Extra Resources on Autism

Resources

These are resources for:

  • autistic maskers of any gender
  • newly diagnosed autistic people/questioning if autistic
  • neurotypicals and non-autistics
  • parents of autistic people

For Parents New to Autism:

Parent of an autistic child on how they shifted their parenting perspective:

How to talk about your autistic kid, when asking autistic adults:

Explanation of why functioning labels are harmful:

How to Understand and Model Autistic Kid’s Needs/Emotional Regulation:

Why ABA is harmful to autistic people:

Other supports and therapies that can be helpful, that are not ABA:

Books and Lectures:

For Understanding Autistic People:

For social skills/understanding Neurotypicals:

  • Making Friends Strategies to improve social understanding and friendship skills (good for parents and younger autistic people)
  • Living Well On the Spectrum (very good for emotional regulation and some social cues – has worksheets in the back) by Dr. Valerie Gaus
  • Best book I’ve found for understanding neurotypicals:
  • A Field Guide to Earthlings: An autistic/Asperger view of neurotypical behavior by Ian Ford (sample of the book is here)
  • (^One caveat to the above book – ignore the “sex” chapter – it has very bad advice. All other chapters are good though. More for autistic adults but some of the metaphors at the beginning of the book are very helpful, likely even to younger autistic people.)

For Unlearning Ableism:

Youtube channels:

These are autistic people explaining their experiences and some basic terms as well, such as how to understand meltdowns, sensory processing issues, or eye contact/body language in autistic people:

Blog Posts about the Problems with Masking as an Autistic Person

Very important, amazing blog post on masking and mental health by the Pecan Gallery

Wonderful blog post by Spectrumy about masking and mental health

Wonderful blog post by an NT mom and experiences of her autistic daughter

Wonderful blog post by Yenn Purkis on autism and mental health

Wonderful interview with Kieran Rose on #AskKerrie about masking and mental health

Here’s a giant list of actually autistic bloggers

Social Media:

Also check out the #ActuallyAutistic hashtag on twitter (please respect that only autistic people may use that particular hashtag), as well as #TaketheMaskOff

#AskingAutistics is also helpful for asking us questions for better understanding (feel free to use this hashtag, NT or autistic, if you have questions about autistic experiences or need resources on a particular topic).

Helpful communication tools:

AAC apps (which you can obtain on an iPad or other tablet for communicating via symbols/pictures/phrases/words)

text-to-speech apps on phones (such as Emergency Chat, my favorite is Talk FREE as you can store phrases to use later)

Specific AAC and RPM resource list

These really cool laminated communication cards and key ring for disclosing autism or for communicating in a crisis or meltdown.

Learning a few signs in ASL can be helpful for communicating during a shutdown or meltdown, especially words like “yes” “no” “don’t want” “want” etc.

Flow Chart for why Talking is Hard for Us:

How To Talk
Flowchart description here

Oh and Fantastic Mr. Fox is an amazing movie, so I’m going to continue using this gif very far down the page:

FantasticMrFoxGif
Mother from Fantastic Mr. Fox: “I know what it’s like to feel, different.” *waves hands*

Diagrams/Flowcharts

These are flowcharts I’ve made to try to explain certain things. Feel free to use them or modify them as needed, as long as you keep the twitter handle in there. If you’d like to edit them to make your own version, just contact me and I can send you a google doc link.

The Demand to Anxiety Cycle (Or why Anxiety Looks Like Anger):

Title: The Demand to Anxiety Cycle. 8 boxes in a circle with arrows going to clockwise, and one box in the center. Box1, starting at noon on a clock: Child receives a demand/task that makes them anxious and stressed. Box2: Child complains to parent, “Why do I have to do this? It doesn’t make any sense.” Box3: Parent perceives child as rude, trying to get out of event.. Box4: Parent says “You need to go because that’s what people do.” Box5: Child gets more anxious and frustrated as that does not answer their question. Arrow going up to another box in the center, BoxA: Eventually leads to meltdown/shutdown by child, crying/frustration. Box6: Child says “It’s so absurd! Why do I have to do that? It’s not fair.” Box7: Parent thinks child is definitely trying to get out of the event, doesn’t perceive this as anxiety. Box8: Parent gets more frustrated, tells the child they are going. “You’re going because I said so. Can you stop complaining?” Goes to Box1 again. Box1 has an arrow pointing down to BoxA in the center.

How to Talk (why talking is hard):
Caption Description of How To Talk Flowchart in This Tweet

More Explanation about FlowChart Colors (the outcomes are in red, everything else is yellow besides “Think of something” and “Smile and Nod”)

Alexithymia I’m Not Okay Graph (Twitter Thread):

Graph with x-axis as "Body's Stress Level" and y-axis as "Level of Okayness You Think You're At." Y-axis units are labeled from bottom to top, I'm okay, totally fine, still okay, still okay, totally fine, and then 5 repeated still okay's, and then at the very top Not Okay in all caps. Orange horizontal line across the graph, text near it says Threshold for when you finally notice something is wrong. The actual graph line goes up exponential and then turns into an asymptote above the orange line. Text says Not okay, not okay, not okay along the line at the very top which is now horizontal.

Small Talk: Good or Bad (why small talk is hard):
Caption Description of Small Talk FlowChart in This Tweet

Tone of Voice Diagram (Posted on Twitter)

An x and y-axis with four quadrants, with a box of text for each quadrant. Title - Neurotypical Perception of Autistic Tone of Voice. Y-axis goes from Very low stress to very high stress, bottom to top. X-axis goes from low energy to high energy, left to right. Very high stress and low energy: Neurotypicals assume you are fine or even calm Your words are ignored Too monotone Too quiet Making grunting/stressful noises When help is needed the most but NTs will not understand you. Very high stress and high energy: Neurotypicals will be upset with you no matter what you say, even if it’s a compliment Too loud Too abrasive Too angry When help is needed the most but NTs will not understand you. Low energy/very low stress: Mostly Acceptable to Neurotypicals Talking Slower (i.e. Neurotypical speed) A bit too monotone Slightly too quiet High energy very low stress - Mostly Acceptable to Neurotypicals Talking too fast Perceived as interrupting Slightly too loud.

Masking Diagram (Twitter Thread)

Diagram of four columns. First column has header The Outside. Read from top to bottom: Them: Oh hey how’s it going?! I didn’t know you were in today. Me: Pretty good, how are you? Them: I’m actually doing really well! [explains what they’ve been up to] Me: Oh that’s cool! *nods and smiles* Them: So, what have you been up to? Me: Same old stuff, just doing X/Y/Z like usual. Them: Cool, well it’s nice to see you again. I have to go, see you later! Me: Cya! *smiles and waves* Second column labeled Masking Sensory Processing. From top to bottom: I can hear a whole conversation outside, I wonder who they are and what they’re talking about. This person’s starting to talk too loudly, I wish I could put my headphones on. Ow, that door slamming hurt my ears!! Don’t grimace or blink! Smile instead. What is that awful high-pitched buzzing noise? Is there a machine acting up or something? That clinking noise startled me! I couldn’t stop myself from twitching my shoulders but they didn’t notice maybe? They left, now I can figure out who’s talking outside, or was that a radio or a phone call? Third column header - Masking Socially. From top to bottom: I should smile, am I smiling? Look up at their face. Make your tone sound happier and less monotone or sad. Stop looking at the floor again, keep looking up. Look at the door right behind their head so they think you’re looking at them. Select option: “Pretty good.” “I’m alright.” “I’m doing well.” Select the first one. Chuckle, you’re not smiling. Keep smiling since your tone is getting worse. I looked in their eyes, that was awful, why did I try that? Look at the door. 4th of masking diagram, header - Social Cue Interpretation. From top to bottom of column. Is that a smile or a smirk? They’re standing really close to me. Are they angry or happy? They seem happy so I can say I’m doing well. They’re staring at me for a long time, are they trying to intimidate me or something? Is there something I’m supposed to say? Their hands are in their pockets now, do they want to leave? Should I stop asking them questions? I should give a short answer in case they don’t really want to talk to me. Did they really mean it was nice to see me? Or were they just saying that? Crap I forgot their name. I know I’ve interacted with them before! Where have I seen them before? Under the 3rd column of Masking Socially - @AutSciPerson www.autisticscienceperson.com

Masking Diagram Version 2 – Unmasking Boxes Included

2nd column in Masking Sensory Processing - added It's okay to grimace or blink because it hurts! They're not going to react badly. after "Ow, that door slamming hurt my ears!! Don't grimace or blink! Smile instead." 3rd column Un/Masking Socially - I should smile, am I smiling? You don’t have to smile, you know them. Look up at their face. You don’t have to look at their face, look at the floor. Stop tensing your neck muscles. Make your tone sound happier and less monotone or sad. Stop looking at the floor again, keep looking up. Look at the door right behind their head so they think you’re looking at them. You’re fine, you don’t need to look at them, look where your eyes naturally want to look. Select option: “Pretty good, I’m alright, Doing well” Select the first one. You don’t have to smile, they know you’re not sad. Your tone is getting worse but that’s fine, they know you well and won’t take offense. They left and you didn’t force yourself to make eye contact Good job! Wasn't bad

Chart of what some autistic people may say and what some may mean (twitter thread)

Two columns. Left column header - What Is Said. Right column Header - What This Person Could Mean. Box L1- "I don't want to clean my room" Box R1 - I don’t know how to break down this task to something I can execute. I haven’t had food/other needs met and am not emotionally stable enough to do this task. Box L2 - “I don’t want to vacuum/do the dishes/ mow the lawn!” Box R2 - This chore hurts my ears and I can’t do it because it’s painful for me. I haven’t had food and am not emotionally stable enough to do this task. Box L3 - “I don’t want to stop [enjoyable activity]!” Box R3 - My brain cannot easily transition away from this task in this moment. My emotional needs have not been met. I am stuck in a dysregulation loop and cannot get out. Box L4 - “Why do we have to do this? What is the point?” Box R4 - I don’t understand the importance or reason why I need to do something. This is causing me anxiety and I need you to explain what’s going on and why this is important. @AutSciPerson

Sensory Environment and Speaking Abilities (Twitter thread)

Sensory environment and stress impacts anxiety/overwhelm & speaking abilities. 3 rows of different colored cubes labeled external sensory environment (3 cubes), anxiety/overwhelm (4 cubes), & speaking abilities (7 cubes). +3 sensory environment cubes (loudness) adds 3 anxiety/overwhelm cubes, takes away 2 speaking abilities cubes. 2nd example: +5 cubes in stress level takes away 7 speaking cubes, adds 2 anxiety cubes

“Be Honest”

Flow chart with 6 boxes. Top box: Autistic person saying something to a neurotypical. Next box - Neurotypical black box of thinking/emtoions/concepts. Box 1A - Neurotypical Negative Reaction, Box 2A - Autistic person knows to never say those words to anyone ever again. Box 1B - Neurotypical positive reaction. Box 2B - Autistic person knows they can say those words to that one neurotypical in that one context.

Alexithymia (why understanding emotions is hard):

Neurotypical column on the left with one picture, and an autistic person column on the right with 3 pictures. Neurotypical person box: A text box that says "High heart rate, sweaty hands, shaky voice." Arrow points from text to a person's head and the person says "Jeez. I'm really nervous." Autistic person column, Step 1, Unsure: Same picture but a large red X saying "Alexithymia" over the arrow pointing to the head, with a person thinking "I don't know." Step 2, Investigate: Same picture. Person is thinking "Are my palms sweaty? What's my pulse rate?" Step 3, Assess: Same picture, but an additional arrow points from the person's head back to the box with physical states, which says "Conscious Monitoring." Person thinks "Yes and 120 bpm. Oh I must be anxious!".

How to Screen an Autism Charity –

Title - How to Know When Autism Charities Don’t Support Autistic People. 4 different columns with different colored text boxes. Orange column: ABA - Applied Behavior Analysis called a “support” and seen as helpful. Openly supports ABA therapy as an intervention for autistic children. Openly funds or trains professionals in ABA therapy. Purple column: Board Representation - All board members are not autistic (or only one autistic person on the board). ABA therapists on the board. People previously associated with Autism Speaks and “cures” on the board. Blue column: Use of Language. Says “Families affected by autism” or “Autism community” or “Key stakeholders.” Includes language such as “People who live with autism, suffer with autism, or are affected by autism.” Never says “autistic people.” Green column: Autism research. Researching “causes/prevention/treatment for autism.” Calling autism a “disease” or “illness,” lumping it in with mental illness, cancer. Research autism genes.

Stop Chipping Away At Our Authentic Selves

Picture of chisel/hammer at the top and an infinity sign under it. Different chunks are taken out of the infinity sign symbol with text in them. Text: “They have communication deficits. "But everyone's a little autistic!" "But isn't curing autism good enough though?" "ABA therapy helps people with severe autism." Autism is a disease/illness." "Suffers from autism." "You can deal with it." "But you're high-functiong, you don't understand what it's like for my child." Stop Chipping Away at Our Authentic Selves. @AutSciPerson www.autisticscienceperson.com