World Autism Month

World Autism Awareness Month

April marks international recognition month for Autism

By Misha Caldwell, PNP, and Alise Jaime, MA, CMH Pediatric Clinic

April is World Autism Month, and historically there have been events and support activities throughout the U.S., as well as internationally, to bring awareness to the disorder. Here on the Oregon North Coast, there is an annual “Color the Coast for Autism” 5K run held at the Warrenton/Astoria KOA campground. The CMH Pediatric Clinic and other CMH caregivers have been planning and organizing a group of supporters to participate as a team. However, we all know about the ever-changing situation with the coronavirus pandemic and the importance of social distancing and staying home to stay well. The walk/run itself has been rescheduled to September 26, 2020, but that hasn’t stopped the pediatric providers, caregivers and clinic from wanting to bring attention and awareness to Autism.

Misha and Alise

Misha Caldwell, PNP, and Alise Jaime, MA, from the CMH Pediatric Clinic

Autism is a developmental disorder with a wide variation of symptoms and levels of severity. Its core symptoms include challenges in communication and social interactions, in addition to repetitive physical or vocal behaviors. Signs and symptoms begin in early childhood but can go unnoticed or misdiagnosed depending on the severity. Autism is diagnosed by evaluations with developmental screening tools. These tools are routinely completed on all children at 18 months of age and again at two years old, but screenings should be completed at any age when concerns are present.

The treatment modality for Autism is therapy, therapy, therapy. Children diagnosed with Autism are commonly referred to Early Intervention (EI) programs that will again complete developmental screenings and evaluations, followed by initiating needed therapies. Additionally, private therapy referrals should be considered for speech (ST), occupational (OT) and applied behavior analysis (ABA) where available. Utilizing both EI programs and private therapy options can help maximize the therapy options and frequency. As children get older and are transitioned from EI therapy to school-based programs, they are usually placed on an individual education plan (IEP) by their schools. This allows therapies to continue within the school setting and offers additional assistance, accommodations and services within the classroom.

Given the current COVID-19 closures and restrictions, many of these therapies came to a screeching halt this spring. Parents in our community are being challenged with the task of 24/7 parenting and supporting their children, all while being thrust into teacher mode as distance-learning has become the new norm. For parents with children affected by Autism, this can be exceptionally challenging as they also serve as therapists. Long breaks in professional therapies can result in progress and achievement regression. The Autism Speaks organization (autismspeaks.org) has compiled and developed a resource page for helping these children continue to thrive throughout the pandemic period. They have links to resources, video learning, virtual field trips and events to help navigate these times and support our kids.

Resources

Books

  • Overcoming Autism by Lynn Koegel
  • The Unwritten Rules of Friendship: Simple Strategies to Help Your Child Make Friends by Natalie Madorsky Elman and Eileen Kennedy-Moore
  • Bully Blocking: Six Secrets to Help Children Deal with Teasing and Bullying – Revised Edition by Evelyn M. Field.Engaging Autism by Stanley Greenspan and Serena Wieder
  • Thinking Person’s Guide to Autism by Shannon Des Roches Rosa, Jennifer Byde Myers, Liz Ditz, Emily Willingham, and Carol Greenburg
  • Coloring Outside Autism’s Lines: 50+ Activities, Adventures, and Celebrations for Families with Children with Autism by Susan Walto
  • Making Peace with Autism by Susan Senator
  • Incorporating Social Goals in the Classroom by Rebecca Moyes
  • Addressing the Challenging Behavior of Children with High Functioning Autism/Asperger Syndrome in the Classroom : A Guide for Teachers and Parents by Rebecca Moyes
  • Unstuck and On Target! An Executive Function Curriculum to Improve Flexibility for Children with Autism Spectrum Disorders by Lynn Cannon
  • How to Teach Life Skills to Kids with Autism or Asperger’s by Jennifer Myers
  • Superflex: A Superhero Social Thinking Curriculum by Stephanie Madrigal and Michelle Garcia Winner
  • The New Social Story Book by Carol Gray
  • The Zones of Regulation by Leah Kuypers (book and app for self-regulation)
  • No More Meltdowns by Jed Baker
  • Wrightslaw: From Emotions to Advocacy – The Special Education Survival Guide, 2nd Edition by Pam Wright and Pete Wright
  • The Autism Spectrum, Sexuality and the Law: What Every Parent and Professional Needs to Know by Tony Attwood, Isabelle Henault and Bick Dubin 
  • A Parent’s Guide to Asperger Syndrome and High Functioning Autism by Sally Ozonoff, Geraldine Dawson, and Jamie McPartland
  • Asperger’s and Girls by Tony Attwood and Temple Grandin
  • Prescription for Success: Supporting Children with Autism Spectrum Disorders in the Medical Environment by Jill Hudson
  • Visual Strategies For Improving Communication by Linda Hodgdon
  • Helping Children with Autism Learn

Online Training Videos

  • Michigan State University is providing a free study of an internet-delivered Autism Parent Involvement Project to teach parents ways of increasing their children’s communication and play skills. A handout was provided to the family. For more information, contact Nikki Bonter at bonterni@msu.edu; (517) 432-8031
  • The University of California Davis MIND Institute Center for Excellence in Developmental Disabilities has training videos that provide education around behavioral strategies for children with ASD called ADEPT (Autism Distance Education Parent Training) Interactive Learning: ucdmc.ucdavis.edu/ddcenter/CEDD_ourproducts.html
  • RETHINK Autism offers web-based curriculum for parents to learn ABA-based techniques and how to practice them: rethinkfirst.com/Info/parents.asp
  • Interacting with Autism is a video-based online resource: interactingwithautism.com

Workshops

  • Columbia Regional Program offers a series for caregivers of children with ASD of all ages and abilities, one Saturday each month from 10 a.m to noon. Topics vary from positive behavior strategies and use of visual supports to accessing community resources, etc. To register: crporegon.org/Page/198. Questions may be directed to dpark@pps.net

Websites and Toolkits

  • Michelle Garcia Winner’s website socialthinking.com offers a unique method of teaching “Social Thinking” in order to develop peer relationships and improve social language and social problem-solving.
  • Social Stories are stories that parents can create to help with daily activities and affirm social behaviors: thegraycenter.org/social-stories/how-to-write-social-stories; benziesangmassocialstoriesforautism.blogspot.com
  • Download/request the free Challenging Behaviors Toolkit from the Autism Speaks website: autismspeaks.org/family-services/tool-kits; This toolkit provides families with information about challenging behaviors (e.g., elopement, non-compliance, obsessions, compulsions, rituals, tantrums, etc.) and how to help their children with these behaviors
  • A free Sleep Toolkit is available on the Autism Speaks website, describing behavioral recommendations to improve sleep hygiene, especially for children with limited verbal skills: autismspeaks.org/family-services/tool-kits
  • Recommendations for supporting easier transitions between activities (e.g., visual aids, countdown timer and other suggestions) are available from Indiana University’s Institute on Disability and Community: iidc.indiana.edu/?pageId=399
  • Family-friendly information and useful tools for children with ASD can be found at Sesame Street’s “See Amazing in All Children” website: https://autism.sesamestreet.org/

Support for Parents and Families

Navigating life for a child with ASD can be overwhelming. There are agencies geared to provide support for parents, including:

  • The Oregon Family to Family Health Information Center provides information to families navigating the complex world of special health care needs. It is staffed by family members. For more information, call 1-855-323-6744; contact@oregonfamilytofamily.org
  • The Family Involvement Network (FIN) is a free statewide program that serves children with special health needs. For more information, please contact Tamara Bakewell, 503-494-0865
  • The Swindells Resource Center, located at Providence Hospital, provides information about a variety of disabilities, including Autism. They have parent volunteers to answer questions, a lending library and community presentations: 503-215-2429; swindells@providence.org
  • The state of Washington offers a free downloadable guidebook for families of children with Autism (Autism Guidebook for Washington State: A Resource for Individuals, Families, and Professionals): here.doh.wa.gov/materials/autism-guidebook
  • Support groups can be very helpful for some families; Contact information for local support groups can be found on the websites for the Autism Society of Oregon and the Autism Society of Washington
  • The Special Care Planning Team at Palladio Group is a helpful resource for families to learn more about financial life care planning from birth to adulthood (such as Special needs Trusts, Government Programs, Guardianship, and ABLE Accounts). They provide free workshops and individualized family meetings. For more information, call (503) 542-9412

Autism Empowerment is a community support network that offers many resources and activities that the family may appreciate, including parent support groups, Tween & Teen Social Club, Game Night, Groups for Adults with ASD, and Men’s Autism Support Groups. For more information visit www.AutismEmpowerment.org

Respite care is often available through local social services agencies including local chapters of the Arc and County Developmental Disabilities programs.

  • The Autism Society of Oregon also offers the “Take a Break on ASO” program that provides four hours of respite care, movie passes and a restaurant gift certificate. For more information, contact 1-888-Autism-1; info@AutismSocietyoregon.org

For safety reasons around eloping, we recommend that children wear an identification tag or bracelet. Many grocery stores have kiosks where one can be designed and purchased. A variety of options are also available from the following sources: www.RoadID.com, www.yikesid.com, www.tagxpress.com, www.amazon.com

Applied Behavior Analysis

Applied Behavior Analysis (ABA) can significantly increase the functional abilities of children with ASD, for example in the areas of language development, play, behavioral difficulties, attention maintenance, transitions and the ability to benefit from educational opportunities.

Other Opportunities/Social Activities for Children with ASD

Your child would benefit from frequent structured social activities outside of school and during the school day. This could include a small group of peers in a “Lunch Bunch” or organized group activities with adult facilitation through clubs, youth groups, scouting, etc. Peer mentors and “recess/lunch buddies” at school may also be helpful.

We encourage you to continue to work with your child on adaptive skills at home each day (e.g., health and safety). Children learn best with direct modeling and daily practice of new skills. Working with educators and therapists on shared goals would be helpful. Making a step-by-step guide or using pictures of the child doing an activity can also help.

In addition to other therapeutic services, physical exercise may be helpful for symptoms often associated with Autism (e.g., aggressive behaviors, disruptiveness). Exercise (e.g., swimming, hiking, martial arts) can help improve attention span, promote self-esteem and promote positive social interactions. Local parks and recreation services may have options to support children with developmental disabilities.

School is an excellent setting to develop and practice social interaction skills, and this process may be facilitated by a speech and language therapist. Your child will benefit from an emphasis on pragmatic language skills, such as direct instruction using social stories to learn about conversations and interactions with peers. For example, they may benefit from learning simple scripts for initiating play, such as “That looks like fun. Can I play too?” or “Would you like to play with these Legos with me?”