Revealing your child's Asperger's Syndrome diagnosis to extended family members is an issue of disclosure. Sharing such information should occur in partnership with your child in order to determine how much or how little others need to know.
Do They Need to Know?
In weighing your decision, consider the following:
How often do you see these relatives?
If you see them only once or twice a year, is it necessary to say anything?
Can you foresee their reactions?
If there's potential for gross misunderstanding, how will you handle that?
If they are intrigued and interested, how will you handle that without breaching your child's trust about disclosure (sharing more than what you agreed upon)?
Can extended family members be entrusted to honor disclosure?
Can they treat the subject with sensitivity and respect?
In the long run, the pros may outweigh the cons, but you and your child may decide it's simply no one's business at present. So many children with Asperger's can artfully “pass” and blend for the duration of a day with family that any differences may go completely unnoticed given all the other distractions. (Is it possible that your child comes across as downright complacent when compared with some of the more flamboyant children and adults at some of those gatherings?)
Prepare for Their Reactions
If you decide it is appropriate to disclose information about your child's diagnosis, you may need to be prepared to deal with the potential for extended family members to show their ignorance (not a bad thing if they're open to education), overcompensation, or discomfort. You will need to consider how best to quell any situations that may arise from overreactions should your extended family express concern about the entire family being stigmatized by the diagnosis. They may openly express hopelessness for your child's way of being, deluge you with literature that focuses on cures or “quick fixes,” or, worse yet, confuse Asperger's Syndrome with autism or some other diagnosis. Passive-aggressive behavior may transpire if extended family members become increasingly distant due to their own issues in processing the information, or if they want to spend time only with your other children. The worstcase scenario may be if they exclude or uninvite you and your child from future family get-togethers. A better scenario might be if they are overly cautious — trying not to do or say the wrong thing. In the latter situation, there is, at least, a way to offer assurances and education.
Hopefully, your wisdom and savvy as a parent who is fast learning to be a strong and knowledgeable advocate will be of good service to you in setting the proper tone of sensitivity, respect, and unconditional love where extended family is concerned. In any case, to aid your child in surviving a day or more with extended family, you will wish to arm her with ammunition in the form of self-advocacy and coping skills prior to attending family gatherings.
You may be approached by friends and relatives who genuinely desire to learn more about Asperger's Syndrome. Hear them out and allow your intuition to guide you in how much you wish to be their single “point of contact” where all things Asperger's are concerned. You may want to let them borrow this book for starters or refer them to specific websites that you found of good service.
Agree upon the time duration of being there (and stick to it!), and ensure that your child has some materials related to her passion to quietly indulge in if she feels overwhelmed. Also be certain to locate an area where your child can retreat, undisturbed by others, to recuperate during much-needed “downtime.” Show her where it is and assure her that she may use it at will. Check with your family members in advance to find out what materials your child may access with their permission. Then, make sure your child knows where books, TV or videos, crayons, pen or paper, and Internet access can be found for solitary downtime activities. Other strategies that will be of enormous benefit in such situations will be discussed in detail later in this book.