Lara Schaeffer
 

Lara Schaeffer's Interview With Jackie Schuld, Art Therapist: "It Still Came as a Shock"

Updated: Nov 22



My name is Lara Schaeffer; I have identified as autistic since age 45, and I was officially diagnosed at NYU Medical School at age 47.


My daughter had all sorts of atypical presentations as a child, but I had her assessed for autism twice before she was three years old and was told there were no concerns regarding autism…that was because her receptive language was so strong even though she did not speak. Eye contact was no issue as well. By the time school started she was notably advanced for her age so we figured her differences were due to that. Three other instances before she was 12 of interacting with psychological professionals raised no autism concerns. But finally, at 15, we found out about her ASD. I knew instinctively that if she has autism, then I do, too. I raised her as a single parent, and she was an only child, and we were very close. Her behaviors, reactions to the world, ways of contextualizing her life…none of those were ever very concerning or notable to me because they were so similar to mine. I initially did not think it was important or necessary for me to be evaluated and to determine conclusively if I was autistic…I was that convinced that I was, and I did not feel the need for it to be validated by an outsider. But as time passed, I became more and more committed to autism advocacy, more and more committed to preventing what happened to me and my daughter from reoccurring over and over and over. With future advocacy in mind, I knew that it if I indeed am autistic, a professional diagnosis would be more effective in spreading awareness to others than if I simply just “figured” or “suspected” that I am autistic. While in many ways that all meant that I wasn’t very surprised when I was diagnosed, in certain ways it still came as a shock to officially learn of my autism. I thought that maybe my decades of masking and doing my best to act like everyone else would affect the evaluation. To hear the professional describe my differences to me was an odd epiphany of, "Yes, I really am not like most other people." Yes, for sure, EVERYONE is unique, everyone is different in their own way. But autistics are especially different, and we can feel it when interacting with others and negotiating every day life. In that way, my diagnosis was validating and affirming. I had been warned by my diagnosing professional that I might face what she labelled “skepticism” about my diagnosis. I didn’t really know what she meant until I revealed the diagnosis to my closest friend at the time. As I answered her questions regarding why I think I have autism, time after time she countered with something like, “Well, everyone feels that way,” or “Heck, I do that sometimes,” or “I have felt that way before.” It was so very invalidating and a complete shock to me after I opened up to her and shared my life-changing awareness. I eventually had to say to her, “I’m not here to argue over whether or not I have autism,” and changed the subject. Needless to say, we did not stay close. Finding out that I am autistic makes me a bit sad and a bit defeated when I look back at my childhood. I feel almost as if a big practical joke has been played on me. I’m not sure if that makes sense, but it’s hard to elaborate there. That particular feeling of pain is what has made advocacy and consultation necessary for me to pursue…I need to do everything I can to keep others from experiencing what I did. When I first received confirmation that I am autistic, I took back my own time. I recognized for the first time how much I mask in my professional life and even just casually out of the home, and I gave myself 100% permission to drop that damaging mask when I was by myself. I realized how much energy I expend interacting with others and allowed myself more rest in the evening and on days off. That came at the expense of keeping my home as tidy and organized as I used to feel compelled to do, but it was an easy give and take for me to decide on, as I needed to begin to heal. Now, even when in regular society or at work, if a difficult interaction or noise or smell affects me too much, I distance myself, or I protect my ears or nose, as quickly and as best as I can…it doesn’t matter to me in the least if that makes me seem odd to others. Now I also know how to prepare for, not just react to, overwhelm…to go into situations that I know will be challenging for me well-rested, with my defenses ready to help protect myself. It is empowering to know that my experience of the world differs from that of the societal majority, and to be able to use that knowledge to help myself live my best life.

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