Nabila and Tariq Syed’s son Nihal and daughter Sania celebrate life through their very existence. With their zest for living, the kids keep their parents on their toes.
When Nihal was diagnosed with autism at 2 1/2 years old, Nabila and Tariq began gathering as many resources as possible to educate themselves about autism and better care for him. While researching and connecting with families and organizations, Nabila continually saw references to Pathfinders for Autism that she couldn’t ignore. For the Syeds, Pathfinders for Autism was their partner on the autism journey.
Advocacy and Autism Support
The nonprofit Pathfinders for Autism works to support and improve the lives of individuals on the autism spectrum. Through programming, information, training and activities, the organization helps families, caregivers and individuals find the best resources for their needs.
For Nabila, Pathfinders helped her find dentists, doctors and hair cutters who were child- or autism-friendly, as well as provided her and her husband with advice for raising a child with autism.
Pathfinders is present for parents just like Nabila. Its founders—former professional baseball player and Baltimore Orioles Hall of Famer William “B.J.” Surhoff and his wife, Polly Winde Surhoff—struggled to find information and resources when their son, Mason, was diagnosed with autism during the 1990s.
“We found a therapy program for Mason that we thought other parents could benefit from, so I put a note in his backpack to take to his class. We all realized how ridiculous that (this note) was one of our only means of finding assistance,” says Polly.
The Surhoffs and other parents began developing an organization that could help them and support other families experiencing the same struggles.
“Funding research was out of our means, and we wanted to help families immediately. We started off with just an online resource base,” says B.J.
Officially founded in 2000, Pathfinders has since become Maryland’s largest autism organization. It served more than 19,000 individuals in 2020 alone and had close to 11,000 participants engage in its in-person and virtual activities.
Programs include workshops for parents and professionals on topics such as special education, behavioral interventions, sensory processing and more. Additionally, the organization created a safety program to help train first responders in dealing with individuals who have autism and other developmental disabilities.
“We partnered with professionals and clinical experts in the field of autism to create these curricula where responders learn what a disability may look like and the challenges they may encounter,” says Pathfinders executive director, Rebecca Rienzi.
Every program the organization offers features a partnership with experts and often includes collaborations with people with autism.
On the adult advisory committee, individuals who all either have autism or intellectual and developmental disabilities share their viewpoints with the organization.
“The committee provides input on current programming and advises Pathfinders on what can be done to better serve their peers,” says Rienzi. “It’s really helpful for us and our participants to have programs created by people with firsthand knowledge of autism.”
Pathfinders also offers free events at the National Aquarium and Minor League Baseball games so that families can take part in fun outings and connect with other members of the autism community.
Nabila has found these events to be especially engaging for Nihal and her daughter, Sania, who was diagnosed with autism at 18 months old.
“(Pathfinders) hosted an event at the Ladew Topiary Gardens, and it was amazing for Sania. We didn’t take her out as much when she was younger because she wasn’t ready for that type of social exposure, but at this event, she was free to run around and enjoy the gardens, play games and do yoga,” says Nabila. “It was a great atmosphere. There was no judgment, and we were able to connect with other parents.”
Overcoming Challenges with COVID-19
When the COVID-19 pandemic began, the activities, programs, fundraisers and trainings came to a halt.
“People on the autism spectrum, including Mason, breed on schedule and consistency, so it was really difficult when their lives were completely disrupted,” says Polly.
Fortunately, Rienzi says, the team was phenomenal in pivoting curricula to a virtual setting. Staff set up webinars for trainings and talks with experts, made virtual field trips and created resources for virtual education. Pathfinders also provided updates on COVID-19 information and state protocols, as well as advice for explaining COVID-19 to someone with autism and assisting them with wearing face masks.
One of the biggest concerns, however, was maintaining social connections. While staff couldn’t offer in-person events, Pathfinders began hosting matinee movies, bingo nights and scavenger hunts over Zoom.
“Nihal really enjoyed bingo, and the scavenger hunt was really fun. I did most of the running, trying to find everything, and he just sat there and laughed at me,” says Nabila. “It was great for him to make connections through Zoom, and it was just a nice thing to do at the end of the day.”
Rienzi says Pathfinders plans to continue with virtual events in the future, not only for people who live in different states and countries, but also for families who couldn’t participate in activities before the pandemic.
However, Pathfinders is excited to resume in-person events in a safe manner.
In October, the organization will wrap up its Dip Challenge, a campaign tour across the state of Maryland to raise awareness and inspire people to “dip” into their hearts and donate.
“Our monetary goal is to raise $1 million, but it’s also an opportunity to get back out in the community after being shut out for 18 months,” says Rienzi. “We’re getting to areas we haven’t been to in a long time, as well as communities we’ve never gotten to before.”
As Pathfinders looks toward the future, Rienzi says the organization plans to grow its adult programming, especially in issues surrounding employment.
“These individuals have skill sets and are more than capable of doing certain jobs, but they may not be considered because they can’t communicate strongly or they need a job coach or transportation support,” says Rienzi.
Pathfinders is hoping to find ways to test for different aptitudes and devise a program that can tap into people’s abilities.
“You always have to assume intelligence when it comes to people with autism. Otherwise you’re out of luck with this population,” says B.J. “Mason might come into a room and not speak and just walk around, but he’s listening to everything we’re saying and taking it all in.”
“We ask ourselves, ‘What can we be a catalyst for?’ So much more is needed, whether it be information, employment or just creating meaningful opportunities,” says Rienzi. “Now that we’re not just planning for next week, we’ll hopefully be able to grow our programs and bring more to the people
Advice for Raising Children with Autism
Don’t sweat the small stuff
Although the diagnosis can be heartbreaking in the beginning, Tariq says that it’s not the end of the world.
“You just take it day by day, give your best and leave the rest,” he says.
When Nihal was diagnosed, Nabila gathered pamphlets and attended conferences to gather as much information as she could.
“If there’s some hurdle or issue, I ask people who are in the same groups as me. I’ve formed a connection with parents and teachers to get advice,” she says.
Find your community
Nabila made friends with parents at the school her kids attend and continues to foster those relationships.
“I always invite them to things like birthday parties so that we
can mingle and maintain those connections. I’ll invite the same people and new people I’ve met so that we can create a good group and have people to reach out to,” she says.
Learn how to play with your child
The Syeds recommend learning the best ways for your child to play, whether it be exploring different sensory games or enjoying various educational games on the iPad.
Every child is different
Each child, regardless of whether he or she has autism, has a unique personality, strengths and weaknesses.
“Nihal and Sania both have autism but are very different children. We have friends with kids on the autism spectrum and see behaviors that our kids don’t have. We treat Nihal and Sania no different,” says Nabila.
Learn from your kids
“My kids amaze me. They see things we technically don’t see or grasp,” says Nabila.
“They give us strengths. I’ve learned how to be more patient and considerate because of them,” says Tariq. “I have a different standard of work now. I used to think that if I could do something quickly, someone else should be able to do it in the same amount of time, but that’s not how these kids work. You have to respect them the way that they are.”
Do You Know?
According to the Centers for Disease Control and Prevention, Maryland has the fourth highest autism rate in the United States. One out of every 52 children is diagnosed with autism spectrum disorder, and one out of six is diagnosed with some type of intellectual and developmental disability.
Pathfinders for Autism
235 Schilling Circle, Suite 103 | Hunt Valley, MD 21031
443-330-5370 | Help Line: 443-330-5341