Nancy Masannat is a life coach and mother to Kyle, her 22-year-old son with low-functioning autism. She’s an author as well, having recently published her first book “Your Mindset Matters: Mindset Strategies for Parents of Children with Autism.”

 

“My son was diagnosed with autism in 2000. We had recently moved to Fredericksburg, and within four months he was diagnosed,” she explains. “My job as my kid’s mom is to improve his quality of life and give him the independence that he’s able to have at his level.”

 

Kyle is non-verbal, so for him the transition and the help he needs may look different from other autistic children. An estimated one out of 45 adults in the U.S., about 5.4 million people, have Autism Spectrum Disorder, according to the CDC. A lot of focus is put on young children with autism, especially those newly diagnosed, but the transition to adulthood can be difficult, and the resources available to them often aren’t as robust.

 

Nancy acknowledges that it can be difficult to think that far ahead when they’re young.

 

 “It’s hard to move from the here and now,” she says. “You get caught up in meltdowns and school meetings and it’s terrifying to think what your kid’s life is going to look like when you’re gone.”

 

Looking ahead to their adulthood, though, even if it’s years away, is necessary. That feeling, acknowledging your fears and uncertainty, and how to navigate them, was the impetus for Nancy’s book.

 

“I was looking for something tangible to put in peoples’ hands that you could read as a whole, or even if you have just five minutes to read a few pages, something that could make a difference in their lives,” she says. “It covers 12 different mindset shifts that you can make. There is also a journal that can help you dig deeper. It’s a stressful time for parents, your child has been in the school system for 19 years and it’s ending. What’s going to happen next? What are we going to do? It’s overwhelming.”

 

IEP and Transition Meetings- Preparing Now, Not Later

 

Nancy describes the process and what to expect, from IEP to exiting the system in adulthood.

In IEP and 504 meetings, the school counselors work with you to create an individualized education program. They’ll typically start talking about the transition when your child is about 10 years old and then at about 14 years old the conversation becomes more focused. She explains that Kyle’s situation was impacted by the pandemic: “It’s easy to think you have plenty of time, but it sneaks up on you. We were barely post-pandemic and back in the classroom and I realized we didn’t have much longer in school… those are the moments of ‘Holy cow, what are we going to do?’”

 

Nancy advises, “You need to be involved in the meetings. They’ll ask questions like, where do you see him living? Is he going to be at a group home, or home with you? Do you see him having employment? This is part of the transition plan the school system starts to help build. You can’t chart a path forward if you don’t know where you are.”

 

 

Guardianship- Preparing For When They Become a Legal Adult

 

The process of gaining guardianship over your child officially starts when they are 17 and a half years old. A representative comes to your house to meet your child and see them in their environment, as well as handle the paperwork. In Kyle’s case, they needed to go to court to remove his rights, as he is low-functioning and non-verbal.

 

 “It’s important to do that before they turn 18 because once they do, their medical team can no longer advise you,” Nancy says. “Kyle would have to give his consent, which he’s unable to do.”

 

Guardianship can take many forms.  For autistic adults who are higher functioning, it may just be financial guardianship. During this process, you should also set up financial accounts and disability trusts.

 

Managing Kyle’s Transition Away From School

 

“We exited the school system last year, and, for kids like Kyle, that means he falls off the service’s radar. We were fortunate to make a gradual shift, and he went from five days of school to two days, with three days in ABA (Applied Behavioral Analysis) therapy, where they work on life and social skills.”

 

The transition wasn’t entirely smooth, Nancy says.

 

“He cannot verbally tell me what's going on, so I have to ‘read’ a lot of his behaviors,” she says. “He did have anxiety [with the change] and that showed up for him in being frustrated or agitated.”

 

Nancy emphasizes, “If you can create a gradual shift in routine, it helps. We keep a schedule on the fridge; he likes to know what he's doing. It can be written or visual. I repeat his schedule to him often and that reassures him. It’s good to include them in the process, and not to rob them of their autonomy. Even if we are still making the decisions, talking about it helps him feel included in the process.”

 

 

 

Nancy’s Tips On Making The Transition Easier

 

-Review services available to you and your child based on their ability.

–Look at their interests to see what opportunities there are. “For instance, if your kid likes baseball, maybe a local stadium has an opportunity to find them employment,” she says. “If you pick something they’re interested in, they’ll be more engaged.”

–When they turn 17, find an attorney. You can’t start the guardianship process until they are 17 and a half, but it needs to be completed before they turn 18.

–Assist the transition by allowing them to make safe decisions like having them decide what color they want their bedroom walls. This helps them know what a decision process looks like.

 

Things are working out well for Kyle, thanks to the work Nancy put into learning the process.

 

“Yesterday we took him to Starbucks and put together a jigsaw puzzle,” she says. “That sounds silly, but it’s getting him out in the community, getting him in a new atmosphere around people.

It’s beneficial to him and beneficial to the community as well. It’s an opportunity for awareness and education for the community. People like Kyle exist, and they need acceptance and to be embraced by the community.”

 

 

Additional local resources:

 

REACH, a Spotsylvania County school program is a transitional and vocational post-secondary opportunity for students with intellectual disabilities. They take a limited number of children each year and work with them on job skills at job sites through an internship program.