Are there any high masking women who have been assessed for ASD and felt that the assessment captured their lived experiences? If not, how did you navigate the experience and advocate for a more comprehensive one? If so, tell me about your positive experience.
Are there any high masking adults out there who have been assessed for ASD and felt that the assessment captured their lived experiences? If not, how did you navigate the experience and advocate for a more comprehensive one? If so, tell me about your positive experience.
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I am established with a KP psychiatrist for med management and KP gave me no issues with my request to be assessed for age ultimately diagnosed with ADHD. When I posed the question of ASD with my psychiatrist I was told that their resources are limited for adults and it’s a time intensive endeavor to undergo ASD testing and it’s reserved for people who have greater needs than myself. This message included a great deal of links (just counted- there are 41) I could use to basically help myself coupled with the offer of a brief screening to help me determine if I may have ASD.
I was affronted by the message and contacted the outside referrals line where I was instructed on how to schedule an appointment with a nearby facility that performs adult ASD testing and urged to file a grievance if my request is denied. I was able to schedule an appointment and was assigned a LMFT for a screener. The screening appointment was not what I was expecting.
The first portion of the session was open-ended and focused on collecting data regarding my social history-education, employment, family, confirmation of any present mental health conditions, substance use, current or prior friendships, etc. Once that data was collected we moved on to a series of question to which I must answer yes or no with yes meaning I experience exactly what was asked and that experience impairs my ability to function. That was followed by a series of statements in which I must answer yes or no without functional impairment being relevant (this section appeared to be a list of symptoms that would signify that another psychiatric condition was present). That was the end of the screener.
The LMFT stated that I didn’t have ASD but instead my symptoms were all ADHD related and that I just needed to get to know myself better. The LMFT asked if I understood and I stated yes. I asked clarifying questions because while yes, finally having a name for so many symptoms and experiences that have been labeled by prior therapists as one thing or another, one that felt so aligned with my life experiences would have been a relief and very validating, ultimately I would keep working on the difficulties I experience and be okay. What took me aback was the LMFT’s responses.
In response to my questions I was told that my inability to understand others’ emotions but ability to recognize that something I must’ve said or done didn’t sit well with the other person as I’d notice a shift in their behavior is because I have ADHD and wasn’t paying attention and that that someone with ASD wouldn’t know if they said or did something wrong to cause a tonal shift. Additionally, I was told that if I did have ASD I would not have moved so often; the routine disruption would have been too great. This left me greatly confused because at no point did we discuss how my ADHD-c presents itself or why I may have moved so much or what that experience was like for me.
The entire experience was emotionally overwhelming and frustrating. In the end I decided to correct the LMFT’s assumptions and was requested a second appointment as they would like to review my chart to see if they missed something. Still, no mention of asking me about my actual experiences.
I’m tired of fighting so hard with Kaiser healthcare system for comprehensive care and really want to cancel the appointment the LMFT requested as I have no interest in repeating any aspect of that experience with someone who felt comfortable vocalizing assured but unsupported statements.
Has anyone navigated this labyrinth of a system to receive a culturally competent and thorough ASD assessment? If so or if not, tell me about your experience.