How to Take Charge of Your Child’s ASD Treatment Now
It was an ordinary weekday morning in September. I was sitting at the kitchen counter working on an assignment for one of my graduate school classes when the phone rang. The caller ID told me it was someone from my son Alexander’s school, and my mind immediately began to race. Was there a problem? What could it be?
“We had an incident and need you to pick your son up from school.” These were the words I heard from Alexander’s special educator when I answered the phone. Alexander, who had just begun fourth grade, had had a meltdown at school and no one could calm him down. My heart sank.
I hurried to the nearby school, and the special educator who had called directed me to a converted closet with a small, square window at eye level. A school staff member was stationed outside the door. Though I am certain the intention was different, this staff person appeared to me like a guard and the closet reminded me of a prison cell. When I opened the door, I was horrified to find my son lying on the floor crying, red-faced, and calling out in anger.
The lioness within me awoke. She emerges from a primal place inside of me, urging me to fiercely protect my young. I was furious! But I knew enough about the importance of developing cooperative relationships at school that I fought to control my angry impulses. I used very few words and approached Alexander slowly and warmly. I used soothing tones to assure him I was going to take him home for the day, which calmed him enough to leave the school. We left quickly so that I wouldn’t end up saying anything to the staff that I would later regret.
My son Alexander has Asperger’s syndrome. I now understand that the challenging part about working with children with Asperger’s syndrome is that each child on the autism spectrum is different. Alexander’s particular sensory struggles and difficulty with transitions often make school more complex to navigate than for most people. He has an over-reactive sensory system, which in his case, means that loud noises, unexpected touch, and visual clutter escalate him. For example, his brain processes unexpected touch like someone putting a hand on his shoulder (which would feel harmless to most of us), as an attack. All kinds of transitions—a new school, a new school year, new teachers, new classmates, a new classroom, new rules, a new week, and even a new activity during the day—are especially stressful for him. It turns out that both his sensory issues and his struggle with transitions contributed to his meltdown that September day.
Earlier that day, following a loud and chaotic PE class, Alexander became very upset in the classroom. His teachers felt that it was in everyone’s best interest for him to leave. When he refused, two teachers, who had the best of intentions, grabbed his arms to escort him out of the room. These teachers wanted to keep everyone safe and help Alexander preserve his dignity in front of his new classmates. The physical touch felt like an attack to Alexander and initiated a meltdown. When Alexander became increasingly upset, they thought that removing him to a closed room by himself would allow him to calm himself down without impacting his classmates. These teachers are bright, capable, and sensitive, but this was obviously not correct response. The fact that these were new teachers operating with different rules at the beginning of a new school year intensified the situation. No one had ever taken that approach with Alexander before, and it shocked and confused him.
This traumatic experience ultimately inspired our new book, Take Charge of Treatment for Your Child with Asperger’s (ASD). I had lived with Alexander for 10 years by this point and knew about his sensitivities and struggles, but I hadn’t shared this information with Alexander’s teachers. I can now see that I was expecting them to automatically know my son and how to work with him effectively. I realized that teachers have large caseloads. Expecting them to treat my child according to his unique and complex needs without sharing what those are, particularly at the beginning of the year, was unfair and unrealistic. I assumed that teachers knew more than me about my son’s Asperger’s syndrome—and you know what they say about what happens when you assume! Had I shared information about Alexander, I could have saved him from a terrible trauma, myself from intense anger, and Alexander’s teachers from feeling rattled and maybe even inadequate in the situation.
While in graduate school for autism spectrum disorders, I decided to create a guide to Alexander’s unique profile for home, school, and the community for my final project assignment in one of my classes. Once I completed my assignment, I started sharing my guide with Alexander’s teachers and service providers so they would have the information they needed to avoid situations like the one at the beginning of fourth grade. One service provider with whom I shared my guide was Scott McLeod, PhD, the educational consultant on Alexander’s case.
Scott and I started discussing how this type of guide could help other parents support their children with autism spectrum disorders (ASD). We decided to write a book explaining why and how to create a guide—a customized toolbox for home, school, and the community. We wanted to help parents collaborate with teachers and service providers to coordinate support in every environment, to help their child reach his or her greatest potential.
One of the first tools we created would have been instrumental in preventing Alexander’s meltdown at the beginning of the school year. The tool helps parents prepare for their first meeting with new teachers and service providers. It sets the relationship up for success by establishing explicit ground rules, sharing important information about the child’s profile, and scheduling future meetings. We wanted to share this tool with other families affected by autism:
Beginning of the Relationship Meeting with Special Educators or Service Providers
Either before or soon after school starts, or when a new professional relationship begins with an outside service provider, set up and use the checklist below to help you prepare for a meeting with your child’s special educator or service provider. The purpose of the meeting is to establish collaboration preferences, tactfully identify the professionals’ understanding and knowledge of ASD, share information about your child’s unique profile, and set up a follow-up meeting to collaborate on your child’s guide. Given that initial interactions with a child with ASD can set the tone for the year, proactive communication and preparation are worthwhile investments.
Sample Checklist for Beginning of the Relationship Meeting with Special Educator or Service Provider (additional points can be added as necessary):
- Establish professional’s preferred communication style(s): e-mails, phone calls, fact-to-face visits
- Determine frequency of communication
- Identify what professional would like to know on an ongoing basis. Options could include, but are not limited to:
– Note to prepare staff for how child might show up to school or appointment
– Information about special occasions and incidents
- Provide professional with information about what you would like to know on an ongoing basis. Options could include, but are not limited to:
– Schedule changes
– Behavioral expectations for each context in which your child interacts
– Is the child happy?
– How is the child interacting with peers?
– Was the child upset during the day? If so, what caused the upset?
– Is the child accessing his social and academic curriculum?
– How can parents support the teachers at home?
- Ask questions about professional’s ASD knowledge and experience. Questions could include, but are not limited to:
- Share guide
- Child’s unique profile
- Already created tools that are pertinent for your child
- Tools that have been successful in the past
- Support skill generalization—helping the child to be able to use the same skill mastered in one environment just as effectively and fluidly in other environments
– Ask if professional would be willing to share tools he/she uses with child
– Discuss importance of having a common language between home, school, and community
– Share what family is currently working on with child with autism
- Set follow-up meeting to develop the special educator or service provider tools for your child’s guide
As you can see, parents can choose the discussion points that make sense for them, delete the ones that aren’t relevant, and add anything important that isn’t included.
This is just one example of the many tools in the book. Parents will have access to multiple tools for use at home, in school, and in the community, both in the printed book and online. The online workbook makes customizing this tool and every tool easy and efficient. Once the tools are completed, parents will have a comprehensive guide to their child’s unique profile.
Now that I have created a guide for Alexander and share it with his support team, I am able to proactively alert teachers about Alexander’s profile, supportive strategies, and potential pitfalls when interacting with him. It helps them to avoid mistakes like the one that led to the incident I’ve described, which can take months to repair. Though we will always have ups and downs, we are able to avoid many unnecessary traumas and have not had a crisis since I started sharing my guide.
Cornelia Pelzer Elwood is the mother of two sons, one of whom has Asperger’s syndrome. She received her BA from Vanderbilt University, trained as a life coach, and earned a Certificate in Autism Spectrum Disorders from Antioch University New England. She has many years of experience collaborating with her son’s providers and interacting closely with his schools. She is based in the Boston area of Massachusetts.
D. Scott McLeod, PhD is the Executive Director of the Massachusetts General Hospital Aspire Program (www.massgeneral.org/children/Aspire), clinical instructor of psychology for Harvard Medical School, and clinical psychologist for individuals with autism spectrum disorders and their families in his private practice in Wellesley, Massachusetts, USA. He obtained his PhD in clinical psychology from Boston University.
Cornelia Pelzer Elwood and D. Scott McLeod, PhD speak to groups about their book, present about ASD and parenting at conferences, and lead a six-week Take Charge ASD training for parents.
Book on Amazon: http://tinyurl.com/takechargeASD
This article was featured in Issue 59 – Top Strategies, Therapies and Treatments for Autism