Dr. Lisa Liberatore is not only a supportive Mom and talented doctor. She is one of the strongest advocates for autism spectrum disorder (ASD) and has really taken the necessary steps to improve the quality of life for her son on the autism spectrum, Michael. With the help of her husband, Dr. Dimitri Kessaris, Dr. Liberatore founded Luv Michael, a non-profit organization “dedicated to training, educating, and employing autistic adults and improving the lives of the autistic community.” Her actions and full time efforts have been so impactful on thousands of individuals with ASD and will continue to be as Luv Michael grows and flourishes.
The Real Spectrum: Having studied medicine all of your life, did you notice something different about Michael when he was a baby before his diagnosis?
Dr. Lisa Liberatore: No. I really had no education on autism in medical school nor in residency. There was no history of autism in the family growing up. My other son Alexander, who is a year older than Michael, was very slow to talk when he was a toddler. He didn’t start talking until he was two years old. Doctors would always respond that boys talk late. So, when Michael wasn’t speaking at two years of age, I really wasn’t worried. The doctor said that if he wasn’t speaking by January, then we’ll have him referred for early intervention. Michael started early intervention that February and it basically consisted of a series of therapists and psychologists that would observe and work with him. They thought that he had PDD, or Pervasive Developmental Disorder. I had never heard of PDD either during my years in medical school. They told me that PDD was on the autism spectrum. Me and my husband knew nothing about autism so of course we started to read and research more about it. When we were living during the 80s, an autism diagnosis was very unusual; about 1 in 10,000 children were diagnosed. In the 1990s, the incidence began to creep up. We heard about the story of Jenny McCarthy who claimed that she “cured” her son with autism. As a physician, I felt really bad because I couldn’t “cure” my son. It was tough and there was very little understanding.
How did you and your husband feel when Michael was diagnosed with ASD?
It was definitely a shock. We got a second opinion by an expert in New York City, Dr. MaClaren. It was 25 years ago and very expensive. They videotaped him for two days and she observed and analyzed his behaviors and confirmed the autism diagnosis. That second diagnosis really hit my husband. Denial is a big thing associated with an autism diagnosis. So, of course, we sprung into action. The doctor recommended several ABA therapists, however they were all incredibly expensive and busy. As I’ve learned more about autism, I realized how much his diagnosis made sense. He could be very irritable, he didn’t have great eye contact, he was fussy about textures and foods, etc. There just wasn’t really much of an awareness as there is today.
How has Michael’s diagnosis affected your other son, Alexander?
It affected Alexander tremendously. It became over evident as he got older because I think he had this pressure to always “be the good kid.” I remember one time when he was 9 years old, I was having a really hard time with Michael. Of course, nobody asks if they could help you; they just assume you’re a bad Mom. I was so exhausted I was crying. Alexander turned to me and said, “Mom, anyone can take care of a normal kid.” He just felt a strong responsibility to be there for me and to keep his struggles to himself, which is so so hard. Alexander was also scared of “catching” autism because he was unfamiliar with how Michael got the disorder. When he was much younger, he’d say, “Why doesn’t Michael like me?” I think everyone deals with adversity. Life isn’t easy. I think Alexander is also very fortunate to have parents that are still married with the 90% divorce rate in autism. For Alexander, it’s a lesson. You have to love your child no matter what. You have to put yourself in your child’s shoes and that’s not easy for a sibling. The conversation that we are having with Alexander now is how we are really trying to create a life for Michael with friends. We don’t want Alexander to feel that Michael is his responsibility. He will always be there for Michael.
Michael is now 24? What was known about autism when he was diagnosed as far as treatments and early intervention?
Michael is 24. I was told that if he didn’t speak by 9 years old, then he’d never speak. He didn’t know how to add 1 plus 1 until he was 14. I took him to Kumon and one instructor taught Michael and told him how much potential he has. Michael and him met twice a week and completed all the workbooks. In one month, he was adding in his head. In two months, he was doing multiplication. Everything in Michael’s life has shown me that if he’s not able to do something, it’s not because of intelligence, but it’s because of how the material is being presented to him. As a staunch advocate for your kid, you want to try different approaches until something clicks. That’s really been the philosophy to help Michael to give him opportunities that otherwise would be limited.
What has been the most important lesson you have learned through your advocacy with Luv Michael?
I think one of the most important things I’ve learned from Luv Michael is the importance of friendships for individuals on the spectrum. They need friends. The whole idea that they’re only into themselves is wrong. It’s just that friendships look different. I don’t think we really understand how important this is. Luv Michael became more about people coming together as friends and that’s why as important as working and learning is, we do many social events as well. Each month, the guys plan a social event and it’s awesome.
What are you most optimistic about for the future of autism research, acceptance and inclusion for children and young adults on the spectrum?
I am very optimistic. I feel that if people were less rushed to make judgements, they’d see that the guys and girls on the spectrum are really special. They all have special qualities that vary between each person. You also have to check your own stress before you begin to build a connection with them. They can sense that stress and it makes them very uncomfortable. It triggers discomfort on their end. I try to check my own anxiety before I interact. I also try not to have conversations on sensitive and upsetting issues when I am around the guys who are working because it can bring such negative energy to the space. There is also going to be tremendous learning in the future. We want to tap into their special abilities that tend to go unnoticed. One 30-year-old man came to work with us. He didn’t want to cook, he wanted to try computers. His Mom told us that he doesn’t know much about computers. He ended up responding to thousands of emails in two weeks. In South Hampton, we are beginning a new intervention to use vision therapy and EEG feedback to help the autonomic nervous system in adults with anxiety symptoms in ASD. By doing these noninvasive therapies, they are basically playing games and we can see the activity in the nervous system. We expect to see better focus and sleep. I want to find non-pharmaceutical ways to help the anxiety and stress in ASD.
What do you have to say about girls in STEM?
I obviously am very pro-girls in STEM. Even though my Dad was very old-fashioned, he was very pro-women. Since I was five years old, I’ve wanted to be a doctor. He always motivated me. I think we need women in all professions because they bring a sense of collaboration and empathy to every field they work in. Every aspect of society benefits from having women in that field.