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Concerned uncle seeks guidance on right way to urge autism screening

“What can we do to help my sister-in-law understand that her son may be on the spectrum? Is there any type of care package that we can anonymously send to her? I've asked my wife to sit down and have a discussion with her sister. But I get the sense that the family doesn't want to offend her. This situation saddens me because she's a single mom who could be getting some sort of assistance. Please help. I'm not entirely sure what to do, and I hate that so much time is being wasted.”

Today’s “Got Questions?” answer is by behavior analyst Kara Reagon, Autism Speaks associate director for dissemination science (left), and education specialist Lucia Murillo, Autism Speaks assistant director of education research.

Thank you so much for reaching out with yours concerns. It’s an issue we hear time and time again.

It can be difficult to express concerns about a child’s development when the child isn’t yours. Often it’s easier to hear such concerns from a family member rather than a stranger. But, of course, family dynamics differ, and sometimes the relationship can make such a serious discussion uncomfortable. This is often the case when family members fear that they’ll make the parent feel judged or that they are criticizing the child or his behavior.

This is unfortunate because we know that the goal is to ensure the child’s well-being and development.

First, it can help to remind ourselves that people differ in their perception and appreciation of what autism looks like or even sounds like. In part, this has to do with awareness of autism and what it is. But it goes beyond that. It’s still very common for the early signs of autism to go unrecognized. In some cases, a parent or other caregiver may have concerns but chose to leave them unacknowledged until the child’s behaviors seriously interferes with his or her life.

It may be that the person hopes that a child will simply outgrow certain behaviors or that the behaviors simply reflect the child’s personality.

And sometimes these attitudes involve denial of obvious signs and symptoms. This can be the case when someone refuses to believe that a serious disorder can happen to his or her child, grandchild or other loved one.

When family and friends can help
In these cases, it may well take someone else to give a push, so to speak, in the direction of finding out more – and getting appropriate help, if needed. Sometimes, this push comes when relatives or friends notice that something’s wrong, or “not quite right” – and then share their concerns with the child’s parent.

So how do you approach this conversation? Here are our suggested steps:

1. Give some thought to a good time and place to talk. These conversations can be emotionally difficult. The parent may become upset, mad, cry or even walk away. So it’s important to deliver your message in a private setting with few distractions. As with any serious conversation, express that you care and remain calm.

2. Prepare for the conversation by learning about typical developmental milestones as well as the signs of autism. See “What is Autism?” “Learn the Signs,” “Screen Your Child” and “How is Autism Diagnosed?” on the Autism Speaks website.

You may also want to have some of these resources on hand for your discussion. But be careful not to overwhelm your sister-in-law with too much information during your first conversation. Consider leaving the materials along with a sincere and open invitation to talk further, if she wants to do so. In particular, she might appreciate using the interactive “Screen Your Child” app in privacy.

3. Remind yourself that it can be emotionally painful for parents to accept that their child might not be developing typically. Too often, parents inappropriately blame themselves. They’ve brought a healthy newborn into this world. They’ve loved, cared and provided for the child. “How can there be a problem?” Again, be prepared to be patient, caring and calm.

4. During the conversation, emphasize that following up on concerns with an evaluation won’t necessarily result in a diagnosis of autism or any other developmental disability. However, being proactive can make a world of difference for a child. Or as we’ve told many parents: It’s better to know than not know, because then you can learn your options and take action if it feels appropriate.

5. Be a good listener. Give your sister-in-law time to discuss her concerns – and to respond to yours.

6. Offer to be there for support throughout the process, whatever she decides to do.

7. Be prepared for the possibility that your sister-in-law may not accept the information you provide. You’ll need to appreciate that you’ve opened a door. You’ve introduced a possibility and a direction that she may not have considered before – or had considered but feared. Your calm support may help her get ready to take the next step.

More helpful materials
You also asked about a “care package” you could send. We recommend against doing so anonymously. Instead we suggest that, once you have the conversation described above, you provide your sister-in-law with a copy or link to the Autism Speaks First Concern to Action Tool Kit. Follow the title link to download it free from our website.

Should your nephew receive a diagnosis of autism spectrum disorder, we have a series tool kits that can help guide your sister-in-law and your entire family through the days, months and years ahead. A great start would be one of our two 100 Day Tool Kits for Families. Depending on your nephew’s age, you can download the 100 Day kit for families of either newly diagnosed young children (here) or school-age children (here). Both guide families through the first three months after diagnosis, as they navigate the sometimes-complicate service networks offered through their local schools, medical centers and early intervention networks.

In closing we wish you and your family – including your wonderful nephew – all the best. Please let us know how you’re doing in the comment section below or by emailing us again at gotquestions@autismspeaks.org.

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