Revealing Your ASD Child's Diagnosis to Other Family Members

By Mark Hutten, M.A.
"How should we go about telling my parents (and other family members) that our son has been diagnosed with autism (high-functioning)? They have always thought his behavior was odd. We believe strongly they should know so they can help to one degree or another with his special needs."

Disclosing your youngster's diagnosis to other family members (e.g., grandparents, aunts and uncles, cousins, etc.) is a sensitive issue. Divulging this information should occur in partnership with your high-functioning autistic youngster in order to determine how much - or how little – extended family members need to know. 

In weighing your decision, ask yourself the following:
  • Can other family members be trusted to honor this disclosure?
  • Can they treat the subject with sensitivity and respect?
  • Can I foresee their reactions?
  • How often do I see these relatives?
  • If there's potential for misunderstanding and conflict, how will I handle it?
  • If they are intrigued and interested, how will I handle that without breaching my youngster's trust about disclosure (i.e., sharing more than what we agreed on)?
  • If I see them infrequently (e.g., only once or twice a year), is it important to say anything?
 
In the end, the pros of disclosure may outweigh the cons, but you and your youngster may decide that it's simply no one's business. Many high-functioning autistic (HFA) kids can skillfully “pass” and “blend in” for the duration of a day with extended family such that any differences may go completely unnoticed given all the other distractions.

If you decide it’s appropriate to share information about your youngster's diagnosis, you will want to be prepared to deal with the potential for other family members to show their ignorance (they may simply need to be educated about the condition), overcompensation, or discomfort. You will need to consider how best to control any situations that arise from over-reactions should they express concern about the entire family being stigmatized by the diagnosis.

For example, they may:
  • become increasingly distant due to their own issues in processing the information (e.g., they may only want to spend time with your other kids)
  • confuse HFA with severe Autism or some other diagnosis
  • exclude you and your youngster from future family get-togethers
  • express excessive and unreasonable concern (e.g., they may think that ASD is life threatening, contagious, etc.)
  • focus on a cure or a “quick fix”
  • offer assurances and support
  • be overly cautious (e.g., trying not to do or say the wrong thing)

So, be prepared for the full range of reactions from extended family.
 

Additional tips:
  1. Agree on how long you will attend family gatherings – and stick to it!
  2. Be certain to locate an area where your son can retreat, undisturbed by others, to recuperate during much-needed “downtime.” Show him where this “safe place” is, and assure him that he may use it at will.
  3. Check with your family members in advance to find out what materials your son may access with their permission.
  4. Ensure that your son has some materials related to his special interest (e.g., iPod, iPad) to quietly indulge in if he feels overwhelmed.
  5. Make sure he knows where books, TV or videos, crayons, pen or paper, and Internet access can be found for solitary downtime activities.
  6. To help your son in surviving a day or more with extended family, you will want to arm him with self-advocacy and coping skills prior to attending family get-togethers.

Sharing information about your youngster’s disorder with neighbors, acquaintances, or total strangers in your community is no different than the process of determining when, where, and how to share the same information with extended family. Weigh carefully the pros and cons that may come from disclosing this information. 
 
Ideally, your HFA child should be encouraged to be his own advocate as early as possible in order to decide how much or how little to tell others about his condition (if it's even necessary at all).
 
 
 

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