As much intensity and relevance as I poured into 30 days in a row for autism awareness and acceptance, one thing is clear: the autism experience is a lot longer than only one month and more than any one person. I did it for 30 days to show my commitment to all autistic people everywhere. This takes a lot of energy for me to write for this long while the walls of my life close inward with stress.
But there is something important I want to do next, and that is to say thank you. This journey is not easy. Whether or not you are autistic, I want to thank everyone for reading my writing because much of this story transcends autism. It is a story of everyday human life. This second major journey in my life is just beginning, and I am very grateful to have people to share it with. There are more eye-opening experiences waiting to be explored.
In early 2020, I was forced to switch providers, and it was not until October that I was finally assigned a new psychiatrist. But they were pulled to the nearby hospital, which forced me to reschedule. This was very frustrating, yet it revealed something insightful. With my mental healthcare experience, I can only schedule my counselor and case manager for a maximum of one hour a day, one day a week.
The scheduling for psychiatrists and nurse practitioners has been every couple months at a time. The abrupt changes in schedule made me see something very basic that was rather unsettling. Out of a total of 168 hours in one week, I only see my case manager and counselor for a total of two hours. Once I realized this, any impression I had about having a safety net for healthcare treatment went shrieking out of the nearest window. Literally.
Only as much as two hours for the core elements of my care. I do know that healthcare options vary per location because I have come across some who can schedule their appointments more frequently. I anticipate that insurance coverage plays at least a partial role in this. Though here I was, late-diagnosed as an autistic adult and faced with a dilemma. I found myself seeing that the general care options I had were not only non-specific to my adult autism needs but also limited to just a few hours a week at most.
Contrary to what children have available for their care, there is nothing frequent enough for my needs now. There is nothing that counters all the social factors in my life that influence my mental health each day. Only one hour a week is for counseling. If they cancel, which has happened frequently for me, I do not have any safety net.
Do not get me wrong. If not for the diagnostic capabilities of modern mental health treatment, I would not be sitting here today, writing this. At all. And the counselor whose hunch changed my life was not autistic and was inexperienced with it. I owe her everything. Despite this, and with the utmost respect for the care providers I have had, I cannot ignore or stay silent about the truth of “adult care” that is touted as “autism care.”
For the sake of adults, both diagnosed and undiagnosed, this must become common knowledge and be addressed as soon as possible. Not all autistic adults are as strong as I have been fortunate to be, and I am struggling myself, as I have shared. The autism experience is a lot longer than only one month to tweet hashtag-filled awareness messages, hoping a CEO or psychology association will take notice.
Autism is a lifetime experience. Young, middle-aged, or older, it is time for healthcare providers, psychology, and psychiatry to recognize this and step up. There are likely far more undiagnosed autistic people than many experts realize, and not because of overly inclusive or lax standards to count your average person on the street. Autistic youth are still the only ones who are counted for statistics.
Include us, the actually autistic adults, and the numbers will go much higher.
#LetThatThinkIn
Welcome to the next Autism Experience.
A Stunning Revelation of Special Interest.
