Beth, almost 3 years old at the time, was screaming her head off at her psychiatric evaluation. The clinician just gave me a her diagnosis. “It” was autism. She told me we needed to do some kind of intervention right away, either Applied Behavioral Analysis (ABA) or Floortime. I told the clinician about Beth’s sensory symptoms because I had been reading books about sensory integration therapy, and the clinician said, “yes, there is a sensory piece.” And that was it. The end of the advice on therapies.
Since then we have fumbled through dealing with the “sensory piece,” which has turned out to be the biggest challenge for us, and, quite possibly, THE underlying mechanism for what has lead my child’s autism traits and developmental delays. It has taken me two years to truly grasp Beth’s sensory issues and settle on an approach to parenting my “sensory kid.” In this blog post I will give a background on common sensory challenges in autism and typical sensory therapies. Also, I will provide an account of our own experiences with sensory evaluations and therapies, and describe how we opted out of formal therapy and took our own approach for awhile.
The Sensory Piece – What is It?
It has been well documented by people who have autism that they sense the world differently than “neurotypical” people (i.e. people who do not have autism or sensory processing disorders). This leads to behaviors that are often misunderstood by neurotypical people.
In regards to effectiveness of the therapies, the American Academy of Pediatrics (AAP) recently concluded there is insufficient evidence for the efficacy of current sensory therapies. Also, the AAP recommended that a separate diagnosis of Sensory Processing Disorder should not be used, and, because of the lack of evidence, pediatricians should help parents monitor effectiveness. They also had this line in the statement: “Occupational therapy with the use of sensory-based therapies may be acceptable as one of the components of a comprehensive treatment plan.” The news of course ran with the tag lines that the sensory therapies were “not effective” and “unproven” to sensationalize the recommendations and attract readers. The way I read it, the AAP is acknowledging that many people think the methods have worked for their children, it is just the methods haven’t been proven.
The AAP recommendations lead to a lot of talk about what is behavioral versus what is sensory. It is a tough distinction with young children who have autism, because behavioral, communication, and sensory issues mix together and the children are melting down so frequently.
Some people believe an error in sound processing causes sound sensitivity and other symptoms in people who have autism, and that a listening therapy program can help.
So, as parents of a child who has sensory challenges, we have to make difficult decisions on the above therapies with insufficient efficacy data, which means we each have to follow our instincts to determine what is best for our child. I have known many therapists and parents who swear by the above therapies, and I respect their opinion and choices. I agree and embrace that my daughter has sensory integration and sound processing challenges, so in that regard the background and stories I have read on the above therapies has been enlightening. In the end our decision was to not pursue formal sensory integration and listening therapies, but first we went through an evaluation and tried a few sensory integration sessions before we came to that decision.
Our Experience with Sensory Evaluations and Therapies
Despite the AAPs recommendation that Beth’s pediatricians should help monitor her sensory therapies, her pediatricians knew little about sensory therapies. We were on our own, fumbling to figure it out. Eventually, in a desperate attempt to help calm my daughter’s anxiety, I asked our occupational therapists and behaviorists about various sensory therapies. We tried therapeutic brushing, pressure vests, and a friend made a weighted blanket. We tried various squeezes and massages. All of these things were supposed to calm Beth, but I didn’t see an effect. If anything, the attempt to use these things stressed her out more.
At about 4 years old, we took Beth for an evaluation by an occupational therapist with expertise in sensory integration, and her sensory diagnosis was “mixed sensory modulation profile” with the following breakdown:
- Auditory (response to sound): over-reactive
- Vestibular (response to movement): under-reactive, with a low threshold (i.e. she craves movement, but can’t handle much input).
- Proprioception (response to joint sense): under-reactive
- Tactile (response to touch): mixed reactivity
- Visual (response to sight): over-reactive
- Oral (response to sensations in the mouth): under-reactive (mouths frequently)
I would say the above was a fair assessment, but I can name several exceptions in each category. The therapist recommended a combination of sensory integration therapy, listening therapy, and Floortime (play based, child-led therapy). We said yes to the Floortime (parent-based with monthly consultations, through the Play Project), but held off on the sensory and listening therapies.
Several months after starting the Floortime therapy, we tried sensory integration therapy with an experienced occupational therapist. After a few sessions, the therapist convinced me to put headphones on Beth for listening therapy, which greatly agitated her. The headphones combined with the therapist trying to push Beth’s legs back into a swing as she tried to escape led to disaster. Things were way out of hand at the session, so I took Beth to the bathroom to have a break. There I was with Beth in the bathroom as she was attacking her own arms by biting them. She didn’t break through the skin, but almost, and it was the worst self-injurous behavior I have ever witnessed with her. I stormed out of the occupational therapy center shaking with fear and anger and never went back.
One Year Later, Progress and Next Steps
Over about a year’s time, I let Beth guide me on her sensory adventure without agenda. My heart told me this was the best way for Beth. Now she is jumping, crawling, climbing, spinning, and running like the wind. Her oral mouthing issues have improved considerably, but they are still present. We visited a local special needs gym recently and Beth absolutely loved it….jumping, running, and climbing the whole time. It was a HUGE difference from 1 year ago and I almost cried to see her have so much fun in a sensory gym. Beth’s auditory issues are largely better, and I have discovered ways to help her with her sensitivities and use her auditory preferences as an advantage. I use no specific “sensory diet.” Since I homeschool, she gets doses of physical, tactile, and oral input throughout the day upon request, which really works well for her. Beth did not like the weighted blanket when she was young, but she took over my heavy synthetic down comforter this winter and started sleeping through the night. There have been many discoveries like this we have made and I will write more on our sensory approach with Beth in the next post.
But we still have a long way to go, and I would like someone with expertise in occupational therapy to help guide us. For the next step, I am on the hunt for a occupational therapist who works out of a gym who will do Floortime with Beth. It will take a very special person to recognize Beth’s signals and let her lead the way. I want someone who will provide Beth opportunities for slow expansion and who will treat me as partner by giving me creative suggestions to use at home. I have a lead on a possible therapist, I am pursuing it, and I am hopeful.