This is a post for parents and caregivers whose child has recently received an Autism diagnosis and who are planning on how to inform members of their extended family. 

Speaking with family is just one small component of all the changes that can come with an official diagnosis, from seeking out benefits to updating education plans to adjusting household routines. Yet it can also be one of the most crucial steps - family can simultaneously be one of our most crucial pillars of support and greatest sources of stress. This post hopes to offer some initial steps toward navigating that reality.

It is important to note right away that any discussion regarding sharing a diagnosis is in relation to family members who are broadly regarded as safe. You are under no obligation to inform anyone you feel is unsafe for you or your child. 

When it comes to other family members, each one might evoke a different thought as to the best way to broach the topic, fears of how they might react, and how best to support your child in that moment. Because every family is so different, perhaps the best way to inform such an approach is with some broad guidelines you can check in if needed to ensure the steps you are taking are in the best interest of your child.

While here at AGU, we are major advocates for self-advocacy, one reality of parenting is that we must often advocate for our child when they are not yet able to. This remains true when it comes to sharing the news of a diagnosis with extended family members. 

Due to a lack of broader social understanding of Autism and its use as a boogeyman by people looking to make money off of people’s fear, it’s entirely possible that some family members will react to such a diagnosis in a way that shows a lack of understanding and may even be deeply unpleasant. 

In those moments you will be the only person in a position to speak on your child’s behalf, and it is your duty both to inform family members of their ignorance and decide if a family member with a particularly bad reaction needs time to process before it is acceptable for them to interact with your child. 

Part of standing up for and being proud of your child’s identity is sharing it, and part of standing up for and being proud of your child’s identity is pushing back when people respond in a hurtful way.

For all our talk about pushing back if needed, it’s understandable that we don’t just want to barrel headfirst into conflict with family members without a degree of forethought. One strategic decision worth making in this context is to focus first on family members you feel reasonably confident will be supportive. 

The most obvious benefit is being able to practice sharing this news with people who will be more forgiving of you stumbling or getting used to the process. But it can also be incredibly beneficial to have allies in the family for talking to members that might entail a more difficult conversation. 

Sometimes a big show of support from the rest of the family can be a strong indicator to someone who might otherwise be tempted to react badly that such outbursts will not be tolerated and that the family will be working together on how to best be supportive. It might be cliche but strength in numbers can make a huge difference for the toughest conversations.

One unfortunate reality of sharing a diagnosis with broader family is that it may change the way some members interact with your child. Such changes aren’t necessarily malicious but can be a product of the way some people view Autism based on what they have learned from media. 

One crucial way you can support your child through that process is by making sure that if they share information about the way they are treated by a family member you take it seriously. 

That does not necessarily mean immediately confronting a family member the moment something changes, but rather making that your child knows if they need to come to you about something you will take it seriously and not make them justify their concern.

Telling family members is often one of the first ways we share our child’s diagnosis with the greater world and begin to integrate all the forms of community support that may be necessary for them to thrive and grow. It can also be one of the most daunting. 

We hope these broad guidelines have helped to inform how you might approach your unique family dynamic with an eye toward ensuring that your child gets the support they need and avoids unnecessary negative interactions. 

If you’d like for us to go more in depth on this topic or want to share your own experience disclosing to family then we would love to hear from you! Just drop us a line at hello@autismgrownup.com and let us know what’s on your mind!