While my last post was about the difficulties of this month now here; this post will mostly be resources and people you can look into to really help the autistic (and especially adult) autistic community.
I will say the first thing i would do is read Nuerotribes by Steve Silberman. I wrote about the book last year in my readings records. It has already places to start. Then i would look at direct people:
People : here is a list of several poeple I follow on multiple school networks. Neurodivergent rebel, agony autie, save the neurotypicals, Aspie world, everyday Aspergers, odd girl out, Neurodivergent people, yo samdy sam, Jamie (on break right now but has several videos), spectrumy, neurodivergent teacher, Aut-ish, the neurodiverse women, Greta Thunberg, “i Am autistic”, Autistic grandma and others. This is definiteliy NOT a comprehensive list and if you are an autistic advocate and would like to comment for adding your name, please do so. (some of these are twitters/youtubers/facebook)
Sites: these are so many sites to look into. I also recommend joining patreon, ko-fi and thru those the countless discord channels where discussions around these blogs happen with others in this community and some people make a living doing advocacy and artwork. It is also good to follow Neuroclastic on WordPress too who has several articles by mostly autistic people. Here is their main site: https://neuroclastic.com
Honestly, this video by Yo Samdy Sam pretty much explains the whole movement and my generic opinion on it. And sam’s excellent at explaining things : https://youtu.be/RHVLCeeOuPs
I also asked for some assistance from a friend for some of her recommendations (who has been doing the advocating for a little bit longer than me… Thanks to N—! I have some links to people above
Lastly, I would not seek out Autism $peaks or think blue (boo boo!). They not only have a history of discriminating against autistics (originally thought of as only a male disorder) but do not actually support the community. Kinda like the goodwill, they are in it for profit and that autism is a disease that needs curing. Otherwise, I would help educate those companies and communities who only see autism speaks and recommend people from this list. Perfect example?—I reached to Pieology corporate last year about them working with A$ and as a result i received a written email from a marketing manager how they will look into using more local groups for the 2020 fundraising. Now, i have no idea if that will hold up due to COVId-19, but I feel better 1) saying my 2cents and 2) that it may have made a difference. All it takes is people speaking. Being Autistic is a different brain processing, not an illness.
For many autistics, April is both the beginning of a month of overwhelming support and overwhelming fear. For while people start off the month as a joke in April Fools Day, it is also known as Autism Awareness Month. Take on April 2nd is typically held as the start date (to not confuse the joke holiday and according to the UN) and is currently known as “World Autism Day” (see wiki here )
April brings a lot of mixed emotions for autistics. First there are support networks coming from multiple angles trying to sponsor events, have dinners, and even encourage the wearing of Blue or the colored puzzle pieces above. (Well—until a world wide pandemic started sweeping the globe, but more on that one later.) Society as a whole is trying to show love and support for a community of people that specifically struggle with communication. These things can induce meltdowns or even be major triggers for autistics, even if intent is in the right place.
Second- April gives the wrong impression. It is not one month of support that many autistics need. They need full acceptance. They need full support networks for their struggling skills and encouragement all the time in their areas to shine for their super skills. In fact- autism $peaks collects thousands of dollars for research that neither supports the families and has a history of being derogatory or even offensive. (Even a few commercials I will not link.) It was not until this year they changed their blue logo (a color used because autism was originally thought of as a boy-only disorder) and many adult autistics do not like the puzzle pieces because it represents negativity, exclusion and even abuse.
I will say, what you should do this April, if you really want to help, is to find out the autistic adults and families and find out what they really need. (Well waiting until May is also a good idea.). And look carefully into “trend charity.”
I have been interested in language all my life. Well-the study of language. I enjoy seeing where words come from, how they have traveled through cultures and histories and what different languages look like and how they are all interconnected. Maybe its because it helped me remember words and their meaning better if i knew a word’s story or maybe its because just always had problems learning words and needed all the details.
So of course when I went to college and decided I wanted to be a theology major– I wanted to incorporate my love of language into my theology for my undergraduate thesis. Not only was it suggested I change my focus (no one in our faculty had a huge speciality in it and we did not have a linguistic program at school and therefore there was very little support), but I was told their just wasn’t that much material out there to do a research topic.
So since then I have made it my life’s goal to try and work together the idea of theology and linguistics (or the study of language-yes, those things can be different.) I spent most of my undergrad and seminary years not only in classes but understanding God, Jesus and the Biblical text with commentary, but also taking multiple language courses in hopes to find the right path towards discovering something new in the language/theological world. After I graduated, I worked on studying linguistics directly (almost got a second masters I was so interested) to try and find a way.
Let me tell you: when you tell a Sara she cannot do it-9 times out of 10 she will find a way to do just that thing. Thank you hyper focusing and my internal drive to find that one totally unique thing. See “nth” reason why I have a hunch I’m autistic.
So the other day I was thinking about how all of this works in with my autistic self. Sorry if this part is a little random but I was thinking that how and what we say in our theology is very important. Don’t get me wrong, our actions are equally important. More important sometimes. But the right words can have a lot of power. But How we communicate with people, especially those who may not use words or pictures in their minds, reflects on how we envelope them into the church. I also realized liturgy can have a crucial play in our linguistic theology. Think of chanting monks versus the rock n’ roll praise band.
So maybe we can start and inquiry here…who is with me?! comment below!
Being new to the autistic community online-I have sat thru countless fact filled hours of YouTube videos and social media posts. They are really informative for a newly self-identified autistic and can be a great place for finding support. Just this morning, I watched a video on audio sensory sensitivities and ear plugs. Wow-what an amazing tidbit of information it was. And while I personally don’t have a major sensitivity to sound (some times I do, depends on my processing level)– I did want to talk about a legitimate sensory sensitivity I do have that I believe shows a little of my autistic side: light sensitivity.
When I was a kid- I always wanted to wear sunglasses. in class, outside, you name it. Even my high school sophomore year softball team I was known as “Meeko” because I always wore the sunglasses outside at practice. However, I didn’t think much of my eyes because I could still see really well. Unlike my mom who had classes at 8 years old– I only needed to have my eyes checked every once & a while to make sure they were still 20/20. However, one year (I think after I got real vision insurance)–I went to the eye doctor preparing to have my eyes examined. I remember being confused when I didn’t need to bring another person with me. Don’t all adults bring someone because you’re eyes get dilated? Come to find out-my pupils are larger than the average person resulting in not only my eyes never having to be dilated, but also having a increased sensitivity to light. (And also cops thinking I am always drunk and shinning bright flashlights in my face-not cool cops, not cool at all.) I never really noticed the light sensitivity until I began to lose focus while working on my computer. I would get tired a lot more easily than expected. Then lights got “too bright” or I was always reaching for my sunglasses when walking outside. It was described to me once that my eyes were trying to take in too much information. I was thinking “yep, just like my brain.”
My light sensitivity increased as I got older and changed eye doctors–I started to inherit my father’s far sightedness. This means that I can see things better when they are at a distance. It creates trouble focusing , headaches for long periods on the computer and having to squint to see things up close. Ironically it relates to my ADHD and autism. If my own eyes have trouble focusing and my brain gets distracted or bored and I am a complete mess at processing people talking to me. The eye doctor finally recommended I get a brown or black tint in my glasses to help in the office. Let me tell you–those glasses were life-changing. Not only did I not have to squint–but the world got softer with less light.
Today I wear black tinted glasses in the office. I have to constantly tell people they are not transition lenses but at least they are super comforting for my sight. For outside-i pretty much need my sunglasses all the time. In bright sun, today in cloudy overcast. Hey I’ve even worn them in the office when I forget my standard glasses.
Other light sensitivities that have come to the surface are my annoyance with too many lights on in the house, having lights turned off above my desk and returning my glasses to Costco because I needed the tint (they do not offer it by the way.)
What sensitivities do you have? Audio/Vision/Smell ( I have a little bit of this but that’s for another time.) Leave a comment below–maybe those with sensitivities can help others see all parts of the world.
As I said-I wouldn’t do this every day. But I did want to track what is going on over time so here we are at the end of the first week of me taking meds for my ADHD.
So as the psych predicted, the initial intake of the Addarell wore off and im back to forgetting things, over and hyper thinking things and some of my other ADHD struggles. I realize meds don’t erase them but they can help my brain better control them. I went back to feeling lost in the millions of things I need to do and just spending the evening not doing said things. My anxiety has increased (there might be another realistic reason for that). No major negative thoughts, just “meh.”
Sorry this is short. But the week has flown by with the amount of preparation trying to happen.
So starting tomorrow, I will need to take 2 pills instead of one (20mg). We shall see how a non work day handles this after Friday cause thats a real test of time.
This blog is definitely more consistent with my blog’s theme: Musings of an Afterthought. The idea of a mild trail of thoughts after the original thought is mentioned. I thought I would give insight into my processing. This will not be very grammatically correct or orgsnized. Have fun!
Here it goes: The modern society likes to create division. The Either-Or dilemma. Only two sexes (make/female). Only two afterlives (heaven/hell). Only two of anything.
But in reality-the world isn’t like that. Afterlives have levels (even traditional thinking has three with purgatory at minimum) and science has discussed the truth that many species have more than just the either or option of sex. (Not fully researched right here and not opening up the political discussion-be nice in the comments.)
I think as an autistic and ADHD person – we are created to see the both-and of the world. Its. Ot exclusive, just that we are internally programmed to look outside the norm. In school I was always “standing on the fence” of the theological debate (hi friend who knows this!) or trying to compromise or work in both opinions or perspectives. I remember reading somewhere that Autistic people are more likely to struggle in trying to balance things because we want it to be good for all. And yes-I have experienced this struggle personally.
But I do think we need to spend more time figuring out how things work together better than apart. More Both than Either.
Just a thought… comment nicely… or see you next time !
While I will not be doing this every day for the rest of the time I am taking this medicine-i figured the first few days will be insightful at least. #EndtheStigma
So Day 2–for the first time I woke up on the first alarm. Like woke up, got out of bed and was awake. To be fair-i was awake at 6am already, cause i crashed so hard at 11pm last night i couldn’t keep my eyes open thru the three blogs i finished (see my previous post on Hyperfocus). But I have a feeling that is all related to my ADHD struggles that I didn’t know about.
You see-anyone who knows me knows I struggle with getting out of bed. I’m sluggish, even with telling my brain to “get out of bed.” It was really bad when I worked in Carson and had to leave the house at 6am. I was drive to work, then sleep in my car to get “more rest” until the office building opened. It was bad. It didn’t matter how much I slept, I was always tired. This has also become an issue with Church. I loce our eary service—but it starts at 8:30am and we live 45 minutes away. So getting up super early is extremely hard.
Then i read this article https://www.additudemag.com/adhd-sleep-disturbances-symptoms/. about sleep and ADHD and realized it was my brain probably preventing me from getting up and going. I also knew that PCOS has its issues related to sleep if you’re not taking your vitamin D. So I am excited to learn this may be the beginnings of better activity levels because i have found my brain’s help to function.
I have noticed one other thing: my talkative side has gone up. I partly know that it is because I am on a stimulant, but now I actually have to think about WHEN I talk. Like just now-I wanted to talk to everyone sitting around me at the Lab (bloodwork stop) but couldn’t. Why?- I think its not socially appropriate? So i kept to myself to keep blogging 😉 which is like talking to miscellaneous people. Hmmm…maybe ADHD and autistic people should blog and journal more. At least the extroverted people like me. It allows for “brain dumping” and release of stress to try and figure out where you fit in.
Thirdly, I have begun to notice I can legitimately stop myself from over-reacting to things. Now-its only happened with reacting to my son and only a couple times-but its an actual mental decision versus a physical habit with my brain catching up.
Anyways-lets see what the week on this medicatiom brings. If anyone wants to talk about their experiences going on new medication, feel free: this is safe space.