How to Disclose Your Child's Autism

Autism Bow Tie

Should your child’s autism spectrum diagnosis be general knowledge?  Who should know?  Who shouldn’t?   How and why should you tell?

For some families, these questions may seem ridiculous.  That’s because, in some cases, it seems that the symptoms of autism are so obvious that no one could possibly miss them. For parents in this situation, it may be surprising to learn that some observers can mistake symptoms of autism for poor discipline – and make judgments accordingly.

For many other families, the question of disclosing an autism diagnosis can come up on a regular basis. A child with high functioning autism may be able to “pass” for typical in certain situations, so why rock the boat by disclosing a diagnosis that may prejudice others against him?  Even some children with moderately severe symptoms may be able to “pass” under the right circumstances.

In the best of worlds, disclosure should be a good thing. It should provide teachers, coaches, directors, counselors, and others with the tools they need to help your child succeed in the community.  And sometimes that really is the case. 

But parents who worry that disclosure could cause unnecessary grief may have a point: some adults are so uncomfortable with disabilities that even the thought of autism becomes overwhelming. If that describes the Little League coach who will be coaching your son, would it really be helpful to explain his diagnosis?

Depending upon the circumstances, there are several different options for disclosure.  Perhaps one of these will be right for your situation.

  1. Disclose Challenges without Disclosing the Diagnosis.  If you’re the parent of a child with high functioning autism, you may have the option of describing your child’s particular challenges without ever using the “a” word.  This can be helpful when dealing with adults who are anxious around disabilities. For example, you might describe your child’s sensory challenges by saying “Billy can sometimes get rattled when kids are really loud; I gave him these headphones to use when that happens.  Don’t worry: he knows how to use them – I just wanted to give you a head’s up!”
  1. Disclose a “Difference.”  If symptoms will be obvious but may not be disabling in a particular situation, you may want to describe your child as “different” or “marching to her own beat.”  For example, “Emily is eager to be a Girl Scout, and she’ll do a great job – but you might notice that she likes to work alone rather than join a group.  I hope that’s ok; it helps her to concentrate better.”
  2. Disclose to the Right Person.  In many settings – in school, church, or the community – there are people who “get” autism and people who don’t.  For example, the director of the local YMCA may be uncomfortable with disabilities while the camp director is eager to find the right set of accommodations to ensure each child’s success.  Why create problems for yourself and your child by talking with the Y director about your child’s needs when the camp director will become a champion for your child throughout the Y?
  3. Disclose When It’s Necessary and/or Helpful.  Not everyone in the world needs to know that your child has a particular diagnosis – because it’s really not relevant to everyone you meet.  Yes, your child’s new doctor needs to know, but no – there’s no reason to share with colleagues at work.  Yes, your school needs to know, but depending upon your child’s particular level of challenge you might not need to say a word to your neighbor.  If it’s not likely to be helpful – and it could create a problem – why go there?
  1. Disclose in New Situations.  While there's no particular need to make an issue of your child's autism at school or in situations where your child is already known, you may want to be sure that his diagnosis is understood in new settings. You may also need to explain your child's particular symptoms in order to avoid misconceptions about autism.
  2. Disclose Daily Through Cards and Clothing.  For some people, and in some situations, it may be critically important (or just preferable) to let the world know about an autism diagnosis. Some parents purchase shirts for their autistic children with slogans such as "I'm Autistic - What's Your Excuse." Others purchase cards that they or their children can distribute which explains the child's behaviors. These may be used in difficult situations ranging from public meltdowns to encounters with the police.

The choice about what to disclose and when to disclose it is, of course, personal. For many people, autism is a source of pride; for others it's a private matter. Whatever your choice, it's important to be sure that people who need the info HAVE the info.

Continue Reading