(Inside: When we think of harmful autism therapies, we may think about ABA, but there are a lot of autism therapy red flags to watch for no matter what type of therapy your autistic child is getting.)
In our Facebook community, Embracing Autism, we have a rule that the moderators will delete any posts or comments that suggest or promote ABA therapy.
ABA therapy is incredibly harmful to autistics, and to keep our community safe we decided to make the group collectively anti-ABA.
(read more about the big deal with ABA therapy here)
But one of my good friends who’s also one of the community moderators brought up a really good point.
We tend to focus on ABA, but even non-ABA therapies have the potential to become harmful quickly if parents don’t know what to look for!
So she put together an incredible list of autism therapy red flags that all parents need to know and watch out for, and she was kind enough to let me post them here on the blog!
I’m going to hand over the reins — er keyboard? — and let the fabulous Karen Trinkaus take it from here!
(Image description: Young boy and older therapist sit together at a table working with letter magnets with other therapy tools on the table. At the bottom, coral and teal text reads: “Autism Therapy Red Flags All Parents Should Know” on a white background. White Autistic Mama infinity logo in the top right corner of the image.)
Autism Therapy Red Flags All Parents Need to Know
When it comes to harmful therapy, most people tend to focus on ABA.
But I feel this glosses over the issue of what actually makes a therapy beneficial vs damaging. I have seen plenty of harmful therapy performed in other environments as well.
The following is a list of red flags that should be avoided.
A lot of it applies to ABA, but I want to stress that these red flags apply to other therapies, as well as school.
1. Observation is Not Allowed
If you’re not allowed in the room, there’s usually a reason.
You may be told this is because you are a distraction and that if you’re in the room the child will seek you out for assistance.
If your child is uncomfortable there is a reason, and it is not because they are “lazy” and “just don’t want to do the work.”
2. Indefinite Therapy
The goal of therapy should be to get the child to the point where they no longer need therapy.
Therapy should be provided to help with specific tasks or struggles.
For instance, OT should be helping you design a sensory diet to meet the child’s needs at home.
3. Extreme Hours
Your child does not need to be doing 40 hours a week of therapy.
This tends to compound when multiple therapies are added on top of one another and school.
Children learn through play.
And even if your child’s therapy is play-based, that is not the same as unstructured play.
Your child needs a significant amount of unstructured play time, especially if they are under the age of six.
4. No Stimming Allowed
Stimming is important.
It’s how autistics self-regulate, express joy, and interact with their world.
Any therapy that seeks to reduce stimming does not understand autistic needs.
The only caveat is that if the stim is self-injurious, a therapist might help a child transition to a less hurtful stim.
They can also work on teaching the child additional coping mechanisms so that the stress doesn’t reach a point where the child feels the need to self-injure.
But discouraging stims because they’re seen as weird, annoying, etc. even when they aren’t harmful? Major red flag!
5. Requires Eye Contact
Eye contact can be very distressing to autistics. I like to compare it to staring into the sun.
It can be painful, and it will make the child pay attention LESS.
This is one of those things that is casually required all the time in educational environments (not just ABA therapy), and it warrants a discussion with the teacher or therapist.
6. Excessive Reliance on Token Systems and Edibles
I get it, token systems can make things easier.
Who hasn’t tried a sticker chart or candy rewards for potty training?
But several studies have shown that reward systems like this can decrease intrinsic motivation.
Natural reinforcers are a much better option.
What is a natural reinforcer?
Let’s say you were trying to learn how to ride a bike. You succeed. The reinforcer is that you can ride a bike now. It’s a natural reward for your efforts.
Praise is also good, but it needs to be both specific and genuine to be effective.
7. Rigid Approach or Refusing to Make Basic Accommodations
There are a few stories that have gone viral, where a hair stylist has laid down on the floor to cut an autistic child’s hair. That’s an accommodation.
The stylist is stepping out of their own comfort zone of how things are typically done and working with the client to best fulfill their needs.
Some therapists are used to working a certain way and if the child is not responding to their methods the therapist will get upset.
Therapists need to be flexible. They need to tailor their approach to the individual child.
8. Focus on Outward Behaviors, Rather than Functional Skills
Much of this is fueled by parents who just want their kid to be “normal.”
They enlist therapists who will teach their child to say “mama” or “I love you” instead of working on how to hold a spoon or communicate needs.
While such platitudes are nice to hear, they are taught for the benefit of the parent, not the child.
Your child probably already loves you and simply expresses their affection in a less conventional way.
Therapy should help the child build autonomy.
It should help them develop the practical skills they need for day to day life, like washing hands, knowing their name and address, requesting items, and being able to tell you if they feel sick or hurt, and where.
Ask yourself why your child needs therapy.
What skills do they need help with? If it’s only speech and social skills, you may need to look deeper into why you feel your child needs therapy.
9. Expecting Kids to Perform on Command, Regardless of How Difficult Something is or Where the Child is at Emotionally
I have seen well-meaning therapists press on despite the obvious signals that a child is stressed and shutting down.
This is especially true if your child is also dealing with something like anxiety or Sensory Processing Disorder.
If your child’s underlying needs are not being met, if they feel anxious or dysregulated, they will be unable to learn.
10. Moving too Fast or Not Breaking Down Tasks into Manageable Pieces
Baby steps. Baby steps. Baby steps.
Especially if a behavior is rooted in anxiety, tossing a child into an environment that is extremely stressful is not an answer.
The underlying anxiety needs to be dealt with first, and the child needs to approach things slowly, in such a way that they have the option to retreat if they get overwhelmed.
11. Learned Skills Don’t Transfer
This happens if the child is made to learn in a clinical setting, rather than a natural one.
As much as possible, therapies should involve doing the skill in a real-world environment.
12. Focus on Compliance
Again, the goal of therapy should be to help the child build autonomy and skills.
Teachers/therapists who focus on compliance usually don’t care if the child is learning so long as they “act appropriately.”
Being able to sit still and not fidget is not the same thing as learning.
13. Focus on Verbal Communication
If your child is nonverbal, they should be encouraging the use of other systems like sign language, Picture Exchange Communication System (PECS), orAugmentative and Alternative Communication (AAC).
Communication reduces behavior issues prompted by the frustrations of being unable to express oneself and builds autonomy, so the focus should be on communication, not necessarily speech.
14. Punishment of Any Kind
Restraint and seclusion rooms can be thrown in here as well. They are still legal in most states.
Check to see if your school uses tactics like these.
Punishment is not only ineffective for changing behavior, but it can also escalate it.
15. Presumes Incompetence
There is a difference between tailoring a program to a child’s skill set and presuming that they are incompetent.
Always presume competence.
Presume that they understand you, that they are trying their best, that they take pride in their accomplishments.
What Should You Do if You See One of These Autism Therapy Red Flags?
People have a certain deference for authority figures.
It can be difficult as a parent to stand up to well-meaning experts who are doing things that, while seemingly innocuous, are damaging to your child.
As parents, we need to be able on the lookout for these autism therapy red flags and know where to draw the line.
A good litmus test is to ask yourself if this would be acceptable if done with a typical child.
Many of the people who work with autistic children are so used to pathologizing behaviors that they don’t notice when they are crossing that line. It is up to us as parents to point this out.
This can be done without being confrontational.
Here is an example. In our most recent IEP meeting, we were pushing to get our son integrated a few times a week. The school psychologist talked about “reducing his supports” in preparation for integration to “see if he could handle it.”
Here’s how I handled it:
Step 1: Ask for Clarification.
This will often tell you a lot, because they’re usually coming from a completely different perspective.
What supports and accommodations did she want to remove?
Well, my son fidgets and tends to wander when in line, so the teacher gives him a job, like carrying a bag, to help keep him focused.
They also don’t sit him next to his best friend, because the two of them wind each other up.
Her recommendation was to eliminate the job in line and seat him next to his BFF.
Step 2: Respectfully state your case.
I pointed out that both of these things are standard classroom management techniques by teachers of typical children (seriously, one method is to let the kids seat themselves the first day of class so you can see who their friends are, then you rearrange everybody on day two).
I stressed this point. Everyone uses these methods. All the time.
So why should my son, who has a harder time than most, be denied such supports if they are helping? Especially when he is being moved to a new and possibly more stressful environment?
You know what she said?
She had honestly never thought of it that way and agreed we should keep the supports in place. Sometimes people just need to hear things from a different perspective.
When it comes to therapy, do the above two steps, but also keep in mind that therapists work for you.
If they refuse to comply or insist on sticking with the above methods, fire them and don’t look back. Your child deserves better.
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What’s the Big Deal With ABA Therapy?