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Why Should We Care About Research?

This blog will be our first in a series regarding Research.  We welcome guest author Soo Jeong-Kim, MD Medical Director of the Seattle Children’s Autism Center.  Dr. Kim explains why we should care about research, and what to consider before participating.  In our next blog, we will detail a current research opportunity available in the area. 

Soo Jeong-Kim, MD Medical Director of the Seattle Children’s Autism Center

We know a great deal more about autism than our previous generation did. For example, we know autism is not caused by poor parenting. We know some interventions are safer and more effective than others. We know these because of research. Many important questions are being asked by families and doctors and researchers are trying to answer these questions by gathering evidence, making hypothesis, and systematically investigating to support or reject the hypotheses.
While children and families participating in research studies may not receive direct benefit from the study, research will help us to understand better about what’s going on in our children with autism and what can be done to help them, so that we do not repeat the past, such as blaming parenting for autism or trial of therapies or medications that are proven to be ineffective or even harmful.

What should we consider before participating in research?

Research cannot be done without participation of individuals with autism and their families. Researchers may not able to answer research questions when they do not have enough participants. Most research studies require dozens and sometimes several hundreds of participants to be able to answer questions.

When you decide to contribute to the research, you should be informed:
  1. You may not receive direct benefit from the participating in the study. It’s because the study is just to learn more about what is going on with our children with autism (e.g., how much physical activities your child is doing per typical day) or it’s because your child is participating in a clinical trial study that requires half of participants to be randomly assigned for the “placebo” group. While your child or family may not receive direct benefit, your participation will result in better understanding and may also potentially lead to a new treatment intervention (e.g., therapy or medication).
  2. Sometimes it takes years before researchers to be able to answer research question. It is not uncommon researchers to repeat the studies to make sure the results from the original study were not by chance. It is known that even with the best evidence, it may take years to develop new treatment intervention.
  3. Participation in research studies should be voluntary and after weighing risk and benefit ratio carefully.

Incredible Art Therapy Nonprofit Programs Changing Lives

We welcome guest author Brenda Kimble with her blog on Incredible Art Therapy Nonprofit Programs Changing Lives for Special Needs Kids.

It’s not just painting, and drawing, and beading—it’s about communication and an interactive involvement that is more than just a distraction from their situation or about putting in time. These incredible art therapy programs take place in locations like hospitals, schools, and community centers.

The limits of the programs are not necessarily set by the special needs kids as much as they are confined by the almost boundless creativity of professional educators and health professionals. This is matched by the passion of individual citizens who see a need and desire to stand in the gap, or who are committed to giving back because they or someone they love has benefited from such an initiative.

What are we talking about?

Focusing on the reality of special needs kids and their loved ones, these nonprofit programs provide both space and resources as well as qualified, professional assistance. These committed people dedicate themselves to shape the programs, share their expertise, and caring concern.

What does an art initiative for special needs kids provide?

If the program takes place in a hospital ward with seriously ill children, for example, patients and their visiting family and friends have a creative and intentional option for not only spending time with their sick loved ones, but doing something that may help keep the focus off the illness.

There guided activities create at least two tangible results: valuable communication in a difficult environment and a treasured gift to share.

Kids can express themselves through a range of art forms that they might otherwise have difficulty expressing, or they simply can’t communicate with words. Let’s look at some concrete, winning examples:

1. Tracy’s Kids

Founded in 1991, Tracy’s Kids has a proven track record of providing professionally facilitated art therapy for children and their families as they face the trauma of cancer and prepare for the time when they will be cancer free. The programs are directed by personnel with master’s degrees, and the art therapists are board certified. These dedicated professionals are part of the child’s treatment team and work alongside the medical professionals caring for the child and family.

Child-centered

Their stated goal is to “provide a child-centered, open studio approach for inpatients and outpatients and to interact with the children while they are receiving infusions and other treatments. We welcome the chance to work with siblings and parents because we know that the entire family is affected when a child has cancer.” Nowadays, recovery after treatment happens in the majority of cases, and a major component of Tracy’s Kids is to assist children and their families for the time after treatment.

2. Bonita Bead Boutique

The Bonita Bead Boutique takes a very specific approach to offering patients and their parents and other family members ways to connect with each other. They provide materials and resources for beading in hospitals, nursing homes, church groups, and migrant camps, for example. Their hospital-based initiatives include ProMedica Toledo Children’s Hospital and ProMedica Flower Hospital.

Connection-tested

Beading is unique in that it is straight-forward and extremely creative at the same time. People can connect with each other as they bead around a table; there is laughter, support and a shared experience. There is time for stories and fun as external distractions are filtered out; you focus on the task in front of you and interpret the message in the finished work of art you have created. 

Memories-driven

That valuable work of art will create memories of the struggle and the victories you experience and remember together. You’ll remember the shared times as well as the laughter and the tears. That is priceless.

3. Arts for All

When it comes to combining a wider range of art forms, Arts for All, out of Tucson, Arizona, shows the way. They add music and dance and ceramics and drama to their program that reaches out to children and adults with disabilities.

Skills-driven

Through their involvement, children and adults in after-school programs or in community-based events have the opportunity and guidance to increase their own sense of well-being and accomplishment through learning and performing one of those valuable art forms—often with an audience in public.

Training-driven

The Arts for All passion for developing people goes way beyond normal business hours. They provide summer and winter camps, after-school and school vacation care, and they combine their work with the opportunity for teenagers to learn and experience the dynamic of caring for and facilitating those with and without disabilities. 

Opportunity Awaits

It is clear that people with special needs can be engaged with creativity and significant activities that enrich their lives, create memories, and assist them and their families in adding meaning to their lives. These private, non-profit initiatives also remind us that taking time and having a plan, and then carrying out that plan over the years, makes a real difference for real people.

You can start your own initiative with people in your life and begin to create opportunities for growing together, developing new skills, and making memories. Sitting around a table, telling stories, laughing together, and creating a work of art that will last, shows the way for those who are close to us.

You can create birthday bracelets or prayer beads to wear with pride and remind you of the moments of creation. Imagine the spoken or unspoken joy the special needs child in your life will have when they see you wearing their creation. In years to come, you will all have visible reminders of those milestones at a moment’s glance or as you wear it around your neck or touch the stones in your pocket or purse.

The opportunities are there and are not reserved for the professionals. Their passion and effort are praiseworthy and can inspire us to be involved and to take note of the people and needs around us each day.

Brenda Kimble is a writer and stay-at-home mother of two daughters and a son, plus their beagle named Duke! She loves blogging, crafting, and spending time with her family. She is also a strong advocate for those with special needs and writes to give a voice to the often unheard.

 

Ask Dr. Emily – Teens With Autism and Driving

Welcome to the May edition of Ask Dr. Emily!

We often receive questions that we want to share with all our readers. To help with this, Dr. Emily Neuhaus, a clinical psychologist at Seattle Children’s Autism Center, will share insights in a question and answer format.

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Autism 205: Gender Diversity and Autism

This month’s Autism 200 series class is Autism 205: Gender Diversity and Autism: Exploring Identity, Healthcare and Advocacy

Instructors: Felice Orlich, PhD and Rachel Earl, PhD

Individuals may identify with a gender that is different from their assigned sex at birth or may not identify with traditional definitions of male or female genders. Given societal pressures for gender conformity, gender diverse children, adolescents and young adults may face particular challenges navigating their communities in a way that feels true to their affirmed gender identity, which can cause significant distress and mental health risks. The experience of being gender diverse in the context of autism is not well understood at this time, and is an area of important study for researchers and clinicians looking to provide personalized, gender-affirming care to patients and their families. We will review what is currently known about gender identity development for individuals with autism, balanced gender-affirming healthcare considerations and supports for patients and families. We will also discuss community resources and self-advocacy for those navigating gender diversity and autism.

Class Schedule: This class will be held Thursday, May 16, 2019, at Seattle Children’s Hospital in Wright Auditorium from 7:00 to 8:30 p.m. Please join us in person or watch on Facebook live. For more information see the  Autism 200 Series webpage.

Getting An Autism Spectrum Disorder Diagnosis – A Podcast

What to do when waiting for an autism evaluation? Pediatrician, Dr. Wendy Sue Swanson, and Jim Mancini, a speech-language pathologist and coordinator of parent education and support at the Seattle Children’s Autism Center, discuss the autism diagnosis process. Mancini shares his tips and recommendations for parents who may be on long wait lists.