Dear Google, I’d Like a Word
This morning, 12/5/2022, I was writing a blog post that briefly discussed stimming, which led me to look up “why do autistic people stim” on Google.
For those unfamiliar with the term: “stimming,” short for “self stimulatory behavior,” means repetitive movements, such as hand flapping, spinning in one’s chair, or hair twirling. Stimming, and especially noticeable examples such as hand flapping, are associated with autism. In fact, stimming is one of the diagnostic traits for autism. However, under the right circumstances, we can observe more common and less obvious stims, like hair twirling or pen tapping, in anyone.
I have followed autistic bloggers since 2009, and over the years, have read over a dozen posts where they explain why they stim.
They also explain that it is harmful for people to prevent them from stimming. It denies them an outlet, a means of communication, a basic way their bodies operate, and the ability to move spontaneously through the world. Until recently, autistic people were the only ones sharing that information. Even today, some autism intervention programs still treat stimming as a negative “behavior” to “correct.”
I expected to see at least a couple posts by autistic writers on the first page, maybe even the top half of the first page. Because, if you want to know why people do something, you ask them, right?
Unfortunately, I didn’t find a single post written by an autistic person until page two.
Over ninety-nine percent of people who make this search may stop with page one, and will never see that post.
What the Search Turned Up
For those of you who’d like to look a little more closely at how Google’s algorithm ranks useful, relevant information, I’ve included screenshots of the first 3 pages of results.
Let’s start with the featured snippet.
Notice that:
It’s from an organization focused on parenting, meaning that it is written by neurotypicals for a parent audience. (raisingchildren.net.au)
It actually does explain a purpose and useful function of stimming. Excellent.
Search Results #1–4 (see image below):
Keep in mind that over a quarter of readers just click the first result that comes up.
So, you’d expect the first result to be an exceptionally clear explanatory post from a famous, reputable autism organization, or maybe an autistic person, right?
Nope.
It’s just an opinion piece from Spectrum News, a leading autism-focused news publisher. Not even a piece of feature reporting.
Spectrum News. It would be reasonable to find a piece from this outlet within the first few pages. But why should an editorial from a news organization be placed before both factual reporting by the sources you’d expect — big autism-focused organizations–and autistic people’s own testimony? At least this piece has a good title: “stimming, therapeutic for autistic people, deserves acceptance.”
National Autistic Society. Fair enough. This is one of the leading autism organizations; you’d expect it to be high on the list. At least it’s not Autism Speaks, which has been rightfully criticized by the very people it claims to benefit.
VerywellHealth.com. Really? Autism isn’t a disease, and neither is stimming.
Medical News Today. Ditto.
Notice the assumed audience is always non-autistic parents who are worried about their children.
It does not seem to occur to Google that there are diagnosed autistic people, and people with autistic traits who have not been diagnosed, who want to understand themselves better.
This trend continues in results #5–7:
5. HealthLine. Not only is a medical source odd for the reasons explained above, but also it assumes without qualification that stimming is something that should be “managed.” Not a great resource.
6. WebMD. See my reservations about VeryWellHealth and Medical News Today.
7. Acornautism.co.nz, a service provider for children and youth. Points to this one for asking word-for-word and neutrally what many parents might ask: “what is [stimming] and why does my child stim?” Also, points to this one for being from somewhere other than the U.S.
#8–9:
8. Childmind.org, or the Child Mind Institute, a leading United States children’s mental health charity, mental health service provider, and research center. This one is reputable enough to belong high on the list.
9. Aruma.com.au, an Australian disability services provider. I was not a fan of this article, apart from the first paragraph. (And btw, both autistic people and “experts” know more about stimming than the author gives them credit for).
Page 2:
Remember that most people will never see the following results.
#10–12:
10. Exceptionalindividuals.com, an organization that provides support for neurodivergent people and their employers. Finally, an organization that does not assume the entire audience consists of parents (although one would not know this from the Google search page). Note that this is about a highly specific sort of stim, called a “vocal stim,” so it will not be relevant to all audiences wanting to know why autistic people stim.
11. Stephaniebethany.com, the website of an autistic adult who writes “to help people understand autism and themselves better.” This is the first post written by an autistic person in the search, but I only know this from reading her website’s About Page; nothing in the Google search indicates it.
12. Neuroclastic.com, a website of posts written by neurodivergent people. Finally, the first post clearly written by an autistic person! This is an excellent post I’d never seen before by Maxfield Sparrow, listing a number of reasons for stimming. Move this one higher up the list, Google.
#13–15:
13. Psychology Today. This publication is the “popcorn” of psychology and neuroscience journalism, in my opinion. Perhaps their posts deserve a high search ranking for easiness to read, but not necessarily for quality and informativeness. The title isn’t great, either. It implies that stimming is either uniquely autistic, or something that autistic people always do differently than others. Neither is true.
14. Ncbi.nlm.nih.gov — a repository of research studies. Finally, the first research article — and only the third piece that presents any autistic perspective.
15. Goodtherapy.org. Not one of the top sources I would choose, as autism isn’t a mental illness and neither is stimming. Furthermore, there’s no type of mental health therapy for stimming. At least the title refers to “people,” acknowledging that all humans stim to some degree.
#16–18:
16. Psych Central. Okay, one might expect a general psychology website to feature reasonably high in the search results, as stimming is a human behavior. But not this high, and not at the expense of more specific, directly relevant results. Incidentally, stimming is about more than the self-soothing the title reflects.
17. Totsguide.com is a website for parents on child development.
18. Wikipedia. That the Wikipedia article appears so low in the search — most of the way down page 2 — is an interesting curiosity.
19. Autism Parenting Magazine. Another resource for parents; enough said. Once again, “vocal stimming” is more specific than many searchers will be looking for.
Page 3:
Well, here we are on Page 3, which most people casually searching will probably never reach. Maybe we’ll finally find some posts by autistic writers here?
#20–22:
Well…there’s one.
20. Appliedbehavioranalysisedu.org, a website that helps people pursue training to become providers of Applied Behavior Analysis. “Is it normal?” “Those living with ASD?” Ugh, that’s definitely not language many autistic people will enjoy. At least most people will never get far enough in the search to see this one.
21. Autism Parenting Magazine again.
22. Youtube video by IndieAndy, an autistic person, although note that the Google search shows nothing about who made the video. (Note to anyone from Google who might be reading: failing to include information about who made a video isn’t useful, and often leads me to avoid watching videos).
#23–25:
23. Youtube video by Stephanie Bethany, the autistic woman whose post was featured on page 2. Note that again, the Google search shows nothing about who made the video.
24. May Institute, an organization that provides ABA services to people with disabilities, including autism. Note that ABA has a long history of trying to make people stop stimming, and this post is no exception.
25. Bristol Autism Support is a service provider for autistic children and their families.
#26–28.
26. Betterhelp.com is an online therapy service. Again, not the first place I would look for information, as autism is not a mental illness, and neither is stimming.
27. Autism-Advocacy.fandom.com is a small wiki about autism which, despite the url, does not appear to have anything to do with fandom.
28. Ambitiousaboutautism.org.uk. A UK autism charity. At least that last bit, “stimming helps autistic people…” sounds promising.
29. Certified Autism Center.com, located in the US, provides services to autistic children and their families.
I am disappointed.
How Google Can Improve Their Search Results
My suggestion to Google: kick the medical website sources way down the list. By placing them so high, they are making the statement that autism (and possibly stimming) is a medical problem with potential medical solutions.
Replace them with more posts by autistic people. These posts are wonderful resources because:
a) they provide content that no other sources do, namely insider information as to why people stim; and
b) they address the broadest possible audience — they are the only ones that address people who stim themselves, not just parents.
Follow these up with reputable autism organizations and links to research on stimming.
Just to make Google’s job easier, I went through my personal collection of bookmarks to list what should have been included in the first three pages of results. If anyone from Google is reading, I hope you’re taking notes.
The following use examples or definitions to explain what stimming is. They belong on the first page:
Stimming 101, or: How I Learned to Stop Worrying and Love the Stim by Kirsten Lindsmith. It’s clear, easy to understand, explains what a stim is as well as why someone would do it. In short, it’s everything the best of the neurotypical autism organizations feature, plus the information only autistic writers would include. Should be #1 or #2 on the page.
Ask an Autistic: What is Stimming? [video] by Amethyst Schaber. Or, if video can’t rank so high, try this news piece on Amethyst Schaber, Autistic Blogger on the Joy of Stimming by CBC radio, which links to the same video.
Stimming and Autistic Stress by Heather Cook. Covers a lot–what, why, that everyone stims, that stimming can express happiness, that suppressing stimming can make it hard to think, etc. Slightly more aimed toward parents than most other autistic writer’s blogs; parents will probably find it useful.
The High Cost of Self-Censoring (Or Why Stimming is a Good Thing) by Cynthia Kim.
I Stim, Therefore I Am by B.J. Forshaw.
Quiet Hands, by Julia Bascom.
The Dark Side of the Stim: Self-injury and Destructive Habits by Kristen Lindsmith (answers questions parents might have about how to handle self-destructive stims in a way that actually addresses the reasons for them and the needs they meet).
Eleven People With Autism Explain What Stimming Feels Like from The Mighty.
Types of Stimming Infographic by Just Keep Stimming. Includes accurate image descriptions, which can be hard to find on the web.
These resources are equally useful, but because they assume you already know what stimming is, they probably should go a little lower, perhaps the lower half of page 1, or on page 2.
A Cognitive Defense of Stimming (Or Why “Quiet Hands” Makes Math Harder”) by Cynthia Kim, about how stimming can help a person think and focus
On Stimming and why “quiet hands”ing an Autistic person is wrong by The Caffienated Autistic
Happy Flappy Tappy Aspie by B.J. Forshaw (on what it feels like to stim) [yeah, I know, Aspergers doesn’t exist any more, but this post was written in 2013]
This one can also go on page two because it only contains a single paragraph about stimming. However, that paragraph is frankly more informative than some entire posts by autism organizations.
Behavior is Communication: Are You Listening? By Cynthia Kim
Page two should also include Twirling my Brains Out by autisticook, which includes a checklist of stims people report having, and a link to the results. And here’s the Google Doc with the Stim Checklist itself (worth a fairly high placement because of the wide range of examples of stims included).
Readers, am I forgetting any good resources on stimming by autistic writers? If so, please leave them in the comments and I will update this post to add them!
TL;DR: Google, Please Do Better
Currently, your rankings communicate that:
Autism is a disease of which stimming is a symptom;
Autistic people are either not in the audience or not interested in understanding their own condition; and
The only experts with something valuable to say are non-autistic.
Knowingly or not, audiences browsing your search page are consuming these implied messages. They are also missing out on inside information on autism.
The choice of what sources to prioritize — which are important, accurate, and relevant — is not epistemologically or politically neutral.
Please change the messages you are sending. Do better.