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When Should Parents Disclose Their Child’s Diagnosis?

Once your child has a diagnosis of autism, one of your first questions may be, “So who do I tell?”

The best rule of thumb: If your child will require a level of accommodation, modification, support, service, or just patience and understanding in a certain situation, then telling someone about the diagnosis can help make this happen and smooth things out for all involved.

We have all been in a situation when unexpected or inappropriate behaviors associated with autism made others misunderstand, feel uncomfortable, or even judge us as parents or judge our children. It is not necessary to tell everyone you meet or know that your child has autism. But if not saying anything will put your child in jeopardy of having a meltdown or put others at a disadvantage in interacting with your child, it is worth learning how to disclose the diagnosis effectively and diplomatically.

Parents know that to get services from schools or through Medicaid, it is essential to provide extensive documentation of their child’s autism diagnosis. In our day-to-day lives, sharing information about a diagnosis is much less formal and complete. What if you need a simple accommodation in a given situation? What if you are in a setting where your child’s behavior warrants an explanation? What if you just want some people you are with to accept your child for who they are, cut you and your child some slack, or even lend a helping hand?

You don’t have to be an expert on autism or have a detailed explanation of autism in most situations. You just need to provide the information needed for those involved, including your child, to have a successful experience or interaction.

 

“Passive” Disclosure

“Passive” disclosure is a technique that compensates for the fact that autism is often an invisible disability. I use the word “passive” because you do not directly approach someone regarding your child’s diagnosis but still communicate that there may be differences in interactions. You do this by:

  • Using visual supports and strategies when in the community (the same ones you use at home): Whether it is using a visual schedule, some sign language, or providing fidgets, these actions can help people around you realize that your child may be processing the world differently and prepare them should your child do something unexpected. It is handy when you are in public or with a group of people who would benefit from knowing your child has autism in order to feel at ease themselves and to understand why you might be receiving some accommodations. Of course, while these actions might draw attention to your child in the moment, they may also prevent attention for inappropriate behaviors that is headed off by these strategies. I have done this pretty much everywhere, including in restaurants, in airports and on flights, in coffee shops, and while shopping. (For more on visual supports, read this previous blog post or this one.)
  • Wearing autism gear: Some parents will choose to wear a T-shirt with a message about autism in public or put one on their child. These are considered passive as well because they do not involve directly disclosing but still help others know that autism is in the vicinity. (Find some autism apparel in the Autism Society of North Carolina Bookstore.)
  • Leaving behind a note: The Autism Society of NC offers “Helpful Hints for ASD” cards that describe some common characteristics of autism and how to support someone with ASD. These are great to leave behind if you need to make a quick departure or to hand to someone when situations are awkward. (Find them at the ASNC office near you or email us.) You can also make your own business card that states “My Child Has Autism” and has a sentence or two describing what that means or any other general message you would want to convey.

 

“Active” Disclosure

“Active” disclosure is when you verbally or in writing tell someone about your child’s diagnosis to secure an accommodation or just some understanding and patience in a given situation. The key with more active disclosure is to do it ahead of time whenever possible and to highlight just how autism will affect your child’s behavior or participation in the specific setting or situation. It should also note accommodations that would help your child be more successful in that situation.

Here are some examples. Note that none of them explain what autism is, but they identify what the child’s needs are as they relate to autism:

  • Storytime at the local library: My child loves hearing stories and being around other children. But I wanted you to know that my child has autism. I will bring a mat to help her know where to sit, and she will be holding a fidget to help her focus. She may get up to move around. Just know that she is not intentionally being rude and will still be enjoying the storytime, even if she doesn’t seem to be paying attention. I will be present to support her as well. Thank you so much for your understanding.
  • Neighborhood pool: I wanted you to let all of the lifeguards know that our son has autism. He loves the pool and is a good swimmer, but he may scamper around the edge of the pool flapping his hands. If the lifeguards see this, it would be helpful if they would first say his name and then say “walk please” to get him to stop. He does better when told what to do than what not to do.
  • Attending a summer program of high interest: I have registered my son for LEGO Camp, and I wanted you to know he has autism. My son might not look at you when you are giving instructions or when being addressed by a peer, but he is listening. It would be helpful for him to see a written schedule for the day so he knows what is expected of him, what time lunch is, etc. I can provide a dry erase board for this purpose. He is used to that strategy. He may also need extra time to complete a project and be happy to work alone. He is a really neat kid. We hope you enjoy him.
  • Dining out: Could we please be seated along the edge of the seating area? Our daughter has autism and it is quieter for her on the edges of the restaurant. Also, could you let our waiter or waitress know that we would like for her food to be brought out as soon as possible?

 

“Reactive” Disclosure

“Reactive” disclosure is similar to active disclosure but is done when you thought you could get by without disclosing or just by using passive disclosure strategies but something unusual or inappropriate happened that required some additional understanding and possibly accommodation.

An example of this is when I took my son to a store to buy some shoes once when he was little. It was our first time to this particular store, and as soon as he got to the door, he balked and became agitated. The store manager noticed his distress, and I quickly explained that he had autism and the sight of the carpet was making him anxious because he didn’t know when it would be vacuumed. He didn’t want it to be when he was there. At the time, this was an ongoing and difficult anxiety for him.

The store manager appreciated my candor and offered to let him see the vacuum cleaners in the storeroom so he could see that they were not plugged in. So we all walked to the back of the store to the storage closet. My son spent some time with the vacuums and then was willing to try on shoes. We went back to that store for a number of years, and every time, the manager would greet him and take him back to say hello to the vacuums.

In most cases, disclosure is about your child with autism being successful wherever they are. Disclosure, when done properly, assures that your child has their needs met by others. It also can facilitate a positive attitude toward autism on the part of others. When our extended families, our friends, our neighbors, and those in our community have positive, successful interactions with our children on the autism spectrum, we forge a future for them that involves increased inclusion and opportunities. And that is really what we want for our kids.

 

Nancy Popkin can be reached at npopkin@autismsociety-nc.org or 704-894-9678.

 

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