Buzz
Applied Behavioral Analysis (ABA) is a highly debated topic within autism communities. Some individuals report that they or their children have experienced abuse, while others argue that the method is highly effective. Naturally, you always want the best for your loved ones, but how can you distinguish between promising outcomes and tragic results? Pay close attention, and you may spot the signs. This article is written for the relatives of autistic children, but teenagers and adults with autism can also benefit.
Note: This article covers topics such as compliance therapy and abuse, which may be distressing, especially for those with Post Traumatic Stress Disorder (PTSD) caused by such therapies. If you feel uncomfortable with these topics or find the content disturbing at any point, we recommend discontinuing your reading.
Steps
Examine the Goals of ABA Therapy
The goals of this therapy focus on helping your loved one learn skills, live happily, and feel comfortable. Suppressing symptoms is not the objective.
Consider whether the goals here revolve around adaptation and assimilation. The United Nations has declared that children with disabilities have the right to preserve their identities, meaning they can be themselves, even if they exhibit autistic traits. A good therapist will allow a child to appear different, and the therapy should not focus on eliminating unique characteristics such as:
- Most self-stimulatory behaviors (You might hear phrases like "quiet hands" and "hands on the table" referring to the suppression of self-stimulatory behaviors.)
- Toe-walking
- Avoiding eye contact
- Not wanting many friends
- Other tics (voluntary tics, not forced by others)
Evaluate whether the therapist is manipulating the emotions of the autistic child. Some therapists train autistic individuals to display facial expressions or body language that appear happy, regardless of their true feelings.
- No one should be forced to smile or appear happy if they don’t feel that way.
- Autistic individuals should not be forced or trained to hug or kiss, even if it might hurt someone’s feelings. The right to set boundaries is crucial in protecting autistic children from sexual abuse and emotional harm.
Observe whether the therapist is working against or adapting to the autistic mind. A poor therapist might futilely try to make an autistic child appear non-autistic; a good therapist will work with the child to help them become a happy and capable autistic adult. Therapists should focus on helping autistic individuals thrive, not on making them non-autistic. Good therapy goals might include:
- Finding enjoyable and harmless self-stimulatory behaviors instead of suppressing all such behaviors
- Developing adaptations and reducing sensory issues
- Learning social skills in a supportive environment, including assertiveness and friendship-building
- Discussing and addressing the personal goals of the autistic individual
Assess whether communication is taught as a necessary skill or as a performance to please adults. Communication ability should be prioritized over speech (including behavioral and augmentative and alternative communication). Early vocabulary should focus on basic needs rather than parental feelings.
- Words like "yes," "no," "stop," "hungry," and "pain" are more essential than "I love you" or "Mommy."
- Behaviors should be respected, even for those learning to communicate through augmentative and alternative methods or verbal communication.
Observe Therapy Sessions
A compassionate therapist will treat an autistic child well, no matter what happens. No one is too autistic or has "too little ability" to deserve kindness and respect.
Consider whether the therapist is empowering the autistic child. A good therapist always believes that autistic children are capable of listening (even if they don’t respond) and assumes that the child is doing their best.
- Non-speaking or minimally verbal autistic children may have better thinking abilities than communication skills. In autistic individuals, the body doesn’t always follow their intentions, so they might not be able to accurately point to what they want.
- Therapists should focus on understanding the reasons behind a child’s actions and never dismiss any behavior as meaningless or ignore attempts at communication.
- Schoolwork designed for a four-year-old is inappropriate for a sixteen-year-old.
Evaluate whether the therapy is a collaborative effort or if the therapist is working against the autistic child. Mutual agreement is essential. A skilled therapist will strive to work with the autistic child, meeting them at their level with respect. Therapy should not feel like a battle, and the autistic child should not have to endure the process.
- Consider whether the therapy can be described as cooperative or submissive.
- Autistic children should have the right to express their concerns, opinions, and goals. They need to contribute to their treatment plan.
- Therapists must respect when a child says "no." If an autistic child’s "no" is ignored, they may learn that their words hold no meaning.
- Seek out therapies that are enjoyable for the child. Many effective therapies will feel like structured playtime.
Carefully consider how boundaries are handled. Autistic children have the right to say "no" and be heard by their therapist. Therapists should not pressure, coerce, or threaten to take away privileges or belongings if the child feels uncomfortable.
- Autistic children must be respected when they say "no" or express discomfort (verbally or non-verbally).
- Bullying and sexual abuse are disproportionately high among autistic children (and adults). Assertiveness training should be included in the therapy program.
Examine the use of reinforcement methods. While reinforcement can be effective, it can also be misused or become abusive. A poor therapist might ask you to withhold a child’s favorite items at home to ensure compliance during therapy. Be cautious if the therapist uses or restricts:
- Food
- Access to favorite items, such as a stuffed animal
- Negative reinforcement, also known as physical punishment (e.g., slapping, spraying vinegar in the mouth, forcing ammonia inhalation, electric shocks)
- Breathing
- Excessive reliance on external rewards; autistic individuals may lose intrinsic motivation if their lives revolve around earning tokens or items.
Consider whether autistic children are allowed to take breaks to regain composure or engage in self-stimulatory behaviors. A poor approach involves forcing autistic children to continue long after they need a break, sometimes using this as a tactic to break their will and enforce compliance. A better method allows the child to rest as needed.
- A 40-hour weekly therapy schedule is akin to a full-time job. This can be exhausting, especially for younger children.
- A skilled therapist will encourage autistic children to communicate their need for a break and allow them to rest whenever necessary or when the therapist deems it appropriate.
Assess whether the child feels safe during therapy. Effective therapy should make autistic individuals feel comfortable and secure. Therapy is not beneficial if it involves screaming, crying, or power struggles.
- There will inevitably be bad days when a child might cry during therapy. If this happens, consider the therapist's role in causing the distress and how they respond to it.
Reflect on whether the therapist cares about the emotional state of the autistic child. Therapies like ABA focus on the Antecedent-Behavior-Consequence model. While beneficial, it can be harmful if internal experiences, such as emotions and stress, are overlooked. A good therapist empathizes with the autistic child and strives to see the world from their perspective.
- A good therapist will be cautious, not push too hard, and allow the child to rest if needed.
- A poor therapist will not stop, even if they are causing distress to the autistic child, and may even push harder.
Notice how the therapist reacts if the child cries or becomes upset. A good therapist will immediately soften their approach and show concern (or remorse) for the situation. A poor therapist might push harder, restrain the child, or attempt to 'break' them, turning the session into a confrontation.
- A good therapist will be honest about what happened and take steps to prevent it from recurring. They care about the child's emotional pain.
- Some less skilled therapists label these situations as 'tantrums' and insist on handling such behaviors more aggressively.
- Treatment involving excessive tears and frustration over weeks, months, or years can turn a gentle child into an aggressive one.
Observe physical interventions. Some therapists use force to make autistic children comply if they do not do as instructed. Watch for actions like:
- Punishment
- Grabbing and dragging autistic children against their will (including actions like pulling their hands onto their body)
- Restraining children with force (slamming hands on a table, pinning them to the floor instead of calming them down)
- Locking children in rooms (e.g., 'calm-down rooms' or chairs with straps to restrain them)
Be cautious if the child shows signs of deterioration or fear. Harmful therapy methods can place immense pressure on autistic children, leading to exhaustion or symptoms of abuse. The child might act "like a different person" during therapy or around those involved in the treatment, sometimes consistently. Watch for...
- Increased meltdowns
- Heightened anxiety; reduced trust in adults
- Loss of previously acquired skills
- Extreme behaviors: demanding, aggressive, overly compliant, withdrawn, or indifferent
- Suicidal thoughts
- Growing distress before, during, or after therapy sessions
- Violence, if it was never an issue before
- Other changes in mood, skills, or behavior
- While the cause of these issues may not always be the therapy, if the therapist dismisses concerns and/or the child seems particularly anxious about therapy or the therapist, it’s a red flag.
Consider whether you would accept such treatment for a non-autistic person. No one is "too incapable" to deserve kindness. Imagine a non-autistic child being treated this way. Pause and visualize this scenario. Does it make you uncomfortable?
- Would you feel concerned or intervene if a non-autistic loved one or friend were treated this way?
- Imagine yourself at the age of the autistic child. Would you feel degraded if subjected to such treatment?
- If you saw parents treating a non-autistic child this way, would you call child protective services?
Evaluate your relationship with the therapist
This section applies if you interact with the therapist.
Be wary of deceptive promises. A poor therapist may not be honest with you, manipulate you, or make promises they can’t keep. They might show indifference, blame you, or blame the autistic child if things don’t go as planned. Pay attention to the following:
- Autism is a lifelong condition. No one can be "cured" of autism.
- Autistic individuals are highly diverse. A one-size-fits-all treatment may not meet the unique needs of the child.
- There are other effective therapies available. If a therapist claims their method is the "chemotherapy for autism" or dismisses all other therapies as invalid, they are being dishonest.
- ABA may excel at teaching certain tasks. Skills like dressing or tapping someone’s shoulder to get attention can be useful. However, being data-driven, it may not effectively teach speech or skills involving brain-body disconnection (e.g., pointing to the correct card).
- Autistic individuals have real emotions. If an autistic child appears scared or in pain, they are likely experiencing it genuinely.
- Autism and happiness are not mutually exclusive. Autistic children can still lead happy lives.
Pay attention to how the therapist talks about autism and autistic children. Even if your child is nonverbal or appears unresponsive, they can still understand the therapist's words and attitude. Negative attitudes can harm the self-esteem of autistic children and may indicate that the therapist is mistreating them.
- Referring to autism as a tragedy, a terrible burden, a life-destroying monster, etc.
- Calling autistic children "manipulative" or blaming them for every issue that arises.
- Encouraging harsh punishments for the child.
Consider whether the therapist allows you to observe therapy sessions. If the therapist is harming the autistic child (mentally or physically), they may be trying to hide it from you.
- The therapist might claim that your presence would be distracting or interfere with the therapy process. This is a major red flag.
- If you’re not allowed to watch the sessions and only hear the therapist’s accounts, be aware that they might be distorting the truth or using biased interpretations to explain negative incidents.
Ask if the therapist listens to your concerns. As a parent, caregiver, or relative of an autistic child, your instincts matter. You can often sense when something is wrong with the child. A good therapist will listen and take your concerns seriously, while a poor one may act defensively, dismiss, or suppress your worries.
- A bad therapist might tell you not to trust your own judgment. This is a significant warning sign. They may be experts, but that doesn’t mean your thoughts are invalid.
- If there’s prolonged disagreement, a poor therapist might rally others against you.
Trust your instincts. If you feel uneasy or sense that something is wrong, take that feeling seriously. If things don’t seem right, don’t hesitate to walk away. There are many other therapists who practice ABA and other therapies. Your child’s well-being should always come first.
Advice
- Just because a certain therapy works for some individuals doesn't guarantee its effectiveness for everyone. Deciding to withdraw your autistic child from ABA therapy doesn't make you a bad parent or caregiver. Your concerns and choices are valid and well-founded.
- Autistic individuals, especially those with communication challenges or conditions like anxiety or depression, may cry frequently. Therefore, crying during therapy isn't necessarily a red flag. Instead, observe whether the child cries more than usual and try to understand the underlying reasons. (Note that discussing emotions and personal issues can sometimes lead to tears, which might occur as part of the therapeutic process).
- Many autistic adults have undergone ABA therapy with varying outcomes—some positive, some negative. Their firsthand experiences can provide valuable insights into what works and what doesn't.
- Unethical practitioners may appear kind and professional. Don't blame yourself for not recognizing their true nature immediately.
