April 15, 2016
December 18, 2015
Links to activities:
October 06, 2014
July 30, 2014
June 11, 2014
Dr. Sumeeta Patnaik is the co-guardian and co-conservator of Vijay Patnaik. She is currently employed at INTO-Marshall as the Academic English Coordinator. Dr. Patnaik is a graduate of Marshall University with a Doctorate of Education.
Types of Stress on Nonautistic Siblings
Family life for siblings of children with autism can be potentially stressful. The Autism Society of America describes the types of stress commonly faced by siblings:
- Jealousy over the time parents spend with the autistic sibling
- Embarrassment over any public displays of autistic behavior and routines that make the family stand out from peers
- Frustration over social interaction difficulties with the autistic sibling
- Stressed about being the target of the autistic sibling's aggressive behavior
- Worry about parents being stressed
- May feel a need to overcompensate and overachieve in order to please parents and get more attention
- Fear of serving a future caregiver role to sibling with autism
- Admiration for sibling with autism
- Proud to help autistic sibling
- According to a Time.com article, "Autistic Kids: The Sibling Problem", a significant number of siblings of people with autism go into autism support service careers.
- Siblings need communication that is open, honest, developmentally appropriate, and ongoing.
- Siblings need developmentally appropriate and ongoing information about their siblings’s ASD
- Siblings need to learn interaction skills with their brother or sister with ASD
Gold, N. 1993. “Depression and social adjustment in siblings of boys with autism”, J Autism Dev Disord. 1993 Mar; 23(1):147-63.
November 26, 2013
In the mid-1990s – a world of antiquities now, I know– my friend Cynthia Garcia published a wonderful essay in which she explained her disdain for being called “Mom” by professionals. Because the essay was published prior to the widespread use of that series of tubes known as the Internets, I can no longer find a copy of that essay. But plenty of other sources tell me that this shorthand phrase commonly used by professionals can be insulting to the parents of those we support.
Sophie’s mother explains it well in her article found at this link.
Over the years, I have variously been referred to as Mom in IEP meetings and at doctors' offices, and I have to say that it always makes my skin crawl. I find it undignified, in a way, a word that doesn't exactly conjure the same respect as Mother, for example, . . . I want my children to call me mom, and I even don't mind being referred to as Sophie's mom or Henry's mom or Oliver's mother. [B] I have to say that when I'm negotiating with a doctor over my daughter's healthcare needs, or fighting an insurance company or discussing my daughter's education in an IEP meeting, calling me Mom as in Mom has some concerns about such and such or Mom, how are we doing today? -- well, I'm going to bristle. The word is more of an endearment, to me, than an address. If we're going to continue down this much-welcomed path of patient-centered care where parents are equal partners in the care of their child, particularly those with special healthcare needs, we need to address one another by our names.Research shows many parents agree. In their manuscript “Don’t Call Me Mom: How Parents Want to be Greeted By Their Pediatrician,” Amer and Fischer (2009) describe the expectations parents have in regard to relationship building with their pediatrician. 88% of the parents in the study said the use of their name by the pediatrician during the initial greeting was integral to the development of their therapeutic relationship; however, only 14% of residents and 24% of attending physicians did so.
We who work in the business of supporting others spend a significant amount of time discussing person-centered values and language, so it makes sense to me that our professional culture really should be primed to understand and accept this concept. Yet many in the human service community continue to be less than thoughtful of the issue raised by Mrs. Garcia, and insensitive to how we interact with folks who perceive our communication gaffs in the same light as Sophie’s mother described:
Let's all do our part in 2014 to ensure this gaff doesn't continue to be a part of our professional culture.
October 04, 2013
August 19, 2013
In addition, please check out the video: "Being an Autism Sibling", below. Additional videos on sibling issues have been added to the resource list to the tight of this page.
June 13, 2013
You can hear the 28 minute interview at this link.
Brian recently authored an article for the ASA's Advocate on the topic, and will speak at the upcoming ASA national conference held in Pittsburgh in early July, 2013.