"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.
Agree on how long you will attend family gatherings – and stick to it!
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.
Check with your family members in advance to find out what materials your son may access with their permission.
Ensure that your son has some materials related to his special interest (e.g., iPod, iPad) to quietly indulge in if he feels overwhelmed.
Make sure he knows where books, TV or videos, crayons, pen or paper, and Internet access can be found for solitary downtime activities.
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).
Autism spectrum disorder (ASD) is often an invisible disorder. Because it is so subtle, it can go undetected. It is very likely that there many adults on the autism spectrum living and working in your community who are un-diagnosed.
It is hypothesized that certain types of individuals with “ASD-like” traits (e.g., smart, but antisocial) attract one another, leading to such couples having kids with the same traits – but magnified due to an overload of genes. It is estimated that the disorder correlates with a genetic component more apparent than other disorders.
About 33% of fathers of kids with ASD show signs of the disorder themselves – and there appear to be maternal connections as well. This information increases the likelihood that it may be present in your own family. Think about your youngster's lineage. Are there - or were there - brilliant and creative, but blatantly eccentric, family members?
Depending on your personality and the strength of your coping skills, this may be either a relieving or a disturbing revelation to ponder. If the diagnosis is received with a negative outlook, you may slip into a period of guilt or self-condemnation. You may even find yourself unjustly bearing the brunt of blame induced by your partner.
Moms and dads of kids on the autism spectrum do tend to reflect more stress tied to anxiety and depression when compared with moms and dads of neurotypical (i.e., non-autistic) kids. But never forget that the disorder is a naturally occurring phenomenon – and it is no one's fault. So, avoid believing pessimistic, self-defeating “autism stereotypes” in favor of focusing on the positives associated with this challenge.
One father reported that learning of his son’s diagnosis was “liberating,” because it wasn't until then that he realized he, too, had the disorder. He defined the experience as “reaching the end of a race to be normal.” At long last, he came to a point of acceptance, and was now in a position to voice his “quirks” using the framework of ASD. This father’s journey was challenging, but fortunately, his wife was very supportive throughout. However, not all families deal the experience of uncovering the disorder in themselves as well as this.
There are married couples that simply don’t do well under real (or perceived) pressures of raising a youngster with a different way of being. Families of kids on the spectrum are no exception. Educate and inform yourself - and your husband or wife - early on. Connecting with other moms and dads in similar situations can help cast out destructive, stigmatizing myths and stereotypes.
If your child has been diagnosed with ASD, and you suspect that you or your partner also has the disorder, consider the following suggestions:
Arm yourself with knowledge and gather as much information as you can from the Internet or the resources.
Avoid the “blame game” (e.g., “It's your fault our son is this way.”).
Avoid the “guilt game” (e.g., “It must be my fault.”).
Because you are both still assimilating your youngster's experience, allow yourself and your partner time to process this new twist on the situation.
Broach the subject with your partner by asking leading questions that will provide opportunity for reflection (e.g., “Do you think our son gets his love of history from your side of the family or mine?”).
Discuss marriage counseling or other professional supports with your partner.
Offer to research the disorder with your partner or to provide your partner with whatever literature you've already gathered.
The conversations you have about it in the family should build slowly and incrementally.
Understanding ASD as a probability for you and your partner will be a learning experience for the both of you. It can create marital stress and chaos, or it can be an opportunity to strengthen and enhance your relationship. It’s your choice!
As one parent stated, "How interesting. My husband and I have agreed that we share a preponderance of traits and that is probably what attracted us to each other. Thankfully, we view our son's difference as a positive. I love that he is only seven and has taught me about the history of World War II. He is definitely a challenge, but we love him for who he is and not is spite of it."
Resources for parents of children and teens on the autism spectrum:
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