autism-resources

Amythest Schaber who is blogging at neurowonderful has a youtube channel with an “Ask An Autistic” series. I decided to collect a list of links to the individual videos so that you can easily find a video on the topic that you’re interested in learning more about.

“What is AAC?”

“What is ABA?”

“What is Alexithymia?”

“How to be an Ally

“What is Autism?”

“Why Autism Acceptance?”

“What’s Wrong With Autism Speaks?”

“What is Autistic Burnout?”

Biomedical Interventions for Autism”

“What is Central Auditory Processing Disorder?”

“Is Autism a Disability?”

“What is Echolalia?”

“What is Executive Functioning?”

“What About Eye Contact?”

“What About Functioning Labels?”

“What are Autistic Meltdowns?”

“What is Neurodiversity?”

“What is Passing? Or, Should I Stop My Child From Stimming?”

“What is Prosopagnosia?”

“What is Scripting?”

Self-Injurious Stims

“What is Sensory Processing Disorder?”

What Shouldn’t I Say To Autistic People?”

“What are Autistic Shutdowns?”

“What are Special Interests?”

“What is Stimming?”

“What are Some Good Therapies for Autistic Children?”

“What is Vocal/Verbal Stimming?”

Resources! Updated Jan. 2, 2016

Can be found here on my blog

INFORMATION 

The majority of these are autism-related, but there are some other disability-related resources listed. Many of these have both Facebook pages, other social media, and websites, and I haven’t provided all of the outlets for all of the pages.  Feel free to share these links/the link to my resource page. I wrote only a handful of them myself, so if you credit anyone, please do so from the original source.

Some links will take you to specific posts/writings from blogs I have posted on here. Some links are in multiple categories. If you have suggestions for better organization/categories, tell me! If links are broken, tell me. If you have problems with information in the links, tell me. I try very hard to give out accurate and useful information.

Not of all these have links yet. This is a significant work in progress.

BEING AUTISTIC and AUTISTIC CULTURE (By primarily Autistic people, both blogs and posts):

The Celebration of Autism by Amythest Schaber

Brief Thoughts on Stimming & Culture by Kit Mead: A brief discussion of stimming as an austitic adult, weaving in a fictional character of the author’s.

Socializing As an Autistic: a short piece on second-guessing and social anxiety.

Autistic Culture by Larkin Taylor-Parker: on the beauty, pain, and struggles of Autistic culture, and how it needs to grow.

A Short Reminder For Autistic Peopleby Lipstick-Autistic: a few sentences reminding you that “Autistic self-love matters.”

This is Autism Flash Blog sponsored by Boycott Autism Speaks: a compilation of Autistic people speaking about what their autism is, rather than what Autism Speaks claims it is.

Love Not Fear Flash Blog: sponsored by Boycott Autism Speaks: a compilation of Autistic people speaking about love, support and why autism is not something to be feared in response to Autism Speaks.

Brief Definitions of Empathy Types by Lipstick-Autistic: explaining in concise terms the three types of empathy in people. Autistics can have any or a combination of these empathy types.

Sh*t People Say to Autistic People (video): YouTube video explaining what Autistic people have to deal with from people who are not autistic in terms of what people to say to us. Trigger warnings for ableism and the slurs used against Autistic people.

The Obsessive Joy of Autism by Julia Bascom: on the beauty of obsessions, and more than just that: Autistic happiness.

Don’t Mourn for Us by Jim Sinclair: on our existence not being a tragedy, and what we feel when you say you want a cure for autism.

Tumblr Tag: actuallyautistic (please do not post in this tag unless you are Autistic)

Loud Hands: Autistic People, Speaking compiled by the Autistic Self Advocacy Network (Book): this book is a collection of Autistic experiences by various individuals. See The Loud Hands Project

Speak for Yourself: A Call to Action by Larkin Taylor-Parker: written in 2011 and a call for Autistic people to speak out. Trigger warnings for discussions of ableism.

I Once Had A Neurotypical Tell Me: A blog on what neurotypicals say to Autistic people, other disabled people, people with mental illness, or otherwise neurodivergent people. May be triggering in some of the things that get to said to people.

I Will Not Have Quiet Hands (poem) by Kit Mead: a poem on the beauty of loud hands.

Messages from the Art Roomby Kit Mead: a short piece on a safe place in high school, and how “neurotypical” shouldn’t be forced on Autistic people. Talks about ableism and was written for the #StopCombatingMe flash blog (against a bill that authorizes funding for the Combating Autism Act; another shorter explanation is here)

The Way We Move (poem) by Kit Mead: a poem on discovering Autistic advocacy and community.

Balancing Act - a ramble by Kit Mead: on the difficulty of conversation and a fine balance between social skills training and damaging Autistic people.

Autistic Pride and What You Need To Know by Kit Mead: for Autistics Speaking Day 2014

Welcome to the Autistic Community Booklet (ASAN)

Autistic Women Welcome Packet (AWN)

BLOGS AND PEOPLE I LIKE (Mostly autistic bloggers, but not all, and not a full list yet)

Traveling Show

Lemon Peel

Just Being Me… Who Needs Normalcy, Anyway

The Black Autist 

Neurowonderful

Just Stimming

The Digital Hyperlexic

Autistic Academic

Emma’s Hope Book

Autistic Hoya

Cracked Mirror in Shalott

Non Speaking Autistic Speaking

Unstrange Mind

Chavisory

Real Social Skills

Ramp Your Voice by Vilissa Thompson

Disability Visibility Project by Alice Wong

Words I Wheel By by Emily Ladau

That Crazy Crippled Chick by Cara Liebowitz

Diary of a Mom

The Autism Wars

Left Brain Right Brain

Squidalicious

This Mess

ADVOCACY PAGES AND GROUPS I LIKE

The Unpuzzled Project: “The Unpuzzled Project seeks to connect individuals on the Autism Spectrum with resources that help them to make connections with other Autistic people, advocate for themselves, live the lives they want to live, and spread the message of autism acceptance.”

The Loud Hands Project : “The Loud Hands Project is a publishing effort by the Autistic Self Advocacy Network. We raised money towards the creation of our first and foundational anthology (Loud Hands: Autistic People, Speaking).”

Autistics Speaking Day Facebook page: November 1 every year is Autistics Speaking Day, in which Autistic people speak together about their experiences: “Autistic people everywhere are communicating online. Listen to them.”

Ollibean: “Ollibean connects families, self-advocates, & professionals in the cross-disability community to help create online and offline communities in order to help us all make informed decisions, share stories and work together to create a more socially just, inclusive world.

Queerability (Facebook): “Queerability seeks to increase the visibility of LGBTQ disabled people by honoring the intersectionality of the disability and LGBTQ experience.”

Queerability (Tumblr)

Autism Women’s Network (Website): “AWN is directed by & for Autistic women - providing community & resources for women & girls of all ages.”

Autism Women’s Network (Facebook)

Autism Women’s Network (Tumblr)

The Thinking Person’s Guide to Autism:“Thinking Person’s Guide to Autism (TPGA) is the resource we wish we’d had when autism first became part of our lives: a one-stop source for carefully curated, evidence-based information from autism parents, autistics, and autism professionals.”

Parenting Autistic Children with Love and Acceptance

Autonomous Press

NOS Magazine

Bazelon Center for Mental Health Law

Respectfully Connected: Journeys in Parenting and Neurodivergence

ABOUT AUTISM, ALLIES, AND INFORMATION FOR ALLIES (Resources for parents, friends, relatives, acquaintances, those wanting to get involved, or those wanting to begin educating others… primarily on autism):

ASAN’s About Autism Page: pretty self-explanatory.

Autistic Women Welcome Packet for Parents (AWN)

Meltdowns: Reduce them in the ones you love by tumblr user lsyikan

Diary of a Mom: in her own words, not an expert on autism, but the proud mom of someone who is

Letters to Autistic Kids

Parenting Autistic Children with Love and Acceptance: “A community for parents of Autistic children who choose to love and accept their Autistic children. A place to learn from the writing of Autistic adults. A place where parents can discuss supporting and accommodating Autistic children.”

No Stereotypes Here: Functioning Labels

Body/Mind Disconnect (Emma’s Hope Book)

How to Differentiate Between Autism and Asperger’s Syndrome (*SARCASM/SATIRE*): Sarcastic/satirical piece on the fact that Asperger’s and Autism are… shockingly (sarcasm there) the same thing.

Identifying, Educating, and Empowering Allies

Love, Devotion, Hope, Prevention, and Cure by Mel Baggs

Please, Don’t Use Labels on Me - And Us  by Kit Mead: on the inaccuracy of functioning labels and stigmatization and mistreatment of Autistic people through functioning labels. Contains discussion of ableism.

My Son Doesn’t Need to be Fixed

Autistic Hoya: FAQ

Definitions and Terms by Lydia Brown: this is a good resource for many terms used in disability advocacy.

Ableist Terms by Lydia Brown: words discriminatory toward disabled people and other neurodivergent individuals.

Article/post on how to treat nonverbal individuals: Includes information on ABA therapy (Applied Behavior Analysis) and generally treating Autistic people with respect. Trigger warnings for ABA therapy & ableism discussion.

Ari Ne’eman of ASAN’s Talk at Emory on Autism and Disability: This gives a really good, succinct background on disability history and how it has evolved over time, addresses the social vs. medical model, and more. Trigger warnings for discussion of eugenics, ableism, et al.

Tumblr Tag: actuallyautistic: please do not write/post in this tag if you know you are not autistic, though. It’s just a good place to read things by autistic people. May include triggering posts about a multitude of things.

Autistic Self-Identity: by bendingthewillow: Guide for NT and allistic individuals when referring to autistic people.

15 Things You Should Never Say to Autistics by Lydia Brown: Title is the explanation.

Why I dislike person-first language by Jim Sinclair: explains why language such as describing an Autistic person as “a person with autism” should not be used.

What’s the difference between high-functioning and low-functioning autism? At AWN (there isn’t)

The Problem With Functioning Labels

AUTISTIC/DISABLED REPRESENTATION

@iamthethunder​’s takes on NeuroTribes

Thoughts on NeuroTribes by Chavisory

Disability in Kidlit

Compilation of blog posts on why representation matters (for all identities) by @andreashettle

GETTING THROUGH THE WORLD: Tips, Strategies, Things?

Disabled Learning (blog)

Medication Management

College Survival Masterpost (including anxiety/being stressed, sad)

Hotlines (multiple regions)

Websites For When You Need Distractions 

Neurodivergent Exchange (blog)

Real Social Skills (blog): social skills for autonomous people. Covers a variety of topics.

Sensory Overload and How to Cope by recovery-community on Tumblr

Navigating College (ASAN publication): http://autisticadvocacy.org/wp-content/uploads/2014/01/NavcollFinal.pdf

Executive Functioning Apps

Time Management App (useful for Time Agnosia)

Low spoons/minimalist minimeals on Reddit

Study podcasts

Autistic and Poor: cheap/low spoons cooking and DIY items for autistic people

How to caption YouTube videos

Networking and informational interviews

10 Ways to Refocus for those with ASD/SPD

Is College Possible?

Sexual activities while autistic

Spoonie Student Resources

Text to Speech apps

Low spoons gourmet

Autistic cooking

Emergency chat now available for Windows!

Under the table accommodations

INTERSECTIONALITY :

Autistic Hoya

Advocacy Without Borders

Ballastexistenz (blog) by Mel Baggs: “My name is Mel Baggs — you might know me as Amanda, but I’ve started going by my middle name again. I am a disabled writer and artist.  I am cognitively disabled, physically disabled, chronically ill, developmentally disabled, and psychiatrically disabled, so I have experience with a lot of different disability communities.”

Everyday Ableism (Twitter): records acts of everyday ableism experienced by disabled individuals.

Hypermobile/Ehlers-Danlos Autistics & other Neurodivergents : Facebook group for Autistic and other neurodivergent individuals with Ehlers-Danlos.

Disability Intersections (website)

But You Don’t Look Sick

Psychopathy: Racism and Ableism from the Medical-Industrial Complex by Lydia Brown

To Be Queer, Black and “Sick”

Intersected: Ability, Race, Color, Religion, National Origin, Gender, Sexual Orientation, Gender Identity (blog)

Navigating Queer Girl Culture on the Spectrum

Queerability (Tumblr)

Queerability (Facebook)

Feminist Disability Dialogue

Autism Women’s Network (Facebook page)

Autism Women’s Network (Website)

DIVERgent: When disability & feminism collide (Run by AWN)

DIVERgent Tumblr (more updated than Facebook)

Intersections Like Me

Dear White and Other Privileged Friends: or, Toward a Pedagogy of Unlearning

Autism Acceptance, by Anonymous

Autism in Black and White

Race and Disability

Double Rainbow - Autism and Race

The Intersection of Race and Students with Disabilities

5 Tips to make your Pride Events more Inclusive by Queerability

ASAN Calls for Neli Latson’s Release: black Autistic teen incarcerated wrongly

Making Neli Latson Matter: The Invisible Intersected Black Members of The Autism Community by Kerima Cevik

The Black Autist (Page, blog)

Tips for intersectional advocacy

That Crazy Crippled Chick by Cara Liebowitz

DISABILITY AND THE ARTS (Zines, submissions-based sites, literary magazines, art magazines)

Barking Sycamores

DOCUMENTARIES

Loving Lampposts

Wretches and Jabberers

Who Cares About Kelsey?

Citizen Autistic

Unspoken

IMPORTANT DISABILITY TWITTER HASHTAGS

NoModernAsylum

TheAbleistScript

IwishICouldveToldYou

TheCostofPassing

JustSayDisability

TheAcceptanceScript

FreeNeli

JusticeForKayleb

TravelingAbleism

SexandDisability

DISABILITY NEWS AND HISTORY

Disability in History and Life (blog) by Kit Mead: a blog devoted to providing information and facts on the history of eugenics and sometimes general disability history and current news. Does not update with longer posts on a speedy basis.

Ari Ne’eman of ASAN’s Talk at Emory on Autism and Disability

Master Source List on Eugenics for Kit Studies Eugenic History: a list of books and other resources that I use to study the history of and write about eugenics.

Longmore Institute on Disability (Tumblr): the disability studies at San Francisco State University

The Future (and the Past) of Autism Advocacy by Ari Ne'eman in Disability Studies Quarterly

The “Ransom Notes” Affair: When the Neurodiversity Movement Came of Age in Disability Studies Quarterly

Disability Studies Quarterly

Advocacy Monitor (NCIL)

Fields of Stones (on institutional history)

Ghosts are Scary, Disabled People Are Not: The Troubling Rise of the “Haunted Asylum”

ON AUTISM SPEAKS (Autism Speaks is the largest nonprofit “charity” about autism in the U.S.)

So What’s the Problem with Autism Speaks?: a succinct and concise explanation with several key points on why you should not support Autism Speaks.

An Autistic Speaks About Autism Speaks

Compilation of Anti Autism Speaks Post (lots of them): Boycott Autism Speaks compiled a massive list of essays written against Autism Speaks.

Autism Speaks: The Name, the Symbol, the Rhetoric by Kit Mead

Labels and Statistics and Autism Speaksby Kit Mead

Autistic Self Advocacy Network Flyer on AS

ASAN + Other Disability Groups’ Joint Letter to AS’s Sponsors

 We Have a Place by Kit Mead

I Resign my Roles at Autism Speaks by John Elder Robison: Autism Speaks’ only Autistic person explains why he resigned in November 2013.

Buts and Rebuts by Autistic Speaks

It’s MY Blue at It’s Bridget’s Word

For God’s Sake, Stop Speaking at The Autism Wars

A Few Selected Autism Speaks Quotes at autisticshs.blogspot.com

ASAN statement on Autism Speaks Board Appointments

This is What They Think: Protesting Autism Speaks

What it’s Like to Be David

OTHER CURE CULTURE ASPECTS/VIOLENCE AGAINST DISABLED PEOPLE

ABA by Sparrow Rose Jones

List of Murdered Disabled People to Jan. 2014 (tw: with details)

List of Murdered Disabled People of Color at the Autism Wars

When a Child is Killed by their Parent the word “But” does not apply

Whitewashing the Brutal Murder of Alex Spourdalakis

ASAN Day of Mourning 2014

Mourning and Advocating for Autistic Murder Victim London McCabe

Violent and Legal: The Shocking Ways School Kids are Being Pinned Down, Isolated Against Their Will (article)

Restraint and Seclusion: Hear Our Stories (video)

Changing Conversations: When Parents Murder Disabled Children

The Mommy Blogger Who Tried to Kill Her Autistic Daughter Talks to Dr. Phil

Would You Accept This Behavior toward a Non-Autistic Child?

Police Brutality film (Where is Hope?)

When Teachers Abuse Disabled Children

Killing Words by Zoe Gross

ASAN’s Anti-Filicide Toolkit

The Judge Rotenberg Center

When is It Okay to Chain Your Child to a Bed?

THINGS I AM BAD AT CATEGORIZING

Psychiatric Medications and Autism

Attributing Violence to Mental Illness: Making the World Less Safe by Kit Mead: In response to both the media and public sentiment about mental illness and/or disability being the cause of violence. Trigger warnings for discussion of ableism, sanism, violence, and shootings. Includes researched study links.

Spoon theory original article

Spoon theory - another good explanation 

Spoon theory explanations

Disability on Disability Discrimination

OTHER MASTERPOSTS:

Neurowonderful

Traveling Show

Autistic Self Advocacy Network Sitemap

Autistic Hoya

Twist’s ASD Master Post

Quick shout out to neurowonderfulWho has been an excellent resource about autism and all around awesome person! Thank you so much for all that you do! I’ve learned so much from you as I’m sure so many more have!

CLICK THROUGH TO THEIR* BLOG http://neurowonderful.tumblr.com/

Be sure to check out their* YouTube videos and subscribe https://www.youtube.com/watch?v=ez936r2F35U

EDIT* for proper pronoun, please respect peoples’ pronouns

Autism Awareness Month

(or, We Are Not Missing Any Pieces)

[There is nothing I say in this blog entry that has not been said elsewhere. Even so, I am going to say it because I have a few allistic followers (mostly established friends and family), and I am going to provide the resources needed to get an idea of what is what beyond what I say here.

This is my opinion on Autism Speaks, Autism Awareness Month, and related topics. I believe this opinion is overwhelmingly (though certainly not universally) shared by the autistic community, but I speak only for myself in this regard.] 

April is the month where you “light it up blue” and slap a puzzle piece on your profile picture to raise awareness for autism.

Except don’t.

The Light It Up Blue campaign is an Autism Speaks thing. The puzzle piece is Autism Speaks’ branding. I do not personally know a single autistic that supports either the campaign or the organization behind it (though I am sure they are out there somewhere).

I am not going to go on a huge rant, rather I am just going to provide the highlights about why it is harmful and a bad idea to support Autism Speaks. It should give you enough to get your Google on, and dig into the information that other more experienced voices have put out there.

Autism Speaks publicly acknowledges that the holy grail of autism research is pre-birth detection and elimination of autism, either by curing autism outright or by having the option to terminate a pregnancy due to autism. They support eugenics, and this is where their funds go (44% of their funds, according to them).

While it is true that some autistics would accept a cure, most of us by and large would not. That is a choice that can only be made by the person in question. That is not, however, what Autism Speaks seeks. They seek to cure autism before autonomy is even possible, and in doing so deprive us of ever having self-determination.

Autism Speaks is not about autistics. It is about providers and caretakers. They focus on non-verbal autistics and make the claim that autistics are not all there - that we are “missing pieces” is a recurring theme. This is not the case; there are plenty of non-verbal autistics who communicate just fine through various means such as typing, text to speech, arranging word cards, echolalia, and others. And we consistently express we are here, we are aware, and we will tell you to fuck off if you assume we are not.

Autism Speaks supports marginalization of autistics by dividing us into “High Functioning” and “Low Functioning”. If you are high functioning (which usually means you can talk effectively) then your apparent (not your actual) ability to function excludes you from all support. You are not one of “those” autistics. If you are considered low functioning (usually unable to talk), then your apparent lack (not your actual) ability to function is used to deprive you of autonomy.

Autism Speaks focuses on the parents and providers. Their narrative is consistently, “Look how awful autism is! Look what it does to the people around you!” It is also run by non-autistic people. Much of their revenue goes into “awareness” campaigns designed to drum up fear of autism (about 20% of their budget is marketing and awareness). They have been known to compare autism to horrible, debilitating diseases, and even death. It is all about lightening the burden on those around the autistic, not supporting the autistic.

We should be clear about something; Autism Speaks has made image changes. They try to present themselves as being for autistics. They have attempted to add adult services such as a housing network and employment services. Objectively they are better than they were five years ago. That image does not hold up to scrutiny. Only 4% of their budget actually goes to Family Services while 44% of their budget goes to researching a cure. They spend more money on fundraising (second only to research) than on awareness campagns. They spend almost as much on advertising. Together, these three items alone account for about 85% of their total budget. The talk the talk, but they do not walk the walk.

We do not need to be cured, but they do not listen to us. So what you should you do instead? Who should you listen to? Autistics, of course.

By and large we autistics do not support Autism Speaks. We support groups like The Autistic Self Advocacy Network and Autism Women’s Network. Groups that work not to raise awareness, but rather acceptance - and not just for autism, but disability in general. They are autistics supporting autistics, with the goal of taking us as we are, and offering us accommodations we need instead of curing us.

Many of us are still interested in learning about autism, and many of us support research along those lines - but that understanding is used to guide us to better acceptance and accommodation, not to remove us from society.

If you want to support autistics, support the neurodiversity movement. Support the autistic self advocacy movement. Support the disability rights movement. Support resources that help autistics first and the caretakers and providers second. Check out Boycott Autism Speaks. Make sure we are included in intersectional spaces. Accommodate us.

And when Light It Up Blue starts in April again, wear red instead. Instead of raising autism awareness during Autism Speaks’ big event at the start of April, ‪#‎WalkInRed‬ instead. Ditch the puzzle piece and use the infinite rainbow of of neurodiversity like the one in my profile pic (grab it from my photos if you want!).

When you see someone in blue trying to raise awareness, say something to them. When you see someone in red doing the same, thank them.

We are not broken, we do not need to be fixed. We are not missing any pieces. What we need is a world that accepts us as part of the world - that accepts us as we are.

End the stigma of autism and other neurodiversities.

Most of all, if you have questions, ask an autistic before you ask a non-profit that many of us consider a hate group. Through the end of April, I will answer any questions about autism spectrum disorder - even the ones I normally consider inappropriate or too personal. Nothing is off limits. If I cannot answer your question, I  do my best to point you in the right direction or I will find you someone who can answer.

Good Reads for April:

Autism Resources Master List:
http://neurowonderful.tumblr.com/autismmasterpost

Indepth About Autism Speaks:
http://goldenheartedrose.tumblr.com/…/autism-speaks-masterp…

Autistics vs. Autism Speaks:
http://www.siautism.net/Articles/AutismSpeaks.pdf

Autism resources red flags

I thought it might be helpful to put together a list of things that are red flags when looking for autism-related resources. This is mostly for my mom, so she knows how to tell when something isn’t going to be helpful, but I thought it was probably a good idea in general.

If you have any suggestions for things to add, let me know and I’ll add them here.

Red flags (in no particular order):

  • “Autism parent”, “Autism mom”, etc
  • Puzzle pieces
  • Everything is in primary colours and looks like it was made for children
  • Everything is talking about young (white, cis, male) children
  • “People with Autism” (instead of “Autistics” or “Autistic people”)
  • “High functioning” and “Low functioning” (or anything implying that some people are ‘really autistic’ and should be pitied/ignored, and others are ‘barely autistic’ and therefore respectable/really people)
  • Autism Speaks
  • “People with autism are so inspiring!”, “Autistic children are gifts/treasures/etc”
  • Nothing written/said/contributed by actual autistic people; no connection with/input from the autistic community itself
kpagination.wordpress.com
Autism Resources
INFORMATION A significant work in progress. Mostly focused on autism. They looked good at the time. I haven’t gone back to some of them in a couple years. They may no longer reflect my views if so.…

I made a WordPress to take over the old Blogspot, since WordPress is cleaner.

Updated and added links / cleaned out old ones somewhat / edited categories of things!

Sections are: 

  • BEING AUTISTIC and AUTISTIC CULTURE
  • SO YOU THINK YOU MIGHT BE AUTISTIC / RECENTLY REALIZED YOU’RE AUTISTIC: Primer on Autism and Autistic Community, and on any weird feelings you might be having
  • SENSORY PROCESSING
  • BLOGS, ORGANIZATIONS, AND PEOPLE I LIKE (Mostly autistic or disabled bloggers, but not all. This is just a sample!)
  • INFORMATION FOR PARENTS & ALLIES (Resources for parents, friends, relatives, acquaintances, those wanting to get involved, or those wanting to begin educating others… primarily on autism):
  • REPRESENTATION (there are so many links on this, I just picked the ones I know for now)
  • GETTING THROUGH THE WORLD: Tips, Strategies, Things
  • INTERSECTIONALITY-FOCUSED BLOGS/ARTICLES
  • DISABILITY AND THE ARTS (Zines, submissions-based sites, literary magazines, art magazines - needs more links!)
  • DOCUMENTARIES
  • IMPORTANT DISABILITY TWITTER HASHTAGS
  • DISABILITY NEWS AND HISTORY (this one could use some more links):
  • ON AUTISM SPEAKS (Autism Speaks is the largest nonprofit “charity” about autism in the U.S.)
  • CURE CULTURE and ABLEISM
  • THINGS I AM BAD AT CATEGORIZING
  • OTHER MASTERPOSTS
Top 10 Things I really wish people would understand about autism

1. Autism is CLEARLY an autosomal recessive genetic trait that is not effected by gender, class or race. (meaning black women are just as likely to be autistic as white boys people!) This also means autism doesn’t just magically go away at age 18; it is  forever.  Negative symptoms of Autism can get better or worse by learning coping strategies or getting more/less overwhelmed physically and mentally.

2. There is no way vaccines could cause autism; even if autism wasn’t a genetic trait, which it is!

3.  Autistic people tend to be far more creative, intelligent,have high I.Q.’s, unique, strong willed, honest, college students, college professors, doctors, lawyers, scientist, artists and be experts in their field more then the average person.

4. If a person cannot speak this doesn’t mean that person can’t hear you, understand you, or that they are incompetent or unintelligent.

5. Being “socially stupid” does not mean that you are stupid at everything else.

6. Some Autistic kids really need home school and some really need the push for more social interaction in public school.

7. The main “problem for autistic people” isn’t “behavior issues” it’s communication issues and having a nervous system that makes the person 10 times more physically and mentally sensitive then the average person which is mentally and physically overwhelming.

8. Because autistic people are so overly sensitive to everything, people need to realize things that are just a little harmful for all people like :

dust, pollen, gluten, high sugar diets, sound pollution, light pollution, florescent lights, everyday chemicals

are horrible for autistic people and can cause them to be so overwhelmed they cannot speak/ are in extreme discomfort daily.

9. Because autistic people are so overly sensitive to everything, people need to realize things that are just a little good for all people like:

building ramps instead of stairs to houses, living in a clean, quiet, peaceful environment. Using pet therapy, swimming therapy, occupational therapy, seeing a councilor once in awhile, brushing therapy, weight therapy, having a very comfortable bed, eating and exercising correctly, being your own best advocate

can REALLY help any autistic person be so much happier, healthier and independent.

10. Sometimes a parent and autistic child can do everything right and an autistic child will still not be able to be independent, safe alone, will still be in agony and cannot speak. Until we recognize that the main problem for Autistic people is a hyperactive nervous system and address this scientifically there will be little hope of change for these people.

Children Deserve Respect

Children are not pets or objects adults can use for their own purposes. Kids are not problems to be resolved.

Unfortunately, many parents treat their kids as if they’re enemies, constantly battling to get their child/ren to do what they want. Parents like this rarely think about their child/ren’s wants and needs; they just assume that they are right and their children are wrong. This attitude teaches kids that they’re not really people, that love from other people is contingent on their behaviour, and that they don’t have rights. They see any kind of defiance or even disagreement as disrespectful, and railroad their kids with brute force or fear. 

Sometimes, kids behave in unacceptable ways, and handling this is challenging for parents. Plus, sometimes parents have to make kids do things they don’t want to do; we all ave to brush our teeth, for example. Dealing with situations like this is difficult, but it’s part of being a parent and we have a responsibility to respect our kids and make sure we’re meeting their physical and emotional needs. Saying ‘it had to be done’ is not an excuse to mistreat or abuse anyone, including children and young people. 

I recently had a frankly horrifying conversation where a group of parents flippantly discussed physically restraining their kids during medical and dental procedures. When I pointed out that this should be an absolute last resort, several parents reacted with ridicule, as if trying to explain to their kids that this had to be done and trying to address their fears was ridiculous. 

A story I hope you’ll find relevant: when I was a toddler (about 3 or 4 years old), I fell through a glass door and got glass stuck in my forehead and scalp. The daycare centre called my mother, and my mother rushed me to the ER. I had to have multiple pieces of glass pulled out of my skin, and many stitches. My mother held me down and I wriggled and screamed and cried, and she realized what was going on - she stopped holding me down, and I relaxed. The Dr and nurses were able to pull the glass out and stitch me up without issue. 

Parents often try to overpower kids with force, instead of thinking ‘what’s the actual problem here, and how can we resolve it? If it can’t be resolved, how can I help and support my child while they deal with it? Is there a way to work around it?’ Going back to our tooth-brushing example, a lot of people have sensory issues that make tooth-brushing difficult, even painful. Obviously we all need to clean our teeth, but that doesn’t mean that restraining a child and forcibly cleaning their teeth is an acceptable solution! Sometimes a different toothbrush works (especially one with softer bristles), sometimes the problem is actually the toothpaste, sometimes a washcloth can be used instead of a brush, or another implement can be substituted - but without talking to our kids and asking them what’s going on, we’ll never know. Kids in these situations are subjected to something that they often experience as torture because their parents have decided to use force and power over kids instead of approaching them as human beings with valid feelings who are deserving of respect.

Parenting is extremely difficult, one of the most difficult things a person can do, but that doesn’t excuse mistreatment, abuse, and violence. Children are human beings with a full range of emotions, and they have rights. As parents, it’s our job to make sure our kids needs are met and that requires treating them like people, not problems.

Hi there! i’ve started collecting my favorite websites and shops to buy stim toys.  I mostly chew stim so most of these are places to buy teething stuff. If you know of other websites for other stuff, add it on!! 

WEBSITES

  • ARK Therapeutic - they can be a little pricey but the quality is really good. they are a certified therapeutic company that makes chew toys specifically for older kids/adults.
  • Office Playground - they are a company that makes fidget and chew toys for office spaces for adults. I’m pretty sure it’s not supposed to be a stim store, but all the stuff they have there is totally stuff for stimming. Also- their stuff is SUPER inexpensive!! I love this website they have so much fun stuff!
  • Stimtastic - they have TONS of cool colorful stuff here! lots of different unique fidget toys and lots of really cool chew necklace shapes. They’re similar to ARK, they’re a therapy company that makes stim toys for older kids and adults. 
  • National Autism Resources - great place for really safe, really basic stim toys. They’re also a therapeutic company designed specifically for autistic stimmers. They don’t have a wide selection but i’ve heard their stuff is really nice. 

ON ETSY, STORENVY, ETC.

  • HawkBites - they have really pretty “designer” stuff here, lots of nice colors and designs that make it easy to wear your stim toy in public. I really like this shop, you can even buy just the beads and make your own necklace!
  • Silicone Canada - they have ALL types of materials here, mostly for chewing i think. But they have fabric, wood, silicone, and other stuff too! They sell lots of beads in lots of colors so you can make your own necklaces and stuff. 
  • Ruthdoodle - this store is SO COOL!! lots of customizable stuff, lots of stuff besides just chew stims. they even have these cool kinetic sand boxes with little toys inside!! I love this shop, can’t wait to buy more from them!
  • Fidgetopia - TONS of touch stim fidget toys! rings, chanmail, gears, lots of cool metal stuff to touch. Also most of their metal items even come in different colors..!
  • TRsTidbitsnTreasures - More “designer” chew stim toys, can also be found on Etsy. 

If you have any other shops and stuff to recommend, please add them!Thanks so much and happy stimming!

autistikids.com
Autistikids

Autistikids is a way to quickly and easily connect people who are interested in learning about autism from a wide range of people who are ON the spectrum, and some parent allies. 

There is a lot of information online about autism. Almost all of the easily accessible information is written by non-autistic professionals, providers, therapists, and parents of autistic children. Some of these resources can be very helpful, others harmful, and almost all of them fail to convey the point of view of people on the spectrum.  Trying to navigate this maze of information takes a lot of time and energy, and can lead to dead ends, misinformation, hopeless pronouncements, and a level of negativity discouraging to even the most strong-willed of people.

If you’re lucky, you find a blog or an article that gives you hope and a lot of good information; that ideally leads to more inspiring and enlightening resources. If you’re VERY lucky, you discover the best resource on autism available - AUTISTIC PEOPLE.

They quote us and link us (autistic people) as the best resources, along with a few good parent allies - this needs a signal boost.

Do You Want More Autism on Your Dash?

If so, you’ve found the right post. Scroll down for an alphabetized list of relatable, helpful blogs for and by autistic people plus a bunch of blogs about disability in general and/or conditions that are often comorbid with autism!

actuallyautisticheadcanons.tumblr.com “Much like autisticcharacteroftheday, this blog is to submit autistic headcanons. but here, it’s different. Here, include your not only a picture of the character, but your headcanons of their special interests and main stims!”

an-autistic-in-paris.tumblr.com “I’m here to let you know how to travel comfortably as an autistic. I give tips, tricks, and warnings about any aspect of travel that could trigger a meltdown. You’ll also find ramblings about everyday life with autism.”

apersnicketylemon.tumblr.com “Political blog dealing with feminism, pro choice issues, racism issues, ableism, and more!”

asdcats.tumblr.com “This is a blog for anyone on the Autistic spectrum.”

askanautistic.co.uk “A Blog for NT people or non NT people to ask an autistic questions and receive input from other autistic followers. Educating yourself is important. Educating yourself with input from actually autistic people is more important.”

aspie-raccoon.tumblr.com “Accepting of everyone on the spectrum, self diagnosis friendly. Will reblog ASD related stuff, some helpful, some funny.”

autismpositive.tumblr.com “We are not an ask blog. Purely positive posts!”

autismproblems.tumblr.com “A submission-based blog about the autism-related problems many autistic people experience.

autismspectrumproblems.tumblr.com “This blog caters to anybody on the autism spectrum, including self-diagnosed people.”

autistic-flirting.tumblr.com “Flirting, neurodiverse style. A blog by autistics, for autistics.”

autisticadulting.tumblr.com “This blog is run by some autistic folks who were born in the late 80’s, but didn’t get their autism spectrum diagnoses until early 2015. (So far there’s been a lot of “wait, they have a name for that?” and “wait, that’s a stim?”) We’re here to show what life for some autistic adults can be like, for anyone who’s curious.“

autisticadvice.tumblr.com “Advice by autistics, for autistics.
We are not medical professionals.”

autisticadvocacy.tumblr.com “The Autistic Self Advocacy Network is a  nonprofit organization run by and for Autistic people. ASAN’s supporters include Autistic adults and youth, cross-disability advocates, and non-autistic family members, professionals, educators and friends. ASAN was created to provide support and services to individuals on the autism spectrum while working to educate communities and improve public perceptions of autism.”

autisticallythor.tumblr.com “Hello, good mortals! On this blog you will find intersectional autism acceptance and disability rights, as well as well as thoughts on how to be an able-bodied, allistic, neurotypical ally! Join me in my quest against ableism, and we shall be victorious!”

autisticandpoor.tumblr.com “cheap stim toys and low spoons cooking on a budget”

autisticbooks.tumblr.com “Books by autistics, reviewed by autistics.”

autisticcharacteroftheday.tumblr.com “Some of these may be legit - some may not! t´This blog isn’t an actual canonical autism archive - it’s a blog for autistics to post and share characters in various media they relate to about their disability.”

autisticeagle.tumblr.com “Autistic Eagle is an advice animal (a type of internet meme that features an animal) in which an eagle talks about problems/advantages associated with autism, and other autistic stuff. We want nothing more than to promote the awesome side of autism, and it is run by autistic people and the friends and family of those people.”

autisticexchange.tumblr.com “The fanfic gift exchange by autistic people, for autistic people”

autisticfiction.tumblr.com “A place for autistic writers to share stories about autistic characters.”

autistickitten.tumblr.com “Autistic Kitten was created in legacy of the original Autistic Kitten. This is a safe space for all people on the Autism spectrum to come together, ask questions, and share their stories.“

autisticlifehack.tumblr.com "This is a place for autistic people to share the ways that they make their lives easier! Anything from different food choices to techniques on handling social situations.”

autisticmatch.tumblr.com “A blog to match up autistics with other autistics! I know how hard social interaction is for a lot of us, so I figure if we get matched up based on special interests, things will be so much easier.”

autisticnonbinaries.tumblr.com “This blog exists as a resource for people who are both nonbinary and autistic, and wishes to fill the roll of being able to help this demographic by providing information, support, and community.”

autisticpoetry.tumblr.com “Poetry written by Autistic people.”

autisticproblems.tumblr.com “A blog by autistic people and for anyone on the spectrum. Submissions are welcome.”

autisticresources.tumblr.com “Resources for and by autistic people.”

autisticstories.tumblr.com “A place for autistic people to share their life stories with one another!”

autisticstylistic.tumblr.com "An Autistic Fashion Blog.”

autisticwomen.tumblr.com “The Autism Women’s Network is dedicated to building a supportive community for Autistic women of all ages, our families, friends and allies.  AWN provides a safe space to share our experiences in an understanding,   diverse and inclusive environment.”

beautiful-dad.tumblr.com “33. Married with children. Black, autistic, queer, nonbinary, trans artist. They/Them.”

blackautist.tumblr.com “The Black Autist is a blog where posts are focused on not only autism acceptance but also issues and news surrounding autistic people of color, especially those in the African Diaspora. It is also a place to share blogs, resources, websites, events, works and info on important icons/heroes in the community of autistic PoCs.

boycottautismspeaks.tumblr.com “Autistic people & those who care about Autistic people - sharing information about how Autism Speaks works against the Autistic Community”

butterflyinthewell.tumblr.com “An autistic bullying survivor who wants to share encouragement and fandom nerdiness!”

caffeinatedautistic.tumblr.com “I do not claim to speak for all autistic people; this is mainly a “this is what it’s like to be me” blog that will hopefully help others understand what it’s like for someone on the spectrum.“

conversationscripts.tumblr.com "This blog provides resources for A/autistic and other neurodivergent people who use scripts in conversation.”

coolautism.tumblr.com “Let’s “glorify autism” Tell me what makes you happy to be autistic!“

dailyautismcauses.tumblr.com "This is a satirical blog designed to poke fun at the ridiculous things that people claim cause autism.”

differentblogtitle.tumblr.com

disabilityinkidlit.tumblr.comDisability in Kidlit discusses the portrayal of disability in MG and YA fiction. We review books featuring major disabled characters, discuss tropes, and offer advice to authors wanting to include disabled characters in their works.“

divergentfem.tumblr.com “We’d like to introduce DIVERgent, a new initiative of the Autism Women’s Network. Run exclusively by disabled women of varying identities and impairments, DIVERgent works to change how disabled women are commonly perceived within society while challenging the myths of our inferiority, both as women and as disabled people. We explore the interactions between sexism and ableism within both disabled and nondisabled communities.

facesofautism.tumblr.com "a blog for autistic selfies”

flappyhourcast.tumblr.com "A Podcast With An Autistic Angle.”

goldenheartedrose.tumblr.com “Rose. 34 years old. They/them pronouns. Agender, bisexual, polyamorous, autistic, hard of hearing and a parent of two fabulous autistic kids. Writer, singer, fanperson and tea drinker.”

infodumpnetwork.tumblr.com “Welcome to infodump network! This blog is a place for neurodiverse people to share about what they love without fear of being told they’re annoying. It’s also a place where you can read about the things people are passionate about. No topic is too popular, too obscure, too wide, or too narrow.”

itsnicetobeautisticwhen.tumblr.com “This isn’t blog isn’t trying to negate the problems and difficulties often connected with being autistic - it’s about celebrating the times where being autistic is something awesome and positive, no matter how small.”

jumpingoutofthefishbowl.tumblr.com "I am in my late 20s. I’m from Los Angeles, CA. I have a Masters in Social Work from the University of Southern California. And I’m on the autistic spectrum. I was diagnosed at the age of two, found out at thirteen, and have been coming to terms with it ever since. This blog and Tumblr is my journey to self-acceptance with the firm belief that autism is not bad.”

justallisticthings.tumblr.com “#justallisticthings is pointing out ableist things many autistic people have had allistic people say to them.”

k-pagination.tumblr.com “Autistic and general disability activism. I try to boost other marginalized groups’ voices as well.”

k1mmyr0cks.tumblr.com “Eccentricities and Introspection”

kris-guin.tumblr.com “I am an LGBTQ and disability rights advocate.”

lipstickautistic.tumblr.com “24, cis woman, she/her, bisexual, aspergers, anxiety, depression. Learning to love and accept myself bit by bit”

lir-illir.tumblr.com “Hello! Online, I like to go by Liesel. I’m a 20-year-old uni student from Australia. I am studying to be a primary school teacher. I have OCD, Generalised Anxiety Disorder, and Autism. This blog is a place where I will talk about the stuff going on in my brain. Welcome!”

loveacceptautistics.tumblr.com “This is the Tumblr for the FB community Parenting Autistic Children with Love and Acceptance (PACLA)”

lucasscheelk.tumblr.com “Poetry and performance updates from Lucas Scheelk, a white, Autistic, queer-identified, mentally ill, trans poet from the Twin Cities!”

lysikan.tumblr.com “This is not a blog ABOUT being autistic. This is blog BY an autistic. I post other stuff, too. Female / 30-something / software engineer.”

myautisticpov.com “20 year old Autistic writer/student. She/her pronouns. I usually blog about about autism, feminism, diversity in media, writing and my special interests.”

ndsenseandsex.tumblr.com “A Blog and Advice Column for Neurodivergent Sexuality.”

neurodivergent-and-sexy.tumblr.com “This is a neurodiversity blog about love, sexuality, and gender on the spectrum”

neurowonderful.tumblr.com “Hi, I’m Amythest! This is where I blog about Autism and disability. I am an Autistic and multiply disabled artist, writer, public speaker, advocate, and activist.”

no-more-ramen.tumblr.com “Easy, budget-friendly recipes for folks with little time and even less money!”

notyourpuzzlepiece.tumblr.com “18, trans man, he/him, pansexual, quoiromantic/panromantic, autistic, anxiety, depression, chronic pain.”

notyourdamnpuzzlepiece.tumblr.com “NYDPP is a blog dedicated to Autism positivity and resources. On here, we will reblog resource posts, visual/audio stims, stories, and autism feels, as well as anything else we find useful or necessary. Additionally, anyone can submit a selfie, story, feel, or info!”

officialautismspeaks.tumblr.com “This blog is a parody, a stronghold of sarcasm, a satirical miracle, making fun of how autistic people are treated by the media and society thanks to the “charity” Autism Speaks.”

onautisticcommunity.tumblr.com “I’m a Black Autistic woman and Anthropology PhD candidate. This is my research blog - a place to reflect on and bookmark resources/conversations.”

queerability.tumblr.com “Queerability is an LGBTQ and disability rights advocacy organization run by for LGBTQ people with disabilities and works to ensure that the voices of LGBTQ people with disabilities are heard in the conversation around LGBTQ and disability”

rampyourvoice.tumblr.com “This is the official Tumblr page of Ramp Your Voice!, a disability rights consultation & advocacy organization for people with disabilities. Ramp Your Voice! is founded by Vilissa Thompson, LMSW, a proud WoC with a disability who is fighting for equality & justice for ALL disabilities.”

realsocialskills.org “This is a blog about people. It’s about how interaction between people works”

sensory-stories.tumblr.com “For autistic people and people with sensory processing issues: send in your sensory tales”

sensory-warnings-for-media.tumblr.com “This is a blog for people who have any variety of sensory sensitivities and enjoy movies, TV shows, and video games. Its purpose is to provide warnings for any sort of negative sensory experience that might happen in media, such as loudness, flickering lights, etc.”

sensorypeople.tumblr.com “A blog created about Sensory Processing Disorder by a SPDer for SPDer’s. Info and tips on how to cope with SPD as an adult”

shareyourinterests.tumblr.com “This is a blog cataloging the special interests of autistic (and other DD) tumblr users. Please tell me your interests and I can add them to the blog!

sibuds.tumblr.com “This blog is intended for autistic people to find friends who share their special interests.”

silversarcasm.tumblr.com “I’m a queer, Autistic, psychotic, fat woman and a feminist. I’m currently taking a year off from school. I largely blog about social justice but sometimes I discuss personal things. I am firmly left wing.”

softautism.tumblr.com “Welcome to soft autism where we glorify autism all day long.”

stimallday.tumblr.com “A blog welcome to Autistics and Allistics alike! My name’s Olivia and I am autistic. My goal is to provide a safe place for Autistics to share our experiences and for Allistics to learn more about us and our experiences.”

stimmyabby.tumblr.com “Gay poet. Autistic survivor. Crazy. Teenage girl-ish.”

stimtastic.tumblr.com “Affordable stim toys, chewable jewelry and fidgets. Autistic owned and operated. www.stimtastic.co

thatautismfeel.tumblr.com “A blog for autistic people run by autistic people about autistic feelings”

theconcealedweapon.tumblr.com "25, Cis, Heterosexual, White Male, He/Him pronouns, Autistic, from Connecticut”

theunpuzzledproject.tumblr.com “An autistic-run project working to promote autism acceptance and celebrate neurodiversity.”

transneuroatypical.tumblr.com “A blog for neuroatypical dmab and dfab trans men, women, nonbinary people, and any non-cis gender variant.”

wheeliewifee.tumblr.com “This is my uncensored personal journey through the ups and downs of life as a disabled, chronically ill and neurodivergent student and activist.”’

with-the-light.tumblr.com “This is a blog dedicated to the manga series With the Light: Raising an Autistic Child and its dramatization With the Light: Embracing Autism”

withasmoothroundstone.tumblr.com “I am a deeply sensory person who cares about love and ethics. Hufflepuff to the core. The redwoods were my first home and my heart will live there forever. I live in the sensory world, I am only a visitor to ideas and words. Oh, and my alignment? Chaotic-good.”

yourfieldisableist.tumblr.com “I’m autistic with depression and anxiety, as well as possible Borderline Personality disorder (and a couple chronic illnesses), and I am a psychology major. This is my cataloque of the ableist ideas I come across in my classes, as well as other issues.”

Looking for more? Check out my previous blog rec where I included many more personal blogs by autistic individuals.

Periodic reminder

Autism organizations that autistic people actually support overwhelmingly affirm autistic self diagnosis.

The Autism/Asperger Association of New England has a page about deciding if professional diagnosis is right for you. A paper diagnosis is also not required to apply for their services.

The Autistic Self-Advocacy Network affirms self diagnosed autistic people and assists with self diagnosis. Quote: “The terms “Autistic” and “autism spectrum” often are used to refer inclusively to people who have an official diagnosis on the autism spectrum or who self-identify with the Autistic community.”

The Autism Women’s Network also affirms self diagnosed autistic people in their welcome packet thus: “Newly diagnosed or recognized autistic women,” and “Some of us were diagnosed as children, many were diagnosed or recognized later in life.”

There are a ridiculous amount of things that are needed in order to even get an evaluation in the U.S., like a doctor that knows what autism can look like in adults or is otherwise willing to learn and give a referral (rare), a therapist that affirms your autistic self diagnosis and is willing to provide notes (rare), an autism-evaluation office near you that doesn’t have a policy of only evaluating children (rare), good health insurance or a spare several thousand dollars (rare). The whole process is not worth it if you are not planning to use the paper diagnosis to apply for government assistance.

Not allowing autistic people to discover each other and form communities based on our shared experiences hurts autistic people a lot more than people whose autism self diagnosis ends up being incorrect. My therapists and doctors supported me in getting an autism evaluation because they affirmed my autism self diagnosis, and they would have affirmed it even if I had chosen not to pursue an evaluation.

@dire-consequence​ tagging you here bc the “programs” you linked me to had nothing to do with assisting adults in easing the cost of, or in getting, an autism evaluation. Also, autistic people, especially autistic women, are frequently misdiagnosed as something other than autistic by literal actual doctors, so “self diagnosis can lead to misdiagnosis” is not an argument against self diagnosis. Actual doctors misdiagnosing people without any self diagnosis is far more common and far more harmful than the instances of an incorrectly-self-diagnosed person getting an incorrect autism diagnosis.

Do you want cute dresses but can’t afford or get them for some reason?

Okay people, do you want cute dresses but can’t afford the super high-end ones? Well I got a solution called “Eric Dress.” It’s a website where you can order super cute dresses really, really cheap. The link to their website is here.

Seriously look at it everything’s so cute but it’s not like, a hundred bucks.

But wait, there’s more! Here’s a list of good things about this site!

  • You can choose your price range, which is good for people on a tight budget.
  • Their sizes go from S to 2XL. You can also enter in your measurements if you don’t know how their sizing works so you don’t order the wrong size!

  • You can search items by what material they’re made of, which is good for people with sensory issues.

  • You can also search items based on what’s suitable for the weather and how long the sleeves and skirts are.

  • They ship products internationally, though you might have to pay extra for that.

  • Basically, I think it’d be super useful for poor, disabled, and/or trans folks who want cute dresses but can’t get them for some reason.

  • Did I mention that everything’s soooooo cute?

So what are you waiting for, signal boost the hell outta this and get some dresses if you need them!

youtube

                       Autism:  See the Potential                                                                          Autism Ontario  

*this may be the best video about autism I have ever seen.

Nothing about us without us!

resources other than ABA?

Anonymous said:hello! I am a mom of a nine year old boy. I can tell he does not like ABA at all. I have taught him so much at home, and I am a first time and single mom. Schools only teach using ABA. My son does not like it one bit and is very behavioral.

I am desperate to try and find some other type of therapy for him. Do you have any suggestions? I so want this to stop. I feel it is abusive as well as being a waste of time. Thank you for reading this and for your blog!

realsocialskills said:

I don’t know what you should do specifically, because I don’t know you or your son or what the problem is. I do think there are some things worth considering.

Some thoughts about therapy specifically:

What is the purpose of the therapy?

  • Autism shouldn’t be seen as an indication that someone needs to be in therapy (particularly not many many hours of therapy), but it often is
  • Which means that a lot of autistic kids are spending time in therapy that they don’t need or benefit from
  • If that’s what’s going on, you might not need to find a replacement - it might just be a matter of stopping something that’s not needed
  • But sometimes there are reasons for particular types of therapy.
  • So, it’s worth asking:
  • Why does my son need therapy? What are the goals? Who are the experts who can help with this?

Some reasons that therapy can be needed:

Communication:

  • If a kid is having trouble communicating their thoughts and feelings in a way that others can understand, they need help with that.
  • Usually the best person to help with that problem is a speech language pathologist with experience with AAC.
  • SLPs with that experience can help kids with articulation if articulation is the main barrier, and can also help kids find ways other than speech to communicate.
  • Here are some resources for pursuing AAC implementation for your child.
  • ABA isn’t good for supporting communication because it assumes that the problem is lack of motivation, and because it’s biased towards doing things that make good data, which often interfere with communication development.
  • PECS isn’t good enough, because it doesn’t give people enough words. 9 year olds have more to say than requests.
  • For some people, the Rapid Prompting Method works really well. (Although I wouldn’t recommend it as a first resort; other communication support options are less invasive and allow for freer communication, when they work. But sometimes RPM works when other things don’t.).

Literacy:

  • Some kids have a lot of trouble learning to read
  • Kids struggling to read benefit from reading/literacy specialists
  • Literacy/reading specialists have specific training in teaching reading and troubleshooting reading problems. They have a lot of tools that behavior therapists don’t have. (Because behavior therapists are experts in training and modifying behaviors; they are not experts in teaching reading or figuring out what the cognitive barriers are.)
  • For some reason, this isn’t considered a special ed service, and it might not be offered to your kid if they’re in special ed (since people sometimes don’t think across categories)
  • But you can likely get it if you ask for it on their IEP.

Movement:

  • Some kids have a lot of trouble with fine motor skills or gross motor skills
  • Eg: Some kids need a lot of help figuring out how to hold a pencil
  • Or need to learn to move in safe ways: eg: some kids walk with a gait that will cause them long-term injury if it’s not corrected
  • Occupational or physical therapy can sometimes be helpful for this kind of thing
  • (Sometimes other things can also help, like general or adapted gymnastics or art classes and related things. Not every problem needs to be solved with therapy).

Emotional issues:

  • Being autistic is hard. Going through puberty is hard. Doing both at once is really hard.
  • Some kids benefit from psychotherapy to support them in dealing with this, or with other things
  • Finding a good therapist for kids can be very difficult, and I don’t really know how to do it well. But I do know that it can sometimes be a really good thing.
  • For some kids, animal-assisted therapy works better than talk therapy or play therapy

Psychiatry:

  • I want to be cautious about this because a lot of autistic kids and other kids with developmental disabilities are on inappropriate and dangerous medication
  • I’m *not* saying that your kid needs medication. I’m not saying that you should trust suggestions to medicate, or that you should cooperate with a school insisting on it.
  • What I *am* saying is that there are legitimate uses of psychiatric medication and that for some kids (and adults) it can be game-changing.
  • (Eg: Some kids gain the ability to understand school and do assignments if they take ADHD stimulants. For some kids, anti-anxiety medication opens up a lot of new possibilities.).
  • All that said, be careful about this. Some people might want to prescribe your child medication as a form of chemical restraint to control their behavior, and that’s not something that’s going to help them.
  • It’s important to have a clear sense of what the medication is supposed to do, what the risks are, and what side effects to look out for
  • And if a medication doesn’t seem to be helping or seems to be causing your child a lot of pain or distress, take that seriously and insist that it be addressed
  • (You can’t count on doctors to do this on their own initiative; you have to be proactive about making sure you understand the medication and the impact it has on your child.)

A general consideration: Don’t trust true believers and those who make excessive claims:

  • No approach works well for everyone.
  • True believers are not trustworthy. People who think their approach is 100% universally effective will not treat you and your child well if it’s not working, and will not know how to try other things or make good referrals.
  • No approach will cure your child’s autism. It’s probably better to avoid people who claim that their approach will be deeply transformative.
  • Therapy can teach your child skills. It can help them understand themself and the world better. It can help them communicate more effective. It can help them learn how to do things and troubleshoot. It won’t take away their disability or make them a different person.
  • Therapy is more art than science. Be suspicious of people who claim that their approach is strictly evidence based.
  • (They probably won’t treat you and your child well if your child has needs that their theory doesn’t predict. People who go on about being evidence-based tend to ignore the evidence of the real child they’re dealing with in favor of the ~evidence-based~ child they’re imagining based on their theory)
  • No therapist is a good match for every child, no matter how skilled they are or how good their method is
  • Be cautious of people who claim that all children like them, all children benefit from them, or that they just love all children. People who think that aren’t usually very good at seeing children as actual people, and are unlikely to be respectful. (And also unlikely to handle it constructively if your child dislikes them or finds the things they’re doing with them unpleasant).
  • There is nothing that all children like. (Consider the fact that many children hate chocolate and Disneyland).
  • The best therapists are people who are willing to be honest about what their skills are and aren’t, and the advantages and drawbacks of their methods. They will understand that match matters, and make a referral to someone else if it doesn’t seem like it’s working well.
  • Good therapists respect you as a parent and respect your child as a person. If a therapist is constantly making you or your child feel like a failure, something is wrong and needs to change. Therapy shouldn’t be like that. Therapy should be helpful and respectful.

Also, consider getting psychotherapy for yourself:

  • Parenting is hard. Single parenting is harder.
  • Learning to parent a disabled child in a world hostile to disability is also hard
  • Your own feelings matter, and it’s important to get support in dealing with them.
  • It can be hard to find a good therapist to help with this — a lot of therapists believe toxic things about disability and parenting disabled kids (because therapists come from the same culture as everyone else).
  • You may or may not be able to find someone good.
  • But if you can find a compatible therapist who shares your values, therapy can help a lot.
  • Just, generally — don’t forget that you are dealing with a lot of hard things and that your needs and feelings are important.
  • If you are miserable, something is wrong and needs to change.

Likewise psychiatric support:

  • Depression is common. So is anxiety.
  • Sometimes toxic support groups will encourage parents (especially mothers) to see despair and panic as inevitable results of raising autistic kids
  • But they’re not. Parenting an autistic child doesn’t mean you have to be depressed and it doesn’t mean you have to be constantly anxious and afraid
  • If you’re depressed or anxious, that’s a problem that needs to be addressed
  • And it might be something that requires medical treatment.
  • If you think that you might need help, take that seriously.
  • (And don’t try to treat your own mental health struggles by trying to fix your kid — it won’t work.)
  • I don’t know you so I don’t know if this is an issue for you. I just know that it’s common.

Beyond issues of therapy: can you get him moved to a mainstream class?

  • Being autistic doesn’t mean that your son has to be in an autism class. (Even if that’s where the school wants to put him.)
  • If he hates ABA, he might do a lot better in a regular class.
  • A lot of kids do.
  • Even if he can’t talk or demonstrate learning, he can still be in a regular class, and it can still be better than being in a separated ABA class.
  • You might have to fight for this in certain school districts, but the law is on your side if you want to do so. (And there are lawyers who specialize in special education issues).

More generally:

Don’t do this alone:

  • School systems and insurance companies and options are really overwhelming.
  • It helps a lot to get perspective and support from parents (and disabled adults) with more experience with the school system you’re dealing with
  • You’re probably not the only one in the system who has had to fight to get the school to do something other than ABA. (The Department of Education recently put out a letter about this problem.)
  • If you can find other local parents of disabled kids who are working to get their needs met respectfully, it will probably get a lot easier
  • They might be hard to find, because parent support groups are often toxic. For some reason, this is particularly true of autism-related parent support groups. A cross-disability group might be a better place to find good support.
  • (There isn’t any educational need or support need that is completely unique to autistic kids. Everything is shared by at least some people in at least some other disability groups.).
  • It’s also worth the effort. Even one person who gets it will help a lot.
  • Among other reasons: You get better results at IEP meetings if you come with a support person (even if they’re not an expert).

Other support issues:

If he’s socially isolated, the solution to that may not be therapy. It may be to help him find people who he connects with well. Which may or may not look the same as it looks for most other kids his age:

  • That may not be kids at school. Not all kids have friends at school, and that can be ok.
  • It may not be kids his exact age. Some autistic kids get along better with younger or older kids, and that can be ok too.
  • One thing worth trying is finding other kids who share his interests.
  • Or a non-theraputic class on one of his interests. Or something else you think he might enjoy. (Eg: An after school art class. Or a video game club.)
  • The Internet can be game-changing for some autistic kids. Eg: Playing Minecraft on a server. There are some kid-friendly servers that limit access to people who follow the rules. (Autcraft is specifically designed for autistic kids; there are other kid-oriented servers. Which someone likes is a matter of preference.)
  • Disability-oriented groups can also be a good thing, if they’re not about therapy or changing people. Eg: The Special Olympics, which is about access to sports in an environment that values people with intellectual disabilities, can be a very good thing for some people who are eligible.
  • Social skills groups are not good for this, because they’re not about friendship, they’re about getting kids to act out a certain script of what adults think kids should act like. That’s not fun and it’s not a good place to make friends.
  • But a social club for kids with disabilities (or autism specifically) to hang out with each other can be a good thing. It depends on the context.

Some other non-therapy considerations on how to help your son: It’s important to listen to and talk to your son:

It’s also important to talk to your son about his disability:

  • If your son knows things about his disability, he can make better decisions
  • If he knows what you think about his disability, your actions will make more sense to him — and he’ll be in a better position to correct you if you’re getting it wrong
  • This is important whether or not he can talk, and whether or not you think he can understand
  • I wrote a bigger post about that here

Just, generally speaking, it’s important to involve your son in these kinds of things:

  • I’m not saying let him decide everything; that wouldn’t be remotely appropriate for a 9 year old.
  • But, just like with other 9 year olds, when there’s a problem involving him, he needs to be involved in figuring out the solution
  • Or when decisions are being considered about him, or some change might happen that will affect him in a major way - it’s important to remember that he has a perspective and that his perspective matters
  • He will know things about his behavior and his needs and his feelings that you don’t know — for the same reason any 9 year old kid will know things about themselves.
  • Even if you can’t figure out how to have these conversations effectively yet, it’s important to keep trying
  • Whether or not you know how to find out what he thinks, whether or not his perspective changes the outcome — it will make a difference that you care what he thinks and make an effort to listen to him

Give him the right words for feelings:

  • Sometimes kids with disabilities are only given the emotional language of happy/sad/angry/excited.
  • But kids have more complex feelings than that.
  • Kids with disabilities also feel shame. And humiliation. And loss. And grief. And anticipation. And disappointment. And joy. And love. And embarrassment. And any other emotion that anyone else feels
  • Their feelings are important and need to be acknowledged.
  • Particularly - shame and humiliation are very, very frequent experiences for disabled kids, and they’re often not acknowledged at all.
  • It’s humiliating to be teased for being disabled. Or to have to do pointless repetitive things adults tell you to over and over. Or to be constantly told that your body language is bad and wrong, or to be treated as though you’ve done something disgusting when you flap your hands as an expression of happiness.
  • “You feel sad” or “you feel angry” does not begin to cover what that feels like.
  • Disabled kids have the same range of feelings as any other people, and their feelings need to be acknowledged and taken seriously.

In short: You don’t have to do ABA (even if your school system wants you to). There isn’t really a general approach that replaces it — because ABA makes overbroad claims, and there’s no approach for which those claims are true. Good approaches address specific issues and don’t take over your life. There are a lot of different things that a lot of different kids (and adults) benefit from. Which things will be helpful to your son depends on what his needs are.

Anyone else want to weigh in? What have you found helpful for your child (or yourself) other than ABA?

Resources Masterpost - updated

step 1: updating the links (done, though I feel I should have put more individual links and not links to more masterposts. Added two new links to Being Autistic, two to Advocacy and Groups, one to Intersectionality, five or six links under a banner of not quite fitting in other places, and several links to other masterposts)

step 2: describing all links (in progress)

here is the list! see here for my actual blog page on resources

Resources

INFORMATION 

This is mostly autism-related, but there are some other disability-related resources listed. Many of these have both Facebook pages, other social media, and websites, and I haven’t provided all of the outlets for all of the pages. I think they’re pretty easy to find links to if you’ve got at least one of their social media outlets. Feel free to share these links. I wrote very few of them myself, so if you credit anyone, please do so from the original source. Some links will take you to specific posts/writings from blogs I have posted on here. 

BEING AUTISTIC:

ALLIES AND INFORMATION FOR ALLIES:

ADVOCACY PAGES AND GROUPS (best subheading I could think of):

INTERSECTIONALITY:

DISABILITY NEWS AND HISTORY:

ON AUTISM SPEAKS:

THINGS I AM BAD AT CATEGORIZING

OTHER MASTERPOSTS

bit.ly
The world needs all kinds of minds
Temple Grandin, diagnosed with autism as a child, talks about how her mind works -- sharing her ability to "think in pictures," which helps her solve problems that neurotypical brains might miss. She makes the case that the world needs people on the autism spectrum: visual thinkers, pattern thinkers, verbal thinkers, and all kinds of smart geeky kids.
By Temple Grandin

Dr. Temple Grandin, diagnosed with autism as a child, makes the case that the world needs people on the #autism spectrum: visual thinkers, pattern thinkers, verbal thinkers, and all kinds of smart geeky kids.

autistic self diagnosis doesn’t “invalidate” paper diagnosis as much as it subverts the idea that only neurotypical doctors can identify autism. i’m 100% okay with invalidating the idea that autistic people as a group are incapable of figuring out they’re autistic.

it was a fellow autistic person who first identified me as autistic, and my self diagnosis process was taking some time to research and accept it. i consider myself to have been autistic-community-diagnosed.

tl;dr: you don’t need a neurotypical to tell you you’re autistic in order for you to know you’re autistic. self diagnosis is valid and several autism orgs have resources for figuring out if you’re autistic.

Special Backpacks Are Now Helping Kids With Autism

The beginnings of Nesel Packs started out simply, as a Kickstarter project, but soon after word got around about their backpacks that helped kids with autism, the project became a worldwide sensation in a short period. They’ve even managed to exceed their 10,000 dollar funding within the first week of their launch in March 19, 2016. Let us explain why these backpacks are extraordinarily helpful for autistic children and how they’re making a difference.

Keep reading

autismandhealth.org
For Patients & Supporters

(Main topic listing for Patients & Supporters)

This is an amazing, life-changing website designed to help autistic adults navigate the medical world.

If you’re finding yourself having to handle your own healthcare needs and feeling as lost and confused as I’ve been, this website has it all!

  • Downloadable checklists and worksheets for making an appointment, preparing for a visit, communicating about symptoms, and following up after an appointment.
  • Step-by-step navigation of the primary healthcare system, including finding a provider, making an appointment, preparing for a visit, having a visit, and following up on care.
  • A survey-based tool to create an individualized report for a healthcare provider of ways to improve healthcare access.
  • And more!!

I especially recommend their tool for creating a printable report to give your healthcare providers to help them better accommodate your needs (Found HERE)