If parents say something like "my son has a disorder called Asperger syndrome" to a scout master, coach, or a neighbor, they may set their youngster up to be excluded or treated differently. But if they don't tell, there's the possibility that a sensory issue or misunderstanding could lead to some real problems.
Most parents with children on the autism spectrum want to know: "Should I disclose to others that my child has Asperger's or high functioning autism? If so, who should I tell, and how much information should I give them?"
The answer is threefold:
- There are times when full disclosure is needed.
- There are other times when only partial disclosure will suffice.
- There will be occasions when you should not disclose at all.
Let's look at each of these in turn...
1. Full disclosure: In those cases where an adult will be working closely - and frequently - with your child (e.g., babysitters, teachers, therapists), full disclosure would be necessary. Also, for those who will be having an ongoing relationship with your child over the years (e.g., siblings, grandparents and other close family members), full disclosure is needed. In both of these scenarios, certain people will be having a lot of contact with your child, so it is vital that they know as much as possible about the disorder and how it affects your child particularly. In this way, these individuals will know what to expect, how to help prevent issues before they arise, and how to intervene when problems do arise.
2. Partial disclosure: In those cases where an adult will be working with your child in a group context rather than one-on-one (e.g., a karate coach), or the relationship will be temporary (e.g., staff at summer camp), partial disclosure will usually suffice. For example, if your Asperger's daughter is taking karate lessons, she may do well most of the time. So, a partial disclosure could be: "Sarah is someone who really needs structure, so if you're going to make a change, it would help if you tell her before class. When things are unpredictable, she gets anxious and could have a problem." In this way, you are giving the coach a "heads-up" about a potential issue without divulging your child's actual diagnosis.
3. No disclosure: In cases where the information could be used against your child (e.g., telling your child's neighborhood friends or classmates), no disclosure is advised. Children can be cruel, and a child on the autism spectrum is often a sitting duck for the bullies. So, with the exception of siblings, your child's peers (i.e., those about the same age) are best left in the dark about his or her disorder. One parent stated, "I made the mistake of telling my neighbor that my son was 'a little autistic'. Ever since then, her children have started fights with my son on the bus and in the neighborhood. It got so bad that my husband and I would keep our son in the house. Since then we have moved. Now I don’t tell our neighbors who my son is (i.e., someone with Asperger's), but I have said to them 'he is a loner at times'."
Here's one exception to #3: In some cases, it may be appropriate to educate your child's class or school about AS and HFA. If you decide to disclose to a class, be sure to do some planning and preparation. Also, involve the school and your youngster's teacher. Some moms and dads choose to go to the school and make the presentation. Whether or not your child is in the room at the time is up to him or her. See how your youngster feels about it. Some will want to be there, and some won't. Some AS and HFA children even may choose to make the presentation themselves. If making a presentation like this is not a strong point for you or your youngster, you may be able to get a teacher, school counselor, or an outside professional to talk to the class. In any event, it may be in your child's best interest if people at the school -- students and staff -- learned a few things about autism spectrum disorders.
On another note, it is not recommended that parents give their AS or HFA child instructions to be silent about his or her disorder. In other words, if the child wants to self-disclose this (e.g., "I have high functioning autism") to a friend, neighbor or classmate, he or she should be permitted to do so.
Having said all of the above, the bottom line is this: The disclosure decision is up to you and your youngster. What's right for one family may not be right for another.