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Autism Speaks: Connecting a family with child on the ‘spectrum’ to information and resources

Published: Oct. 19, 2021 at 6:11 PM EDT
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CHARLOTTE, N.C. (WBTV) - We’re On Your Side Tonight supporting 1 in 54.

It is how many are on the autism spectrum. The developmental disorder is now often diagnosed by age two.

Parents, or caregivers often notice avoidance of eye contact, a lack of interest in other children or delays in communication. The diagnosis often stops parents in their tracks.

“I mean, I remember it like it was yesterday,” a parent said. “I remember the way the room looked, being with their neurologist, I remember the way I felt I was scared. I didn’t know much about autism. I really didn’t know what it meant for his future.”

Often, the first place people turn to is Autism Speaks.

The organization funds research and awareness campaigns.

It fights in state capitols and in Washington for laws and regulations that better serve the autism community.

It provides a place of first contact to connect a family to information and resources. Autism Speaks calls it their Autism Response Team.

Andrew Nelson, the Autism Response Team’s Director, spoke with On Your Side Tonight’s Jamie Boll.

Andrew Nelson: They can reach us by live chat. They can give us a call through our call line. And they can also reach us through some of various social media channels to ask essentially any question under the sun.

Jamie Boll: We hear so often, you know from parents or grandparents, they might get that diagnosis and they don’t even know where to begin. Is that what this service is about just to answer some basic questions?

Andrew Nelson: That’s a really large percentage of the questions that we get.

I would say somewhere in you know 15% to 20% of all questions are about that topic.

We get a lot of calls from autistic constituents asking for information for themselves as well, and we’re a great place to start. We can say ‘OK, where do you live and what are your interests? What are your needs? And we trying to build up a package of information that will help them get started on their way.

Jamie Boll: How important is it? You know to have that information so readily available because it’s overwhelming when this sort of hits a family.

Andrew Nelson: Absolutely. You know any of us who have Googled or, you know, jumped into a search engine looking for information, you can find yourself in a corner or rabbit hole pretty quickly and Autism Speaks does a nice job of getting everything on one website.

But even that, in and of itself, can be overwhelming, so we are somebody just kind navigating those first steps is really critical just to help them reduce their stress, let them know there is a community there for them. They can ask other parents, get plugged in and let them know that they’re not alone.

Jamie Boll: I’ve heard the demand has gone up significantly of late. Can you quantify that for us?

Andrew Nelson: I think our center, we receive somewhere in the ballpark of you know 4 to 6,000 interactions a month.

Jamie Boll: Has the pandemic been a factor in this as well?

Andrew Nelson: I think in that first month of the pandemic, we saw a big spike in the increase in calls specifically about ‘what do I do?’

You know that the first several months were really intense, and I’ll tell you they were asking about school issues, wearing masks vaccine questions as the vaccine started to roll out. That kind of thing all came in. Some of that has leveled out a little bit, though we still are receiving a lot of questions about, ‘so what does this mean for my son or daughter’s schooling?’ Or ‘How do we go out in public if they really are having a hard time with masking and that kind of things?’ So we do provide supports there, but I think the biggest impact was probably seen in the financial and food security.

We did notice that a lot of people were struggling and still are with meeting their financial needs.

Jamie Boll: Autism Speaks, obviously a national organization and doing work in many different areas, is this sort of the conduit then into getting into to local programs?

Andrew Nelson: Yes, a person calls, and if they’re willing to share where they’re located, we can instantly pull up in our database of resources local providers for whatever topic they’re looking for, and we have a really hearty database there that we can tap into.

So, that’s just one-way Autism Speaks is helping.

You can help fund its full mission which is to support those across the spectrum throughout their life -- by joining Autism Speaks on October 30.

They will be gathering at Truist Field in uptown for this year’s Autism Speaks Walk.

Yes, there is an in-person option this year. Registration begins at 9 a.m.

Everything you need to know about registering and creating a walk team to raise money can be found on our website.

While there, you can also learn more about how to contact the Autism Response Team.

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