If you have a question, how do you find the answer? Many of us do a quick Google search or search out the answer at a library. However, people with Autism Spectrum Disorder (ASD) and their families face many challenges and barriers when trying to locate information.
A recent episode of the (highly recommended) podcast The Measure of Everyday Life discussed the information environment for people with ASD, which reminded me of a prior interview I did with speech pathologist Lauren Ross, MSEd, CCC-SLP. As mentioned in the prior interview, Ms. Ross is an elementary school speech therapist in the Virginia public school system who specializes in working with children diagnosed with ASD. The podcast prompted me to ask Ms. Ross about how she helps her students (and their families) navigate their information environment, find the right information, and avoid misinformation. What follows is an edited version of our recent conversation.
To refresh, can you give us some background on the population you work with?
I primarily work with an inner-city population whose ages range from 5 to 13 years old. I spend the majority of my days with elementary school students, but will occasionally work with the preschool population. All children I interact with have received a diagnosis of ASD.
What resources or tools do you use to share and distribute information among your students and their families?
The majority of resources I provide are speech-focused; however, I tailor these based on the child’s individual needs (e.g. articulation needs or pragmatic needs). To distribute these, I typically provide a hard copy to my students that can be taken home and shared with their families. Several of my students’ families don’t have internet access, so paper-based resources are the preferred method to ensure everyone is able to receive the information they need.
To distribute information among my students’ families, our school system also offers a Special Education Advisory Committee that holds quarterly and monthly in-person parent-focused events at different schools throughout the district. These events are used to provide background on ASD, reinforce what resources are available through the school, and provide information on resources available in the community such as in-home counseling and behavioral support.
Knowing what resources are available to your students and their families, do you feel anything is missing?
This is a tough question because I only see things from a provider standpoint. From my perspective, I feel as though I’m providing appropriate resources, but from a parent’s standpoint, there might be key elements missing that only parents would recognize.
That being said, a key component I feel is missing is the connection between school and home. The information and education I provide might not always translate well to the home environment because my students might behave differently and have different needs between the two settings. For example, when a parent describes their child’s behavior at home, it’s difficult to provide resources for that behavior and how it can be addressed when you can’t witness it at school.
What challenges do your students and their families have regarding information about ASD?
By the time a student has come to me, they’ve already received a diagnosis of ASD. After the initial diagnosis, the challenge is connecting the right information and resources to the right people. Since much of ASD treatment is individualized, the resources and information really need to be provided on a case-by-case basis. It can be really challenging to figure out what will work best because what works well for one student and their family might not work at all for another student and their family.
Knowing that advances in technology (such as Google) have given your students’ and their families a massive amount of information at their fingertips. How do you help them navigate the large amount of information and avoid misinformation?
Anyone who goes to the doctor and receives a diagnosis will probably immediately jump onto Google. Online searching provides a lot of helpful information, but there can be a lot of misinformation. I always provide a list of reputable resources to my student’s families, including trustworthy websites. The hard thing is when parents come in asking for therapies they read about or saw videos about online. As I said before, ASD is such an individualized diagnosis it’s hard to take what worked for one child, use the same technique for another child and then expect the same result. In addition, this can also cause parents to focus in on one behavior and draw incorrect conclusions. For instance, they might connect a behavior change to a change in the child’s diet and not account for other circumstances (like a change in the child’s therapy) that also influenced the behavior change.
That being said, the existence of misinformation does provide an interesting opportunity to redirect parents in the right direction. If a parent comes in suggesting a therapy that wouldn’t be a good fit for their child, I use this opportunity to further reinforce why specific therapies are being used, what progress the child has made, and identify/adjust future goals.
The Measure of Everyday Life podcast episode described the transition from school into the workplace as a “cliff”. Knowing the cliffs you witness are a little different based on the population you work with, how do you help your students prepare for their cliffs — such as transitioning to a new grade or from preschool to elementary school or elementary to middle school?
Transitioning is scary for everyone — the students, their parents, and even me, as a provider. For my students, it’s all about preparation: getting students the right resources as early as possible. For preschool students, I start going into their classroom several months before they jump to elementary school. In addition, those students are also provided with resources (such as books, handouts, or pictures) they can have around their house to give them constant visual cues about what the elementary school looks like, so it’s not surprising for them when they show up on their first day.
For elementary school to middle school, this is a whole different level of transition because students might need to become accustomed to changing classrooms. This transition is approached very similarly to the transition from preschool to elementary school: it’s all about preparation and getting the students accustomed to their new surroundings before the first day of school, so nothing is surprising or shocking. This is also extremely helpful to parents, because if the transition is easier for the students, it will likely be easier for the parents.
Transitioning to a somewhat different topic, in our last interview we discussed the use of iPads in your practice. The Measure of Everyday Life also talked about how technology (such as iPads) gives students with ASD a sense of control. Do you see that in your practice?
I can understand how iPads give children with ASD a sense of control, but I also see them provide a sense of comfort. Children who have difficulty speaking can use the iPad to communicate, and children who have fine motor skill difficulties can use the iPads to write. iPads shouldn’t be the sole intervention or tool because they might then rely too heavily on the device, but it can certainly help students avoid stressful situations and diminish frustration.
Do you have any final thoughts on the current information environment for your students and their families?
Even with the risk of misinformation, the large amount of information available now has been good, because it’s placed conditions like ASD at the front line. Parents have heard about the condition, and many are familiar with it by the time their child receives the diagnosis. Although the current information environment might be somewhat overwhelming, this also means there are a lot of options to pick from so that resources and information can be tailored to meet each child’s individual needs.
Alexa Ortiz