Mother to a child who has been diagnosed with high-risk for autism with sensory processing issues.
My Waterboy. Water is a sensory activity for my son.
Educate Yourself, Speak Up, Don't Be Afraid To Complain
I understand that finding out your child has autism is devastating. I know that you are desperate for help. I know that you will rely on the professionals to do what's best for your child—after all, they are the professionals. I know you are thinking that things will get better once the therapies begin. Truth be told, that's not the way it always works.
You will need to roll up your sleeves and get involved. You may need to read a few books (actual books) in order to educate yourself. You will need to find your voice and speak up for your child, because your child doesn't have a say or a voice.
I've been in the medical field for over 20 years; however, my knowledge of autism was about the basics. I made the mistake of allowing the professionals to take over rather than educating myself. Within a week of beginning behavior therapy, my 18-month-old son refused to eat for five days until force-fed, retreated into a world of his own, had severe regression in all areas of his life, and became extremely distrustful of everyone, including myself and his father. I allowed this to continue for a little over a month, as I was told that things would get worse before it got better. I now know that shouldn't be the case. It took months for my son to recover from the trauma of his first behavior therapy team (they have all since been fired).
So parents, learn from my mistakes. Here are five things I wish I would have done when I found out that my son had autism and therapies were being coordinated.
1. Read the Psychologist's Evaluation and the Behavior Company's Evaluation
Your child will likely be evaluated by a psychologist. This evaluation will include a diagnosis and recommendations for therapy. If it is determined that your child has sensory processing issues in addition to autism, this is just as important to understand as autism. I will be writing another article on sensory processing issues and pin the link here when it is done.
The psychologist will recommend what type of behavior therapy is recommended and how many hours per week in addition to other types of therapy like speech, occupational, sensory integration (for sensory processing issues), etc.
The behavior therapy company will also perform an initial evaluation (in addition to a skills assessment). You should compare both evaluations, and also make sure that the behavior company has the psychologist's evaluation and recommendations. You want to ensure the behavior company does not misinterpret or disregard the psychologist's evaluation.
2. Ask the Behavior Therapy Company What Type of ABA Therapy Your Child Will Receive
The psychologist will make a recommendation as to what type of behavior therapy is most appropriate for your child. Not all ABA is created equally. If your child's psychologist recommends a play-based ABA program, this type of ABA is also referred to as natural environment teaching (NET) and includes Pivotal Response Training, Floortime, Early Start Denver Model (for toddlers) and Denver Model (for older children). These play-based therapies teach children skills through play in a natural environment (rather than sitting at a desk or table).
With NET, rewarding your child for learning new skills or modeling an appropriate behavior is praise, learning the new skill and/or reciprocal play—it is a natural reward. So for example, if your child rolls a ball to you, the reward is praise and rolling the ball back to your child rather than stopping the play and giving them a tasty treat.
Discrete Trial Training (DTT) is not play-based and is a very rigid, structured type of ABA that focuses primarily on obedience and teaching one skill at a time with a reward system completely unrelated to the task your child completed—like a tasty treat or allowing them to play with their favorite toy for a minute. I would encourage parents to read studies about DTT and the outcomes of children utilizing DTT versus other types of ABA therapy. DTT often results with rote, robotic behavior—doing things, including playing with toys—only when told or prompted rather than spontaneous play.
So if your child/toddler was recommended to have a play-based ABA program, DTT would not fit this bill. Neither would EIBI (Early Intensive Behavioral Intervention) since this therapy utilizes many aspects of DTT.
Understand that lack of communication and socialization skills is the very reason why autistic children fail to learn many skills. By increasing communication and socialization skills, there are more learning opportunities for your child. DTT and other rigid, structured ABA therapy types do not teach communication and socialization as a priority—the priority is teaching skills, one at a time.
An abstract of a study performed in 2014 indicates that utilizing a more natural approach of behavior therapy improves communication for children with autism:
Accumulating studies are documenting specific motivational variables that, when combined into a naturalistic teaching paradigm, can positively influence the effectiveness of interventions for children with autism spectrum disorder (ASD). The purpose of this study was to compare two ABA intervention procedures, a naturalistic approach, Pivotal Response Treatment (PRT) with a structured ABA approach in a school setting. A Randomized Clinical Trial design using two groups of children, matched according to age, sex and mean length of utterance was used to compare the interventions. The data showed that the PRT approach was significantly more effective in improving targeted and untargeted areas after three months of intervention. The results are discussed in terms of variables that produce more rapid improvements in communication for children with ASD.
The entirety of the study can be found here:
If the behavior company decides to go against the recommendations of the psychologist and utilizes a different type of ABA, this is a red flag and should be corrected immediately.
3. Insist That All Therapists Speak to Each Other, to Include Overlapping of Sessions
This is so important. When you have multiple types of therapies for your child from different providers, each therapist will teach your child differently, and your child may become confused about what is expected from him in order to obtain the same result. For example, my son was not yet speaking, so the speech therapist began simple signs to increase the communication. He learned the sign for "more" immediately but then lost it within a week. The behavior company made him point to indicate "more" or "again". The behavior company refused to implement any speech therapy techniques despite lack of communication being one of our primary concerns since it was the cause of extreme frustration for my son—not being able to communicate his needs.
The behavior company also did not understand the difference between sensory issues and repetitive behaviors, and they would often reward my son with a sensory toy for a brief period of time and then take it away from him. Sensory toys should not be used as a reward, because when taken away, it often causes meltdowns. If your child has sensory issues, you must demand an overlap session with the behavior team and the occupational therapist. This is so the behavior team can understand the differences between "repetitive, unwanted behaviors" versus your child's needs.
For example, if your child bangs objects, he may need audio stimulation like music. If your child has his face in lights, he may require the television to be on for visual input. If your child is crashing into furniture, he may need deep, pressure massage—these would be sensory breaks but NEVER to be utilized as rewards for performing a task or a skill.
The behavior company also refused look at the occupational therapist's notes which included calming and alerting activities to help during ABA sessions in order to regulate my son's body so he would be better able to learn.
Additionally, the behavior team often utilized rewards that my son would have a fixation on (electronic devices), and because they had no understanding of the impact of overstimulation due to sensory processing issues, we would have to endure meltdowns, often lasting for days at a time.
Be adamant that your child's behavior team communicate with all other therapists in order to completely understand your child's needs, in order to implement and incorporate other skills that are being taught to your child by other providers, and also so your child does not become confused as to what is expected of him to obtain the same result.
4. Don't Be Afraid to Stop Therapy Short If Your Child Is Not Having a Good Session
There is nothing wrong with getting your child out of his comfort zone, but when you see that your child is clearly frustrated, it is time to move on to a different area of learning, a different type of play or take a break. Behavior therapists will often push your child over the limit because they believe that a child is attempting to get out of performing a task. I don't believe this to be the case with my son, but there may be some instances where it is true. I've watched dozens of videos on YouTube using DTT, and I can clearly see a child's frustration rather than attempts to get out of performing. The only way to find out is to stop and move on, and try it again on a different day to see if there can be any progress from the previous trial.
(I also have a bone to pick with "motivation". Behavior therapists often will say something like "he doesn't have any motivation to learn how to color". Well, my son was 20 months old, and it was inappropriate to teach him how to outline his hand rather than teaching him how to scribble with colorful crayons on a piece of paper.
Additionally, even adults prefer one activity over another. I prefer reading a book over running a mile. I never liked Lego's as a kid, but I loved Lincoln Logs. So ask yourself when you hear this, is it lack of motivation or just something your child isn't interested in doing?)
My son has an aversion to Play-Doh—it literally makes him gag if he is not able to run from it. The behavior therapist used physical restraint to make my son stay near the Play-Doh. The result was immediate: arched back; a drop to the floor; mega-loud, painful screaming. I stopped therapy and ended the session. I attempted to explain that texture aversion was an actual medical condition, not a behavior problem, and that this was something not to be worked on by the behavior team, but instead by the occupational therapist. I was told that I was rewarding my son's behavior. This is a good example of the importance of the behavior team communicating with the occupational therapist. It's also a good example of ABA having no understanding of sensory processing issues.
5. Don't Be Afraid to Fire People and Don't Be Afraid to Take Over
My son was recommended to have a play-based ABA program. Instead, the behavior company ran DTT. I ended ABA after a little over a month and demanded a play-based program as recommended by the psychologist, as I later found out. It was agreed that PRT would be utilized. The same supervisor was kept, as were the same therapists. It quickly became clear to me that none of them understood natural environment teaching. And then I just asked point blank—the answer was no—they had never heard of PRT. I fired the entire team. I took two weeks off to try to get my son back on track. A new behavior team was assigned to my son (although the same behavior company), and it took about two months before my son was able to trust anybody. Still, there were difficulties.
I decided to write the goals for my son and how the goals would be taught. For example, for communication, I put my son's favorite toys in Ziploc bags so he would need to request help to play with them. Not only did this immediately work for eye contact and requesting, it also helped with his gross and fine motor skills when opening the bags. We were also able to teach "take out" and "put away".
As another example, if my son was spinning wheels on a truck, we would use that as an opportunity to teach him "slow" versus "fast" spinning rather than eliminating what was a visually stimulating activity for him (considered as an unwanted behavior by the behavior team).
My son had been seeing a speech therapist for quite some time, and for reasons related to insurance, we had to utilize a different speech therapy company. When the new speech therapist showed up, she explained what she was doing during her session…how she always does this and how she always does that.
She was also focusing on signs not realizing that my son was just starting to babble and say words, although not very clearly. I fired her immediately after the session.
Therapists should never use the same routine for every child, rather, the therapists should tailor their teaching techniques to the individual child—all children are different even when they have the same diagnosis. Additionally, it was clear to me that although she had been provided the notes on my son's progress, she either did not read them or disregarded them since she went straight to teaching my son signs. We needed to improve and encourage his vocalizations, rather than encourage signs and discourage his new-found voice. We got our old speech therapist back.
"At least he has a nice face."
Lastly, a number six not mentioned in the title. When the pediatrician's response to the possibility that your child may have autism is, "at least he has a nice face", fire the pediatrician, too.
Yeah, I'll get to writing about things you should never say to parents who have a child with ASD.
I hope you found this article helpful.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.