's only a disability because we are not able in how our environments and socio-political systems are structured.

[inkskinned]

even 2 years ago people still said autism with a whisper. it was also how people sometimes whisper lesbian, like they're afraid of uttering a slur. autistic was either an insult or it was something terrible, a horrible burden only select people endure. "select people" were usually 9 year old boys and skinny white men.

they are not hispanic young adults with a dog and a life and friends. i can make (sustained, calculated, painful) eye contact. with certain people, i don't even have to count how many seconds i am holding their vision - i can just look at them. i can wear clothes that bother me, i will just have a worse day than usual. i might cry about any changes to my schedule - but change is scary! this is normal!

when i was 16 it was OCD. i mean that was the thing everyone said. i totally have ocd. they would arrange 6 colors of gel pen in rainbow order (no worry for indigo feeling left out) and they'd be "so ocd" about it.

if you struggle with intrusive thoughts, be careful at this next paragraph, but. at 16 i developed a compulsion that involved self-harm. my ocd was convinced i was simply forgetting that i'd hurt someone terribly - a thought that persisted for no clear or delineated reason.

at some point i will probably write about how the idea of "morally pure thoughts" was hell for me and others with ocd, but this was the odd dichotomy for many of us: they liked our "aesthetic", but were genuinely repulsed by our lived experience. "intrusive thoughts" now means "cutting your hair in the sink" instead of talking yourself down from believing horrible things. "so ocd" is a label without any true understanding.

it's something i've talked about before - in multiplicity - but i firmly believe in the veracity and necessity of self-diagnosis. i think it saves lives and it saves tragedies from occurring. as someone raised in a house that wasn't safe, self-diagnosis was, for many years, the only viable option. 15 and honestly googling: am i depressed or are there demons affecting my behavior.

but it is not genuine self-diagnosis anymore, most of the time. it is a strange, blanched version of that whispered word autism. now certain traits are constantly seen as "autistic" - any passing intense interest. any flubbed social interaction. people say it while laughing - a touch of the 'tism.

and i like the acceptance! i do. i like that people are talking about it. i like that if i self-identify, more people speak up and say me too, bitch. but there is something-else quietly happening, the way it happened to OCD. the quirky, "fun" parts have been washed and sanitized and removed of all suffering. now it is just something that makes you "a little bit silly."

it took me 27 years on this planet before i learned to make friends. something about me just seems incredibly odd, i guess, some kind of radiation monitoring. someone once (in a way that was almost friendly) told me i am doing the right things, but in a way that's off-putting. i have scoured myself raw attempting to be charming.

someone on tiktok does a deep dive into their particular passion. the top comment says "what kind of autism is this lol". like we are a breed of animal. like it has no influence on our experience. like our life is a fresh breeze, an open meadow.

more often for me, life was a drowning.

[shiverspooky]

in a wild and unexpected turn of events I’ve become obsessed w saw (2004) so pls take this unserious Adam appreciation post 🤲🏻

[mental-health-advice]

Hello! I think I might have ADHD. I'm already diagnosed w Autism, but some friends (who do have ADHD) are saying I might have both. I was on Ritalin in high school for awhile but my mom gas light me into thinking I didnt need it even though it helped. I know you can have both and I've looked into it and it seems to fit, but i really dont know anymore. Also worried I might be just making this up in my head. Task initiation is really hard so it could be months before I actually contact my Dr. Any thoughts? Or tips?

Hey there,

It can be really tough when friends try to throw upon us what they view we might have diagnosis wise. I can only imagine that your friends have your best interest at heart but it can also be quite dangerous when we or others try to self-diagnose.

The reasoning behind this is because whilst yes, you may have ADHD, you really need a definite diagnosis to enable you get the best support and treatment possible. Without a proper diagnosis you could not only misdiagnose yourself or also prevent yourself from receiving that support and treatment.

I am so sorry that your Mum made you feel as though you didn’t need to take the Ritalin despite it being helpful for you. Would a proper diagnosis of ADHD give your Mum the reassurance that being on this medication is beneficial for you at this point in time? I know that your Mum may not ever feel like you should be on the Ritalin but if there was a chance that your Mum may be on your side with it, I guess you could say, don’t you think it’s worth a try to go see your doctor?

In regards to you finding doing tasks really difficult, is it possible that one of your friends could make the appointment for you? And even maybe attend the appointment with you if you feel that will be helpful and give you that initial push to see your doctor? Just an idea!

I really hope that this has helped a bit and please do let us know if we can help to support you in any other way!

I’m thinking of you and hope that you are going well!

Take care,

Lauren  

[thegunslingerletmedrop]

[lazylittledragon]

does anyone else experience the adhd-created nightmare of having to choose between having a healthy daily routine and getting anything done at all

[pallanophblargh]

I have a disproportionately loud mess of a head for no discernible reason* so it’s kind of a miracle that I spent the last month and some change willing myself to wield watercolor again. Witness the struggle! A long overdue color sketch for a (super patient) client.

Just watercolor with a boop of gouache.

*they are a mush of small but immense problems??? Executive dysfunction being maximized by meds the main culprit…

[my-autism-adhd-blog]

Undiagnosed Autism

Autism Parenting + Wellbeing