ABA: Advice for Neurotypical Professionals
If you are an ABA professional or you work with autistic people in a direct service capacity, the fact that you are on this page is already a win. There are remarkably few providers who actually value the opinions of the people they are serving, so I want to commend the ones who actually made it here. My opinions on ABA therapy are mixed, having been a provider myself, but in general I believe it to be over-prescribed and ineffective in the majority of cases.
The biggest piece of advice that I can offer to active and aspiring professionals is that you read pages like this that will give you the autistic perspective. Then, evaluate your school or business to ensure that you are actually benefiting the people you are trying to help. Your program would ideally have more autistic people on staff than neurotypical people, but this is often not the case. The next best thing would be to hire autistic people to work as independent contractors to evaluate your services.
Next, examine the environment that you are providing services in. No matter what kind of service you are providing, the environment needs to be highly customizable to the individual client, especially as you are beginning services. Programs can be added later to reduce the client’s sensitivity but during evaluations and the early stages of services they should be able to control the lighting, temperature, and smell of the room you are working with them. There should be ample activities that cover a wide range of interests and age groups and the client should have complete access to all of them. This is part of effective ABA protocol, but other types of interventions might not include this acclimation process.
The next piece to evaluate is your methods of data collection and intervention. Are you including the client's opinion in what areas they want to improve? Are you considering your own biases as a neurotypical person in regards to socially acceptable behavior? Does your business require that all types of stimming be reduced, or only stimming that is self-injurious? How long are you able to spend with the client before writing up intervention plans? Are your diagnostic and intervention materials inclusive of race and gender? By answering all of these questions, you can begin to determine if your services are truly for the benefit of the client.
In order to improve the service options that are available to autistic people and their families, neurotypical people need to be willing to adjust their expectations to match their client’s. Most people are able to communicate what they want and need in some way, so make sure that you are offering multiple forms of accessible communication. You are likely working in this field to try to help people, so make sure that you are truly benefiting your clients by revisiting these questions periodically. If you are in an executive position, these inquiries can help you make structural decisions that will gain and retain more clients in the long run.
Childhood: Early Traits of Autism
The CDC has a concise summary of autism for parents who are wondering if their child might be autistic. Generally, a child’s pediatrician will be the one to make the referral for testing, but this can also come from teachers, daycare professionals, or family members. Early diagnosis and intervention is critical for a child’s success with their diagnosis in the future, and testing can rule out more serious conditions like neurological diseases.
More detailed information about the symptoms of autism and how they can be portrayed in different individuals is scheduled to be released here in early 2022, but there are certain indicators that can appear extremely early in childhood. Not responding to their name, avoiding eye contact, and not using gestures to communicate are all social indicators that would appear before the child is one year in age. Other traits include repetitive motions (stimming), delayed motor skills, and unusual emotional reactions.
As a good rule of thumb, parents and other caregivers should be spending enough time with each child to be able to tell if any behaviors are new or recurring. This will assist any diagnosticians with evaluating the child for any conditions, not just autism. If your child is recommended for autism testing, remember that this is by no means a moral label on you or your child. As I have expressed many times on this page, autism is poorly represented in the media and your child is not doomed by an autism diagnosis. Your child is absolutely perfect just the way they are, and the best thing you can do for them is to love them unconditionally.
Social, motor, and emotional differences are the most common early traits of autism. This is not meant to be a comprehensive list, and you should also seek out the opinion of a professional who has direct experience with your child to be able to make the best decision for them.
Basics: Helpful vs Harmful Organizations
Per the potential risk of legal action, I have decided to approach this subject of autism charities in exclusively general terms. As individual consumers, it is up to each person to do their own research and decide where they want their money to go, but I wanted to provide some tips to look for when doing this process. You can consider it a list of red flags to avoid.
Anything to do with the puzzle piece symbol:
The puzzle piece symbol was created by an autism hate group to represent how people with autism are a puzzle that needs to be solved. Organizations with this symbol more often than not are in support of creating a cure for autism, the problems with which we will be discussing in a future post. Look for the rainbow infinity symbol instead!
Focus on parents instead of autistic people:
With the exception of some parental support groups, it is a red flag whenever a group is more focused on the emotional needs of the parents of the autistic child rather than the needs of the child himself. A good place to check for this would be any kind of merchandise section of the organization’s website. If all the items have slogans related to being a parent of an autistic child rather than having autistic pride, that would be a red flag.
Lack of autistic voices:
Going off the last point, if you notice that the voices being amplified through this organization tend to be professionals or researchers rather than autistic people, that would be a red flag. If the primary goal is to educate about autism, the majority of their content should be coming from autistic people. Instead, look for an organization proud to have autistic people in leadership roles and that are honest about their representation.
Overemphasis on one method of treatment:
Unless it is an advertisement of a specific company, an educational organization should have information on a wide variety of options for people seeking assistance for autism related problems. For example, a website saying that the only way to get an autistic child to speak verbally is through their specific type of intervention, it would be time for you to check where their funding comes from. You would be surprised by how many organizations are funded by larger research groups to promote certain programs as being more effective.
Inaccessible media:
Any charitable organization should have their website and resources available and accessible to anyone. If you open a pamphlet from an organization and the colors are obnoxiously bright, for example, that pamphlet is likely not accessible to some people. Organizations that truly want to benefit the communities they serve will, at minimum, create materials that are able to be used by that group of people.
As a rule of thumb, when I am learning about a new topic I try to switch the language to apply it to another totally separate category of people. For example, if I am reading about a neurological condition, I should be able to replace the name of that condition with any other and still feel that it is being respectful. Oftentimes people with disabilities are excluded from social justice circles due to accessibility, so if you would feel uncomfortable saying it about another marginalized group, it probably isn’t ok to say about disabled people.
Basics: Autism Comorbidities
A comorbidity is any condition that is more likely to occur in the presence of another condition than without it. A common example of a comorbidity with autism is ADHD because being neurodivergent in one way makes you more likely to be neurodivergent in multiple ways. While this is the most common, there are other pairings that autism with which has been linked. Please note that some of these are based on anecdotal evidence while others are from scientific literature. Also, this page is in no way a method of diagnosing anything, I just think it is interesting to investigate commonalities among these conditions.
Dys/hyperlexia (difficulty/ease with reading and writing)
Dys/hypercalcula (difficulty/ease with mathematics)
ADHD and ADD (deficits in directing attention)
Gastrointestinal issues/disorders
Connective tissue disorders like Ehlers Danlos Syndrome
Irregular sleeping patterns
Mental health problems like depression and anxiety
Tic disorders like Tourette’s
Epilepsy and seizures
Eating disorders like binge eating or restrictive eating
Some of these can be explained as being connected to already acknowledged symptoms of autism, like having increased anxiety associated with living in a neurotypical environment, whereas the connections with others are more vague, like gastrointestinal issues. This brings the discussion of how symptoms are determined to be part of one condition or another. For example, one could wonder how many people with confirmed autism need to have seizure related conditions before seizures are considered a possible symptom of autism? Where is the line between autism and seizures in this scenario?
Research into comorbid questions seek to answer these questions using statistical analysis, but we still have a long way to go before we can say that the diagnostic criteria for autism is truly comprehensive.
Basics: Stimming
Stimming is a phrase used by the autistic community to describe self regulatory behavior. If you know someone with autism, this is probably the first thing you noticed to be different about their behavior. Common forms of stimming include rocking, hand flapping, and spinning.
Self regulation is important because society is built for neurotypicals to succeed and environments are often not sensory friendly. If you are neurotypical, I would challenge you to notice the various sensory stimuli you encounter going through your day. Then, imagine what you would do if these stimuli were physically painful to you. Are the lights on the subway too bright? Does your local coffee shop offer accessible ordering options? Just being aware of these differences is the first step to making the world a more equitable place.
As an autistic person, specific stimuli are too much for me to handle, but sometimes there is nothing I can do to avoid interacting with my environment. Bills need to be paid and I have to take care of myself. Stimming allows me to control something about my sensory experience and being able to focus on that piece I can control is what allows me to start to ignore the unpleasant parts. I still have meltdowns and shutdowns due to sensory overload, but these are much less frequent when I am able to self-regulate.
If you are in public and see a person stimming, what is your initial reaction? Do you avoid them? Do you think of them as being on drugs? Analyze your initial reaction to these situations and try to catch some of your implicit ableism. In order to work towards a more inclusive society, we all need to analyze our own biases around ability and try to check them whenever possible.
Basics: Functioning Labels
If you find yourself in clinical autism spaces often, you might have heard someone describe yourself or your child as high or low functioning. These labels can be confusing for new diagnoses, but there’s no reason to be worried. High and low functioning autism do not exist as diagnoses in any diagnostic manual, but some diagnosticians prefer to use them to describe a person’s needs and abilities.
These labels have a history of being used to divide the autistic community based on levels of support needs. This is also why the diagnostic label of Asperger’s Syndrome was used for so long, but that is a discussion for another day. Division already runs rampant in the neurodivergent community, so there is no reason to continue that in my opinion.
The preferred language is high/low support needs, as this more accurately describes what functioning labels are trying to portray. By taking a strengths based approach, we focus on what the person does well rather than over pathologizing them. Additionally, people labeled as high functioning feel that this description minimizes their struggles navigating an ableist society. High and low support needs people agree on this change in language as it is more clinically effective.
There is no need for people with higher and lower support needs to be divided in the autistic community as there is persistent overlap in symptomology regardless of categorization. By joining together as one community and diagnosis, we can share our common experiences and learn from each other more effectively.
ABA: Is it right for your child?
Because the field of ABA has a monopoly on research grants and educational funding, ABA therapy is often the only option offered by insurance for treatment of autism. There are people who feel strongly on both sides of the ABA argument, so no matter where you look you will find biased information.
I think that the autistic community with the privilege of an education has a sort of responsibility to protect current autistic children in the ways that we were not provided as children. The Americans with Disabilities Act was not passed until 1990, so there were whole generations of autistic people with little to no political protections. Because of this, we are living through a revolution of autistic empowerment now that we have the ability to do so in certain spaces.
For allistic (non-autistic) parents of an autistic child, the pressure to place your child in ABA services is overwhelming. Parents lacking relation to the autistic experience will not have access to the same information and might be confused and scared by an autism diagnosis. We can debate the reasons for this reaction, but that does not change the reality for parents.
The important thing to remember is that you know your child and family best. Practitioners tend to over-prescribe interventions because having your child in treatment more will allow them to bill you or your insurance for that time. If you decide to place your child in ABA services, here are some potential red flags to look for:
Interventions seek to stop or replace self-regulatory behavior that is not physically harming the child or others
The professional doing your program evaluation is not the person who will be covering your child’s progress and supervision
Your RBT changes several times
The therapist recommends more than 10-20 hours per week
If at a center, the therapy location is not sensory friendly for your child
Your child has an intense negative reaction and is inconsolable during the assessment
The therapists refuses your requests to supervise assessments and sessions
Programming focuses too much on “table time” or DTT methods and not enough time on Natural Environment Teaching and social interaction with others
The program requires targets to be met before providing food, water, or bathroom breaks
If at a center, they do not have bathrooms that accommodate your child’s gender identity
Programs do not have inclusive materials (Ex. only using emotion cards with pictures of one race)
You visit the center and can hear practitioners talking about their clients
ABA: What is it?
As an autistic person who has worked in ABA, I have an interesting perspective on the issue of ABA reform. Most people only have one of those perspectives, which is part of the issues I will talk about later. This post is not intended to bash ABA because I want to first educate people about ABA therapy and behavior analysis as a field.
Applied Behavioral Analysis is the field of analyzing people’s behaviors and then applying techniques to manipulate behavior towards a desired outcome. Notice that this definition does not specify whether the manipulator or manipulated is the one whose “desired outcome” is considered. This will become one of the major critiques of ABA later.
ABA therapy is defined as “a type of therapy that can improve social, communication, and learning skills through reinforcement strategies” (Healthline) that is primarily used for autistic children. Oftentimes, insurance companies will only offer ABA therapy as being covered, so most children only received those services. ABA services can be offered at a center or in home, but the treatment team usually involves a Board Certified Behavior Analyst who supervises and creates the treatment plan, and a Registered Behavior Technician who actually meets with the child and goes through the programs.
If you decide to take your child to ABA therapy, here is how that process generally goes. Please check out my list of questions to ask therapists to make sure you pick the right center and provider for you and your child.
A diagnosis of autism is received by a pediatrician's referral.
You can choose to notify your insurance and ask if any providers are covered, or you can wait until you meet a practitioner.
You make an initial appointment with one of the program’s BCBAs. Some use professionals who are qualified but not board certified, and these will be called Behavior Consultants.
During the initial assessment appointment, the BCBA will interact with your child and ask you questions about their health and behavior. You may or may not meet the RBT(s) assigned to your case at this time, as different centers do this differently.
A few days after your initial appointment, your BCBA will contact you to review their findings and to decide what programs you would like to include in the intervention plan. Most centers have you meet the RBT by this point.
When an RBT is assigned to your case and a schedule is made, your child will begin their services.
I hope you found this sort of timeline helpful. Remember to check my other posts about ABA to make the best decisions about your child’s care. I have included links to some sources discussing this issue as you begin to form your opinion about this.
Brief History of ABA (Applied Behavior Analysis)
A Study in the Founding of Applied Behavior Analysis Through Its Publications
ABA Therapy: How It Works, Examples, Cost, Controversy
Is the Most Common Therapy for Autism Cruel?
Exploring Quality in the Applied Behavior Analysis Service Delivery Industry
The Fuzzy Concept of Applied Behavior Analysis Research
5 Important Reasons Even "New ABA" is Problematic
A Commentary on Critchfield and Reed: The Fuzzy Concept of Applied Behavior Analysis Research
Replication Research, Publication Bias, and Applied Behavior Analysis
Pervasive Undisclosed Conflicts of Interest in Applied Behavior Analysis Autism Literature
Stereotyping Autism
Unless you know someone who has autism, you likely only see it portrayed in the media. However, it is important to examine how the media influences the medical world. Doctors and nurses and psychologists and teachers all consume media, they do not live in a vacuum, so the media’s presentation of autism can actually impact real people.
The most common, and pretty much only, representation of autism that is shown (positively or negatively) is a white cis/straight male with low support needs. This is commonly known as the Sheldon Cooper effect. If you think of autism, most people conjure an image of a little white boy who knows more about trains/superheroes/cars than most people. These characters are normally presented as comedic relief and are made fun of by the main characters. What image does that send to autistic people? To diagnosticians?
In reality, the rate of autism is (likely) no different among sex/gender/race/ethnicity but that is not what is shown to people. What happens when a black girl goes to the psychologist for an autism evaluation? Are they taken seriously? Usually not. AFAB people are significantly under-diagnosed for ASD because the symptoms tend to present differently. This is the same for other groups as well. The symptoms are being presented but they do not fit the media’s standard of autism so they are not evaluated.
Some people would say that getting a diagnosis does nothing to benefit a person. I agree with this to a degree, but being a late (early 20’s) diagnosed autistic AFAB person, I spent my formative years knowing I was fundamentally different from my peers while being told that I wasn’t. This gaslighting created a distrust in myself that has stopped me from getting a physical diagnosis for other conditions in adulthood because I feel that I can’t trust my own mind saying something is wrong.
Once intersectionality is introduced to autism, people with multiple marginalized identities are even more oppressed due to simply having more than one oppressed identity. Depending on the person’s communication level, they may or may not portray this to a doctor. There could be (valid) reasons some communities feel uncomfortable speaking with doctors or psychologists. We need to start evaluating people for autism and other conditions in a culturally sensitive manner before we can decide what autism truly looks like. Right now we only have a tiny part of that picture.
The Vaccine Debate
If you don’t know anyone with autism, you probably have only heard of it through the media, which often does not provide accurate information. The best example of this is the “vaccines cause autism” controversy that is still continuing.
Put simply, vaccines do not cause autism. Autism is a developmental disability which means it starts in utero with how the brain develops. Vaccines do not change your DNA, so it cannot cause autism.
The study first claiming that vaccines cause autism has been debunked numerous times and has been retracted from all scientific publications that mentioned it. Research ethics councils have stated the study was unethical and it also only used 12 participants which is an extremely limited sample size. It was found to have used fraudulent data and the primary researcher, Andrew Wakefield, has been discredited for this study.
The idea that a child is better off dead from a preventable illness than to grow up autistic still persists in modern culture, even 20 years after that study was originally published. If I could talk to people who were choosing not to vaccinate for this reason, I would ask them why they hate people like me so much that they would rather have an unhealthy child.
Autism may be considered a disability, but I am of the opinion that the rest of the world is to blame for this. If autistic people were allowed to live as they choose, I do not think it would be considered a disability and there would not be so many people vehemently opposed to it.
The Vaccine-Autism Myth Started 20 Years Ago. Here's Why It Still Endures Today
Lancet retracts 12-year-old Article Linking Autism to MMR Vaccines
Stimming Resources
The majority of the time, an autistic person who is given the opportunity to stim will figure out what type(s) and method(s) they prefer on their own. However, this can be difficult for late diagnosed people who grew up socialized that stimming was a negative behavior. They then have to learn, for the sake of their mental health, how to let their bodies do what they were designed to do.
The autistic body exists in a world that was not necessarily made for it to thrive and grow, and stimming is one example of this. Behaviors such as hand flapping and rocking are known by most to be linked to autism, so engaging in these behaviors in public essentially announces the person’s autism to the world. Because of this, people who were socialized to hide their autism often find smaller and more discreet ways to stim such as wringing their hands or chewing on the inside of their cheek. These behaviors are more associated with anxiety, so doing them in public will not call out a person’s autism in the same way.
If you are autistic or know somebody who is and you are looking to begin to encourage healthy stimming behaviors, I would recommend getting or making a stimming starter kit. This could include any pre-made stimming products that peak your interest, or it could be handmade. Etsy and Amazon are good websites to start off with if you are unsure what stimming tools might be most useful. I primarily use the website Autastic because they are autistic owned and feature a large variety of chewables, which is one of my most preferred stimming methods.
As the autistic person explores stimming behaviors, they will likely gravitate to certain tools or methods more than others, and you can begin to tailor to them. It is important to note that you should never try to suppress stimming behaviors unless they are causing physical harm to the self or others. In these cases, there are other resources for replacing those behaviors with ones that are not harmful but still meet the sensory need.
Happy stimming!
Stimming: What is it and why is it important?
There are many different reasons why someone with autism would stim, another word for self-regulate. The most common of these is for sensory regulation and self-soothing. In a world that was not built for autistic people, we often find ourselves feeling overwhelmed or under stimulated, and stimming is able to fix either of those issues.
Anything and everything could be regulatory. Stims can be vocal, tactile, visual, vestibular (balance), auditory, or any other sensory need. Different people will prefer different stims more than others and, as with anything else with autism, it exists on a spectrum.
Vocal stimming includes echolalia, humming, clicking, or anything else that produces sound. It is the combination of tactile sensations in the mouth and auditory sensation in the ear that are soothing.
Tactile stimming includes pinching, moving parts of the body, rubbing soft textures, and anything else that produces a movement of the skin. These stims are the most common that I have seen, and this category includes the most variety.
Visual stimming includes watching specific videos, blinking, and watching moving water. Any other stims can add a visual element by doing it in front of the eyes.
Vestibular stimming includes spinning, jumping, and hanging upside down. This category is one of the most commonly used for diagnostic criteria as these behaviors usually have no other interpretation.
Auditory stimming includes vocal stims, replaying songs or sounds, and snapping. In my experience, many autistic people are very sensitive to auditory stimuli so this is not as common of a category. Behaviors that fall in this category usually also fall into another one simultaneously.
Fixation vs Special Interest
The terms fixation and special interest tend to be interchanged, especially among neurotypicals talking about autism. They are similar, but have fundamental differences.
A synonym for a fixation is to hyper-focus on something. I think that phrase is more self explanatory and easy to understand. To fixate on something is a relatively short term experience of intense focus on a specific task or item. This is usually marked by an extreme lack of awareness of the surrounding environment and extreme annoyance at any interruptions.
A special interest is similar to a fixation in the sense that it involves an intense focus, but it is more long term and has other specific characteristics. A special interest is something that the person will enjoy for a long period of time, often ignoring other interests. They may “info-dump” about this interest, which is when the individual talks very fast and excitedly about a topic and the listener struggles to “get a word in”.
I think the easiest way to understand these differences is through an example. A fixation on a movie series could look like someone watching the entire franchise in one sitting, ignoring their family and their environment and not taking any breaks. A special interest in that same movie could look like the person only ever talking about the movie and watching it every single night for months. As you can see, these experiences are related to each other, but are fundamentally different. A person can have one but not the other.
Identity vs Person First Language
I see a lot of people arguing for the use of “person with autism” instead of “autistic person” when referring to somebody on the spectrum. This tends to not be preferred by people who actually have the condition because we feel that being autistic is inseparable from our experiences as people. Additionally, there is the idea that neurotypicals (people who are not autistic) use person first language as a way of reminding themselves we are people instead of actually changing their perspective on the condition.
I like to compare this to the deaf and hard of hearing community, since I am also part of that. Nobody would tell a profoundly deaf person that they shouldn’t call themselves “deaf” and should instead say “person who is hard of hearing”. For one, it is a mouthful. Also, being profoundly deaf is such a unique experience that it is integral to the person’s identity.
This issue goes back to the idea of neurotypical people speaking for autistic people and ignoring our experiences. If autistic people are saying that they prefer this language, it should not still be a discussion amongst neurotypical people. The self advocacy project is about increasing the amount of content about autism from autistic people.
Basics: What is Autism?
Autism is the shortened version of Autism Spectrum Disorder. The disorder is a spectrum of several different traits that are separate from each other. These traits are: anxiety, motivation, impulsivity, sensory differences, attention, memory, flexibility in thinking, social use of language, social rules, and social confidence. Rather than autism being a range of more to less autistic, it is the combination of an individual’s placements on all these traits.
Autism is a developmental disability, which means it occurs before a baby is born. There is currently some research suggesting that there is a genetic tag that can be activated to cause the formation of an autistic brain, but whatever the case, autism is not something that can be developed after birth.
The traits of autism themselves are a spectrum, and even people who are not autistic will find themselves on the range somewhere. The trait of anxiety is self explanatory. The trait of motivation is the idea of executive function, or the ability to do something that one intends to do. The trait of impulsivity is also relatively self explanatory. The trait of sensory differences is the increased or decreased sensitivity to any of the five senses. The trait of attention is the ability to control and move one’s attention. The trait of flexibility in thinking is that black and white thinking that autism is known for. The trait of social use of language refers to the language abilities of the person and their verbal communication. The trait of social rules is the understanding and appropriate use of social obligations. The trait of social confidence is how shy the person is and how willing they are to initiate conversation and interaction.
We will be going into all of these traits individually in more detail later, but this is a kind of general overview. The idea that autism is a spectrum is not exactly wrong, but oftentimes people have a misunderstanding about what that spectrum looks like.