If a child is diagnosed with autism, what is the most important thing for parents to do right away?

There's no single answer.

That's because there are so many variations on the autism spectrum, says Suzanne Buchanan, executive director or Autism New Jersey.

“When a family gets a diagnosis of autism, they should reach out for help so they can find the right programs and services, whether it’s through early intervention if the child is younger than age 3, or to the local school district if your child is age 3 or over,” Buchanan said.

“There’s a saying in the autism community: if you’ve met one person with autism, you’ve met one person with autism. So it is very highly individualized."

Children who have autism play at Bancroft Day (courtesy Bancroft)

“First and foremost, parents should become informed about what treatment options are out there and if there’s a credible research base behind them.”

Dr. Kurt Miceli, the chief medical officer at Bancroft, a nonprofit provider of services for those with autism, said parents may initially be shocked and upset and go through their own stages of grief if their child is diagnosed, but what happens next is crucial.

“I think there’s something to be said to having a diagnosis, to know what something is, to be able to treat it, and that’s a key thing to remember: Autism is treatable, we can do things to improve individuals' lives,” he said.

“You won’t know what it is you’re dealing with unless you label it, and it’s important to at least have a foundation from which to go.”

Amy Smith, the director of information services at Autism New Jersey, said many families feel a sense of crisis when their child is diagnosed with autism, and “having someone to help guide you through the next three steps, and then the next three steps [after that] can help.”

“When people call the 800-4-AUTISM Helpline, they get help navigating the services they will need.”

“Whether that’s the through the school system, the early intervention system, the adult service system, insurance, and any behavioral treatments that they might be seeking out."

She stressed it’s important for parents to become aware of the resources that are available, and how best to connect with them.

Buchanan pointed out “you want to choose an intervention for your child that gives your child the best odds at an improved outcome — the intervention approach that’s going to teach them the most skills and try to reduce their challenging behavior.”

She noted it’s critically important for parents to learn how to evaluate different treatment options “because there are more than 400 treatments marketed to the autism community and, obviously, they’re not all equally effective.”

She said New Jersey is a leader in providing programs and services for the autistic community, but we still have a ways to go to make sure every child and adult with autism has access to the services they need.”

Patrick Murphy (Courtesy Autism NJ)

Buchanan says "public schools have the capacity to offer specialized intervention, but sometimes children’s needs exceed the capacity of the public school, and so they’re better served in private school. It’s very individualized.”

She also stressed parents may initially be very upset when they learn their child has autism, but it’s important to remember “you’re going to have so many moments of joy along with the moments of challenge, parents often learn how to celebrate the joys and be more resilient for the challenges.”

Lisa Alberts, a psychiatric advanced practice nurse at Bancroft agrees, pointing out a diagnosis of autism is in one sense the beginning of a great journey.

“There are lots of things we can do to help support a person with autism, there’s also great strengths for individuals with autism that have super talents in different areas. It’s not all a negative. It’s important to understand the whole picture,” she said.

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