As a person trained in research, and a member of a neurodiverse family, I tend to place a critical eye on current ‘gold standard’ approaches to thinks like therapies. In recent years, I have seen a number of autistic adults speaking out against Applied Behavior Analysis (ABA) as a therapy. In looking critically at the research in this light, I am finding mounting evidence that Applied Behavior Analysis and related therapies such as Early Intensive Behavioral Intervention (EIBI) and Positive Behavioral Interventions and Supports (PBIS) are not the ‘evidence-based’ therapies that they claim to be. In fact, they may lead to harm. The evidence I see leads to five arguments questioning ABA:
The ‘evidence base’ is actually very weak. There are very few well-designed, rigorous and unbiased studies.
The effectiveness of the therapy has not been proven definitively. If you look at the few well-designed, rigorous and unbiased studies that do exist, they are inconclusive concerning the effects of ABA.
ABA uses a functional behavior assessment that is biased towards assuming that a behavior is related to a deliberate choice that a child is making and against the idea that the behavior may be a result of distress. This bias leads to the therapist operating from false assumptions.
There are no long-term psychological safety studies around the use of ABA, though recent studies have shown a correlation between ABA and the risks of Post-Traumatic Stress Disorder (PTSD) and suicide.
Ethicists are raising concerns about the ethics of ABA practices particularly in the areas of self-determination, consent, and harm.
This combined evidence brings me to the point of questioning whether it is appropriate for us to be offering and supporting ABA therapy in behaviorally-challenged children.
In the following sections, I will be covering the research in more detail. This article is somewhat academic as it is examining the research evidence. Also, within all quotes, all instances of emphasis were added by me.
Argument 1: The evidence base is weak
There is no rigorous, verifiable basis for the long-term effectiveness of ABA in experimental evidence — despite claims to the contrary. An evidence base emerges when a therapy is shown to be effective in well-designed, rigorous studies with objective metrics and a sufficiently large sample size of both autistic children and in a control group. Furthermore, the experiment needs to be repeatable — if later people try to do the same study with a different sample set the results of this new experiment should be in line with the results of the original experiment. Finally, the study should be forthright about any conflicts of interest that exist with respect to any author.
The meta-study here [1] is one of the few meta-studies that takes a close look across the broad range of autism-related research studies. They look specifically for good research practices like the use of randomized controlled trials (RCTs).
They state,
“We found that when study quality indicators were not taken into account, significant positive effects were found for behavioral, developmental, and NDBI intervention types. … [W]hen effect estimation was limited to RCT designs and to outcomes for which there was no risk of detection bias, no intervention types showed significant effects on any outcome. [1]
We note that this meta-study looked at several interventions in young children, including but not limited to behavioral interventions.
There is a second meta-study here [2], from Cochrane. This meta-study looks specifically at RCT and controlled trials related to EIBI in children between 30 and 43 months old. They found ‘no evidence at post-treatment that EIBI improves autism symptom severity’ and also ‘no evidence at post-treatment that EIBI improves problem behaviour’. They considered the evidence presented in the different ABA studies they looked at to be very low quality.
Argument 2: The best evidence brings into question the effectiveness of the therapy
In addition to the evidence mentioned above, there are others who have examined the outcomes in children who have received ABA. One of the more interesting set of reports are the analyses of the effectiveness of ABA therapy funded by TRICARE, the insurance agency associated with the US Department of Defense. They analyze annually the tens of thousands of health insurance cases related to ABA therapy for autistic individuals. In their 2020 report [3] the US Department of Defense basically stated that we have no baseline to understand how autistic children grow and develop without ABA, and thus we have no way to show that any observed improvements are actually a result of ABA. Doing nothing and waiting may be an equally effective strategy, we just cannot tell from the data.
While the change scores demonstrated small but statistically significant improvements after 12 and 18 months of rendered ABA services, and that most baseline severity scores and most ages demonstrated some percent change in scores from baseline, there was no comparison group (no treatment or another type or of treatment) to determine the attribution of these changes. It is also not clear if these changes are clinically significant. Subsequently, there is no way to know if the relatively small change observed here is the result of ABA services, other services received, or if this simply a result of maturation. However, the findings are clear that the number of hours of ABA services rendered did not improve symptoms of ASD based on the PAC scores. This finding strongly suggests that the small changes noted are not related to ABA services. [3]
The 2021 report [4] reaffirmed that there is no clarity over whether or not ABA leads to significant improvement. In fact, in an uncomfortably large percentage of the recipients of ABA, there was either no change or things got worse.
The findings from this analysis demonstrate that some beneficiaries have made some statistically significant improvements (57 percent), while other beneficiaries show no improvement or even worsening of symptoms (43 percent) over the two-year period. However, clinical significance is still unknown. [4]
Finally, this well-executed randomized controlled trial [5] looks at PBIS interventions for behaviorally-challenged adults, and comes to very disappointing results: ‘Staff training in PBS, as applied in this study, did not reduce challenging behaviour.’
Argument 3: Behavioral intervention is biased towards starting with bad assumptions
When a child starts ABA, their therapy is developed based on a Functional Behavior Assessment (FBA). The overall goal of looking for where a behavior comes from is embedded in the nature of the FBA. However, this benefit is overshadowed by the assumption that the antecedent to the behavior is rooted in the desire either to avoid something unpleasant, or to obtain something desirable (e.g., see here [6]). If this is as far as the analysis drills down to, then the resulting intervention does not attack the root of the problem. There may be a very good reason why the child is avoiding something, for instance, like the child is trying to avoid an abusive situation but is not in a strong enough psychological state to explain that. Or a child may want something because of an unmet need that the parent does not understand.
In other words, ABA operates on the assumption that the child’s behavior is a choice they are making deliberately, but downplays the possibility that the child’s behavior is emerging involuntarily from real distress.
ABA therapy becomes problematic when the therapist’s approach is based on false assumptions, and therefore does not address an autistic child’s behavioral problems at their roots. For example, this blog [7] concludes:
In many schools, PBIS is based on a flawed model that assumes challenging behavior is intentional when, often, a child is experiencing a stress response. [7]
The question then is, where is the stress response coming from? Possibilities include such things as lagging skills in emotional regulation and executive function, and sensory system related issues.
Lagging Skills
In this article [8], the authors examine the correlation between lagging skills and challenging behaviors in autistic children (youth with ASD) and no intellectual disabilities (ID). They write,
[O]ur findings suggest that children with lagging skills in emotion regulation and executive function are more likely to exhibit challenging behaviors. [8]
They also conclude:
Based on our preliminary findings, and assuming a causal relationship between the risk factors identified here and challenging behaviors, treatment for challenging behaviors in school-age youth with ASD without ID [intellectual disability] may need to specifically target the child’s emotion regulation and executive function difficulties. [8]
Targeting the development of these lagging skills looks beyond the behaviors, and thus is a very different approach than that taken by ABA. In fact, skills like executive function are better addressed by someone like an Occupational Therapist.
Sensory System
Another situation that may be underlying an autistic child’s behavior is related to their sensory system and the fact that it may be over- or under- reactive. We tend to drastically underestimate the sensory challenges of autistic children and write off their valid distress. This article [9] discusses the relationship of sensory over-responsivity (SOR) with stress and anxiety. They write:
The findings provide support for the theoretical model of this relationship in which SOR associated with autistic traits leads to stress and anxiety … Findings suggest a role for the introduction of sensory neutral environments within schools, workplaces, and other extreme sensory environments to reduce anxiety symptoms often associated with high autistic traits. … sensory problems can have serious and widespread negative effects on an individual’s life and wellbeing. [9]
We note that one of the go-to interventions for sensory over-responsivity in ABA is extinction (See, for example, here [6]), which is basically teaching the child to tolerate the overreaction. The student is to stay in the situation of sensory overwhelm and learn not to misbehave in that setting. However, this report suggests the opposite approach of modifying the environment for the comfort of the child is to be preferred.
Argument 4: Psychological studies bring into question the long-term safety of ABA
ABA has not been shown to be safe, long-term. Most studies seem to look forward at most 18 months or so. There is very little evidence from a long-term perspective. Recent studies however show a correlation between ABA and the long-term risks of risk of PTSD and suicide. In this research survey[10], the author concludes,
Nearly half (46 percent) of the ABA-exposed respondents met the diagnostic threshold for PTSD, and extreme levels of severity were recorded in 47 percent of the affected subgroup. Respondents of all ages who were exposed to ABA were 86 percent more likely to meet the PTSD criteria than respondents who were not exposed to ABA. Adults and children both had increased chances (41 and 130 percent, respectively) of meeting the PTSD criteria if they were exposed to ABA. [10]
While this published research was based on a survey approach, and was somewhat biased towards responses from females, this result is concerning.
A second safety red flag relates to the fact that one of the goals of ABA is to teach the autistic child to repress natural but ‘inappropriate’ behaviors and replace them with ones that are more ‘appropriate’. In other words, ABA effectively teaches masking/camouflaging, which is the ability to disguise or suppress specific autism traits or behaviors in social situations.
Unfortunately, there is increasing evidence that masking leads to poor mental health and suicide. For example, see this article [11].
Evidence for higher suicide rates in autistic people, and particularly among women, also is found here [12]. They conclude,
In this nationwide retrospective cohort study that included 6 559 266 persons aged 10 years or older living in Denmark during the period from 1995 to 2016, individuals with a diagnosed autism spectrum disorder had more than 3-fold higher rates of suicide attempt and suicide compared with all other persons after adjusting for sex, age, and time period. [12]
They also state,
Another important issue is the belief that autistic individuals should camouflage or mask their autistic traits to conform with societal expectations, for example by forcing themselves to make eye contact with others even when doing so is uncomfortable. … Quantitative and qualitative research studies show that such camouflaging is exhausting and is associated with poor mental health, including suicidal thoughts and behavior. This has important implications for many interventions, including social skills training and behavioral therapies that aim to normalize appearance and behavior at the risk of exacerbating a disconnect between the true self and performing self, potentially increasing anxiety and decreasing self-esteem. [12]
Argument 5: Ethicists are questioning whether ABA is ethical
The way ABA is practiced today, especially with children, is that the parent and therapist decide on what behavior goals to address, and how to address them. There is rarely any place for the child to consent to those goals, or to provide their feedback during the goal-setting process. ABA practitioners emphasize intensity, so the child is subjected to therapy without their consent for many hours a week. This removes both the child’s self-determination and their time to play and do things they enjoy.
This article [13], published in the Kennedy Institute of Ethics Journal, takes a close look at the practices and goals in Applied Behavior Analysis. The major ethical breech that they see is that ABA removes the autonomy of the autistic person being treated, from a misplaced desire to help them fit in. They state,
… we have argued that autistic children should not be treated with (the dominant species of) ABA, as such treatment essentially violates their autonomy, and at least contingently it does them direct harm and is unjust to one group of people. We have argued that the demand to help people does not make ABA obligatory, and so on balance it is to be avoided. [13]
The authors stress that ABA does not take into account the well-being of the autistic recipient of the therapy, but rather focuses on changing their behavior to conform to a more typical social structure. They also make the interesting ethical observation,
from a social perspective, we would do well to structure our society in such a way that people who see the world differently can fit in without having to either change who they are or act like someone they’re not. [13]
In other words, we should not force them to adapt to our way of thinking; rather, we should learn to understand and accept them, and take on some of that burden if adapting ourselves.
This article [14] addresses the ethical implications of intensive ABA therapy on non-speaking autistic people. The authors write,
Psychologists, like various other professionals, are charged with the responsibility to do no harm, and to “safeguard the welfare and rights of those with whom they interact professionally” (American Psychological Association, 2010, 2017). Considering their continued support, promotionand implementation of ABA treatment in the nonverbal population, how could one argue the negative effects of ABA are congruent with this oath? In sum, … it is evident that we need to pause and look at what has resulted. … Compliance, learned helplessness, food/reward-obsessed, magnified vulnerabilities to sexual and physical abuse, low self-esteem, decreased intrinsic motivation, robbed confidence, inhibited interpersonal skills, isolation, anxiety, suppressed autonomy, prompt dependency, adult reliance, etc., continue to be created in a marginalized population who are unable to defend themselves. [14]
These papers clearly show that the ethics of ABA, and its practice in light of the oath to ‘do no harm’, are being questioned actively among ethicists.
Conclusion
In this article, I have brought together the published research that questions the underlying research, the effectiveness, the assumptions made when defining a behavior plan, the long-term psychological safety and the ethics of Applied Behavior Analysis. This underlying evidence compels me to question the use of Applied Behavior Analysis as an ‘evidence-based’ intervention, and to be concerned that the harm it may be doing exceeds any benefit the child may get from receiving it.
In part 2 of this series, I will be discussing some of the things I have been learning about the mind and the nervous system — how we think and react — and how these learnings lead me to question the effectiveness of ABA as well.
References
[1] Sandbank M, Bottema-Beutel K, Crowley S, Cassidy M, Dunham K, Feldman JI, Crank J, Albarran SA, Raj S, Mahbub P, Woynaroski TG. Project AIM: Autism intervention meta-analysis for studies of young children. Psychol Bull. 2020 Jan;146(1):1–29. doi: 10.1037/bul0000215. Epub 2019 Nov 25. PMID: 31763860; PMCID: PMC8783568.
[2] Reichow B, Hume K, Barton EE, Boyd BA. Early intensive behavioral intervention (EIBI) for young children with autism spectrum disorders (ASD). Cochrane Database of Systematic Reviews 2018, Issue 5. Art. No.: CD009260. DOI: 10.1002/14651858.CD009260.pub3
[3] The Department of Defense Comprehensive Autism Care Demonstration Annual Report 2020: Reprot on Efforts Being Conducted by the Department of Defense on Applied Behavior Analysis Services.
[4] The Department of Defense Comprehensive Autism Care Demonstration Annual Report 2021: Reprot on Efforts Being Conducted by the Department of Defense on Applied Behavior Analysis Services.
[5] Hassiotis, A., Poppe, M., Strydom, A., Vickerstaff, V., Hall, I., Crabtree, J., . . . Crawford, M. (2018). Clinical outcomes of staff training in positive behaviour support to reduce challenging behaviour in adults with intellectual disability: Cluster randomised controlled trial. The British Journal of Psychiatry,212(3), 161–168. doi:10.1192/bjp.2017.34.
[6] J. Lantz. Interventions to Reduce Escape and Avoidant Behaviors in Individuals with Autism. Autism Spectrum News, January 1, 2009.
[8] Maddox BB, Cleary P, Kuschner ES, Miller JS, Armour AC, Guy L, Kenworthy L, Schultz RT, Yerys BE. Lagging skills contribute to challenging behaviors in children with autism spectrum disorder without intellectual disability. Autism. 2018 Nov;22(8):898–906. doi: 10.1177/1362361317712651. Epub 2017 Aug 26. PMID: 28844152; PMCID: PMC6113117.
[9] Amos, G.A., Byrne, G., Chouinard, P.A. et al. Autism Traits, Sensory Over-Responsivity, Anxiety, and Stress: A Test of Explanatory Models. J Autism Dev Disord49, 98–112 (2019). https://doi.org/10.1007/s10803-018-3695-6
[10] H. Kupferstein. Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis. Advances in Autism 4(3):00–00 (January 2018). DOI:10.1108/AIA-08–2017–0016.
[11] South M, Costa AP, McMorris C. Death by Suicide Among People With Autism: Beyond Zebrafish. JAMA Netw Open. 2021;4(1):e2034018. doi:10.1001/jamanetworkopen.2020.34018.
[12] Kõlves K, Fitzgerald C, Nordentoft M, Wood SJ, Erlangsen A. Assessment of Suicidal Behaviors Among Individuals With Autism Spectrum Disorder in Denmark. JAMA Netw Open. 2021;4(1):e2033565. doi:10.1001/jamanetworkopen.2020.33565
[13] Wilkenfeld, Daniel A. and Allison M. McCarthy. “Ethical Concerns with Applied Behavior Analysis for Autism Spectrum “Disorder”.” Kennedy Institute of Ethics Journal, vol. 30 no. 1, 2020, p. 31–69. Project MUSE, doi:10.1353/ken.2020.0000.
[14] Aileen Herlinda Sandoval-Norton, Gary Shkedy & Dalia Shkedy | Jacqueline Ann Rushby (Reviewing editor) (2019) How much compliance is too much compliance: Is long-term ABA therapy abuse?,Cogent Psychology, 6:1, DOI: 10.1080/23311908.2019.1641258.
Autistic burnout is a mental state that happens when an autistic person becomes unable to keep up with the real (or perceived) demands that they feel are being placed on them in order to fit into the expectations of the world they live in. Burnout often happens during transitions, such as when a young adult graduates high school and is moving towards a more independent lifestyle. It also happens when an autistic person has been in a situation such as a job that is not accommodating their needs, and where they have needed to do a lot of masking or camouflaging. It happens when the autistic person is experiencing big changes or losses. It happens when daily life is too much. These types of situation drastically increase the mental load placed on an autistic person’s brain. When a person’s brain no longer can keep up with the demands placed on it, they reach the point of autistic burnout.
As a non-autistic person, I have no personal experience with autistic burnout. Yet, when living life with my autistic friends I can see that it is a very real experience. For me, the best approach for understanding it is to go to the source – the autistic people themselves – and listen to and try to understand their experiences. I have several go-to autistic-led resources that I use in order to gain input and understanding of the autistic experience. Here, I summarize some of the best inputs I have from those resources.
What is autistic burnout?
What autistic burnout looks and feels like can vary widely among different autistic people. The common underlying presentation is an inability to regulate themselves and to function, because they are overwhelmed by the expectations being placed on them – despite a real desire to meet those expectations. The mind and body just shut down, there is no ability to function. Autistic burnout is a state of utter exhaustion. Since autistic burnout results from trying to push through challenges, it cannot be solved by trying to push through the burnout – it must be handled by stepping back, resting, and recharging.
In this video in the series Ask an Autistic, Amythest Schaber frames autistic burnout as something that happens when the autistic person has too much going on, and is not taking care of their sensory, social and other needs. She says, “It’s kind of like your brain is just exhausted and cannot go any further.” A person may feel like they are ‘becoming more autistic’ because they no longer have the mental energy to mask or camouflage to fit in and act in a way that can pass for being ‘normal’.
In this article, the Autistic Scholar (Patrick Dwyer) defines autistic burnout as, “… the consequence of accumulating stress and exhaustion from trying to constantly cope as an autistic person in an overwhelming, often hostile world. As autistic people, we are expected to camouflage our autistic features and appear more neurotypical; to pretend constantly, all the time, that you are someone you are not is exhausting. We are frequently subjected to sensory overloads and expected to push through them and continue functioning; to have to continuously cope with overwhelming sensory input is exhausting. Basically, autistic people have stressful lives, and coping with this stress is exhausting.”
This insightful article by The Autistic Advocate helps explain the inner experiences of a person going through autistic burnout. Kieran divides autistic burnout into two categories. Social burnout is when the sensory challenges and the need to mask during parts of your day – like school or work – take away all of your mental energy. In order to be ready for the next day, the result of social burnout is that you need to incorporate significant time to rest and recover into your daily rhythms.
Extreme autistic burnout is when the shutting down of your mind and body persists for weeks, months or years. This state looks similar to depression, but Kieran states that it is actually a different mental state than depression. He says of his own experience with extreme autistic burnout, “It was like a switch had gone off, my verbal ability to convey what was going on in my mind and body was gone. … I did not want to die, I’ve never wanted to die. … I needed to step out. … I needed to remove myself from the environment and take myself elsewhere; I needed to escape. …But the only way I knew how to do that was to die. So I tried.” Extreme autistic burnout develops over a long period of time, and consequently recovery from it also takes a long period of time.
Another good resource on autistic burnout is this interview with Dora Haymaker, an autistic person who researches autism. She defines autistic burnout as, “A state of pervasive exhaustion, loss of function, increase in autistic traits, and withdrawal from life that results from continuously expending more resources than one has coping with activities and environments ill-suited to one’s abilities and needs.”
How do I help someone avoid / recover from autistic burnout?
Autistic burnout comes from the crushing overwhelming mental load of trying to live your life, do what is necessary to support yourself, and exert your mind on trying to understand how to fit into a world which is largely incomprehensible to you. From my perspective, this means that the most helpful approaches to supporting an autistic person revolve around decreasing the mental load they need to exert to ‘fit in’, and increasing their ability to access the things that are necessary to recharge their mental energy.
Listen to them
The most important starting place for a non-autistic person to understand the autistic experience and autistic burnout is to listen to the stories of the autistic people around you. Autistic and non-autistic people experience the world very differently, but in the end we are all equal humans walking on the face of this earth. Be open-minded and ask open-ended questions. Additionally, please keep in mind that even within the family of autistic experienc”e, each autistic person has different experiences and needs, so you cannot extrapolate new understanding from a few examples. “Even autistic people with heavy burnout experience aren’t likely to assume other autistic people’s experiences of it are the same as their own“[1]. Whatever your understanding of burnout is, it is still helpful to ask a question like, ‘What does autistic burnout look like for you?’.
You can also read sources on the Internet. The ones I am citing here are ones I have found particularly helpful for this topic.
Listening takes effort – I have a hard time understanding autistic people, just as they have a hard time understanding me. However, when I can listen to their experiences and understand their sensory needs, their social needs, their needs to take time to rest and recharge, then I have a better sense of how I can work to mitigate the challenges of living in a world that is not set up for their neurotype.
Adapt to their sensory needs
Where possible, you can change the sensory environment to accommodate the needs of the autistic person. This includes both changing the overall environment and providing the ability for the person to take sensory breaks according to their specific needs.
Amythest also talks a lot about stimming and about different ways that an autistic person can regulate themselves and recharge their energy. A good way to support an autistic person in avoiding autistic burnout is by understanding what helps regulate them, and when they may be in a situation where they need to step out to take a sensory break. With that understanding, you have the information you need to support them in maintaining healthy rhythms to mitigate burnout.
Be careful of the expectations you are placing on them
If you are in a position where you find yourself placing expectations on an autistic person in any way (for example, behavior, social, or performance), re-evaluate those expectations. Note that you may be placing expectations on them subconsciously, based on your own notion of how people ‘ought to’ behave, or interact socially, or get things done. Clarify your expectations in your mind and drop all that are unnecessary, unclear or overly strict. For the rest, work with the person to determine a path through those expectations that works for both of you. Be prepared also that they will have expectations on you which also will need to be discussed.
One huge expectation that we often place on an autistic person is asking them to look like a non-autistic, or neurotypical, person. We expect an autistic person to do things like a neurotypical person does them. Looking neurotypical is exhausting and invalidating for the autistic person. As Judy Endow puts it, “Ultimately, for me, passing as ‘normal’ means that I am now a fake person, never able to be myself without putting my ability to make a living in jeopardy.”
Patrick Dwyer says, “Autistic people don’t deserve to be surrounded by people who blithely assume that we can do things exactly like a neurotypical person, and when we fail, then assume that we can’t succeed at all. We deserve to be surrounded by people who understand our differences and allow us to follow our own paths, but who will still believe that we can succeed and thrive.” In other words, when we expect an autistic person to do things in the way a neurotypical person does them, we rob them of the energy required to be successful and do well in ways that are more natural to them.
Note also that, while non-autistic people often ask autistic people to do things like a neurotypical person does them, we non-autistic people also do not pause to ask ourselves how we can do things more like an autistic person. The pressure to adapt is one-sided.
Help them belong as opposed to making them ‘fit in’
Supporting an autistic person means fully accepting them for who they are. It means listening to the stories they tell, and believing that their experiences are valid, even when you are having a hard time understanding them. Their experiences are important, even if you do not understand them. They want to feel like they belong, not that they need to try to ’fit in’.
Dora Raymaker says, “being accepted for who you are as an autistic person and supported by others, being able to act autistic and do things that fuel you (like engage in special interests), taking time off, and having a reduction in expectations to do things in the same way as non-autistic people are some of the primary things that help.”
As Dora alludes to, one way to communicate to an autistic person that they belong is to listen to the things that they are passionate about – their special interests. Sharing special interests with each other is one way that autistic people bond emotionally with each other.
Keep an eye out for autistic burnout indicators
There are common features you can look for when trying to understand when an autistic person is struggling and possibly headed for autistic burnout. Kieran, in his article, has a list of warning signs to look for. This complete list is worth looking at, but I will not repeat it in its entirety here. The list does include things like,
increases in lethargy, irritability and anxiety,
increased sensory sensitivity,
increased difficulty hearing, producing language, and communicating,
brain fog, forgetfulness, decreased executive function, slower thought processes,
extreme overwhelm,
massive increase in guilt.
Often, when we see these things, we are inclined to ask the person push through their challenges. However, the better response is to support them in pulling back.
In Conclusion …
If you know someone who is autistic, please listen to their story. Ask them how you can support them. Give them the space and time they need to unmask and be themselves – whether supporting them in unmasking while you are with them or being considerate when they need time by themselves. Operate under the correct assumption that they are better experts on their needs than you are — do not fall into the common pitfall that you actually have better ways to support them.
If you are managing a person who is autistic, listen to their needs — especially with respect to workload, sensory needs and social requirements. Again, they are best at understanding how to manage their workday to be the most productive while minimizing mental overwhelm leading to autistic burnout.
I cannot emphasize this enough – listen to the autistic people around you. When you want to know more, find first-hand accounts from autistic people on the web, in books, in articles. Autistic people are the experts in living the autistic life well.
As I have interacted with increasing numbers of autistic people, much of what I have learned has taken me a bit by surprise. Yet, the effects of my heeding these lessons and working counter to my erroneous instincts in my relationships with my autistic friends, family members and coworkers have been amazing.
Five key issues that have radically changed how I think about and approach my relationships with autistic people are understanding that:
Empathy struggles go both ways.
Sensory differences can lead to trauma.
Failure to comply to a request does not equate to being oppositional.
Honoring their ‘no’ is critical.
Inability to speak does not imply low intelligence.
This article is a reflection of my own journey, and my own learnings and perceptions, based on my understanding gleaned from input and reading from autistic and neurotypical people alike. As with all such things, I am a work in progress in this area. Throughout this article are links to useful clarifying articles from research, from the perspective of educators and therapists, and most importantly, from autistic people themselves. These links can be used to inform your own learning, direct from the source.
Empathy struggles go both ways.
In his original paper on the double empathy problem, Damian Milton proposes that the difficulties in understanding and communication between neurotypical people and autistic people go both ways. Basically, the greater the mismatch two people have in culture, communication style, way of thinking, etc – the more likely there will be miscommunication and misunderstanding between them. This difficulty is mutual and goes both ways.
What this means for me is that I change my mindset about what to do when I am getting frustrated due to communication struggles with someone. If I think that a person is struggling to understand me and what I am communicating, it is very likely that I am not understanding them and what they are communicating also. I can proceed with the notion that they are likely getting just as frustrated as I am. Rather than feeding my frustration, I choose to start to do things like asking open ended question to try to figure out where the communication mismatch lies.
Sensory differences can lead to trauma.
Autistic people frequently have sensory differences. These sensory differences include not only the five senses we normally think of (vision, hearing, touch, taste, smell), but also vestibular (balance), proprioception (awareness of the position and movement of your body) and interoception (sensing what is going on inside your body). These senses are described in more detail in this article. Judy Endow gives a good explanation of sensory differences from the perspective of an autistic person.
What this tells me is that autistic people sense the world differently from me. What is pleasing to me may be torment to them. Sensory differences are not something to brush off or ignore, especially given that one way these differences manifest is hypersensitivity to sensory input. Hypersensitivity makes sensory overload more likely. Many common experiences are very difficult for people who tend to experience sensory overload. A recent survey of autistic people noted that sensory challenge and overload are most problematic in such everyday places as supermarkets, restaurants, main streets, public transport and doctor’s offices.
Sensory overload itself can cause trauma, especially in situations where the person is exposed to the same kind of sensory overload repeatedly. Terra Vance describes sensory trauma in this NeuroClastic article. Therefore, expecting an autistic person who struggles in this area to learn to cope quietly with a sensory barrage does them significant harm in the long-term. Another thing to consider here is that many autistic people experience a lot of trauma and trauma also affects your sensory system, so there is a bad feedback loop that can develop.
What this means for me is that I pay close attention to the autistic people I am with and the environment that we are in. I do well when I try to understand a person’s sensory issues and adapt the environment and my expectations to minimize their sensory stressors. I may meet them on a quieter street, or in an outdoor cafe instead of on a main street in a busy restaurant. I try to understand the differences in body language and what are their signals for when they are indicating discomfort. When they indicate that they want to move to get away from a bad sensory situation I listen and do my best to work with their request.
Failure to comply to a request does not equate to being oppositional.
When I ask someone to do something and they don’t do what I asked, it is tempting to jump to the conclusion that they are being oppositional. However, this is not always the case.
With some people, phrasing something as a demand can cause a spike in anxiety (or even a panic attack) that prevents the person from being able to fulfill the demand. This happens even when they make a demand on themselves, like make themselves a checklist of things they need to do. This is called Pathological Demand Avoidance, or PDA. PDA was described originally in this article. In the PDA information sheet, people with PDA describe their experience as “a neurological tug of war between brain, heart and body”.
When a person is showing signs of anxiety when I need them to do something, there are a few strategies that I lean on. One strategy that is useful when I have a bit of flexibility is to use declarative language. That is, I will state the thing that needs to be done and leave them the opportunity to volunteer to do it. A second, related strategy is to move towards a more collaborative approach to the planning process, where they are participating and have more control. This strategy requires starting the whole process a bit earlier to leave room for the collaboration, but also tends to produce plans that are more useful in the long run.
Another situation that looks like failure to comply to a request happens when a person struggles with executive function, as described in this article. The person does not comply with the request because they are lacking the skills and emotional energy to plan and execute the requested task. Executive function includes the ability to make a plan, start doing the plan, remember all the steps in the plan, and continue executing the plan until the task is complete. Executive functioning challenges are more of a lagging skill problem. When a person has weak executive function, they are challenged with one or more of the tasks of planning, organization, remembering key pieces of information, and shifting between tasks easily. When a person is anxious or under stress, their executive functioning capabilities may decline. Cynthia Kim does a deep dive into autism, executive function, and her strategies to manage it in this series of blog posts.
One important thing I keep in mind when I interact with someone who is both a very literal thinker and also a person who has weaker executive functioning skills is to keep any directions I give them very concrete and unambiguous. Also, slower and more durable methods of communication help, such as emailing requests and directions, writing things down, or managing tasks on a Kanban board tend to work better. It helps to provide more concrete deadlines as to when the request needs to be completed. Often, people with executive function issues also are not particularly good at asking for help or clarification, so taking the extra time to check in, see whether they need anything, and check that they are clear on the next steps can facilitate their completing the task satisfactorily.
Honoring their ‘no’ is critical.
When a person is constantly told that their instincts are bad and they need to look to other authorities for how to behave, they do not have the opportunity to learn when and how to say ‘no’. Even the most communication-challenged autistic people can clearly indicate ‘no’ and ‘enough’ in some way, and it is important for us to listen and respond appropriately.
Many of the autism therapies recommended today are centered around the notion of compliance. These therapies include ones that focus on behavioral change, such as Applied Behavior Analysis. Behavioral therapies operate on the principle that if you change a person’s behavior, you can effect deeper changes in how their mind works. While these therapies may improve surface behavior in some circumstances, they also teach the person that their mind does not work correctly and they need to look to others to understand what is ‘correct’ behavior in a situation.
In light of the previous three points in this article, what does it mean for someone to evaluate someone else’s behavior and then proceed under the assumption that their evaluation is correct? Is this approach effective?
First, when an autistic person says ‘no’, I may have very little empathy or understanding of what is bringing them to that point, due to the double empathy problem. I may be unaware of sensory issues or other traumatizing factors, both because I do not experience the sensory environment in the same way and because their lack of interoception may mean they are unable to describe the pain the sensory environment is causing them. The reason a child may not be following directions may be related to anxiety or lagging skills, neither of which is something they can control easily (even if they thought what I was asking was reasonable).
Behavioral therapies center around compliance to some behavior goals that are usually not set with the consent of the person who is the subject of the therapy. That is, behavioral goals are usually set by parents, school personnel, and/or therapists. The autistic person, often a child, is not given the opportunity to provide input. Yet, from double empathy, we see that the parents often do not understand the concerns of the child, the function the behavior has in their lives, and/or the underlying frustrations that the child may be experiencing because they can’t comply. At the same time, the autistic person may not understand the function of the behavior being taught or the concerns of the parents or therapists that are leading them to try to adjust their behavior. It is only when both sides understand each other that it is really possible to define a goal that addresses the root of the ‘challenging behavior’, and if so, whether a particular approach has any chance of working in any durable or generalizable sense. That is, the often-missing input from the person receiving the therapy actually is key to evaluating the likelihood of its success.
A second reason we need to honor their ‘no’ has to do with the dangers of reinforcing a fawning response in an unsafe situation. When an autistic person appears calm and compliant, there is a very likely possibility that their decision to comply and squash their natural emotions seems from a psychological perspective like the safest thing for them to do at the moment. Their fear of imposed consequences is stronger than their natural desire for self-protection. That is, compliance often comes from a natural fawning response to fear and anxiety. This Medium article looks at fawning from the perspective of the person who has internalized a fawning behavior. Neurodivergent Teacher has a good article on how to tell actual calm from fawning compliance in this Facebook post.
If we do not listen, the consequence is that they learn to disregard their inner voice that says that they are in a dangerous situation. This happens because parents, therapists, friends and coworkers do not recognize that things that appear safe and normal to them may actually be unsafe and traumatizing to an autistic person. Insisting that a person should invalidate their own perception of safety because it is flawed or incorrect sets them up for grooming and abuse in their adult life. OldLady with Autism gives a much deeper and more accurate description of this in her blog.
One key takeaway I have from this is for me to operate under the assumption that each person has their own areas of comfort and discomfort, of safety and danger. Trying to force a ‘solution’ on someone that makes sense to me but seems unsafe to them is both useless and counterproductive. When I am trying to navigate a challenging situation with them, the solution needs to take everyone’s concerns to heart. A solution works best when everyone agrees to it, everyone thinks the solution will be effective, and everyone thinks the approach is feasible.
A second takeaway comes from the fact that I am by nature a person who offers hugs and touch for comfort, but I have learned to ask first. When a person says no, I honor that no. When a person indicates that they want to leave a conversation, I exit the conversation, even if I think I have more to say. More generally, I give the other person in a conversation a lot more leeway to control the flow of the conversation and our interaction than I did previously. This is a work in progress, however. Old habits die hard.
Inability to speak does not imply low intelligence.
Last but not least, I have developed a great respect for the non-speakers in our midst. Our natural thinking leads us to the mistaken conclusion that a nonspeaking person is not intelligent. This misconception is reinforced if the person does things like shout randomly or say seemingly irrelevant words over and over. Yet, these kinds of behaviors are associated not with low intelligence, but with apraxia (not being able to execute purposeful motor movements) and motor disinhibition (uncontrolled movements). Intelligence tests that take being able to speak into account demonstrate that people with apraxia have roughly the same intelligence distribution of those who speak. The problem is not in their innate ability to think and reason but in the disconnect between their brain and their body, as described for instance in this Spectrum article. Recent studies have shown that methods such as Facilitated Communication and Rapid Prompting Method enable communication and unlock their ability to express what they think.
Over the last several years, I have been fascinated with the writings of nonspeaking autistic people. Last year, I wrote a Medium article on the things I had learned from reading their writings. I encourage anyone, especially those who interact with nonspeaking adults or children, to read their writing – I have found it eye-opening.
One key lesson I have learned with respect to the non-speakers around me is to presume competence, my gut reactions notwithstanding. When I am interacting with a nonspeaking person, I assume that they fully understand what I am saying. I assume that they are working on responding intelligently, even when their efforts do not succeed. I also have been working on actual understanding. As I said earlier, most nonspeaking people I have met have been pretty good at conveying things like ‘no’ and ‘enough’ – sometimes very cleverly. Communication for them takes so much work and creativity that I see it as very important that I try to put forward my best efforts to try to understand what they are trying to communicate.
This lesson specifically applies when I interact with people who use AAC (Augmentative and Alternative Communication). AAC communication is slower but it greatly expands the non speaker’s ability to communicate effectively. Taking time to listen at a slower pace is valuable and educational. To have a conversation, though, I also need to slow down to their communication speed. Sometimes it helps for me to communicate using a slower method as well, such as email or online chat. When I use a slower method to communicate, I am not as tempted to interrupt, talk over them, or try to finish their sentences.
A second takeaway I have is that I think of how frustrating it must be to be a non-speaker. Imagine being in a position where you have so much to say, where you can explain something that may make things so much easier, when you see solutions to problems clearly in your head – yet you are unable to communicate them. Imagine being treated as stupid and incompetent when your mind is functioning quite well, and understands clearly what it means to be treated in a demeaning way due to presumed incompetence. Imagine being abused and being unable to communicate that to anyone. I cannot really imagine this, but it seems like such a hard place to be. I do well when I work to help with communication, find those points of connection, and just be there with them in their journey.
Wrapping Up …
Each one of the insights I have mentioned here have changed the way that I see and interact with the autistic people around me in one or more significant ways. None of these things I learned were intuitive or obvious to me at the time, though they are clear in hindsight. The net effect has been that the autistic people, for the most part, tell me that they see me as being more supportive, more connecting, and more empathetic. I see us more now as all being humans on this earth, each of us having our own strengths and challenges. And as Chris Bonnello taught me, things go much better when we all can play to our strengths.
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