Interview – Judi Whary talks about son Michael, who made autism awareness video that went viral.

Jo Worgan

11 years ago

Grafton, Ohio – Last moth we covered the story about the intelligent and energetic 16-year-old, Michael Whary, who created a 13 minute autism awareness video for his Eagle Scout Project. Michael has autism. You can read our report; Boy scout with autism makes autism awareness video here. here.

To date the YouTube video has had 24,695 views.

Below is Michael’s video, which we think is pretty amazing.

We got in touch with Michael and his mother Judi, to learn more about Michael and how the viral reaction to his video has impacted upon their lives. Below is our interview with Judi.

Can you tell me a little about the early years with Michael and when he was diagnosed? Did you know or have a feeling that Michael was on the autism spectrum?

Michael was diagnosed at two and a half years old. At that time, there was just not as much information available about autism. He taught himself the ABCs with the stencil in an hour and a half when he was 18 months old. He had the proper amount of words for his age. We had for him the “Your Baby Can Read” videos which were great at teaching language. What only I could see, was that each word was spoken with the same tone and same inflections, every time he used that word. We had his hearing checked because we thought he could be deaf. Being a first time parent, everything I was describing to other parents, they would just tell me that every kid does that, but it was never the same as what I could describe. For example, Michael was a very early reader. Other kids read early, but my kid read the phone book and knew the numbers and addresses of everyone in it at 3 years of age. Michael would often line his toys or his father’s shoes in a straight line. Then, he would run next to the line looking out the corner of his eyes. We finally called the doctor and expressed our concerns.

Michael seems to be a very social and likable young man. This comes across so easily on screen. Did Michael struggle during his younger years? What support did he receive? What support did you receive as a family?

Where we live it is illegal not to educate your child so legally the schools in our district were our main option with his education. We are very fortunate to have a good and understanding school district that are true advocates of education. He was issued an Individualized Education Program (IEP). Michael received speech therapy and occupational therapy through Midview Local School District. We gave him private speech therapy and music therapy too. It was not covered by our insurance and the burden of payment fell to us. Michael has known of his Autism since third grade. He has been involved with all the decision making on therapy, treatment and medication. This helps him feel in control of his own life.

I think it was in third grade when he was finally able to tell me what he “did that day”. I remember him not saying it, but singing it and ‘backwards’ starting with what he just did and working up to the morning activities. I was smiling from ear to ear with excitement. Sometimes I think “We are the only parents who love it when our children talk back to us!”

My husband and I own our own business and don’t work regular hours. Keeping a regular schedule would have been impossible with our careers, so we taught to Michael that change was the regular schedule and it worked. My husband and I are very outgoing. Michael is very outgoing as well. Michael loves acting and being in front of people, even though many of his actions are quite parallel instead of interactive, we always reinforced that he was a part of the group, giving him confidence. This all helped a lot with his communication difficulties.

Can you tell me a little about the Eagle Scout project?

Eagle Scout rank is the highest rank achievable as a Boy Scout. There are many requirements including two years in Scouting , leadership positions held within the troop, a certain number of merit badges which are earned through learning about a particular skill, a certain number of days on outings and of course a community service project. The Scout is responsible for getting a sponsor, creating an idea for a project, getting approvals, funding, material, leading the project, and reporting on the project. The scout then applies and participates in a board of review where he is interviewed by a panel of adult Scout Leaders. These projects and the workbook associated with the project usually take a scout six months to a year to complete. Eagle Scout rank is acknowledged by business owners, colleges, police and governing agencies and even the US military. Being an Eagle Scout carries a lot of status because of the dedication it takes to complete the rank.

What inspired the project?

When Michael was 12-years-old he got sick. In the hospital one of the EMT’s was visually amazed at Michael and his behavior. He talked to us more about what Michael had gone through. His nephew had recently been diagnosed with autism. Michael gave him hope for his nephew’s future. Michael felt that if he could help this man to understand, perhaps he could help others as well.

Michael currently goes to the Children’s Developmental Center f or “social club.” The center is very supportive of their students with anything they want to achieve. Michael discussed the project with his social skills teacher. Then he made an appointment with the office manager and director, were he pitched his idea. They were more than happy to help with whatever he needed. The CDC will be using this video as a marketing tool to help convince parents of the benefits of early intervention. We scheduled the lip dub [featured in the song at the end of the video] on a date when the CDC was hosting another event. We benefited from having all the teachers and some of the students available to us [on the day of filming]. We also went recruiting at different scout meetings, town hall meetings, an email blast, social media posts and even an advert in the newspaper. We had over a hundred people to help shoot the lip dub.

Did Michael direct the film? Was it all his vision?

This was definitely Michael ‘s vision. He wanted something inspiring and upbeat. He wanted parents and caregivers to acknowledge the situation they were in with their children. The words in the beginning relate to what a parent goes through initially. The other parts let them know there child will be useful, successful, have friends, hold a job, and be happy. It was not an easy decision to let him do this video as being so public has its downsides as well. But he convinced us the message was too important to not take the risks. Michael is very open to suggestion, as long as the suggestion was not to do a different project. He insisted on doing the video.

Yes. Michael directed the whole thing. He took script advice and he took filming advice from his videographer and me, his personal assistant. However we are filtering his promotion of the video to shelter him from less scrupulous people. We were very surprised that the video went viral because it is 13 minutes long. We anticipated about 5000 views.

Since the video went viral what response/comments have you received?

We are very pleased his video has touched so many people and happy to report that the center has received calls from parents seeking help with their children’s education. One of my favorite comments was from a lady who had just had a rough day with her child and of how it gave her hope and strength. Teachers, speech therapists, scout masters and youth group volunteers are using the video to educate their children on what it is to be autistic. I have heard of a scout group in North Carolina showing the video to its members. Several teachers at his high school and in the lower grades have shown the video during class time. The spectrum school in our area has viewed the video. We have been asked to be of help at the Milestone National Autism Convention this summer by the keynote speaker. We have just been contacted by our state educators support team who asked permission to use the video.

We are on websites all over the web, including Yahoo.com, and have been viewed in one hundred and fifty five nations. But my favorite is when they announced him at his high school pep rally and the kids gave him a standing ovation .If it sounds like I’m bragging about my son, I just might be a little. But actually, it is so gratifying to know that we have been able to help and humbling to receive such heartfelt responses. We have been overwhelmed by the response that we received. We have been flooded with personal and flattering comments from those celebrating their and our accomplishments, to encourage others to try again and keep trying.

With the truth that 1 in 50 boys being diagnosed, the chance that a person will come in contact or know a person or family member with autism… is certain. So we are receiving feedback from people with varying backgrounds, educations, cultures, careers, situations and interests. Many have quoted back the parts of the video that affects them and we are surprised by all the different quotes.
The overall message is that a diagnosis is not the end of the world. I particularly liked that Michael told that autism does not need to be fixed. What have his experiences been as a young man living with autism in the local community?

We have always expressed to Michael that he has to do more than a regular developing child because so many people won’t believe that he can do the things he has done. I think that is his main difficulty, that others don’t think he can do it, and won’t give him the extra time that it takes for him to do his work. It is difficult for some people to be patient. In scouting, they have a policy. “Don’t do for a child what a child can do for himself.” So that is the policy we keep.

Does Michael have any plans to make any more films?

I don’t think Michael will make any more films but he loves acting so it’s not out of the question.

Does Michael have a message for our readers?

Michael said. If you can’t watch the whole video, then the last four slides say the message he wants to get across. “It’s Not your Fault” “You’re Not Alone” “Early intervention is the key” and “With proper education many can lead an independent life.” So parents please, seek the help your child needs to learn.

We would like to thank Judi and Michael for taking the time out to answer our questions and for the uplifting and thought provoking awareness video.

We would also like to wish Michael all the best in his future as an Eagle Scout.