Culturally Responsive Autism Support for Families

Getting an autism diagnosis for your child can feel like stepping into a whole new world. If you’ve ever felt overwhelmed, confused, or simply unsure where to start, know that you’re definitely not alone. 

For many families, trying to find the right support can be more complicated when factors like language, culture, or community come into play. That’s why it’s so important to know what challenges are out there and, even more importantly, how to overcome them so you can get care that truly fits your family’s needs. 

In this week’s Autism Weekly podcast, our host Jeff Skibitsky sat down with Dr. Erin Kang from Montclair State University and Dr. Sadaf Khawar, a postdoctoral researcher, to talk about what culturally responsive autism care actually means. They shared some really helpful insights and advice, especially for families navigating autism diagnosis or looking to build their support network. 

Here are the highlights and action steps we took away from their conversation. 

What Makes Getting an Autism Diagnosis Challenging? 

Dr. Kang and Dr. Khawar know firsthand that diagnosis and everything that comes after, isn’t always straightforward. For families from different cultural backgrounds, there can be extra hoops to jump through and recognizing these challenges is the first step to moving forward. 

Sometimes, it comes down to not having healthcare providers who understand your culture or speak your language. Other times, it’s about not having enough money or simply being afraid of stigma. Dr. Kang talked about how all these things can push families to the back of the line when it comes to getting a diagnosis or intervention, which means more waiting and more unmet needs. 

Dr. Khawar explained that, even though you might notice autism traits in children as young as one year old, most are diagnosed much later, usually between four and seven years old. That’s a big gap, and it means some kids miss out on those important early supports. 

What Is Culturally Responsive Care and Why Does It Matter? 

You may have heard the term before, but here’s what it really means: culturally responsive care isn’t just about translating forms. It’s about building trust, showing respect, and making sure your child’s care actually fits your family’s values, beliefs, and routines. 

Teamwork Makes the Difference 

Dr. Kang put it simply: the best care happens when families and providers work together as equals. Yes, doctors and therapists have expertise, but no one knows your child or your culture better than you do! The goal is for providers to really listen to your needs, values, and expectations. When families are part of the conversation, everything from goal-setting to finding the right strategies becomes much more meaningful. 

Tapping Into Community Support 

Dr. Khawar encourages families to connect with parent-led organizations and community groups. So many of these groups began with parents who went through the same struggles and wanted to help others feel less alone. Whether you turn to social media, community centers, or local support groups, you can find people who just “get it.” These parent advocates and community liaisons are amazing at helping families understand their rights, find resources, and speak up for their children. 

Little Steps, Big Difference: Practical Tips for Families 

Whether you’re just starting out or you’ve been on this journey for a while, these simple steps can help you feel more confident. 

Families Dr. Khawar spoke with said the same thing: don’t wait to speak up for your child and ask for help as early as possible. 

• Trust yourself. If you have worries about your child, keep pushing for answers. If one doctor isn’t listening, find another. 

• Learn your rights. Did you know you can ask for your child’s Individualized Education Program (IEP) in your home language? Knowing about laws like IDEA and the ADA; means you’re better equipped to advocate. 
• Make the most of appointments. Jot down questions or concerns ahead of time. Clinic visits are short, so being prepared helps you get what you need. Don’t be shy about requesting more time or an extra appointment if you need it. 

You don’t have to go through this alone, and you shouldn’t! Support makes all the difference. 

• Find your community. Look for parent groups locally or online, Dr. Khawar mentioned the Escan Foundation and Dar-us-Sakina for South Asian and Muslim families, but there are lots of similar organizations for all kinds of backgrounds. 

• Reach out to schools. Schools often have resources for students who need support, and they have a legal obligation to help. 
• Take care of yourself, too. Dr. Kang reminded us that your well-being is just as important. Whether it’s parent groups, therapy, or simply talking to someone who understands, don’t ignore your own needs. Remember the airplane rule, put on your own oxygen mask first! 

You and your child’s providers are a team. 

• Speak up about your family’s culture. Share what matters most to your family so professionals truly understand your perspective. 

• Ask questions. Find out how providers consider cultural needs, and how they include families in decision-making. 

• Consider joining research opportunities. When families get involved in research, they help improve autism care for everyone, now and in the future. 
  

You’re Not Alone: Moving Forward Together 

Autism isn’t a one-size-fits-all journey, and every family’s path is different. Yes, there are challenges and sometimes the system feels hard to navigate, but with the right knowledge and support, things do get easier. 

Don’t forget: progress takes time, but even small steps matter. Surround yourself with your support network, keep asking questions, and believe in the difference your love and advocacy can make for your child. 

Want to hear the full conversation? Listen to this week’s Autism Weekly episode with Dr. Erin Kang and Dr. Sadaf Khawar for more ideas and hope.