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ABA List Submission Box

Please feel free to submit articles to the submission box at this link if they have been missed or excluded from the Great Big ABA Opposition Resource List.

This is a submission box for articles that have been missed or excluded from the Great Big ABA Opposition Resource List.

The list is managed by one person who reviews every article on the list to verify that it is appropriate, place it in the correct category, and summarize it effectively. They do also have other things to attend to, so some articles get missed.

Please share them here and they will be added as soon as possible!

The submission box was last checked on 3/6/2023


Anonymous Submissions Post #1

Photo by Glenn Carstens-Peters on Unsplash

Anonymous Submissions #1-10

We’ve had an anonymous submission box for a few months now, and have slowly accrued some great submissions of important questions, and we’re happy to answer them all! First, we post them in our associated facebook group. Then, after getting input from our members, we’re sharing them on our facebook page and on this blog as well to ensure that our readers get to see their question answered.

Anonymous Submission 1:

Q: “The self diagnosis link under the announcements is returning Content Not Found. Will someone please confirm the URL?”

A: Here’s a link to our website, which should take you directly to the page with our Self Diagnosis FAQ.

Anonymous Submission 2:

Q: “Have autistic people who can see and hear, but have trouble processing both spoken and written words, been helped by Braille? If there’s no documented case of this, could it be possible?”

A: The general consensus of our community is that we are unsure. One member says that braille stickers on their computer keyboard help them to process, but nobody else who responded has learned to read in braille, so it’s unclear if this is helpful.

Anonymous Submission 3:

Q: “Were any of the fine folks here non-verbal as children? What age did you start speaking?”

A: Loads of members here were, and some still are. Please remember that verbal speech is not the only kind of communication, and all forms of communication are valid. Not everyone will use verbal speech.

I’m assuming you also meant vocal speech as well, which is using one’s voice to make verbal speech (verbal = words, vocal = voice) and that it is perfectly okay for people to never use vocal speech.

Some of our members have said:

  • They didn’t speak until they were almost five, but do use verbal vocal speech now.
  • They are currently nonvocal/nonverbal.
  • They have selective mutism (they are unable to talk in specific scenarios, like when they are stressed or overstimulated, but can speak when they feel well.)

Anonymous Submission 4:

Q: “My child can’t stand the feeling of standing on paper (like to outline their feet) or even to see others stand on paper. Does anyone else experience this?”

A: This is definitely a sensory issue. Some members expressed similar distaste to the texture of paper. Some members suggested eliminating this upsetting stimuli. Several members remarked that anything on their feet is upsetting to them.

Anonymous Submission 5:

Q: “Is there anything one should avoid when self diagnosing? I’ve considered that I may be autistic for upwards of 10 years but I’m just not sure how I would know if I’ve been reading articles or resources that are misrepresenting autistic people and experiences because I’ve done all of this privately and have no one to actually discuss things with. Sorry if this is a weird question.”

A: I think you should probably avoid Autism Speaks posts and pages about autism, and a lot of other large mental health pages and groups, because they are grossly misinformed. Your best bet is to seek out groups like this one and pages, scroll the #actuallyautistic hashtag on social media platforms, and take tests like the “autism quotient” and “aspergers test” etc. for confirmation if you feel it necessary.

Rest assured, self diagnosis is JUST as valid as formal diagnosis. (See question #1 for a link to our Self Diagnosis FAQ.)

One member suggested the Autism Spectrum Quotient test as a way to self-affirm diagnosis.

Comments from other members:

  • “As someone who self diagnosed, be kind to yourself. We always want to downplay our symptoms because we work so hard to fit into society. I spent a lot of time feeling like I wasn’t “autistic enough” and maybe it was just other problems presenting weird or I was overreacting. I did get a formal diagnosis eventually.”
  • “My doctor keeps telling me that adult diagnoses aren’t necessary because it’s too late for ‘interventions,’ and I’m like, I don’t need intervention, I need to be protected from discrimination!”

And one exceptional response read:

“If you’re really concerned about being wrong, relax. It’s not a perfect science. Doctors are wrong constantly. Professional DXs are wrong constantly.

Learn as much as you can, try to analyse your brain and behaviour critically, and make the best determination you can and that’s all you can do.

Diagnoses serve a few purposes:

* Insurance billing
* Getting treatment and supportive services and accessibility
* Understanding yourself and communicating yourself to others
* Finding community

Is your self-DX filling any of these roles? Then great, it’s working! Even if you’re wrong, if it helps you understand yourself better, find community, be better able to explain your needs to others…. It’s doing its job.”

Anonymous Submission 6:

Q: “My best friend got a job in a specialized autism program in a public school. He didn’t realize there would be ABA involved, but there is a little bit. They use a token system for appropriate behavior, but don’t discourage stimming or count it as bad behavior. He really likes the BCBA and says she loves the kids but it struggling with the job because he’s seen on here how bad ABA is. What would you tell him??”

A: I would tell him that if he has an ounce of respect for autistics, he would quit. There are other jobs, wonderful jobs that don’t involve the abuse and traumatization of innocent children. I would link him to the Great Big ABA Resource List, and add him to this group. I would encourage him to be as vocal about the injustice that is ABA as we are in this group.

Members suggested that the friend either speak to a superior about the problematic and harmful nature of the practice, or quit the job and pursue something less harmful.

Anonymous Submission 7:

Q: “Hi, Im sorry if I say something wrong. Im autistic adult, non-verbal, ID with other disabilities. I wondering how people make friends, I feel isolated and don’t have anyone to talk to that can understand how I am. Anyone I interact with tends be ableist or transphobic or something else that I don’t deal well with. Trying make friends that understand is hard. I not met another AAC user, or autistic despite having gone to special school and I’d really like be friends with someone like me. There was local group for adult autistics but they only accepted high-functioning autistics, other group more parent and carer. I don’t understand function label and doesn’t describe me. I feel I’m too difficult for anyone to try because have high support needs and great difficulty understanding words and communication. I have so much help doing anything. So how can make friends and not be so alone? Thanks for reading.”

A: Many of us primarily make friends within online autistic communities! It’s very easy to find kinship in other autistics! Much more difficult in person. There may also be autistic groups that meet up locally to you, or ASAN groups.

Anonymous Submission 8:

Q: “My child is autistic, and at the time nonverbal (not verbally impaired). I have a tattoo of a puzzle piece, then the “I love you” sign in sign language around it (think of the puzzle as a palm). Recently through more research I found out the origins of the puzzle piece. My question is, how bad did I mess up and how would you feel if you saw something like that?”

A: Firstly, let’s remember that puzzle pieces are a symbol of the hatred of autistic people. When I see a puzzle piece, I think of abuse, harm, and murder perpetrated against the autistic community, and of the largest hate group in the world which masquerades as a charity.

With that said, personally, I would be really upset to see this. It would make me feel disgust and sadness. I would feel bad for the child whose parent has that tattoo, which symbolizes hatred, abuse, trauma, and our perceived inefficiencies. And if I’m being totally frank, I’d get it covered up. I would not walk around with a hate symbol tattooed on my body.

Almost all suggestions were saying pretty much the same thing: We know you meant well, but you should cover it up, because it is upsetting and hurtful.

Luckily, the anonymous submitter of this question reached out to us and let us know that they are planning to cover it up! They were very receptive of our responses.

At a later date, we were informed that this person has covered the tattoo and the new tattoo is lovely.

Anonymous Submission 9:

Q: “I don’t understand why ABA is bad? What are specific experiences or examples folks can share? Seeing first hand experiences, not conjecture or opinion. I am the bio mom to a 2 year old, enrolled in ABA, Speech, OT in America, only on private insurance. He does not speak, among other issues.”

A: We’ve given this submission it’s own entire post, here. Take a look!

Anonymous Submission 10:

Q: “I’m wondering how to help my daughter with organising daily chores. I don’t like the idea of a rigid list eg. Monday put washing in the machine etc. My daughter has been asking for some time now for a list as a result of me being frustrated that I don’t get enough help. My main concern though isn’t about me feeling like ‘Cinderella’ I really want to support her for the future because I am worried that she may not cope well with independent living. I’ve been struggling to write a list because I don’t want to come across as dictatorial. If anyone has any ideas for how I can best support her, I would be very grateful.”

A: This post also got it’s own entire blog post.

A Note About Puzzle Pieces

Photo by Ryoji Iwata on Unsplash

The majority of Autistic People do not agree with the use of the puzzle piece symbol as a symbol for autism. There are a number of reasons for this.

The first and foremost thing you need to know about the puzzle piece is that it symbolizes the hatred, oppression, abuse, and murder of autistic people over the years.

Probably the second most important thing to know about the puzzle piece is that it was created for us without our input. No autistic people were included in the decision to make this our symbol.

The origins of the puzzle piece are dismal, beginning with a man working for the NAS (National Autistic Society in the UK) who believed that autism was “puzzling”. The original logo featured a puzzle piece with a child’s crying face.

Puzzle pieces have also given the impression that autistic people are a puzzle to solve, missing a piece, etc.

Later, the puzzle piece awareness ribbon was created with the intention to symbolize hope that autistic people could seamlessly integrate into “normal lives” after intensive abusive therapies and has often been construed to symbolize hope for a cure for autism. (If you are not aware, autism needs no cure, and autistic people do not want one.)

Currently, Autism Speaks (the world’s largest hate organization for autism, which you can read about in our “Required Readings” or “Autism Speaks” topics) utilizes a singular blue puzzle piece as their logo.

Other uses of the puzzle piece for autism generally involve infantilizing, childish color schemes.

Not only have autistic people repeatedly expressed their distaste for this symbol, but a study was actually conducted that concluded that puzzle pieces elicit a negative response.


There are a small group of autistic people who do not reject the puzzle piece symbol, but instead have “reclaimed” it and have decided that to them, it symbolizes something other than what it truly does.

This is inappropriate because you cannot separate the meaning from this symbol, and because you cannot reclaim a symbol that was never ours, and that is still used by the largest global hate organization masquerading as a charity.

The hate the puzzle piece symbolizes is inextricable from the symbol itself.

If not the puzzle piece and the color blue, what is our symbol?

There isn’t technically one universally used and loved symbol, but autistic people tend to utilize a combination of red, gold, and rainbow with the infinity symbol.

Red, because of the #RedInstead movement that rejects the use of blue to symbolize autism.

Gold, because of the elemental symbol for Gold being Au, which is the beginning two letters of Autism.

Rainbow due in part to the neurodiversity movement, and because of the color spectrum.

The infinity symbol is the recognized symbol for the neurodiversity movement. (Rainbow infinity is commonly seen for neurodiversity on the whole, while red or gold infinities generally symbolize autism.)

Why ABA Therapy is Bad: A Brief Summary

Photo by Dmitry Ratushny on Unsplash

If you’ve been linked here, it’s because you have said something that has prompted us to give you some more education on ABA.

Let’s start with the obvious: The GREAT BIG ABA OPPOSITION RESOURCE LIST

To summarize the evils of ABA shortly and succinctly:

  • ABA is child abuse.

  • ABA uses aversives such as verbal disapproval, planned ignoring, spanking, withholding of toys/comfort items/food, slaps, restraints, and even electric shocks.

  • ABA ignores a child’s consent, which can lead to lifelong issues with comprehending consent- which can lead children to ignore another person’s bodily autonomy, and more importantly can lead them to become victims of sexual or other forms of abuse.

  • ABA is conversion therapy, founded on the same principles as gay conversion therapy but with more torturous methods.

  • Autistics who have been in ABA are 86% more likely to develop PTSD than their peers that never experienced ABA.

  • ABA is usually extremely intensive, most children are forced to participate 25-40 hrs per week, sometimes on top of school and sometimes in place of an education (meaning the child gets no actual education).

  • ABA is an expensive scam.

  • The creator of ABA intended for children to be afraid of the therapists and their parents, which he actually said in one of his published journal articles.

  • The Association for Behavior Analysis International (ABAI), who oversees the Behavior Analyst Certification Board (BACB) endorses torturing autistic children with electric shocks, which have been denounced and called torture tactics by the United Nations (UN) and the US Food Drug Administration (FDA).

  • ABA therapy worsens any possible volatility in children and makes them unable to handle stimuli, causing more and more unpredictable meltdowns.

  • Behavior Technicians/Analysts/Therapists certified by BACB do not have any training. They are typically hired with only a GED or diploma, no college, and get no formal training of any kind. They are then encouraged to directly harm children and lie to parents about it.

Your child’s ABA does not have to tick all of these boxes to be abusive. If even one of these applies to the care your children are getting (and if they are in ABA, at least one of them does) they are enrolled in an abusive program that will traumatize them.

Anonymous Submission: how do I help my child organize daily chores?

Photo by Brooke Lark on Unsplash

Anonymous Submission:

Q: “I’m wondering how to help my daughter with organising daily chores. I don’t like the idea of a rigid list eg. Monday put washing in the machine etc. My daughter has been asking for some time now for a list as a result of me being frustrated that I don’t get enough help. My main concern though isn’t about me feeling like ‘Cinderella’ I really want to support her for the future because I am worried that she may not cope well with independent living. I’ve been struggling to write a list because I don’t want to come across as dictatorial. If anyone has any ideas for how I can best support her, I would be very grateful.”

A: If your child is telling you what will help them, listen. Your child has asked for a list, so give them a list. This is your child telling you exactly what you can do to help!

The most important thing about parenting is to listen to your children telling you what they need… and provide it for them. If your child is explicitly stating that a list would help them do chores, they actually do mean to make an actual, physical list.

I would list the chores that need to be performed and the timeframe they should be done within, and the order of importance. Make sure that these tasks are all reasonable for your child’s age and capabilities, though! Asking a toddler to vaccuum isn’t reasonable and asking a disabled person to do laundry might not be feasible.

A list of chores can be really helpful for an autistic person people who need explicit instructions for tasks or have difficulty remembering things. Many autistic people struggle with non-direct instructions, such as “can you please do the dishes?” which may read as optional or a question of capability; or “I need some help around here” that has no specific and distinct directions.

Other tips:

  • Do not phrase something as a question if it is an expectation. If there is no option to say no, and the child is required to perform the task, don’t ask them to do it. Tell them to do it.
  • Do not use language like “I’d like” or “I want” because that can often read as optional as well.
  • Don’t raise your voice or express your frustration. We know it’s sometimes infuriating when people don’t “pull their weight” so to speak, but yelling at an autistic person because they don’t do chores will only backfire.
  • Make sure there is no uncertainty about the task. Don’t say “clean the living room”- say instead “In the living room: pick up the books/toys and put them away and sweep the floor. In the kitchen, wash the dishes and put them away.” That type of thing. Say exactly what you mean.

Now, do address the portion of this question wherein you express concern about your child’s ability to live independently- your child is already showing signs of this capability! By telling you how you can help them, they are self-advocating, which is arguably the most important skill for an autistic person to learn before living on their own!

The best way to help your child be successful independently is by teaching them how to do what they cannot do. For example, an autistic person given a list of directions for how to complete a task will help them learn to do the task in the future. Let’s say you want your child to do two loads of laundry. Specify what can go in each load (maybe you want one load of clothes and one of towels) and how to wash them (clothes on delicate, towels on regular, perhaps) and dry them (clothes on low, separate out bras and hang dry those, towels on high, perhaps). Having a written set of directions can help them learn and remember how to wash those things! And there’s no reason they can’t some day have a list on the wall of how to do chores.

Independent living isn’t only about knowing how to do things for yourself, the entire process of transitioning from living with others to living on your own is a learning experience. Let your child learn and grow!

Some other suggestions from members in our group:

  • ‘”It’s not dictatorial if the person asks for it. To make it more democratic, you could also build the list together, if she is willing, and it can be open to modifications if she has troubles with it. Also invite her to talk about her needs, sometimes she may need to recharge and chores would get in the way, for example.”
  • “When I was a child my mother provided a list of expectations and it made my life so much easier. We need expectations spelt out thoroughly.”
  • ” I agree, she’s asking for a perfectly reasonable accommodation so I say make a list/chart. Also, by speaking up about something that would help, she’s showing evidence of self-advocacy skills. Those will become more and more important as she gets older.”
  • “I tried forever when I was a kid to get my mom to make a list for me to help her and she just wouldn’t do it. To this day (I’m 37 and don’t even live in the same state anymore) I have to hear about she doesn’t get any help around the house lol… Now I make lists for myself when I need to clean my apartment so that I can break it down for myself and not get overwhelmed.”
  • “Having lists makes it easier to live on my own. I make to do lists everyday and it helps so much.”
  • “Oh my gosh, that last point really speaks to me… my mom used to say ‘clean the kitchen’ when all she meant was ‘wash the dishes.’ That was completely overwhelming to little kid me! Did she expect me to scrub the floors? Defrost the fridge? Fix the caulk on the backsplash? I could never be sure and so what seemed like a very simple ask to her always ended up with a meltdown on my end.”

To make an anonymous submission: Go here!

Rejecting Asperger’s and other Functioning Labels

Functioning labels:

A lot of folks are reading the entry questions for our associated group and seem to misunderstand the last question: “Do you understand why functioning labels (including Asperger’s) can be harmful? If no, are you willing to learn?”

This does not mean:

  • Labels are harmful
  • Diagnosis is a label
  • Diagnosis is harmful
  • Identifiers are harmful
  • “Autistic” is harmful
  • “Autism” is harmful

Diagnosis can be an important tool in getting what you need as an autistic person, in the way of accommodations, but it can also be a hindrance (which is addressed in our Self Diagnosis FAQ) and that decision is a very personal one to make for yourself or your child.

Using the identifiers/labels “Autistic” and “Autism” are important and necessary. We are all about educating, advocating, and celebrating autistics, after all.

This does mean:

  • “Aspergers” is harmful
  • “Aspie” is harmful
  • “High functioning” is harmful
  • “Low functioning” is harmful
  • “Moderate” is harmful
  • “Severe” is harmful
  • “Mild” is harmful
  • “Level 1/2/3” is harmful

Functioning labels are descriptors of alleged functioning based on outward perception of the person by non-autistics. These are harmful because they are completely inaccurate and arbitrary.

But most of all, functioning labels are harmful because they are used for one of two things:

These labels are used to deny agency or independence to autistic people:

  • “Low functioning”
  • “Severe”

These labels are used to deny supports and accommodations (and even disability payments) to autistic people:

  • “Aspergers”
  • “Aspie”
  • “High functioning”
  • “Mild”
  • “Level 1”

“Moderate” & “Level 2” can go in either direction, depending on a few factors.

Functioning labels have been repeatedly found by autistics to be unhelpful and harmful, and researchers have finally gotten on the same page. Functioning labels hurt autistic people.

To expand on the uselessness of functioning labels and levels for autism:

Levels and functioning labels were created with the intention of making it simple to address the needs of someone based on perception by an outsider. This idea is inherently flawed, but even if it weren’t, there’s a deeper issue. It is much simpler to say the specific support needs of the person and address them than to generalize that they need “a lot” or “a few”.

Saying what each autistic person individually needs is more important and useful to everyone than giving an arbitrarily decided upon grouping based on your perception of their outward behavior.

So how do they determine these useless levels (and how did they formerly determine these useless functioning labels that are now no longer diagnosed)?

Someone who has minimal knowledge of autism, and is not autistic, looks at the outward/overt behaviors of the autistic person and makes a determination based on how stereotypically autistic they appear outwardly. This means that nonverbal autistics are almost always grouped into “low functioning” or “level 3” because they do not speak, which makes them appear more autistic to an outsider. We know that speech and communication are not good indicators of a person’s ability to function (and we know that nonverbal does not mean they cannot communicate.)

What they are measuring, which they often do not realize, is the autistic person’s ability to “mask” (masking is something that almost all autistic people do, consciously or subconsciously, which is essentially to hide your autistic traits to appear outwardly more allistic.)

If someone speaks, makes eye contact, and does not do obvious stimming like hand flapping during the limited interaction they have with the evaluator, they will likely be classed as “level 1” or “high functioning” because they are masking quite a lot.

It is harmful to base these arbitrary categories on outward perception of masking because that does not show what supports the person truly needs. Someone who is verbal may still need more supports in other areas than someone who is nonverbal, for example. I think I’ve talked your ears off enough, I’ll leave it at this.

Asperger’s specifically is much worse than just a functioning label.

Asperger’s Syndrome was a functioning label featured in the DSM for 19 years (1994-2013) and has since been removed because it is inaccurate. Now, the only autistic diagnosis in the DSM is Autism Spectrum Disorder. In some countries, the ICD is used instead of the DSM for diagnosis, and Asperger’s is still currently listed in the ICD. However, it is being phased out in the newest version which will debut in the next couple years. It was meant to separate “high functioning” autistic people from their other autistic peers.

Even if you were diagnosed with Asperger’s, it is not okay to use that term.

This issue is incredibly important to us and to the autistic community as a whole, and we will not allow deliberate ignorance of this issue. Using functioning labels or “levels” of autism is harmful and never acceptable. It is not acceptable or allowable, it contributes to the othering of and harm of autistic people, and we do not allow it.

To get into the nitty gritty of why Asperger’s is so awful, though, we have to go beyond the functioning label aspect.

Hans Asperger, whom Asperger’s was named after, was a Nazi doctor.

During World War II and the Holocaust, Asperger was essentially responsible for determining which autistic people were “smart” enough to be spared their deaths and torture and which were not so lucky.

He looked at the outward characteristics of the autistic people in concentration camps and hand selected which ones would be exploited to further the Nazi cause (by helping develop machinery/etc) from those who were deemed unhelpful and then sentenced to death or torture and experimented on.

(for those unaware, disabled people were largely experimented on and murdered during the holocaust.)

And I’ll end with some examples and further explanation:

To expand on why functioning labels are so terrible…
They are entirely arbitrary and do not hold any meaning. Someone labeled (incorrectly) as “high functioning” may have similar support needs to someone labeled (incorrectly) as “low functioning”, or any other variation.

The Autism Spectrum is not a linear sliding scale from “extremely/severely autistic to “normalcy- it is an abstract collection of traits that is meant to show that autism looks different on all of us, despite common traits.

what do autistic people think of ABA therapy?

Short answer: They almost universally hate it.

Photo by W A T A R I on Unsplash

These stories were all obtained anonymously via google forms survey. Some of these are quoted from parents or loved ones and others are quoted from autistics.

“The focus on eye contact and eliminating comforting stims is frustrating and gross. I bite my nails when I’m interested in something, and if made to stop, I spend all of my energy focused on not biting my nails, rather than whatever I need to be doing.”

“ABA is literally based on gay conversion therapy techniques and animal clicker training. It’s barbaric to treat a human being like this in 2019. If you don’t want to possibly raise a person with autism (or any learning/developmental disability) you shouldn’t have kids.”

“I wished more parents with autistic children understood the harm they are causing thier children and leaving them having to overcome PTSD in the future.”

“ABA is harmful and abusive. I don’t want my child to be taught to conform or obey blindly. She needs to be respected and able to grow as she is.”

“ABA sucks ass.”

“I have read some horrific accounts of ABA and the effect it has on autistic people. My hope is that we can find a way to make our society more inclusive and safer for neurodiverse people such that neurotypicals do not resort to harmful practices ever again.”

“It’s manipulative and disrespectful of the person’s dignity.”

 “Ban it pls.” (pls stands for please)

“I would never subject anyone to ABA.”

“Comparing it to dog training is unfair because even dog training acknowledges that everyone has basic emotional and cognitive needs and that these should never be used for behaviourist purposes.”

“Again, I do not think it was in the best interest of the autistic people and I noticed a lot of ‘conditioning’ to remove behaviors deemed inappropriate. I was never the target, luckily, because I hid my behavior, which not everyone can.”

“ABA should be outlawed.”

 “I am not a dog to be trained. I am left flinchy at harsh voices and unable to completely relax without weed and avoiding my parents who got me into this state.”

“Its is abusive and makes autistics second guess everything they do.”

“I’d rather shit in my hands and clap.” (I’m not joking, this was actually submitted!)

“It’s an awful thing that should not be used.”

“It’s horrible and should be outlawed in all cases. It’s abuse. It’s torture. It’s hell.”

“Its abuse.”

 “ABA is abusive and should be illegal.”Edit or delete this

 “I put no on dog training because when training my dog I listen to what he tells me, I don’t make him stop being a dog.”

 “It’s disgusting, it should be binned.”

“I despise it.”

“Its abusive and does more harm than good.”

“ABA is Abuse.”

“ABA has the goal of making someone ‘appear neurotypical’ rather than helping them navigate the world in their own way.”

“ABA in all its forms is harmful. Changing a few techniques or making it child led or play based will not change that.”

“It is so simple to teach coping mechanisms and meet a child’s support needs. ABA is not needed and is cruel.”

“It’s undercover child abuse.”

So there you have it; 28 individual anonymous responses from actual people who feel that ABA is harmful, abusive, and cruel.

Self Diagnosis FAQ

Photo by Alex Alvarez on Unsplash

From our Facebook Page & Group.


Photo by Zachary Nelson on Unsplash

Q: What is self diagnosis? 

A: Self diagnosis is when a person determines that they have autism (which can occur in a variety of ways including informal internet assessments, information from autistic peers, etc) without the help of a medical professional or without a professional diagnosis.

Q: Why self diagnose? 

A: There are many reasons for which someone may self diagnose. Most often, patients experience an unfairness when seeking formal diagnosis’ because they do not it the narrow stereotype that most mental health professionals are taught about autism (which I will discuss below), or they are unable to seek healthcare of any kind due to lack of insurance and/or funding. Other reasons may include concerns about their treatment in the workplace or school, concerns about custody arrangements, concerns about treatment from partners and family members, concerns about loss of freedoms/autonomy or concerns about abusive therapies. Some others may self diagnose in the meantime until they are able to get a formal diagnosis- this is how almost everyone diagnosed in adulthood technically does it.

Q: What’s that you said about the narrow stereotype that most mental health professionals are taught about autism?

A: Most mental health professionals are taught a wide array of startlingly inaccurate things about autism, but I will focus here on the ones that in particular, influence who they will and will not diagnose. It is a common misconception that autism occurs primarily (or only) in white men and boys (AMABs). It is also commonly believed that autism is always noticeable in early childhood. If you are not a 2-10 year old boy (AMAB), the odds of your autistic traits being dismissed by a doctor are astronomical. Doctors and therapists often believe that women and girls (AFABs) and sometimes POC are unable to have autism, or that it is rare. This is false. Mental health professionals also have a higher tendency to dismiss the concerns of women, nonbinary folks, transgender folks, disabled people, people with other mental health disorders, young adults or teenagers, POC, etc. In particular, AFAB persons and POC are dismissed at an alarming frequency. This disparity in treatment and diagnosis creates turmoil in the lives of many people. Doctors are less likely to diagnose autism in adults or teenagers, POC, women or nonbinary people, the list goes on. Doctors will also dismiss concerns of autism if a patient expresses concern that they may have it- they have been reported as saying “If you are asking, you are too self aware to possibly be autistic”. Doctors will also refuse to evaluate a person for autism if they believe the person is able to make eye contact (some can, but others have been told this when looking elsewhere on the face in efforts to mask). There is a lot of bias in diagnosing autism.

Photo by Teymi Townsend on Unsplash

Q: I’d like some more information on other reasons a person may not seek a diagnosis. 

A: A large volume of people (particularly in the US) are unable to even see a professional to consider a diagnosis. The US is not on a single payer insurance system, insurance is very expensive. For those not on insurance, costs may be in the several thousands to be seen and evaluated for autism, particularly if a doctor wants to rule out other psychological or neurological causes for traits. Another set of people feel unsafe for various reasons- see below.

Q: Why would someone feel unsafe being formally diagnosed with autism?

A: A formal diagnosis means that in your medical records, there is a report saying you are autistic. In the event that others find out, things can go awry. In some scenarios, it may be safer and smarter for a person to not have that listed in their file. Fear of mistreatment by medical professionals, employers, teachers or other persons who may have authority over you and/or may have your life in their hands is a real and valid fear. Although it is technically illegal to fire someone or refrain from hiring someone because they are autistic, it does happen. It happens more often than you would think. Fear that they will be refused acceptance to or be removed from their dream school program or job may inhibit some people from seeking a diagnosis. Particularly if they need said job to support themselves or a family. In some cases, children may be removed from their home and placed into the custody of another parent or grandparent that is suing for custody if the court is made aware that the parent they initially lived with is autistic. In order to protect their children, an autistic person may refuse to seek a formal diagnosis. There are also countless cases of violence against and murder of autistic people, and it may be safer for some people to slide under the radar, particularly if they have a past history of being abused by someone. If an abuser made this discovery, it could be detrimental. If you are under the age of 18 or in the care of a legal guardian, you may be forced into abusive therapies or treatments like ABA therapy or even violent “cures” like “bleach therapy”.

Q: Aren’t there benefits to being diagnosed?

A: Short answer? There are some, but not enough to outweigh the risks (even if you assume the person has access to a dx). Long answer? a professional diagnosis can help a person get supports that they need- school or work accommodations, disability payments, etc. You may be eligible for scholarships based on being autistic. You will likely have more access to therapy. But frankly, there are not a lot of supports in place for autistic people at this time.

Photo by Nate Johnston on Unsplash

Q: Is self diagnosis accurate? How can someone determine this about themselves?

A: Because autism is a neurotype, and a person knows their brain much better than a stranger who speaks to them for only a short time, self diagnosis could arguably be more accurate than professional. Particularly when you consider that professionals often have inaccurate ideas about what autism is and isn’t. It is possible for a self diagnosis of autism to be wrong, but it is also possible for a professional diagnosis of autism to be wrong.

Q: Should a self diagnosed autistic person still identify as autistic?

A: Absolutely! Identifying as autistic can be very beneficial to all kinds of autistic people- it can give you something to ground yourself on, help you fit in and find communities that experience life in a similar way to you. Owning your neurotype will help you be happier and feel less alone.

Q: Are they faking/seeking attention?

A: No. Why on earth would they? But even if there were a few people who did… Its still important to make sure everyone else knows they are still valid.

Q: Is self diagnosis valid?

A: Of course! Autistic is autistic, regardless of how the person found out about it.

Q: Is self diagnosis important?

A: If you couldn’t tell from reading what is posted above… of course it is!

Photo by Joel Mott on Unsplash

anonymous submission: “I don’t understand why ABA is bad?”

Anonymous Submission:

Q: “I don’t understand why ABA is bad? What are specific experiences or examples folks can share? Seeing first hand experiences, not conjecture or opinion. I am the bio mom to a 2 year old, enrolled in ABA, Speech, OT in America, only on private insurance. He does not speak, among other issues.”

Our Answer: ABA therapy is child abuse. The focus of ABA is to assimilate autistic children to behave as neurotypically as possible. The goals of ABA are now, and have always been, to reduce the visibility of autism in autistic children. 

While I do not personally have experiences with ABA myself, I did delve into loads of research, other people’s personal experiences, and several articles and journal papers on the subject.

Here is an abundance of links explaining what is so terrible about ABA!

Here are several anonymous personal accounts of ABA.

Here are several other statements from autistic people about ABA.

There are numerous other responses on our thread in the Facebook group “sounds like you should ask an autistic, but ok

You can also find us on our Facebook Page: Ask An Autistic

To make an anonymous submission: Go here!

personal stories from those formerly enrolled in ABA

These stories were all obtained anonymously via google forms survey. Some of these are quoted from parents or loved ones and others are quoted from autistics.

From parents:

“We had a newer practitioner, she did not suppress stim or demand eye contact, however she did very much demand certain flow from conversation. The last straw for me was when my daughter was trying to explain her perspective abd her refusal logically (this is obviously very difficult for a six year old, distressed, autistic to do! I was very proud of the effort!) And in order to make a more genuine connection, my daughter made very intentional eye contact, and the therapist turned her head dramatically away from my child, repeatedly and refused her hearnest eye contact, as a declaration that she would not listen to or consider my daughters feelings. My child was working so hard to communicate and she was crushed.”

“ABA was used on my daughters when they were in elementary school prior to diagnosis. We were never told the methods the teachers were using were based in ABA. PTSD, low self esteem, and inability to emotionally regulate are severe now.”

“ABA was presented to me as “parent training” and I was several sessions in before I realized it was ABA, we were working specifically on toileting, and the method was so bizarre to me, there was a time table that increased demand to be seated on the toilet more and more frequently until she used it, they tried to tell me She couldn’t have m&ms anymore unless she successfully toilets (m&ms were her favorite thing in the world, so we did not comply with that for long) in the end it left her terrified of the process of toilet training and put us further behind. Not to mention that it only punished and rewarded, it did not take into account that sensory deficits are to blame for her delayed toileting, not stubborn behavior.”

“ABA caused my autistic daughter to burnout and regressed with being able to use the potty or be able to self regulate.”
[note: we don’t advocate for the use of language like “regressed” here.]

“I have unwittingly used some of the techniques which are hallmarks of ABA (repeatedly giving the same command with insufficient time to process) while raising my autistic child. It only made the situation worse for both of us, amplifying her distress and my frustration. ”

“My son was enrolled in the pre-k program. The teacher, also a BCBA, used ABA on him. We saw a huge shift in his overall well being and attitude. He now shows symptoms of anxiety and a need for rewards for any type of demand.”

“My little girl worsened with ABA. I stopped it when she asked me to. It seemed like abuse and certainly not good for a child.”

“My son was in an award winning ABA preschool for approx 6 months before we knew it was detrimental. While verbal understanding and use improved, behavior became more explosive. I believe my son fits the PDA profile so his anxiety and behavior amped up after a few months I think due to the constant demands. I pulled him when he started to physically fight me to avoid school. I don’t know if there will be any lasting effects as of yet.”

“When our child was diagnosed at age 3 (more than a decade ago), we were told that the optimal outcome would be ‘indistinguishable from their peers.’ For 2 years leading up to the start of school, and for a good portion of our child’s elementary/primary school experience, they were subjected to ABA therapy or behavioral management based on ABA principles. Our child is now a young teen with a range of mental health challenges, and they feel very strongly that ABA sent them messages of ‘you are less than.'”

“My son was briefly enrolled at age 3 for potty training issues. I removed him after only two days as he had extreme anxiety about going back.”

From other loved ones:

“My person sometimes doesn’t even know who they are anymore. They told me they feel like a shell of the person they were before, and when situations come up that otherwise could have been managed by stimming they meltdown now. They were perfectly fine before.”

“I wasn’t enrolled in ABA myself due to being diagnosed at 15, but my brother (who is 10 years younger than me) was diagnosed as a toddler and put through ABA by our mother. I noticed that he’s more anxious and tired than ‘normal’ for a child his age (he’s 10) and I strongly suspect that ABA is responsible. (We also have an allistic sister who is the middle child and tries to follow our mum’s lead when it comes to interacting with our brother, which worries and upsets me.)”

“My partner and I are both autistic, and by all accounts were very similar as children. My partner was diagnosed and sent to ABA, whereas I was not. Not only does my partner have more trouble regulating emotions and dealing with the emotions of others, but her mother, who was the one who’d enrolled her, is much more hostile toward harmless autistic behaviors such as stimming than my family is.”

“My aunt doesn’t like to talk about it that much because it’s quite traumatic for her, so all answers [in the survey] about the family member were how I think she feels.”

“I have seen it do harm to a good friend. They became ill from the stress of pretending to be ‘normal’.”

“Autistic friend was damaged by ABA, suffered a great deal and was left in an institution.”

From former providers and other professionals who witnessed ABA in a professional setting:

“I worked briefly in a school which used it. It was nothing short of horrific, and put adults in a place of extreme power over children, controlling their every move and handling them constantly. The adult was always right, the child was always seen as wrong/broken and in need of fixing. This is in the UK, in extremely recent years. I saw signs of trauma in particular in children who had been in aba for a long time, such as starting to pull out hair, a desire to please out of fear (e.g. repeating ‘I’m happy, I’m happy’ and trying to smile even when crying), and meltdowns triggered by the demands of aba itself. Staff saw dealing with meltdowns, especially when the child became violent or destructive as a badge of honour, because it showed they were ‘doing their jobs’. Children were left with no autonomy whatsoever, and no dignity. Skills were tokenised, but ultimately crushed under the more prominent demands of ‘point to the cat…good job, quiet hands’. It didn’t matter if a child was skilled in maths, or piano, what mattered was that they could learn stock phrases to sound neurotypical and comply, comply, comply.”

 “As a special ed teacher I have had some training. Instinctively I didn’t use ABA for teaching purposes, it made no sense to my autistic mind. I always had fun and success following the child’s lead. Verbal expression, eye contact all arise naturally when the child feels safe and accepted. ABC charts would have been filled for diagnostic purposes if child was being assessed by NEPS, Child Dev etc.”

“I work in education and have seen a couple of children who have been put through ABA. Contrary to Lovaas’ idea that autistic children who go through ABA become ‘indistinguishable from their peers’, it’s often easy to spot the students who have been through ABA programmes as they often come across as quite passive and unquestioningly compliant. I can’t lie, as a teaching assistant this does make my job easier but that shouldn’t be a reason to make children do ABA – it feels wrong to try to change their behaviours just to make things easier for their teachers and parents. One child had a full-time ABA tutor with him in school, which was definitely counter-productive as he had few opportunities to interact with other children in the classroom as the tutor was always the one interacting with him. It marked him out as ‘different’ which he didn’t like, and he struggled to make friends. Obviously social difficulties are a hallmark difficulty for autistic people, but in this case the ABA was an additional barrier to him making friends as he was being encouraged to present a false version of himself to the other students. I also think he’d have had an easier time making friends if he’d have been allowed to do it his own way and in his own time rather than having friendships engineered for him by his ABA tutor.”

“I worked at an ABA school as an intern in high school. At this point, I was unfamiliar with ABA. The experience was horrifying. I became suspicious of ABA before I started working there. The person who had set the internship up was an inclusion specialist at my school. They weren’t my assigned inclusion specialist, but nonetheless took a specific interest in me for some reason. Once I started expressing doubts, they pressured me to talk to the owner/CEO(?) of the school about it. We did. I was belittled and dismissed the whole time. Later, she (the owner) implied that I would be intellectually disabled without these services (I had been through a program that used some of the same techniques, but wasn’t ABA). This not only showed a disrespect for people with intellectual disabilities, but also a deep misunderstanding of disability and a manipulativeness that would continue throughout the internship. I wanted to quit, but people from all sides pressured me and gaslit me about my worries. The school itself was awful. There were bizarre, homophobic and transphobic posters on the wall. They were supposed to be about the ages of development for kids, but included things like ‘gender-appropriate play for age’ (?). More than once I witnessed abuse. I was supposed to find crafts for the kids, so I found one where we’d decorate paper plates and cut them into spirals to hang them. One kid accidentally tore his plate in half when cutting it and waned to start over. I said sure, because we had the materials and the time to do it and I didn’t blame him for wanting to start over. The staff insisted over and over again that he staple it until he started crying. Three adults finally surrounded him, used hand over hand to force him to staple it as he cried, and then started clapping and telling him ‘what a good job’ he had done. Later, they pulled me aside. In hushed tones, they said they wanted me to know what happened. They told me they just wanted him to understand that he didn’t have the right or ability to say no to them, ever. The other major incident happened later. The kids would help put small hand towels in the wash and dryer as a chore. They would also help to fold them. (Yes, this was a part of ‘school’.) The students were folding towels. The head teacher, who had a penchant for being rude, impatient, and dismissive of students started bullying the kids. One kid, tired, got upset and lightly tossed a towel at the teacher. She immediately began to belittle him more and he had a meltdown, crying and pacing. She looked him dead in the eye and said ‘That’s right. Cry. No one here cares about you.’ The whole school was a nightmare. They would seclude students, often with no teachers around, in a ‘quiet’ room for bad behavior. They’d restrain them by pushing them into a chair with a pillow (supposedly it was a sensory thing they ‘liked’. I have doubts). They would drag students screaming and crying from the park where we had lunch to the classroom if they ‘misbehaved’. They made fun of students with each other frequently. It was awful.”

“I was an ABA therapist for a short time and it was definitely abusive. When my bosses found out I was autistic they said the company never had an autistic employee, and played an autism speaks video at the next staff meeting about how horrible it is to have autistic children. It felt like they were trying to get me to quit between that and refusing my reasonable accommodation.”

“It is child abuse and I use my position as a Court Appointed Special Advocate to try to prevent children from being subjected to ABA.”

From autistics who experienced ABA themselves:

“I believe I was enrolled in ABA when I was very young, almost too young to remember. I obviously didn’t respond to it very well, because my parents took me out of it eventually. It left mostly trauma and confusion, as I remember simultaneously having a terrible childhood while also having a great one.”

“My personal experience involved physical contact such as slapping my hands whenever flapping occurred. There were other incidents, however this one stands out.”

“I spent 11+ years getting pulled out of class in order to learn the same social skills over and over again, and then got yelled at for not performing well in school because I wasn’t learning the material.”

“Every session ended with me in tears.”

“I’m super flinchy and my grandfather who got an early version of it was visibly left unable to unmask and relax, and flinchy.”

“Simply put, ABA was structured to destroy my self-confidence and agency for not following arbitrary cultural rules. Had I been allowed to interact on my own terms, I would simply have been able to learn, and I still hold that I was never truly disrespectful, just not obsequious, but unfortunately the people around me growing up felt that they could enact any harm on me to try to change this, regardless of where I actually stood.”

“Experienced torture and shutdown due to ABA can not understand my own needs and am unable to ask for basic things to survive from being taught my needs won’t matter. cannot communicate effectively and have not learnt any skills to live independently. don’t know who i am always taught whatever i might be was wrong. it’s a struggle to try and learn who i am at 40.”

“Trying to change who I am a person by mentally abusing me as a way to train me to “be better” was the hardest thing I’ve ever had to go through. It disconnected me from my family as I felt I couldn’t trust them nor that I was loved by them. It made me fearful of all face-to-face interactions because I am still mentally afraid of the consequences, even though it’s been over a decade since my last ABA sessions. I have lifelong PTSD over ABA and it needs to be banned. ”

 “My memories are mostly early childhood with the quiet hands being prominent. It’s hard to sit still and focus for any kid but ADHD and ASD meant there was no way. a lot of forced eye contact too and I just I can’t.”

“I was told to stop playing in the ‘wrong way’ and was taught that my emotions and feelings were wrong. I was fortunately pulled out after two weeks because of how expensive it was, and my family didn’t view it as very effective for my own needs.”

 “I had to wear plaster boots to stop me stimming by toe walking, I was not damaging my feet, it just didn’t look ‘normal’, this is alongside electronic shocks and other harmful practices.”

“My mom had to fire a few therapists for using physically abusive tactics.”

“I was physically restrained for not following instructions. (quiet hand and eye contact bullshit.) My hobbies were shamed and ridiculed and I was told to have more ‘girly and age appropriate hobbies.’ I was forced to ‘try’ new foods (they were forced into my mouth) and I was yelled at for vomiting afterwards. I brought my comfort item one day and it was forcibly taken, I was told I could have it back if i did well… My sister got it back 3 days later when I told her what happened.”

“I am less emotionally developed than others my age due to ABA.”

“ABA is very traumatic, I do not want to talk about my trauma.”

“I have not been enrolled in ABA but my caregivers did use method similar to it when I was a child (holding my hands so I didnt flap, make me look in the eyes, force me to work without washing my hands at recess (hard time writing with sweaty/clammy hands), ect) and I do feel like it made me less able to regulate myself and caused me more anxiety and distress. One example I like to use is: Would you hold down the handof someone communicating in sign language? No? Then why would you hold down the hand of an autistic child? It enable us to regulate ourselves, destress and communicate how we are feeling also.”

” I would not wish the experience I had on anyone else. “

“ABA is responsible for me being hesitant, and in some cases incapable of expressing who I am. While I do not consider this PTSD, I consider it to be a huge factor in the disconnect between my emotions and my expression.”

“I never want any child to go through what I had to suffer through. “

” I am not a dog to be trained. I am left flinchy at harsh voices and unable to completely relax without weed and avoiding my parents who got me into this state.”

“Expensive PTSD-inducing hell i wish i didn’t have to go through.”

“It’s one of the worst things to ever happen to me.”

“It ruined my ability to say no, taught me that I didn’t have bodily autonomy and primed me for abuse later in life. I can only imagine how much worse other people might have it. 😦 ”