Reader Question Response- iSTAR

Here is a reader question that has been submitted by the iSTAR research project at the University of Utah which focuses on educational intervention for high functioning autistic children that are school age and young adults. The question is as follows:

             

Do you think children with autism should be told about their disability/diagnosis and if so when? My experience is that the some parents we have worked with don't want to discuss autism with their child and this makes it hard for us given that the focus of our iSTAR project is autism!

Children on the autism spectrum whom have been diagnosed with high-functioning autism or Aspergers should be given information about their disability/diagnosis; however, parents should be cautious in how this information is given to their child.  By withholding information from a child about their Autistic diagnosis and not helping them understand their limitations, harmful consequences (low self-esteem and self-acceptance) can be produced as the child becomes an adult.   Parents may choose not to tell their children about their diagnosis for several reasons which can include the fear that the child will not understand because of language limitations; the child will become angry, depressed or the child will think of themselves as a failure with no positive outlook for the future.  These problems can certainly happen whether a child is told or not; however, the probability is greater when a child has not been told.  Autistic children may know they are different, but because they are delayed in certain developmental areas, they may come to the wrong conclusion about their perceived differences. 

Parents should be aware that there is not an exact time or age that is appropriate to tell a child about their Autistic diagnosis.  If a parent begins too early, the child may become confused.  If the child is older, they may become extremely sensitive to the fact they are different.  Preferably parents should allow their children to give signals of when they are ready to comprehend information about their disorder.  Questions such as “What is wrong with me?”; “Why can’t I be like everyone else? or “What is wrong with everyone?” are clear indications that a child is looking for clarification and guidance.

To place a positive approach to answering these questions which in essence is telling a child about their disorder, parents should develop an environment that projects positive discussion over a person’s learning style, temperament, personality, sensory issues and idiosyncrasies.  Also, use language that “emphasizes strengths in relation to challenges”.  When someone in the family does something well, point it out as an asset.  Make the connection that everyone (children and adults) excels in certain areas; this should promote non-judgmental comparison and a possible mentoring environment.  Discuss how to use strengths to balance challenges, i.e. poor penmanship but loves to draw.  And finally, explain in realistic terms that everyone has challenges either with their brains, emotions or physical capabilities.    

When Autistic children are present in the classroom but are unaware of their diagnosis, educators are placed in a precarious position.  These children may often turn to their educator to answer questions about themselves or about their peers especially if their parents are unwilling to share information.  Because of a parent’s reluctance, an Autistic child may feel trapped within a confusing and frustrating world with no positive outlet.  If however, a child is aware of their diagnosis, educators are then able to focus on the strengths of the child and provide a teaching environment that promotes success not failures.   

References:

Connie. (2012, March). The Easy Way to Tell a Child They Have Autism. [Web log comment]. Retrieved from

            http://parentcoachingforautism.com/2012/03/telling-a-child-they-have-autism/

Robison, J. (2011, April 18). When Should You Tell a Child They Have Asperger’s? [Wed log comment].  Retrieved from

            http://www.huffingtonpost.com/john-robison/when-should-you-tell-a-ch_b_849864.html.

Wheeler, M. (2003) “Getting Started: Introducing Your Child to His or Her Diagnosis of Autism or Asperger Syndrome”.  The Reporter, 9(1), 1-5.  http://www.iidc.indiana.edu/?pageId=362.

 -Elizabeth Holt