Home // Autism // Autism’s Secret Society

Autism’s Secret Society

Four or five years ago, I was talking to the mother of one of my daughter’s classmates. We were talking about things to do with our children and she asked me, “are you on the list?” I had no idea what she was talking about. When I admitted my ignorance to her, she produced a poor-quality flier from her purse. It had a grainy black-and-white photograph of children playing in a gym. Attention All Families With Austim,” it read, “We will be having an event at [REDACTED]* this Sunday from 2-3 p.m. Please call [REDACTED] to RSVP and email Mother Jones** at [REDACTED] to have your name placed on the list for activities of The Group.”

I wondered what this was all about. When I asked her who Mother Jones was, the fellow mother shrugged and said, “I don’t know. She seems to have been around as long as I know. And she has an autistic kid herself, so she just started organizing things for the kids to do.” So, I got myself on the list, and I discovered that around here, the autism community has its own secret society.

Growing tired, as so many of us do, of going out in public and dealing with the general public and the annoying expectations of some people with “normal” children, Mother Jones began organizing huge play dates at various places in the community — sometimes the number of children that show up is in the hundreds. She rents movie theaters and shows sensory-friendly films, indoor and outdoor pools and water parks, playgrounds, dance halls, and just about any place you could think of for recreation and disseminates information to the people on her secret distribution list. It’s all in an environment where you are surrounded by people who “get it.” I’ve met a number of other families through the years at various events, and the parents (usually mothers) of young children tell me how isolated they felt until they found The Group.

Last year, Mother Jones finally organized a 501(c)(3) to cover any out-of-pocket expenses she incurs that she does not recoup through admission fees. She sent her distribution list telling us all about it. The next time I saw her, I asked her how much of her own money she’s laid out over the years, and she wouldn’t tell me. “Why the tremendous secrecy,” I asked? “Wouldn’t it be better if she could reach more people in the community by getting the word out?” “Not really,” she answered. “The events could actually become too large to manage. The word-of-mouth method has kept the numbers manageable over the years. It also allows me to vet each and every person who asks to be added to the listserv to prevent creepers from gaining access to our kids.”

She does vet everyone who is added to her listserv. How did I hear about her and where did my child go to school? How old was he or she and where did we live? Because both my children are on the spectrum, I was added to The Group’s activities for older and younger children. But we can go to whatever suits our family. I am very grateful that Mother Jones has taken this initiative and that she is so nice to our children each time she sees us. It’s a great relief to me to have somewhere to take my children to get out of the house on the weekends that gives us all something fun to do as a family. And I’ve met some really nice families through The Group. I’ve come to learn that not all secrets are bad. In addition to avoiding the “creepers,” as she puts it, the secretive nature of the group gives it a feeling of real security. You know the people you meet there are looking for the same things you are, and are in similar circumstances. And there’s real comfort in that.

As for Mother Jones, she continues to groom The Group and thinks up new and fun things to do. And she does seem to know the right way to get the word out. My children started seeing a local doctor about two years ago who has a practice exclusively devoted to children on the autism spectrum (after spending about six months on a waiting list). He was talking with me about the importance of getting out with the kids and doing fun things with them in a safe environment. After a moment, with a tiny bit of trepidation, he cleared his throat, paused and looked at me and with a sotto voce said, “have you heard about Mother Jones?” He has an autistic son and is a member of The Group himself. I laughed and told him that I had. Then I smiled and said, “I see she trained you well.”

*Any detail about this group has been omitted at the request of its founder. I told her about this post, and she begged me to try and conceal identities and information so that only those who already know about The Group (not its real name) would be able to ascertain about who and what I was speaking. I have honored that request.

**Obviously, a pseudonym. I named her after my favorite community organizer.

Posted in Autism, Parenting and tagged as ,
Add Comment Register



Leave a Reply