To Tell or Not to Tell

Sharing for Support

Receiving a diagnosis for your child can be an emotional experience, especially if it was preceded by a long string of concerns and evaluations. While the diagnosis provides clarity, it’s followed by the process of determining if and how to share it with others.

It can be a tough next step to protect your child’s dignity, build a support system, and navigate other people’s reactions – all while processing your own evolving emotions.

“Sharing as much as possible is usually helpful,” says Mrs. Surie Morgenstern, director of Pillar Support at Hamaspik. “It lightens the burden and opens doors to real support.” While she encourages sharing, she emphasizes that it should happen at the pace and level of detail parents feel comfortable with.

Pillar supports parents of newly diagnosed children, and Mrs. Morgenstern has spoken with dozens of parents trying to decide what, with whom, and how to share. She’s seen that sharing a diagnosis gives parents access to information, direction, and referrals, particularly when you share with people who have experienced something similar. 

Mrs. Morgenstern recalls a mother of a newly diagnosed child who connected with another parent whose child had the same condition. The more experienced parent shared, “Children with this diagnosis often develop a specific heart issue; you may want to look into it.” At her child’s next cardiology appointment, the mother brought it up. The doctor, impressed by her knowledge and advocacy, agreed it was worth checking into, and ran the necessary tests.

Opening up also eases the emotional weight and isolation parents often carry, and invites practical support that family and neighbors wouldn’t otherwise know to offer.

One Hamaspik mother described the difference it made. "I used to hide my son's diagnosis… Once I started explaining what was going on, things got easier."

Another shared that when she began opening up about her child’s diagnosis, the unsolicited parenting advice finally slowed down. Some comments still sting, but as she put it, “I’d take those comments over discipline recommendations any day.”

Parents have the right to choose who to tell, when, and how much. That comfort level can grow over time, and so can the circle of people you choose to tell.

Protect your Privacy

Sometimes you want to share something, without disclosing the full diagnosis. That’s valid too. Mrs. Morgenstern recommends phrases like:

“We’re doing some testing and working with doctors,” 

“He has some developmental delays, and we’re working with specialists,” 

“He’s presenting like an autistic child. We’re going for evaluations.”

You can even say, “The technicalities and alphabet soup won’t mean much to you.” 

You can also describe what’s happening without naming a diagnosis. Reassurance that the situation is being addressed can ease pushback and follow-up.

And if the diagnosis is rare, extremely personal, or still uncertain? You can still share without being specific. As one mother explained: "I am very open about the special schools my kids go to, and people can draw their own conclusions."

When Sharing Hurts

While many parents find relief and support when they open up, others face judgment or rejection. That can be incredibly painful for parents at such a vulnerable time – particularly when it comes from close family members. 

Mrs. Morgenstern has seen this, and her response is encouraging. “They will come around and love your child.”

Hurtful comments usually are usually a result of the other person’s grief or uncertainty about what to say. When necessary, Mrs. Morgenstern encourages making your position clear. “I understand this is painful for you. We’re going to love this child, and I’d appreciate only helpful comments. If that’s not possible now, I’d rather not discuss it.”

Support is essential in an experience like this. For those struggling with family members who can’t accept a diagnosis, personalized guidance can help in navigating those painful dynamics. And for relatives who are struggling with the diagnosis themselves, support can help them work through their own fear and discomfort.

Set the Tone

If and how a parent shares a diagnosis shapes how others respond. One mom shared, "I feel that if the parent is comfortable and forthcoming, it sets the tone."

“You don’t have to make grand announcements,” Mrs. Morgenstern reminds parents, “You just want to shape the narrative. You don’t want people whispering behind your back. You want them to know: we’re okay, and if you have questions, you can ask.” 

Mrs. Morgenstern recommends sharing the diagnosis with one family member and one close friend, and asking them to share with others. Give clear guidelines about what information should be shared, and the message you want to convey to others. 

This way everyone has clarity, and you don’t have to repeat the process of sharing and responding.

“If they hear that you’re at peace with the diagnosis and happy for them to ask you any questions, or that you’re doing okay and would appreciate it if they check in, they won’t be as stilted and guarded around you,” Mrs. Morgenstern explains.

This way everyone has clarity, and you don’t have to repeat the process of

What if you’re still untangling complex emotions post-diagnosis?

For parents who are devastated, in shock, or struggling to process the diagnosis, it’s crucial to be extra discerning when it comes to sharing. Don’t keep the pain to yourself. Opening up to the right people who will encourage and hold you through the process can help you move to acceptance. 

Looking Ahead

A diagnosis can bring uncertainty about a child’s future — and worry that sharing it may invite judgment from others and limit the child’s and family’s options in the future. 

For the child with a condition, remember that getting them the best support now will help them achieve more in the long term, and there are resources for every milestone — to help children reach their potential, lead productive lives, and build meaningful relationships.

Stigma and fear regarding siblings and genetic implications have been greatly reduced in recent years, as premarital and genetic testing provide awareness about if and how a diagnosis impacts siblings, clarify possible risks, and open possibilities for interventions and healthy outcomes.

Remember, there are never any guarantees about what the future holds — for anyone. Hold on to hope, and allow a supportive community to rally around you.

Your Story, Your Choice

There’s no one right way to share. You’re allowed to speak openly. You’re allowed to be vague. You’re allowed to take your time. And you’re allowed to protect your peace.

And as Mrs. Morgenstern gently reminds parents, “Hashem gives us the strength to handle the challenges He gives us – but not necessarily the ones we bring upon ourselves. Don’t add secrecy or shame to something that’s already hard. 

"It can take some time to figure out what and how you’re comfortable sharing, but it’s worth giving it the time it needs. Doing so can be so beneficial for you and your family.”

Because while this may be your child’s diagnosis, you’re not meant to carry it alone.