‘Prison Break’ star Wentworth Miller, 49, shares autism spectrum disorder diagnosis. How rare is a diagnosis in adults?

Actor Wentworth Miller opened up to fans this week about a surprising medical diagnosis: He has an autism spectrum disorder.

Miller, 49, broke off the journey to his diagnosis in a candid Instagram post, leaving a blank white square. “Like everyone else, life in quarantine took things away from me. But in the silence/isolation I found unexpected gifts,’ he began. The Law & Order: Special Victims Unit Star shared that it’s been nearly a year since he received his “informal autism diagnosis,” preceded by a self-diagnosis, followed by a formal diagnosis.

“It was a long, flawed process that needed updating. IMO. I am a middle aged man. Not a 5-year-old,” he continued. “Let’s just say it was a shock. But no surprise.”

Miller admitted that he doesn’t know “enough” about autism to become an advocate. “There’s a lot to know,” he said. “Right now it seems my work is developing my understanding. Five decades of lived experience reexamined through a new lens. That will take time.”

“Meanwhile, I don’t want to risk suddenly being a loud, misinformed voice in the room,” he said. “The #autistic community (this I know) has been discussed in the past. Spoken for. I don’t want to do any extra harm. Just to raise my hand and say, ‘I’m here. Have been (without realizing it)'”

Miller urged people to look up content on Instagram and TikTok that fights stigma surrounding autism, pointing out that these creators “educated me too.”

“This is not something I would change,” Miller said. “No. I get – got – that being autistic is central to who I am. On everything I’ve accomplished/spoken.”

He ended with this note: “I also want to say to the many (many) people over the years who consciously or unconsciously gave me that extra bit of grace + space, made me move through the world in a way that made sense to me whether or not it made sense to them… thank you. And for those who have made a different choice… well. People will reveal themselves. Another present.”

Miller’s post’s comments were filled with a statement of support. “This was wonderful to read, welcome to the Wentworth community!” said one person. “Thank you for this. I got my autism diagnosis at age 30, and it was a really strange gift. Your voice on this is so reassuring. So, so reassuring.” said another.

Miller followed up his original post with another one, saying he was “impressed by the warmth + welcome to this page…and serious warrior energy. Mixed with tenderness. (Wonderful combination.) Thank you. Proud to to be part of /us/this.”

What is an Autism Spectrum Disorder?

Autism spectrum disorder (ASD), formerly known as simply “autism,” is a developmental disorder that can affect a person’s communication and behavior, according to the National Institute of Mental Health (NIMH).

ASD can cause a range of symptoms, NIMH says, including: difficulty communicating and interacting with other people; limited interests and repetitive behavior; symptoms that impair the person’s ability to function properly at school, work, and other areas of life.

As for discovering late in life, as Wentworth said, “It’s common for a diagnosis in adults to take time,” dr. Edward Brodkin, director of the Adult Autism Spectrum Program at Penn Medicine, tells Yahoo Life. “There are many undiagnosed adults and there is a shortage of clinicians with expertise to diagnose autism in adulthood.”

But how common is a diagnosis in adults?

Autism spectrum disorder can be diagnosed at any age, but it’s usually diagnosed when a person is a child because symptoms usually appear during the first two years of life, NIMH says.

While an ASD diagnosis is more common in children, “diagnoses are always made in adults,” says Dr. Danelle Fisher, pediatrician and chairman of pediatrics at Providence Saint John’s Health Center in Santa Monica, California, tells Yahoo Life.

Many people who were diagnosed with ASD as adults had high-functioning symptoms that they simply overlooked when they were children, Dr. Thea Gallagher, clinic director of the Center for the Treatment and Study of Anxiety at the University of Pennsylvania Perlman School of Medicine, tells Yahoo Life. “It’s more common for people to say, ‘It’s going well. You did well in school and you have friends,” she says. “Many people who are not diagnosed until adulthood assume that it would have come out in childhood. It’s very brave to say, ‘I have a hunch about this and I’m seeking help.’”

ASD should be diagnosed by a qualified clinician — “someone in the field of psychology or neurology who knows how to do the proper examination,” Fisher says. From there, she notes, “It’s important for an adult to realize they have an autism spectrum disorder and how to improve their functioning.”

There’s no one-size-fits-all treatment for ASD, but it may include medication to help with symptoms such as irritability, aggression, and anxiety, along with behavioral, psychological, educational or skill-building interventions, NIMH says. This could include working to reduce challenging behaviour, increasing or building on your strengths, and learning social, communication and language skills.

If you have been diagnosed with ASD as an adult and have started treatment, Gallagher recommends talking to your loved ones about your condition. “You can explain how this has affected your life, help them understand your diagnosis, and tell them how they can help,” she says. (If you’re not sure, Gallagher recommends talking to your doctor for advice or checking resources like Autism Speaks’ guide for adults with autism.)

“Everyone on the spectrum is very different, but ultimately the conversation with loved ones should focus on some of the issues you struggle with and what has helped you,” Brodkin says.

Gallagher adds: “The first step is understanding what this really means for you. Learning about the spectrum is very important. Having loved ones by your side, offering support and assistance with the challenges you face is invaluable.”