How to Discuss Autism as a Family

After receiving a diagnosis of autism spectrum disorder (ASD), you may wonder, what comes next? While you will need time to sort through therapies, services and resources, it’s also important to consider how the diagnosis might impact your child and family unit. Talking about autism as a family is one important step in the journey. Here are some tips for navigating these important conversations.

Process your own emotions first.

The diagnostic process might have felt overwhelming. Allow yourself time to sort through your own emotions before you try to determine the next step.

“Some parents say, ‘Thank goodness someone listened to me. I’m so grateful for this information.’ Some families are not there yet,” says Dr. Bianca Brooks, a licensed clinical psychologist at Marcus Autism Center, a subsidiary of Children’s Healthcare of Atlanta. “There might be a sense of sadness, loss or grief. Some parents are not in tune with their feelings, as they’re in problem-solving mode and thinking, ‘What do I do next?’”

As you recognize your own feelings, acknowledge your child has not changed, just the circumstances.

“This diagnosis doesn’t change who your child is. They are still the same child they were before a professional gave them a label. The label helps you better understand them and access resources, but it hasn’t changed who they are,” says Dr. Avital K. Cohen, a licensed psychologist at Peachtree Pediatric Psychology.

Ben McCormack’s son, Joshua, was formally diagnosed with ASD during his fourth-grade year. “For parents, be gentle with themselves. It can be really hard. You frequently have this experience of thinking, ‘What am I doing wrong?’ You need to be gentle with yourself.”

Take time to learn.

Many available resources help parents learn more about ASD. Allow yourself time to process information and discuss what you’re learning with your partner.

Exploring your own biases puts you in a better place to help your child.

“Getting education yourself can be informative and helpful to understand autism. What someone may have thought autism was is not always what it is,” Cohen says. “Some parents think their child doesn’t want friendships because of their autism. People with autism are able to be successful in friendships; they just need help understanding the social rules.  Learn and understand what autism is in general and what it means for your child.”

Connect to a community.

While no two people with autism are the same, you can find people who you and your family will relate to.

“There’s often a lack of exposure to the autism community,” Brooks says. “Follow autism advocates, adults with autism, people with different functioning levels. See how autism can look different in different people.”

Don’t be afraid to ask your doctor or clinician for help. “Ask for help either from the pediatrician or counselor about how to talk to your child,” McCormack says.

“It’s not on the parent to figure out everything,” Brooks says. “Find a support system with other parents. Find the parent who has fought fights with schools, who has practice in the life skills. Those voices are the best to learn from in this domain, as they have the personal experience.”

Finding a community might include researching new schools for your child.

The McCormack family tried different schools for Joshua before finding The Hirsch Academy, a neurodiversity-affirming school. Even before his official diagnosis, the school supported him.

“He was getting the personal attention he needed to adapt to his learning style. It helped to undo some of the ways other schools’ teaching approaches weren’t a fit for him. Not only did he struggle with what we later came to understand was ADHD and autism, but he was questioning, ‘What’s wrong with me?’ He developed a lot of negative patterns of self-talk and understanding himself,” McCormack says.

Embrace difference as a family.

Make it a priority to discuss differences as facts and as something that’s fun about the world, not a matter of shame.

“Always make sure when you’re raising a child to have books of difference. Start integrating difference into your life by sharing stories from all brains and all developments, so you’re sharing the world with your child and showing all these people who exist in our society,” Brooks says.

Pay attention to the information you’re consuming and sharing. Is it validating and affirming?

“Terminology is important. The community has moved to person-first language,” Cohen says. “It’s not something they carry on the side with them. It is intrinsic to the person and what they bring to the world.”

The McCormack Family

Have conversations with your child.

Discuss autism in a developmentally appropriate way. If your child is younger, explain certain components of his life, rather than all the factors of ASD.

“Kids with autism are really drawn to details, such as how things work. There’s a lot of beauty in this approach,” Brooks says. “But that can make your life really hard when you’re 2, and you want to do everything independently, but you need help from others. If they’re focused on how things work, they can miss out on learning from the social aspects of their world, have a hard time understanding verbal instructions or using gestures or speech.”

As your child ages, he might be picking up on clues that he is different from his peers.

“If they’ve started to ask questions or say things like ‘I feel really different’ – that is usually when it’s helpful to start talking about differences,” Brooks says. “Give real life examples: ‘I am not that athletic, so I’m not the best at running really fast, but it’s still something I love to do as a hobby. You’re good at building LEGOs. I could never build that by myself or as fast as you can; that is a special skill unique to you.’”

Being in a diverse environment helped Joshua relate to other people and made conversations with him easier.

“Joshua is a little bit older, and he’s at a school where neurodiversity was talked about. We felt comfortable talking to him about it,” McCormack says. “It didn’t change how we thought of him or cared for him or talked to him. It wasn’t a shock for him. He was used to being around peers and friends his age who had autism, and he could see it play out with his friends. Sometimes, his friends had big feelings; sometimes, he did. There was safety being in an environment where he felt understood and supported.”

Focus on the positive.

“The medical model often focuses on the negative and all the things you can’t do,” Cohen says. “Share positive things first: You’re good at remembering details about your favorite interest; you’re good at remembering the order of objects; you’re good at being a big brother or big sister.”

McCormack values how his experience parenting a neurodiverse child has allowed him to prioritize family life. “It’s a gift. It helps you to slow down and ask, ‘What’s really important?’ Parenting can be challenging, as it requires you to get your priorities correct in your own life. What Joshua is asking is, ‘Can you see me? Really see me?’ All our children are asking for that. It is the biggest blessing to see him for who he is.”

Validate the difficulties or emotions they share with you.

If your child shares with you how she’s feeling, don’t dismiss that. Accept her emotions to keep the conversation from shutting down.

“Normalizing experiences and empathizing is really important,” Cohen says. “Everyone’s born with a different brain. For most kids, they know something is different about them, and they’re feeling frustrated.”

Let your child know there are supportive adults in her life who are there for her, no matter what.

“We’re going to be working together on this challenge. Mommy and daddy, your teachers, the adults in your life, we’re learning to help make things better,” Cohen says. “We’re looking at it with a neurodiversity-affirming lens. We’re helping them accept themselves, have better experiences and learn to advocate for themselves.”

Explain the point of therapy.

Starting a new therapy program may feel overwhelming to your child.

“Say to your child, ‘The goal of therapy is to help you be happier. It’s helping you understand what you don’t understand and learn to communicate effectively,’” Cohen says.

Parents should participate in the therapy process.

“Be involved in therapies to learn what your child is capable of, understand what it looks like for your child and how you can be supportive,” Cohen says. “If your child is sensitive to sensory stimulation, how can we create spaces within the home that are free from sensory stimulation? You can use tools to create a space for your child to feel safe and secure.”

Help them learn to stand up for themselves.

There are documents and resources, such as the Individualized Educational Plan (IEP) and 504 Plan, that help the world understand your child. Helping him voice his own needs is a skill that will serve him in and outside of school.

McCormack established this practice with his son. “We talk about accommodations. We might sit down, and he says, ‘I can’t do this right now. I need to run around.’ It’s not always so clear, to us or to himself, what he needs. He’s learning to ask and pay attention to how his body feels. To me, that’s more important than how to talk about the label, because he’s learning to say, ‘This is what I need.’ He’s recognizing his own feelings and how he works, how he feels motivated and learning to communicate that.”

“Practice saying what they need, and role play it,” Cohen says. “504s and IEPs are documents in a child’s file. They’re not something they’re carrying around with them. Some students have never seen their 504 and have never heard what their rights are. To successfully advocate for themselves, they need to know what they should be allowed to have access to or what supports they should be provided. Identify a safe adult at school – who do they go to if they don’t feel supported by the teacher?”

Embrace the learning process for both you and your child.

Your child is learning to be a child, and you are learning to be a parent to your child at the same  time. You are on this journey together.

“I’m a big fan of try it. Come at parenting in a way that’s nonjudgmental, with compassion and kindness,” Brooks says. “You’re not going to get it 100% right the first time, but that helps us fine tune and learn about ourselves more. If you try this with your kid and it doesn’t work, you’re getting data to fine tune and share that experience in a different way next time.”

Practice family values.

Your family unit is beautiful and unique. Celebrate the special connection your family has to each other.

“Neurodiversity isn’t a problem to fix. A lot of times when we encounter a challenge with our children and we don’t know what’s going on, our immediate reaction is to fix the problem,” McCormack says. “With neurodivergent children, they help us refocus. They can’t be fixed, and there’s not anything to be fixed. They’re a gift, and they’re good. As parents, we have to change. We can question ourselves, but we are figuring it out. We’re supporting our children and giving them what they need.”

For some parents, it is important to remain in the present, rather than worrying about the future.

“Our brains can do things where we imagine our kids when they’re 18, 21, 25, thinking, ‘Will they go to school? Will they have a job? If they don’t, what does that say about me as a parent?’ But you’ll know what your kid is like when they’re 18 when they’re 18,” Brooks says. “In this moment, celebrate, support and enjoy your time with your child. You’re only given a 2 year old for one year.”