The Autism Blog

Lisa L Wasikowski is an ASD self-advocate who lives in the Seattle area with her husband and daughter.  We are grateful for her generosity in sharing her personal journey, insight, and reflections with Autism Blog readers. 

Someone asked me to describe my ASD “coming out story”. Well, this is effectively it.  I’ve told a handful of people, and currently wonder how to deal with regrets.  When you’re the kind of person who lives as an open book, something like this won’t stay secret for very long, and since some people know, and people like to discuss, I’m sure it’s leaked beyond my pool.  Now, it’s in the public eye of discernment.  Take it for what it’s worth to you, and kindly move on.  Read full post »

Welcome to the December 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.

Read full post »

As we celebrate the 10 year anniversary of the Seattle Children’s Autism Center being open, Dr. Gary Stobbe shares his reflection on the evolution of our programs, and his hope for the future:

I think back to when the Seattle Children’s Autism Center was first launched in 2009, I still remember one of our first staff meetings where clinicians from backgrounds in psychology, psychiatry, neurology, developmental pediatrics, and speech therapy were all in attendance. All of us had been providing services for people with autism, but we had been doing the work in “silos.” We had dreamed of the day of working as a team, learning from each other, and coordinating care for people and families impacted by ASD. When that day was realized, it was an even better experience than we had imagined! The complexity of ASD makes this multidisciplinary approach to care essential, and Seattle Children’s Autism Center was built with this in mind. Since our beginning, we have welcomed over 4500 families through our doors, offering over 22,000 visits annually.  

Another important feature in autism care is recognizing that support needed often falls into the “uncompensated” care category. This uncompensated care is one of the reasons why Seattle Children’s is the organization in the Pacific Northwest best suited to provide autism care, as this is at the heart of Seattle Children’s mission. Partnering with our community through philanthropy and outreach means that we are on this amazing journey together, providing care for all people regardless of their ability to pay.   We simply would not be where we are today without the belief, commitment and support from our community, and for that we are eternally grateful.

We are fortunate that ASD care seems to draw a special type of service provider and clinician. The team work, the willingness to go the extra mile, the positive attitudes, and the unselfish goal of providing service and care to those in need, all brings the staff at Seattle Children’s Autism Center closely together. We feel privileged with the gift of being invited into the lives of so many individuals and their families.

In 10 years, we have accomplished so much together, yet we have so much unfinished work still ahead. I have seen so much progress towards the goal of getting everyone with ASD the care they need, yet we clearly have not met many of our goals, including the most glaring challenge of access to diagnoses in a timely fashion. Initiatives underway to address the unmet needs excite me as much as when we first launched Seattle Children’s Autism Center. I feel the future is brighter than ever, and I am thrilled to be on this journey with my colleagues, the families, and our amazing Pacific Northwest community!

A special acknowledgement and heartfelt thanks to the following staff who have been with us at the Autism Center since the very beginning;

• Carola Meyer
• Anita Wright
• Jen Mannheim
• Amber Persons
• Katrina Davis     
• Gary Stobbe
• Jan Bersin
• Felice Orlich
• Dora Hall
• Stephanie Pickering
• Lindsey Miller
• Mariam Araujo
• Sara Webb
• Raphe Bernier
• Deb Gumbardo

For this blog, I invite Dr. Emily Neuhaus (who also blogs under “Ask Dr. Emily”) to join me in talking about her recent paper — Gastrointestinal and Psychiatric Symptoms Among Children and Adolescents with Autism Spectrum Disorder.

With Dr. Raphe Bernier (Executive Director of the Seattle Children’s Autism Center) and Dr. See Wan Tham (Anesthesiologist and specialist in GI pain management), we examined the relation between GI problems and other problem behaviors in children with ASD. To do this, we used the large Simon’s Simplex Sample (SSC) data set– which is a data set of 2,800 4 to 18 year old children and adolescents  with ASD, and includes detailed information about the child’s symptoms, adaptive functioning (ability to handle everyday tasks like getting dressed, eating, grooming, etc.), medical concerns, and genetic events. The paper is available free through Frontiers in Psychiatry.

Why examine the relation between GI symptoms and psychiatric problems? The actual prevalence of GI problems in children with autism varies wildly across different reports – some estimates are relatively low, suggesting that 15-20% of children with autism experience GI difficulties, while other researchers have found rates of GI problems as high as 90% (see Neuhaus et al., 2018). While the links between GI problems and ASD is unclear, it is clear that children with ASD have elevated rates of GI problems.

Individuals with ASD are also at elevated risk for developing additional psychiatric problems across the lifespan with over 92% of children aged 4-14 with ASD reported as meeting criteria for attention-deficit/hyperactivity disorder, oppositional defiant disorder, anxiety, or mood disorder (Brookman-Frazee et al., 2018).

Given that GI problems can cause significant pain and disruption of daily activities, might they also be playing a role in whether or not children develop other psychiatric problems?

What are GI problems?

In the SSC sample data set, 7 GI problems were included in our analyses– constipation, diarrhea, severe abdominal pain, gastro-esophageal reflux, vomiting, excessive gas, and bloating. We limited our analysis to symptoms that occurred after 36 months of age, were recurrent, not attributed to illness, and caused “significant bother”. We examined psychiatric problems via parent report of internalizing (anxiety and depression), externalizing (aggression and rule breaking) and self-injurious behavior (e.g., biting or hitting self). (We will focus on externalizing and self-injury in this blog.) In addition, we considered child characteristics such as race/ethnicity, sex, age, extent of ASD symptoms, IQ (verbal and non-verbal), and adaptive behavior; as well as family factors such as household income.

Results

 Overall, 37.7% of the children with ASD were reported as having at least 1 GI problem, including constipation (24.1%), diarrhea (10.6%), and gas, reflux, and abdominal pain (~5-6% each). Moreover, 22.8% of the children had clinical levels of externalizing problems (aggression and rule breaking), suggesting that these were meaningful issues for those children and their families.

 What childhood characteristics were related to externalizing problems (aggression and rule breaking) and self-injury? In children aged 4-18 years, children with more ASD symptoms, better language, lower adaptive skills, lower household income, and more GI problems had more externalizing problems (aggression and rule breaking). Similarly, more self-injurious behavior was also related to more ASD symptoms, lower adaptive skills, and lower household income. In the younger group (4 to 9 years) (but not in the older group aged 10 to 18 years), more GI problems were also related to self-injury.

 Of note, a similar study by Rattaz et al. in 106 young adults with ASD found that more autism symptoms and more GI problems predicted the development of more stereotypy behaviors in adulthood.

 Thus, in children with ASD, GI problems may be contributing to the presence of externalizing behaviors in children with ASD, and self-injury in younger children with ASD. This is important to consider in providing mental health care to children and families with ASD, since addressing GI problems could be a helpful part of reducing behavior problems.

While we can’t determine if GI problems play a role in whether or not a child will develop other psychiatric problems – we would need a longitudinal study to do this– GI problems likely negatively impact daily living and quality of life.

Resources

Another resource for an update on GI issues in ASD is the recent ASF podcast by Alycia Halladay.

 References

Brookman-Frazee L, Stadnick N, Chlebowski C, Baker-Ericzén M, Ganger W. Characterizing psychiatric comorbidity in children with autism spectrum disorder receiving publicly funded mental health services. Autism. SAGE PublicationsSage UK: London, England; 2018 Nov;22(8):938–952. PMID: 28914082. https://doi.org/10.1177/1362361317712650

Halladay, A. (2018, Nov). Scientist know in their gut how the GI symptoms are linked to autism.

https://asfpodcast.org/archives/660

Neuhaus E, Bernier RA, Tham SW, Webb SJ. (2018). Gastrointestinal and Psychiatric Symptoms Among Children and Adolescents With Autism Spectrum Disorder. Frontiers in Psychiatry. 9:515. PMCID: PMC6204460. https://www.frontiersin.org/article/10.3389/fpsyt.2018.00515/full

Rattaz C, Michelon C, Munir K, Baghdadli A. Challenging behaviours at early adulthood in autism spectrum disorders: topography, risk factors and evolution. Journal of Intellectual Disability Research. Wiley/Blackwell (10.1111); 2018 Jul;62(7):637–649. PMID: 29797498. https://onlinelibrary.wiley.com/doi/abs/10.1111/jir.12503

“Hakuna Matata- what a wonderful phrase. It means no worries….”.

For many families living with autism, something as simple as going to a movie, or out for dinner can present challenges, filling families full of worry about the what-ifs. Fears about tantrums, meltdowns, yelling or humming and the responses from those in the community can at times, make options for family activities feel limited. 

Read full post »