We were kid-free for a large part of our Saturday. Usually that means we’re having fun. These days it could also mean we’re running errands and taking care of business before our oldest leaves to Arkansas. But today it meant we were attending a local conference dedicated to therapeutic interventions for people living with Autism.
The University of North Texas, about 20 miles north of our home, hosted their annual Adventures in Autism conference. The conference welcomed a diverse crowd of mainly professionals: educators, speech therapists, child psychologists, behavioral therapists and diagnosticians. Parents and caregivers were also represented. There were four breakout sessions and two keynote speakers, one at breakfast and another at lunch. Vendors lined the hallways for people to visit in between each session. There was no fee for parents of children diagnosed with Autism to attend the conference, so it was an easy yes for us. Free learning and free food always make for a fun day in my opinion!
In true Crespo form, we had a game plan entering the conference. We decided which sessions we would attend in advance. Divide and conquer was our strategy, so that we could receive as much information in the 7 hours as possible. We’d meet up in between sessions to share what we liked and what we wish was covered. They were brief interactions in the midst of a hurried crowd.
I shared some of my takeaways from the conference on my social media, but I’ll post them here too with a little more detail. If the presentation was linked on the conference website, I’ll share it here too.
“Navigating the Pathway to Diagnosis and Care for Individuals with Autism Spectrum Disorder” by Haylie L. Miller, Ph. D., UNT Health Science Center.
It’s important that we redefine Autism as a “whole body disorder” because the majority of people also suffer from other diagnoses. When looking at what your child needs, don’t let bigger symptoms overshadow the lack of motor skills. People with ASD also meet diagnostic criteria for Developmental Coordination Disorder (DCD), but rarely is it diagnosed. Advocate for the DCD-Q to be administered to see if your child could qualify for additional physical therapy services. Because play is crucial to the development of the child, the child’s ability to keep up with his or her peers on the playground or at the park is important, even though it seems like the last item on the priority list. Dr. Miller and her team also touched on topics, such as the three issues parents reported being the most difficult to manage after the diagnosis: service navigation, service ranking and satisfaction rates. They also shared that according to one study in 2016, Texas ranks as 2nd LOWEST state in the nation for community-based disability support services. The latest census data from Tarrant county indicated that an estimated 8,000 children are living with ASD but the 2019 BCBA Registry indicates that there are only 120 Board Certified Behavioral Analysts in the Tarrant county area.
Now that we know: We are considering asking our pediatrician to administer the DCD-Q to see if Jacob meets the diagnostic criteria. If so, this could mean the addition of physical therapy.
Half of children with ASD will wander, leaving familiar places for the unknown. 90% of deaths from children who wandered from 2011- 2016 were from drownings and being struck by cars. Most accidental drownings happened in lakes, rivers or ponds NOT the backyard pool. Dr. Filipek advocates for YMCA Water Safety classes for children with ASD, which differ from traditional swim classes. Juan reported that she also talked about the importance of teaching children to recognize stop signs as a signal to stop. Using a stop sign in the home as a visual cue to not leave the home or backyard was also suggested.
Now that we know: I see this issue come up often in the Autism facebook groups I belong to. I know that wandering and eloping is a common behavior for children on the spectrum and my Jacob is no different. If we allow him to walk on his own in any public place he tends to run off with very little concern about where Juan or I are at. We are hyper-vigilant when we are out with him. We have a top lock on the door that leads to the backyard which has a pool. We will need to figure out additional measures to take for the front door or his bedroom door, as wandering can happen at night when caregivers are sleeping.
“Parent Involvement in Education Planning for ASD” by DeAnn Foley, M. Ed., Blue Fan Inc.
The speaker disclosed that she has worked in the educational system for almost 30 years, and is a mom to a boy diagnosed with Autism. Her son, Ryan, is now a young adult who operates the Blue Fan Inc. non-profit. She candidly shared her experience as being the professional and also the parent in many ARD meetings. The presentation covered 4 different types of parents she usually interacts with and encouraged parents in the audience to stay open-minded, honest and informed as they enter the ARD meetings of their child or children. The school will provide what is appropriate, not necessarily what is the best because of many factors— primarily money! The best partnerships come from educated, well-informed parents who know their legal rights and work collaboratively with the school. Ask the questions when you don’t understand! Parents who go in and demand services, don’t nearly get as far as parents who go in and ask for evaluations: let the data drive the school-based decisions. A resource she recommended for parents of special-needs children is www.wrightslaw.com.
Now that we know: As somebody who has been in education for 12 years, I appreciated her perspective. My first ARD meeting as a parent was with my middle son who qualified for speech services. However, Jacob’s needs are so much different than that of Lucas. A part of me cringes when I think about ARD meetings for Jacob. Our Early Childhood Interventionist and Speech Therapist, Mrs. Jessica, has already started the process for us to have an initial ARD meeting on Jacob’s behalf through Frisco ISD. We are grateful to have the option to transfer him in, but we are not certain that we will start PPCD next year.
“Focused and Engaged: Parent-Implemented Intervention Using an iPad to Enhance Expressive Language in Young Children” by Yvette Evans, Ed. D., CCC-SLP, UNT.
Parent-mediated social activities using apps on tablets, combined with effective parent-implemented interventions create a unique opportunity to promote social communication interaction. She advocated for using the iPad under Joint Attention Strategy. This is not about handing your kid an iPad to play with independently! This is about following the child’s lead and spontaneously creating opportunities to share perspectives. Dr. Evan’s research indicated that there are positive benefits to using the iPad with children with ASD, but emphasized the importance of joint engagement. She also talked about the practice of pointing while using the device.
Now that we know: In all honestly, I’ve been very hesitant to use any technology for communication with Jacob. My biggest fear is that this will delay his verbal communication even more. Juan attended this session and come out with a positive impression of using the iPad for language development. He wants to use the “Make A Scene” app with Jacob as the presenter shared her positive experiences with it. The nonprofit organization Autism Speaks has some resources available to help parents and caregivers navigate technology on their website.
“Helping School-Age Students with Autism Succeed in General Education Classrooms” by William l. Heward, Ed. D., BCBA-D, The Ohio State University.
I was especially excited to hear Dr. Heward speak again, especially since I enjoyed his lunch session so much. However, his second presentation was not as rich as his first. We ran out of time during the breakout session, and were probably only 1/3 of the way through his presentation.
The most important skills children need to have to be successful in general education classrooms are:
1. Display near-zero problem behavior
2. Participate and learn in groups
3. Complete assigned tasks independently
4. Interact appropriately with peers
5. Comply with rules/follow directions
6. Get teacher assistance appropriately
This is also the order in which to teach these skills. This session was primarily targeted to educational professionals and highlighted specific teaching strategies. He shared many videos of younger children in classroom settings from the Ohio and Pennsylvania areas. The high levels of engagement from these elementary classrooms warmed my heart! He repeatedly encouraged educators to think of all kinds of variations of automatic student responses they could embed in their day-to-day interactions, which seemed like common sense to me.
Now that we know: I’ll file this information away to be used later. Jacob is 29 months, so a lot of this information doesn’t readily apply to our circumstance. It did make me think about how I could use this information to advocate for my students with ASD in the classroom!
“Extracting Goals and Objectives from Non-Behavioral Models via Seven Dimensions of Applied Behavioral Analysis” by John Conrad, BCBA-D, ACES ABA, San Diego, CA.
If I could decipher Juan’s chicken scratch I think it would say something like, “I’m clearly the only one in this room who is not a certified behavioral analyst. I don’t know what these people are talking about.”
Now that we know: Well, nothing. Thank you, next.
Dr. Allan emphasized the important role music plays with those on the spectrum. She believes there are universal characteristics between language and music. She described it as a complex communication through sound and shared that music is a global experience acquired through exposure and interaction. She shared video clips of music therapy in practice and how it can work hand-in-hand in developing language. She also discussed the difference between music therapy and music interaction. Her presentation was highly attended and interactive, according to Juan.
Now that we know: We’ve been interested in music therapy, but were unable to secure it a part of our summer therapy schedule. It isn’t our priority at the time, but Juan was encouraged to include more music in our daily life at home. Jacob whistles as he walks around our home. We’ve also caught him dancing to songs from the television. However, he seems intolerant of people singing songs. This was actually one of his goals at the Callier Center because he exhibited a lot of escape behaviors during song time, but those behaviors eventually faded and he participated well towards the end of his time there.
“Increasing the Verbal Behavior of Preschool Students with Autism” by Lee L. Mason, Ph.D., BCBA-A, UTSA; Alonzo Andrews, BCBA, LBA, UTSA; Kelli Spencer, RBT, UTSA; Brittany Marcus, RBT, UTSA; Janet Enriquez, ECS Region 20.
Dr. Mason and his team shared at length a grant from TEA that was given to several school districts in the San Antonio area as part of an initiative to fund programs for students with Autism. The SCoRE assessment was created by the University of Texas at San Antonio’s Autism Research Center. By working closely with specific campuses who received grant funding, the UTSA’s Autism Research Center was able to train teachers to monitor and implement specific language skills so that students could benefit from specific techniques typically used in a clinical setting. The SCoRE assessment generated individual speech goals that were continuously tracked and worked on in the the classroom. The grant funding was extended into year 2 because of promising outcomes at the conclusion of its first year. The SCore app should be available at the end of summer.
Now that we know: Much like Juan’s experience above, this session was primarily geared towards speech pathologists. I learned new vocabulary like, “verbal operants: echoic, mand, tact and intraverbal”. I was a little lost during some of the presentation and it felt a little unsettling. There were several people who got up to leave in the middle of the session and I wondered if those adults were also parents who felt like the presenters were speaking a different language. I plan to try to learn what these new words mean and how I can apply some of the techniques used in this video at home with Jacob.
Our morning began with Mr. Filipek’s presentation that highlighted the stark contrast and sometimes subtle behaviors that differentiate typical from atypical behaviors. It was hard for me to watch. I could feel the tears starting to fill my eyes. As we watched typically-developing babies and toddlers operate in their world, I was reminded of the baby I remember Jacob being before we noticed regression setting in. He was happy, engaged and highly alert of the world around him. My heart sank as I thought about the atypical development we’ve seen since about 18 months of age.
I know her presentation wasn’t designed to heighten my anxiety. Instead, it was designed to empower parents and caregivers to pay attention to the concerns they might have regarding their child’s development. Listen to the mothers. Research indicates that if mothers are concerned about their child’s development, they are correct 89% of the time. Listen to that parental intuition. Advocate for your child, even if everyone tells you to “give it more time”. If your pediatrician is not listening to your concerns — FIND a new pediatrician! Social connection is innate, no one teaches babies how to connect with others! Gaze is the most important way in which babies learn. If either of those behaviors don’t seem right with your baby, get an evaluation immediately.
Now that we know: The presentation was more affirming than it was difficult for me to experience. Although I’ve shared my hesitations about recognizing Jacob’s red flags in a previous blog post, I’m grateful we pursued early intervention. I’m thankful that although our pediatrician didn’t initially pay attention to some of our concerns, that she also didn’t fight us on getting a referral to a pediatric psychologist. As much as we didn’t want for anyone to confirm our biggest fears, I know that the delay in intervention might be even scarier to face down the road.
“Next year is NOW” by William L. Heward, Ed. D., BCBA-D, The Ohio State University.
During lunch we were pleasantly surprised with Dr. Heward’s comic relief, love of baseball and powerful insights regarding ABA Therapy and tools for parents who feel overwhelmed at navigating all the goals for their child. Dr. Heward is as smart as he is personable. I think I could hear him talk for hours and be highly engaged.
He advocated for us to get to know a young adult with ASD in the community to see the value in the skills bring learned when your child is young. The interventions for young children are crucial in setting the bigger stage for life as an adult with ASD. The most important question to ask in ARD meetings, in his opinion, is “How will this contribute to the child’s quality of life” … don’t get lost in all the educational goals set by all the professionals! Provide a variety of early work experiences and identify the strengths of your child for possible vocational opportunities. Start young by assigning chores. (In another session, the speaker said that up to 80% of adults with ASD who have a college degree are unemployed!). Take a look at his dropbox folder he shared with us today, I’ll be paying particular attention to the “Prioritize TB’s (Target Behaviors) and “Social Significance TB’s” worksheets.
Now that we know: We will challenge each other to keep in mind the “bigger picture”. In conversations with my oldest, I’ve used the phrase “it doesn’t matter how you start, it just matters that you finish” when we were talking about the option of her studying at community college this fall. I think the same idea applies to Jacob and his educational planning. I have no idea what kindergarten will look like, but I refuse to believe that if he does not start in a typical kindergarten class, then we’ve lost this battle against Autism. One year does not dictate our entire educational trajectory.
That’s a lot on a Saturday!
We raced home immediately following the conference because we promised grandma that we would! We chatted on our way home about the conference. I attempted to read Juan’s notes as he drove us home on a blistering Saturday afternoon. I asked him how many questions he asked at the end of each of his sessions. His answer: zero. I asked at least two in every session, I say. Of course you did, he tells me with a smile.
Thank you UNT for hosting a local conference and giving parents the opportunity to attend for free. Thank you for the presenters who gave up their Saturday to share their knowledge, expertise and experience with those in the room.
But most importantly, thank you husband for being a willing and active participant in raising our child with Autism. You rock at this, even if you were the only man in the room in some of your sessions.
Signed with love, Kat.