#I love having adhd and autism and how auditory processing disorder is never a problem (sarcastic)

[softichill]

I never thought I could get into a podcast due to Auditory Issues but learning that there are well-known accurate transcripts I could read along to while listening has been live-saving

[msmental-madness]

Intro.

Hello world,

My name is Penelope. I'm a 32 years old woman who has been having a really hard time lately managing my mental illnesses, on top of being "newly" diagnosed with Multiple Sclerosis in October 2021.

I am someone who has always been a little too much of an open book and overshare. I am completely open about my mental illnesses and have no shame in telling it like it is because people should know what it's like to live feeling as I do on a daily basis. It's hard to live a life feeling misunderstood. I feel like shit every day and just hope that one day my life will end because I'm too much of a coward to end it myself.

I grew up with parents who were older and grew up with the belief that mental illnesses aren't real or if you have one, you're deeply flawed. When I was 19 years old, I had to sneak around to be assessed with ADHD, but then formally tested again at a center in 2020 due to lack of records. Prior to this test, my Mom disclosed to me that I have an Auditory Processing Disorder, which was discovered when I was in PRESCHOOL. I was in speech therapy for many years. It blows my mind how my parents knew something was wrong from then on and did nothing to help me with school. All because "they didn't believe". It also was the early nineties so for all I know, maybe there was a lack of information about it at the time. It's still easier to blame my parents....so...I'll do that. ;)

I was always a strange child. I didn't wear jeans until high school because I didn't like how tight they felt. I always wore baggy clothes up until high school as well. I'm an incredibly picky eater. I don't eat fruits and vegetables because they make me gag or throw up. The only fruit I will eat are Macintosh Apples and they can't be fresh. I have to wait a couple months until they're mushy but not completely rotten. While on medical leave, I was assessed for Autism and it turns out I'm on the spectrum. I'm considered high functioning, which makes sense to me. I've had the same job for nine years; I was one month shy of seven years at my first job. I've managed to buy my own home in just my name. I have my own car in my name. I must be doing something right! I was also diagnosed with Borderline Personality Disorder, which is mainly what my blog will be about.

In 2018, I was sent to an outpatient program to address my worsening depression and was diagnosed with PTSD. I had ended an abusive engagement a year before and I was having a lot of difficulty getting past that. I also endured a lot of mental and verbal abuse as a child growing up and that has followed me into my adult life between being the target in my family, constant bullying from a former boss, and former lover. I'm hoping I still have your attention but believe me, you'll appreciate knowing the backstory as to why I'm so fucked up.

Before the ADHD and Autism diagnoses, I struggled with depression and major anxiety for pretty much my entire life. I just always knew there was more to how I was feeling based on my thoughts and behavior. I never thought it was normal how explosive I'd become while hearing people chew food or how I'd go from 0-60 with my mood swings. I take pride in being weird and quirky but a lot of people are impatient with what is actually my form of OCD. No one understands me at all.

I would love to blame the lesions on my brain for my mental problems, but I know that's not it. The neurologist told me that I have so many lesions on my brain that I've probably had Multiple Sclerosis for at least a decade. I'm not even mad or sad about it honestly. I knew something was wrong for a long time and no one believed me.

When I finally had a diagnosis of Borderline Personality Disorder, it changed my life. I researched it and still do and everything resonates with me. Going forward, the rest of my blog will focus on this and flashbacks to my past. I will be brutally honest about what thoughts run through my head because I think it's important to be honest about how sensitive we are and what our thought process is. I hate being told I'm "dramatic". I could slap anyone who says that. They are lucky to not have to play what I call "Mood Roulette" on an hourly fucking basis.

I am hoping that if you've made it this far, you will continue to read. I know this intro wasn't super exciting but I will be more interesting going forward. Thank you for reading! Just remember, you're not alone, and you have an ally <3

[a-queer-seminarian]

so ya wanna know about autism: masterpost

I give this google doc link out to individuals a lot, and realized it might be useful for a lot of people if i shared it more widely. It’s a masterpost of a whole bunch of Autistic Stuff -- here’s the link to the actual doc, but i’ll also post it all here on tumblr (under a readmore after the table of contents).

(edit: if the hyperlinks aren’t working for you, here’s the google doc url that you can copy and paste into an internet browser to access everything: https://docs.google.com/document/d/16BqhRv4IlZ6KcElGAEZOx8sFYwRs4W1jF-ddY_XKYnE/edit?usp=sharing )

Please spread it around (including sharing the google doc link outside of tumblr wherever you want). Feel free to comment with more resources, tumblr posts, articles, etc. that you find helpful! And if any links are broken, let me know.

It can be a major challenge for adult autistic folks to find content for us and by us, because so much “official” content is 1) ableist and harmful and 2) geared towards parents of autistic children. So I’ve compiled just about every resource I’ve got that discusses autism by and for #actuallyautistic folks.

TABLE OF CONTENTS

- ORGANIZATIONS AND SELF ADVOCATES

- DEFINING AND DESCRIBING AUTISM

misc.

Metaphors and images for autism

Disability models

Issues with Functioning Labels, ideas of “Mild” - “Severe” autism

- AUTISM AND INTERSECTIONALITY

misc.

Autism among women

Autism and race

Autism and LGBTQ

- STUFF ON SELF DIAGNOSIS

misc.

Is it ADHD or Autism??

Tests / checklists

- STUFF ON PROFESSIONAL DIAGNOSIS

- AUTISTIC PRIDE / CULTURE AND HISTORY!

misc.

Autism / disability history and culture

The Neurodiversity Movement

Person first vs. identity first language

Cureism

- AUSTITIC TRAITS (BEYOND THE ONES COMMONLY DISCUSSED!)

Misc. - samefoods, lists, needing to know what to expect, etc.

Stimming

Communication stuff - misc. - Verbal/nonverbal - Infodumping - echolalia - Prosopagnosia - Aphasia - Eye contact

Special interests / hyperfixations

Auditory Processing Disorder

Sensory issues / Sensory Processing Disorder

Meltdowns and Shutdowns and Burnout

Executive function

Emotion stuff

- MASKING / PASSING / SCRIPTING

- WHY AUTISM SPEAKS AND ABA ARE SO BAD

- MISCELLANEOUS

Suicide

Allyship / for allistics - For parents of autistic persons

More non-speaking autistic self-advocates

misc.

_________________

SOME ORGANIZATIONS AND SELF ADVOCATES

ASAN!!

The Autistic Woman and Nonbinary Network

Amethyst Schaber’s “Ask and Autistic” YouTube full of videos on various autistic stuff

Lydia X.Z. Brown / Autistic Hoya 

Dr. Nick Walker

Mrs. Kerima Çevik

“Non-Speaking Autistic Speaking” - Amy Sequnzia’s blog

“The thinking person’s guide to autism”

The How-To Wiki for autism is actually really helpful! 

Ollibean blog .

DEFINING AND DESCRIBING AUTISM

Video: “What is autism?”

“About autism”

“What being autistic means to me”

Myths about autism .

Metaphors and images for autism - “Autism is a sundae bar” - “Autism is purple” - “Understanding the spectrum” comic - Another visual on the idea of a spectrum - And another visual on the spectrum - not an on-off switch .

Disability models - Understanding disability models - Video: models of disability discourse .

Functioning Labels, “Mild” or “Severe” autism - Article on functioning labels - “What’s wrong with functioning labels? A masterpost” - Another article on problems with functioning labels - “I don’t experience my autism mildly; you experience my autism mildly” - A non-speaking autistic who is labeled non-functioning discusses labels - “Most people would consider me low-functioning, but I hate that word” - Tweets from actual autistics on functioning labels - How the same person may be labeled low or high functioning at different times - “Mental Age Theory hurts people with disabilities” .

AUTISM AND INTERSECTIONALITY

Article on autism in communities of color + in the LGBTQ community

Autism, intersectionality, and STEM college outcomes

Articles on intersectionality on The Art of Autism .

Autism among women - A reminder about talking about differences in autism in “females” - “I thought I was lazy: the invisible struggle for autistic women” - “The women who don’t know they’re autistic” - “The gas-lighting of women and girls on the autism spectrum” .

Autism and race - “Being Autistic, Black, and Femme” - “Black and Autistic: Is there room at the advocacy table?” - “Autistic, Gifted, and Black” - “I, too, am Racialized” - Autistic Hoya on being Chinese & a transracial adoptee - Video: “Growing up BLACK in a neurotypical legal system” - The Autism Wars: Mrs. Kerima Çevik’s blog .

Autism and LGBTQ - “Autism and gender variance - is there a cause for the correlation?” - “The intersection of autism and gender” - Issues being transmasc and autistic - “Gendervague: At the intersection of Autistic and trans experiences” - “I’m an autistic lesbian and no, I don’t wish I were ‘normal’” .

STUFF ON SELF DIAGNOSIS:

A self-diagnosis masterpost!

Autistic self-dx is valid

“Reasons why self-dx is good from the pov of a professional” 

Some reasons why autism may go undiagnosed 

“Five reasons I am self identified as autistic”

“Beware of gatekeeping”

A masterpost of “resources for women who believe they might be autistic”

A therapist who’s never met an incorrect self-dx-er .

Is it ADHD or Autism?? - Links to information on the intersections between autism and ADHD - A list of things that are more ADHD, things that are more autism, and things that are both - Science: decoding the overlap between ADHD and autism - The concept of neurodivergent “cousins” .

Various tests / checklists: - ASD Checklist - List of inclusive autistic traits - Book: I Think I Might Be Autistic: A Guide to Autism Spectrum Disorder Diagnosis and Self-Discovery for Adults .

STUFF ON PROFESSIONAL DIAGNOSIS:

Privilege in being able to get a diagnosis

Pros and cons of getting one

Someone answers the question “Was it worth it for you to get diagnosed as an adult?”

Professional diagnosis can get some people deported :/

This person’s journey from self-dx to pro-dx .

AUTISTIC PRIDE / CULTURE AND HISTORY!

The wiki how-to on accepting your autism

The wiki how-to on autistic strengths 

“7 Cool Aspects of Autistic Culture”

“I’m autistic and proud of it”

“You are not a burden” 

“What is self advocacy?” .

Autism / disability history and culture - Video: “Is autism a disability?” - A google drive “disability library” full of amazing content - A tumblr tag full of posts with autistic history - Book - Loud Hands: Autistic People, Speaking includes essays that explore the history of autism and of autistic self-advocacy - Book - Neurotribes: The Legacy of Autism and the Future of Neurodiversity .

The Neurodiversity movement - The neurodiversity paradigm - Video: basic terms and definitions - Video: what is neurodiversity? - Liberating ourselves from the pathology paradigm .

Person first vs. identity first language (“person with autism” vs. “autistic person”) - ASAN on identity first language - Why it matters - Video: Autism ACTUALLY Speaking - Science: a study on what labels actual autistic persons prefer - An image showing the difference between person first and identity first language .

Cureism & seeking causes of autism - Video: “Autism and the disability community: the politics of neurodiversity, causation, and cure” - Video: Self advocacy in a culture of cure - An analogy against cureism - It’s okay that some autistics do want a cure - Quotes on Truth Is by Julia Bascom about not needing a cure - Cureism is eugenics - “If a cure is found, no one will force you to take it” .

AUTISTIC TRAITS (BEYOND THE ONES COMMONLY DISCUSSED!)

“Thinking about patterns of opposite extremes among autistic people” (e.g. how we tend to be sensory avoidant or sensory seeking, extremely gender conforming or extremely gender nonconforming, hyper-empathetic or hypo-empathetic)

An essay on inclusive autistic traits

This tumblr is dedicated to answering people asking about whether various things are autistic traits!

This person lists the reasons they think (know) they’re autistic; the list includes a lot of traits that often aren’t talked about 

“Some autism things” .

“What are samefoods?” - “Why do autistic people tend to samefood?”

It’s okay if you don’t like certain things / avoid certain things because of your autism

Wanting/needing to know how long something will last, what to expect .

Stimming! - Video: what is stimming? - Video on self-injurious stims - Video: autobiographical look at stimming and its role - More than a coping mechanism - A masterpost of examples of various types of stimming - Video on vocal / verbal stimming - Examples of vocal stimming as communication - A tumblr blog with a tag full of examples of body stims .

Communication stuff - Trouble with volume modulation; repetition; inconsistent talking habits - Autistic idiolects - Autistic dialect? - Autistics communicate differently amongst each other! . - Verbal/nonverbal - - Selective mutism - - Semiverbal communication - - Different amounts of access to speech - - A person on being non-verbal and using AAC - - People who are nonverbal still deserve to be listened to .

Infodumping - What is infodumping?

Echolalia - “Autism and Echolalia: what you need to know” - What is echolalia? - A tumblr blog’s tag featuring examples of echolalia

Aphasia and autism

Prosopagnosia (Face blindness) - Science: a study confirming that some 67% of autistic persons have some degree of facial recognition difficulties - Science: a study offering theories for why this is!

Video: Autistics and eye contact - Science: Researchers explore why autistic people avoid eye contact

Tendency to overexplain .

Special interests / hyperfixations - Some info on hyperfixations - Video on special interests - Emphasizing the intensity of these things - “What’s so special about a special interest?” - “Why we love what we love and why it should matter to you” - Not every autistic person knows everything there is to know about their special interest - “Interest hopping” - Dividing our life into “eras” of special interests .

Auditory Processing Disorder - Examples of APD - “You might struggle with auditory processing if…” .

Sensory Processing Disorder - Video: What is sensory processing disorder? - Video: a virtual experience of what it’s like to be at a party as someone with SPD - A post about some of the weird sensory stuff that many autistics experience (such as feeling nauseated when your real issue is a headache) - Many sensory issues aren’t just annoying, but physically painful - Difficulty in explaining autistic hypersensitivities - Auditory sensory musings - Trying to describe sensory overload - Not noticing when we’re hungry - Weird tolerance for big pain, intolerance for small pain - Science: “Unseen Agony: Dismantling Autism’s house of pain” - Tumblr blog with a tag of other posts about sensory issues .

Meltdowns and Shutdowns and burnout: - Meltdowns vs. shutdowns - Video: “What are autistic meltdowns?” - Video: “What are autistic shutdowns?” - A description of meltdowns - Signs of a shutdown in autistic people - How to support someone having a shutdown - Science: “Autistic shutdown alters brain function” - How to avoid meltdowns - “Dealing with meltdowns” - “The protective gift of meltdowns” - Video on autistic burnout - Article on burnout - Science: Autistic burnout described by a researcher - An article on autistic regression (burnout) - “Help! I seem to be getting more autistic” - talks about how things like burnout, aging, new environment, being around other autistics, and more can cause this .

Executive function - Video: “What is executive functioning?” - A chart describing the different aspects of executive function - “Executive functioning problems - a frustrating aspect of being autistic” - Autistic inertia .

Emotion stuff (including empathy) - Our emotional regulation is different - Article: (some) people with autism can read emotions, feel empathy - Video on misconceptions around autism and empathy - “Double standards: The irony of empathy and autism” - Science on the “double empathy problem” involving relationships between autistics and non-autistics - Not a bad person for not having empathy - More musings on autism and empathy - “Autistic grief is not like neurotypical grief” .

Alexithymia: - Science: Overlap between autism and alexithymia - Video: what is alexithymia? - “I don’t know how I feel”

MASKING / PASSING 

Video on passing

An infographic on autistic masking

Another video on masking / “hiding” in a neurotypical world

We are not obligated to mask or “act less autistic”

When you mask less and get told “you’ve been acting more autistic”

Getting called high-functioning because you mask/pass well

Scripting: - Video: what is scripting? 

WHY AUTISM SPEAKS AND ABA ARE SO BAD

A guide to identifying good autism organizations (and how they can improve!)

Autism Speaks:

Some facts and statistics 

An AS masterpost

Another AS masterpost

Video: What’s wrong with AS?

Video: a non-speaking autistic’s response to discussions between Autism Speaks and GRASP

“Enough with the puzzle pieces”

“I resign my roles at Autism Speaks”

“Responding to Autism Speaks” .

ABA:

Video: what’s ABA? 

“Studies find thin evidence for early autism therapies” 

Masterpost of why ABA is harmful

More on how ABA is abusive even if a kid “seems to like it”

An autistic describes ABA’s “quiet hands” method

And another post on how ABA is harmful

Trauma and autism

Alternatives to ABA

MISCELLANEOUS 

Suicide - Video: Speaking to suicidal autistics - Science linking autism and increased suicidality - Video: “diagnosis saved my life” .

Allyship / for allistics - Video: How to be an ally - Resources for supporting autistics during Autism Acceptance month and year-round! - Autistic accessibility needs - “How to be a friend to autistic people” - 15 things you never say to an autistic person - What to say / not to say to an autistic adult - Video: what shouldn’t I say to autistic people? - Video: Things not to say to an autistic person - Video: “Isn’t everyone a bit autistic?” - Don’t talk about “mental age” - “To those who tell autistic persons ‘everyone experiences that’” - Why it’s not helpful to say “well I don’t think of you as disabled / as autistic” - How to support a loved one who’s gone temporarily nonverbal - How to support someone having a shutdown - Help reduce meltdowns in a loved one - Don’t restrain an autistic person having a meltdown - Understanding why autistics seem “so picky” - Making communication easier for your autistic friend - Avoiding ableism against AAC users - How to protect your autistic employees from ‘no script found’ situations” .

For parents of autistic persons - “Don’t Mourn for Us” - “You don’t ‘lose a child to autism’” - Advice from autistic adults on treating your autistic children with respect - A masterpost of advice for “autism parents” - It’s okay if your kid doesn’t hug you or say “I love you” - “They keep publishing these violent articles” - “When you’re autistic, abuse is considered love” - You don’t have to tell everyone who comes across you and your kid in public that your kid is autistic / you don’t have to constantly apologize for your kid! - Your kid isn’t bad / uncooperative just because they have certain differences - Don’t tell autistic adults we are “nothing like your child” - A tag full of more tumblr posts about / for “autism parents”

More non-speaking autistic self-advocates - Video: “In My Language” by Mel Baggs - Mel Baggs: “Don’t ever assume autism researchers know what they’re doing” - Lysik’an: “You don’t speak for low-functioning autistics” - Film: Deej

Autistics and the idea of “getting out of your comfort zone”

Autistics accommodate allistics far more than the other way around 

It is icky when autistic persons are only valued when we’re “productive” 

Parents who are themselves autistic

Autism as genetic? - Science: “Autism Genetics, Explained”

Science: links to some studies on autism and gastro-intestinal issues, autism and caffeine, autism and sleep, autism and stimming, autism and queerness, autistic strengths, and more

[autisticeducator]

Autism is not an umbrella term

…and I seriously think its use as an umbrella term for not just autism but also the comorbid conditions that often run along with autism by doctors, teachers, and parents deeply explains a lot of the use of the functioning labels and the misunderstanding of how it is a spectrum (as in not linear). Okay, to start: Rarely is an autistic just autistic. Can it happen? It is possible but it rarely does. And because autism is a pervasive developmental disability, any other condition we develop (comorbility or not), autism will affect how it presents itself. Usually an autistic is almost expected to have at least one comorbid condition. Common comorbid conditions: •ADHD •Sensory Processing Disorder* •Dyspraxia •Learning Disabilities such as dyslexia/dyscalculia •Epilepsy •OCD •Tourette's •Auditory Processing Disorder •Anxiety •Depression •Sleep problems and disorders •Intellectual Disability •GI/digestion problems *Now part of the diagnostic criteria for ASD in the DSM V and doesn't need to be diagnosed separately. Not sure if the ICD 10 criteria includes sensory issues as part of the diagnostic criteria. The thing is that the comorbid conditions should be diagnosed separately so that they can be properly treated and accommodated for. Yeah, except that often doesn't happen. It's happened with me and I see it all the time with my students and with riders at the barn that I assist with. My own doctors love to lump whatever they can under autism so they don't have to address it. Never mind that I could use some OT for the dyspraxia I deal with, an official diagnosis and some treatment for the ADHD I know I have, and whatever will help for auditory processing disorder (besides an official diagnosis to further help with accommodations when I go back to school next spring). I really should start pulling out that "I'm a teacher" card if it will force them to listen to me. The problems I have with that is: •Most of my colleagues don't know much about disabilities and shouldn't be regarded as remotely knowledgeable on the subject •My knowledge about these disabilities in adults came mostly from lived experience and self advocacy and not from any of my education course work. When it comes to kids, I got additional knowledge by working with disabled kids. •Not everyone has this ability. No one isn't doing the autistic community any favors by continuing this practice of lumping other conditions under Autism as if it were an umbrella term. We know it is hard to figure out what is and isn't autism. I play the "Is it Autism or ADHD game" every day. But it benefits no one and hurts all autistics to keep doing this.

[pomrania]

Open letter to Script Shrink and scriptAutistic

I don’t follow @scriptautistic, but I do follow @scriptshrink, and that latter has reblogged posts from scriptAutistic so that I can see them. So, Script Shrink, thank you for that.

Disclaimer: this is all stuff that I thought and experienced. Not everything I believed at the time was true, or nice, or pleasant, and for all I know there may still be incorrect information in here (sorry about that), but it is honest.

I was diagnosed with Asperger's back when it was a diagnosis, some time in high school I think. I never looked up much information on it. I didn't look up info on Tourette's or ADHD either. I didn't want to feel like there was anything wrong with me, so I avoided it as much as possible.

The first time I went to university (long story, not relevant here) I met someone who’d also been diagnosed with Asperger’s. I loved being around him -- looking back, I can tell that I loved him, even if I hadn’t yet understood that it was in a non-romantic way -- but sometimes I felt bad, when I compared myself to him. He had lots of friends. I had him, and whoever wasn’t telling me to shut up at the moment. He had a roommate that he got along with, and lived comfortably with the other people in his residence. I’d known from prior experience that having a roommate would be a Bad Idea for me, and I ended up getting kicked out of the townhouse-style residence after less than a month. We had the same diagnosis, so what was wrong with me, I would wonder, that he could function so well with others, and I couldn’t?

Skip ahead a few years. I hadn’t seen him in a while (and still haven’t) because of unrelated reasons. I was at a different university, studying linguistics, and took out a copy of the DSM-V from the library for the lulz. I ended up finding out that Asperger’s was no longer a separate diagnosis because one of the qualifiers had been “no difficulties with language” and pragmatics was a part of language. From my linguistics courses, I knew what pragmatics was: knowing when and in what manner to speak, among other things, which is something I definitely have problems with.

Skip forward a bit. Due to different unrelated reasons, someone was looking at potential alternate living accommodations for me, and mentioned a group home for people with autism. I had an automatic hell no I’m not disabled reaction (despite that I receive Disability from the provincial government), and my second reaction was that it was a bad idea to gather people together whose shared feature was problems with social interaction. The person looked it up anyways, and said that I wouldn’t be a candidate for that place anyways because I was too high-functioning. I mentally looked at my life, and how much of a mess it was, and assumed that anyone who functioned at a lower level than me, would be completely helpless, and also a bunch of other things that I’m not going to put here, but they’re all derogatory.

Skip forward to a few weeks or months ago. I saw posts on my dash about autism. I had never even heard of some of those terms, but what they described sounded very familiar. I started to gradually accept it, not as a brokenness, but as a difference. I think the most important information was that there is no such thing as “high-functioning” or “low-functioning” autism, just a bunch of different elements -- like under categories of social interaction, sensory processing, executive function, meltdowns -- that are at different levels for everyone with autism, which can be more or less problematic, depending on the person and their situation.

There are two things I found particularly reassuring, odd as they may seem. The first is that clumsiness (or whatever the technical name is) is common among people with autism. Now, my mother has a type of “hell if we know” nervous system disorder, and has gone from walking with two canes (when I was little) to being in a wheelchair full-time. Whenever I would drop my keys or trip over my own feet, sometimes I wondered if I’d inherited that from her as well, along with my nose shape and skin that sunburns stupidly easy. But now, I don’t think I have to worry about that.

The second thing is hypersensitivity to sound. I can hear people talking across the apartment, and what they’re talking about, and pick up quieter sounds than others; but I can barely understand what someone’s saying if there’s a lot of background noise. I did a paper on auditory neuropathy once, so I know there’s more to “hearing impairment” than just detectable sound threshold, so I’d been worried about that. Now my hearing hasn’t been formally tested lately, but there’s a likely non-clinical explanation for my problems with background noise, which is quite a relief.

In conclusion, I’ve learned more about a part of myself from just seeing scriptAutistic’s reblogged posts, in the past few months, than all the years previous. Thanks for that.