My child was just diagnosed with autism. Now what?

In this article, you’ll find answers to questions like:

1. Who can help?
2. How to pick a school?
3. How to plan for adulthood?

You may have had a feeling that something wasn't quite right when your toddler wasn't acting like other kids the same age. But receiving a formal diagnosis that your child has autism can be scary and overwhelming. 

You may not know where to reach out for quality care and support for yourself. You may also worry about your child's future. All of that is normal, of course. But it's important to remember there is help locally each step of the way.

Randee Gabriel, programs manager for 211 Palm Beach/Treasure Coast, says parents can call 2-1-1 for a special needs advocate to help navigate the maze of social services and support networks available to young children with autism.

“We provide support, information, resources, referrals and navigation. There is no cost,” she says. 

Take heart that life will get easier as times passes, Gabriel adds.

"I'm not saying you will never shed another tear, just that you will shed them less often,” she says. “You will learn a new appreciation of life. And, believe it or not, you and your family can have a life full of love, happiness and much laughter.” 

1. WHO CAN HELP?

The Els for Autism Foundation in Jupiter provides diagnostic services and early intervention programs for children as young as 16 months old who are at risk or who have received a diagnosis of autism spectrum disorder, says Marlene Sotelo, chief operating officer.

“Our Spring into Action program includes parent and child classes, intensive one-to-one, classroom-based intervention based on applied behavior analysis, as well as speech and language therapy, occupational therapy and behavior therapy,” she says.

In fact, hundreds of service providers in Palm Beach County can help families, says Melissa DiNuzzo, former manager of field development for Autism Speaks.

“From early intervention all the way up to employment services, we try to be the puzzle piece in the community to connect our families to the services they need,” she says.

It’s important to meet other parents of children with disabilities when researching your options, rather than isolating yourself or depending on the internet, Gabriel says.

“Other families of children with disabilities are the only ones who really know how you feel. There are times they will be your lifeline and support you like no one else can,” she says, adding these parents often become lifelong friends.

Another great local resource is Florida Atlantic University’s Center for Autism and Related Disabilities (CARD), which provides free consultation, technical support training and resources to more than 5,200 families in five counties, director Maryellen Quinn-Lunny says.

“We have offices in Boca Raton, Jupiter and Port St. Lucie,” she says.

2. HOW TO PICK A SCHOOL?

No one knows your child better than you, so your child’s education is an individualized decision, says Gabriel, of 211.

“A school that works for one child may not work for another child,” she says. “Some of the best options for your child may be a public or public charter school, so never feel like you have to pay to get the best.”

Autism Speak's DiNuzzo agrees that each child’s needs are different. “There are clusters in some of the public schools that the older child might fit in with, or there are schools that are more focused on vocational studies than secular,” she says.

It’s crucial to know your legal rights to an educational plan that addresses children’s special needs. “Go to Individualized Education Plan (IEP) trainings when they are available,” Gabriel says. “Some children will have an IEP from age 3 through 22 years; some may never have one.”

The Els Center of Excellence hosts two free public charter schools on its campus divided by age groups 3-14 and 14-22. The foundation also provides therapeutic arts and recreation, such as music therapy and golf.

Sotelo, of The Els Center, suggests observing your child’s classroom and private therapy session before asking the teachers and therapists for tips to teach you how to infuse them into your family’s life.

“Learn all you can about autism and evidence-based practices so you can make a difference in your child’s life in every moment, in every experience and with every smile,” she says.

3. HOW TO PLAN FOR ADULTHOOD?

It’s vital to start long-term planning early when you have a child on the autism spectrum.

“There are programs you can apply for when your child is 3 years old that will support them as adults. The special needs advocate at 211 can assist with questions,” Gabriel says.        

Vilma Sosa, a Palm Beach County parent of three, can speak to the challenges of adulthood. Her adult daughter, who was diagnosed at age 2, copes with communication issues.

“Her behavior is very challenging, being happy one time to being angry the next,” Sosa says. “She’s been on medication and behavior therapy. Despite this, she is a very lovely young lady, and we are happy to have her as a part of our family. We always learn new things from her.”

Autism Speaks has a wide selection of planning tools, such as:

    • Transition Tool Kit: For Families on the Journey from Adolescence to Adulthood 
    • Financial Planner app (free)

The Els for Autism Foundation also helps with adult transition. 

“Our vocational rehabilitation vendors offer work experience programs and independent living classes, such as Special Adults Life Skills Academy, which is a cooking and fitness class,” Sotelo says.

Many life transitions require planning and preparation, Quinn-Lunny, of FAU's CARD, says. “We are there to support the individual and the family across the life span,” she says.

Sosa’s younger daughter, Jessica, says she never thought of her sister as having autism when they were little.

“When I let the idea of autism sink in, I saw her differently and paid less attention to her. I now know she is a human being like all of us, even with her tantrums or her random way of speaking,” Jessica says. “She experiences pain, and she feels happiness. She taught me so much, and I’m thankful to have her as a sister.” 

SOURCES:

• Melissa DiNuzzo, former manager of field development, Autism Speaks
• Randee Gabriel, programs manager, 211 Palm Beach/Treasure Coast
• Maryellen Quinn-Lunny, director, Center for Autism and Related Disabilities at Florida Atlantic University
• Marlene Sotelo, chief operating officer, Els for Autism Foundation