If you want to know about people with autism, ask them

One Reply to “If you want to know about people with autism, ask them”

1. I identified several factors that are very interrelated, but contribute to the challenges with being autistic during this phase of my life:

   Factor 1. Higher demands for communication/ EF (executive functioning) demands
   In general I find EF to be a significant contributor to stress. The demands within a workforce to respond to texts and emails, communicate are significant. Additionally managing calendar appointments, coordinating schedules with husband, children, and continuing to meet work obligations, with the expectations to exercise communication skills conforming to neurotypical standards leads to a series of autistic shut down or a meltdowns. Neurotypical people within the workforce demand a lot of social interaction (and I include email and texting within that) much more so than when I was ever in school, and seem to increase and persist in early and middle adulthood. I have to communicate more now than I ever have, at any period of my life. I believe the demand for being on call for communication with texting and email, does not give the opportunity for autistics to regroup and recuperate. I believe the continual stress over periods of years could even alter and change the brain.

   Factor 2. Executive functioning demands + Emotional processing
   As a parent of three children, the demands for emotional processing emotional regulation are significant. It takes a lot of energy to process emotions and self-regulate, and my brain has a very difficult time switching between emotional regulation and doing any other tasks. When I am advocating for my child in school and experiencing difficult emotions, it can completely wipe me out and it is difficult for me to perform any other activities. There are many myths regarding the energy it takes to perform social communication tasks, and accepted “ social skills”. By all accounts I have very good social skills and will pass as NT, however it takes all of my energy to perform as a neurotypical. I need to analyze social situations, as well as practice (scripting and rehearsal) in order to perform these skills is very time consuming and draining. I spent so much time as an adolescent and in college studying neurotypical people, reading self-help books, asking friends about how to perform neurotypical tasks, so I have developed advanced patterns around interactions, but it is very intentional and not an embedded skill. One thing I really needed to learn was how to understand my own internal emotions ( address introspection, alexithymia). A huge gap for neurotypicals that work with autistic children is when I see interventionist teaching children to identify feelings by looking at pictures or other people, but there is no time spent identifying their own emotions. All of my girls have learned to identify emotions and can tell me the correct emotional vocabulary word that corresponds with pictures in books, but they cannot tell me how they feel and the action to match with the appropriate feeling. Given that I already have difficulties with alexithymia, in regards to reading my own internal emotions, masking exacerbated the deficits in reading my own emotions by placing all my energy into mimicking and preforming neurotypical, thus virtually erasing or ignoring my own perspective and emotions. While passing and masking can be a protective skill, I believe that it is harmful for autistics to not be taught to understand/ read their own emotions and explicitly learn self-acceptance, self understanding, introspection. I am excellent at read reading non-verbal cues micro expressions (high interest area I researched in high school/college), and probably surpass many neurotypical folks in this area … but up until a month ago, I couldn’t tell you about my own internal emotions. On a very logical level I could provide the accurate emotional literacy word (as this is a social norm and script) but I do not use my internal emotions to guide guide me or to self regulate. An example would be if I’m already overwhelmed at work, I would take on volunteering opportunities and many other tasks because I am not reading that I am overwhelmed. The lack of self-regulation or self-understanding coupled with poor executive functioning skills leads to a significant source of stress.

   Factor 3. Parenting
   I think this factor is self-explanatory, but being a neurotypical parent is difficult, and being an autistic parents is even more difficult. Given that many autistics have complex PTSD, and many of us have school-related trauma, it is very difficult to watch your child go through an experience and it can be very triggering. The desire to be an involved parent and go to all of the the school functions, plan playdates, becomes an additional stressor with EF, masking.

   Factor 4. Self-Awareness+QOL
   Lack of understanding of how to be a “healthy autistic” – no emphasis of teaching/ learning QOL, and compensatory executive functioning strategies, emotional regulation pieces, as well as impact of sensory issues. I have significant sensory processing issues.

   Factor 5. MASKING
   Masking should be added to every area that contributes to stress. There is only so long that you can engage and mask skills before you either lose your identity, or become so exhausted that you can no longer function. Masking was somewhat easier early on in my life because there were other areas that were less demanding. School has more structure there’s less demands around executive functioning and multitasking, so I could engage in many masking behaviors but then have time to recuperate at home. Also, as a younger person I could be myself more with trusted friends, and had less interactions with new people. In my job, I have less interactions with trusted friends, and spend more time masking.

   The 34-35 year was more significant, because I had more balls in the air, and more at stake…this was also the year I was DX, and came to understand who I was as an autistic adult.

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