![[CASPAN]](http://autismwomensnetwork.org/FAIM/wp-content/uploads/2010/09/CASPAN.jpg "CASPAN")
I was officially diagnosed with Asperger’s Syndrome (a form of autism) in 2004, in my late 20s. Before then, I had been placed in and out of various public school special education programs, given a number of psychiatric diagnoses, and never understood why most others didn’t want to play with me, talk with me, or what made me different from anyone else. In addition, I was basically shrugged off by most teachers and school personnel because my grades were high and I was well-behaved. My situation was even more complicated when my father passed away suddenly and unexpectedly of a heart attack at the start of my junior year of high school. Although my mom was always very proactive and worked hard to advocate for me and take care of me, my communication problems (which I now know were/are largely autism related) and my mom’s own personal challenges made it hard for me to get along at home sometimes.
After my diagnosis with Asperger’s, I couldn’t find any support in my area (Chicago metro) for adults on the autism spectrum, only for children and parent’s with young children. I started a support group on meetup.com called CASPAN: Chicago Autism SPectrum Adult (and teen) Network. After the group rapidly grew, I learned that many people were driving more than an hour to get to the groups. Some members offered to start similar groups in their regions of the Chicago city and suburbs, and now we have several groups that meet monthly. We have also started a womens group that meets every other month, and we often schedule social activities and attend conferences that come to the area. The meetup site now has over 300 members. These groups have allowed many adults on the spectrum (including myself) to make friends, learn about resources, and understand that I am not the only one that has gone through feeling overwhelmed, isolated, unaccepted, and inadequate.
Our Facebook fan page (with link to meetup site) is:
http://www.facebook.com/home.php?#!/pages/Chicago-IL/CASPAN-Chicago-Autism-SPectrum-Adult-and-teen-Network/160513696571?ref=ts
Hi Katie! I can really relate to your story, and most especially when you describe the difficulty with getting acknowledged due to having such good grades in school & being well behaved. That was my situation to a T!!
My mother always saw my challenges, but because the school didn’t recognize them due to my high grade scores & good behavior, my mother could not find anyone who would take her concerns about my social & communication deficits seriously.
This is typical among females on the spectrum, and due to this, we are more commonly diagnosed well into adulthood with ASD’s. In turn, females often have a longer history of challenges with employment and relationship issues before we come to the attention of professionals.
Flying under the diagnostic radar drastically hinders females from acclimating into the various cornerstones of society with respect to maintaining secular employment, communications and falling prey to toxic people.
Thank you for sharing your story Katie as ell as your support of the Autism Women’s Network!
Katie, I relate so much to your story. As Sharon points out, so many girls and women fly under the radar because we are high achieving and don’t give anyone any “trouble” (except, of course, ourselves). I was the poster child for compliance and cooperation when I was young, and it wasn’t until I became an adult that I began to name the difficulties I was having. It took a great many years after that to identify them as neurological rather than psychological, but I got there. It’s always affirming to hear that other women have gone through similar things. No matter how many times I hear it, it always gives me a little more peace.
I love that you were able to start a support network that has grown by leaps and bounds. More power to you!
Katie, I admire how you took your search for support as an opportunity to create a support network of your own. I’m also very happy to see you’ve had a tremendous response to it as well and how CASPAN is continually growing. It often takes situations where resources are lacking to create something great out of it. Good for you!
Thank you for sharing your story and for extending your support to AWN.
Thanks everyone for the support and encouragement.
I didn’t start the meetup group right away, but as I waited around, I realized that if I didn’t do it, no one else most likely will, either. If I want a group, I need to start one. That was in March 2006. Although we have well over 300 members, it has taken 4 1/2 years to get to that point. We also list/promote a couple of groups that started and stand on their own-either they didn’t exist or I wasn’t aware of them at the time I started CASPAN.
Still, I am surprised when I table at many autism gatherings and conferences how people are still pretty much always looking for services for young children and their parents, and hardly anyone looks for anything for grown-ups. I’m happy the services are available for the kids and parents, but it would be nice if we could have some as well. In IL, you don’t qualify for any services if you are not either Mentally Ill or Dev. Disabled.
We are also working with GRASP ( http://www.grasp.org ), and CASPAN has a good relationship with GRASP and their director, Michael John Carley. 2 of the CASPAN groups are official GRASP chapters, with one being the Women’s group.