As a parent of a child with autism, how do you find out about local events, workshops, or activities that are pertinent to you and your child?
Recently, I asked this question of two parents of children on the spectrum. One woman, the mother of a young adult with autism, told me, “It’s been totally word of mouth from parents – my experience.” Another woman, the mother of a teen on the spectrum, explained that she has a friend who has a state caseworker who sends out emails sharing many local events. Somehow, this mom managed to get on the mailing list that informs her of many activities that she is interested in attending.
Each of these moms was aware of places or activities that the other didn’t realize existed. No surprise with a word of mouth system!
This is in St. Louis. Maybe things are different in other places.
There is an organization in St. Louis called Mo-Feat (Missouri Families for Effective Autism Treatment) which has an online directory of various resources in the state. The providers listed in the directory have been recommended by families of children with autism. The document is very extensive and can be helpful, especially for families looking for help with some organizations that help people with autism, but some of the resources come and go. This is a good place for families to start.
But what about workshops and sensory-friendly activities and events that change each month?
These are the types of things that parents sometimes want to attend, but information on these can be hard to find – that is, until the event is over.
A computer search of 2019 autism events or sensory-friendly events in St. Louis yields programs for up to three years prior, but little for the current year. The especially frustrating part of this search is that, since the year is often not included on the promotion or article, it is not immediately apparent that an event is not coming up in the near future but is actually a Halloween event from 2017!
As part of my mission to keep the autism conversations going, I have been compiling a list of timely local events to list on my author webpage. I spend hours each week but yield very few results.
I am not sure what that says about available events. Are they not promoted efficiently? Or are these events lacking in the area?
I wonder if this is true in other cities.
I am now on mailing lists from several non-profits in the area and follow many pages on Facebook. I share events on my Facebook author page and add then to my webpage as I discover them. Often, though, I find out about events only a day before they are to occur (as well as three years later).
I find it confusing that if I read about a special autism happening at a particular venue, post it on my website after seeing it on social media, and attempt to locate and connect the link through the venue that is hosting it, there is often no mention of the activity. In other words, I can’t visit a site that has hosted sensory-friendly experiences in the past or that is hosting something this year, search the events tab on the site, and find the event. Yet it shows on social media or in the news.
Are sensory-friendly events a big secret? Why are they so difficult to locate?
Some of the movie theaters have sensory-friendly movies, but I don’t always consider their websites very user friendly for locating the time and location of these shows. Maybe I’m slow but finding the specific information takes me a while.
I am retired and I become frustrated. I can’t imagine a busy parent looking through all of these sites for information they want!
I would love to hear from you about how you learn about autism events and also about the types of events that most interest you: workshops, sensory-friendly activities, etc. It would be great to have conversations around this topic not only in St. Louis but in other cities as well.
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