The United Nations established April 2nd as World Autism Awareness Day to raise consciousness about this lifelong brain development disorder that affects 1 in 68 children and impacts social interactions, learning and communication. Awareness is great but, acceptance and understanding are better. As is with any cause or issue, we must take the knowledge gained and insert it into our daily lives. It's not about one day, it's about every day.
Scott Badesch, president of the Autism Society of America makes this point better than I can. "We must do more than raise awareness — we must call attention to the diverse needs of people with autism and the challenges they face. The greatest message ... is that every person who has an autism diagnosis must be fully respected, valued and be provided a life of the highest dignity, Unfortunately, we are not there yet. Poverty, denial of appropriate and required publication public education, unemployment or significant underemployment, denial of housing options, and way more are unfortunately common characteristics of autistic individuals.”
All too often awareness does not lead to acceptance and understanding in every day life. If the challenges of autism are to be met, it will take a culture shift, and action from all of us. It is my hope that those who read our story, and the stories of others, will take a moment to reflect on their neighbors, friends and those around them in schools, stores, events, and day to day interactions. That they will step outside themselves and help our society truly be more inclusive, not only of those with autism, but also those who live with, work with, and care for those with autism.
Our story is familiar and not unlike many. In many ways our story has been a success, but not without challenges. Some of you may have met Patrick, and if you drink Morning Glory Coffee, then you have enjoyed the results of his natural ability to roast terrific coffee. Patrick was diagnosed with Autism Spectrum Disorder just this past week, March 27th, 2017 at the age of 22. Due to a series of life events, other family health issues, and a lack of health insurance coverage, it has taken us seventeen years to reach this point of diagnosis. Patrick has always been high functioning which when he was younger made his differences and difficulties hard to see for those other than immediate family. We did however live the familiar day to day life of many people caring for someone with disabilities. We knew something was different, we just did not have the professional help to address the issue. This meant we were alone as a family to make the best of our situation. We were constantly defending, protecting from, and explaining to strangers and friends. Why does he act that way? You should keep better control of your child. Why do you home school, you should have him in school. Why can't he read, he has to read aloud or leave the group. My favorite has always been... You know what you should do....
After multiple attempts at cub scouts, church school, day camps etc., it became easier to insulate ourselves as a family and spend all our time together rather than expose Patrick, and ourselves to a new set of anxieties and questions, every time we tried to be involved in social or public events. Patrick was for the most part happy doing his thing at home, and as he got older, along with his very supportive brother we were able to attend events and movies with relative ease.
When Patrick turned seventeen we decided to try out roasting coffee as a skill. He was having an easier time with reading and basic social interaction so we felt the timing was right. Patrick took to roasting coffee very easily, making it his own, but then came a new challenge. Our retail and coffee roasting businesses are in the same room. The original intent was so we could interact with, and educate customers. The area where Patrick was working had very little separation from the public. This meant that aggressive customers would randomly ask questions of Patrick, who was unable to reply. The lack of understanding from people was unnerving, and more inappropriate than any of Patrick's behavior or lack of social skills. Customers were pushy and impatient. They would intrude on his work space expecting him to answer questions. This challenge would continue until we installed a larger roasting system, and effectively closed off access to the roasting area from customers.
Our experience in the shop, is a great example of, not only the need for awareness, but also the need for acceptance. Before you charge into and judge a situation without knowing, take a moment to consider that the person you are confronting may be on the spectrum, it is not always obvious at first glance. Patience and understanding are key, everything will be just fine if you take a moment to be considerate of the boundaries of others around you .
As for Patrick, now that he has a diagnosis, a whole new world has opened up for him, to not only to receive help, but to build relationships outside of work, and the immediate family. He will continue to work in the family business, improving his skills as a coffee roaster, and he will confront his challenges with the knowledge that he has a great support group of family and friends. He is also learning that he belongs to an incredible group of individuals worldwide.
I am thankful to the United Nations for creating this day, thankful to everyone working to make life with autism easier to live with, and especially thankful to Patrick, and every person with autism. You make the world a better place to live in.
Here are some great links with information on austism
Autism Science Foundation
Autism Society of America