Our Children Need A Village
What does Autism Acceptance Month mean to me and my family? That’s a good question, and one that is hard to answer without causing a stir, so I hope you will read this with an open mind.
My husband and I have four children, ages 30-40, three sons and one daughter. Our second son has severe autism, although he may appear at times to be “high functioning,” because in some ways, he is. I started advocating for “autism awareness” more than 30 years ago, when very few people in my community even knew what autism was, or knew anyone who lived with it. I used to make pins, then bracelets, bookmarks, lanyards, key fobs, or anything functional that people would be attracted to using, out of the now infamous puzzle print ribbon. I peddled my wares everywhere and anywhere I went, and accepted donations from anyone who wanted to give them to me. I made it clear that I was not selling anything, I was just spreading the word about the need for autism research, because I firmly believed, and still do, that it was the only thing I could do to help my son and all the others who needed services. I believe that research is what drives progress, and without it we would be thought of as just giving our emotional opinions about what we need for our children, rather than facts.
In those days I set up (with permission) in front of my church, in front of Shop Rite, at high school cafeterias at lunch time, in corporate office parks, at flea markets, street fairs, anywhere I could reach a lot of people. In the beginning I did this mostly in April, but then my work became a year-round project, and I always had my puzzle print items with me. Every penny I made went to autism research. By November 2006 this relentless activity and outreach lead to the cover story in Newsweek and an appearance with my family on the Today Show. The word got out, and the reach was world-wide. It was all positive, everyone reacted with hope and expectation for the good things to come from the publicity of the question “What Happens When They Grow Up?”
Once I realized I was offending a group of people who I previously thought I was helping, I took a big step back.
It's now so many years later and it’s all changed. Over the years the well – intended blurb that I used to attach to each item I made and gave away became a message of mixed reactions from self-advocates and people of the neurodiverse community. Once I realized I was offending a group of people who I previously thought I was helping, I took a big step back and created my doll business, instead. This became my vehicle for outreach, and I was very happy to be reaching so many very young children and families with my message.
Over the years of public outreach I had discovered that when I was talking to/trying to convince an adult who had no clue about the growing need for people with autism to be cared for in every community, I was already too late, and that I had to regroup and start with children. As a special educator and a mother I knew that typical children were going to school with other children who had autism, so my mission became “teaching them to care for others that learn and grow differently than they do.” My Sibling Dolls.com was launched on my 50th birthday, in September of 2007, and a few years later I added My Pal Dolls, with an even broader reach. They included My Pal for Autism Awareness, My Pal for Peace, and many more… and I was still using the autism awareness puzzle symbolism, because I thought my soon – to – be – customers were searching for it. At the beginning of my “work experience program,” as I called it, I had developed relationships with schools for children with autism, and gave them job sampling work for them to do as part of their transition programs starting at age 14. I traveled within an hour radius of my home, delivered the dolls, clothing and accessories, and then picked them up a few weeks later when they were completed. After that program had to be closed due to the changing and increasing demands being put on special ed teachers, my dolls were then outfitted and packaged by adults with disabilities in a sheltered workshop in Montclair, NJ. Our son Danny worked at that extended employment program for many years, and benefitted from the great joy the dolls brought to the program. Unfortunately, due to health reasons I had to close my business in 2021, and I was saddened by the thought that my message of hope would slowly be silenced, because by then the autism community had become so divided that it had become controversial to use the language and symbolism I had been using. Believe me, I had tried to keep up with being open minded and considerate of others’ views, but it just became impossible.
So, “autism awareness” being changed to “autism acceptance” brings with it a lot of mixed meanings for me and my family, because we were always trying to promote both concepts in a very positive and productive manner. My disappointment comes with thinking about how one begat the other for some negative, divisive and offensive reasons, and I hope that we can move on from that.
Whatever term we use, in April or all year long, we need to make sure that the public learns from us that our children with severe autism need “a village” to care for them, that the task of fulfilling their needs is beyond the scope of what a single family can provide, and that there is a public health emergency on our hands that requires research. Nobody can convince me that this isn’t a puzzle that needs to be solved.