After the Diagnosis: Who to Tell and What to Say

After the Diagnosis: Who to Tell and What to Say

Parents respond in different ways to a child’s special needs diagnosis. Some parents are devastated by the news. Many are relieved to have their suspicions confirmed. Some need time to think before taking action, while others want to do something immediately. But deep down, all of them are pondering two basic questions.

Who do I tell?

What do I say?

The answers to those questions may differ, depending on the implications of the diagnosis, the age of your child and her siblings, the dynamics of your immediate and extended family, and the make up of your friend, co-worker, and faith community networks. But the principles below can guide your decisions about who to tell and what to say after receiving your child’s special needs diagnosis.

Be Sensitive

Try to be sensitive when telling adult family members loved ones about your child’s diagnosis, even if accepting the situation is a challenge. Whenever possible, share the diagnosis in person. If you have to use a phone, think about how your loved one will react. If the news will be upsetting or confusing to certain family members and close friends, call your loved one’s pastor, friend or co-worker and tell him first. Ask him to be with your loved ones when you call them.

Be Selective

Who you tell is your decision. Depending on age, it could be your child’s decision, too. If the diagnosis could be misunderstood by others, or your child has strong objections to going public, you may choose to tell only a few people you trust completely. As a rule, the more people who know what you and your child are dealing with, the more support you’ll receive.

Be Age Appropriate

What you tell your child about the diagnosis depends upon her age, intellectual ability, and maturity. In general, follow these basic guidelines:

  • Use concrete language with preschoolers. Be honest, but not overly graphic. Tell your child only what will happen today or tomorrow.
  • Use concrete language to speak to elementary-aged children, also. Supply basic information. Be honest, but leave out extraneous details. Tell them only what will happen in the next week.
  • Treat junior and senior high-aged youths as you would an adult. They should be with you when the diagnosis is made. Encourage them to ask questions of the practitioner.
  • Speak to children with developmental delays in way that takes into account their level of functioning.

Use these guidelines when informing siblings of the child with special needs, also. Whatever the age of your child and her siblings, give them the opportunity to ask questions. Answer them honestly. If your answer is, “I don’t know yet, but I’ll find out,” be sure to come back with an answer. If you’re still hesitant about how to broach the subject, contact the children’s hospital nearest you and ask a child life specialist for more advice. If a child’s diagnosis is terminal, consider visiting first with a chaplain or someone from the pain and palliative care department (formerly called hospice) at a children’s hospital.

Be Prepared

As time goes on, be prepared to inform people you don’t know about your child’s diagnosis. The group Online Asperger Syndrome Information and Support (OASIS) created meltdown cards printed with information about autism and Asperger Syndrome. When their kids have a meltdown in public, parents can hand cards to strangers witnessing the event. (The inexpensive cards can be purchased at This idea can be adapted to almost any special need. One mom created similar cards for the birth anomaly our children have. (For more information, go to A Different Dream).

Whatever a child’s special needs, communicating the diagnosis is initially a puzzling task. Using these guidelines, you can decide who to tell and what to say to your children, other family members, friends, co-workers and even strangers. In the process, you’ll create a network of supportive, knowledgeable people able to help you move beyond the diagnosis to proactive advocacy on behalf of your child.

Photos by Pernell and Terence Yim

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