French Translation: Peut-on « perdre » un diagnostic d’autisme?
I am an almost 60-year-old autistic woman who can navigate the world in a way that surprises some people when they find out I have autism. My teen years were spent in an institution because people did not know what to do with my “behaviors” or with me. Today I am a self-employed author, speaker, consultant and artist with a master’s degree in Social Work.
Question: Did I lose my autism diagnosis?
Official Answer: Yes and No
No, an Autism Diagnosis Cannot Be “Lost”
Technically, once a person is diagnosed with anything that diagnosis becomes part of their medical records. Doctors do not go back in time and erase a diagnosis, or in fact anything, from a patient’s medical records. This is against the law!
Yes, an Autism Diagnosis Can Be “Lost”
Practically, a diagnosis is derived by matching presenting symptoms to a list of diagnostic criteria for a specific diagnosis. Over time if symptoms are mitigated the diagnostic criteria may not be observable. Some say this means the person lost the diagnosis.
The Autistic Brain
In general we know the brain is malleable during the growing up years. We also know that early diagnosis leads to early intervention and the outcome of early intervention can be quite positive for some children with autism, in terms of getting autistic children to respond and behave like neurotypical children (if we consider that positive). What we don’t yet know is if these behavior changes represent a change in the brain – has the child’s autistic brain actually been changed into a neurotypical brain? At this point in time I can find nothing that shows this to be the case.
My Personal Experience
Every day I need to go out into the world posses difficulties for me. Most of my life has been spent solving these difficulties. My sensory system does not take in, process, store or retrieve information from the world around me like that of a neurotypical (NT) person. Lights are too bright, sounds are magnified and movement is distorted. I am often side tracked, bothered by or experience pain from a multitude of sensory details that nobody else ever notices.
Sometimes I use a variety of earplugs or sunglasses. Most times sensory integration modalities such as using a weighted blanket, having a massage or getting deep pressure input are helpful. The best solution I have found is to plan in plenty of down time where there is no noise and no interactions with others so my system can integrate the sensorily overwhelming experiences that make up an ordinary day. This means I rarely watch TV, listen to music or talk on the phone when I am home in the evening. Sometimes motion sickness pills are helpful.
I am exhausted at the end of a work day because it takes a great deal of effort for me to continually stifle my reactions to sounds, sights, smells and movements that others do not typically notice. I have to particularly pay attention to conventional social mannerisms such as remembering to look at people during conversation, track which words are “work words” and which words are “social fluff words” and respond accordingly. I work at this because I like to be able to fit in and in many respects my continued employment depends upon it.
I have become pretty good at figuring out the right combinations of down time, decreased environmental sensory input and sensory integration techniques I need to manage various sorts of days. The older I get the better I am able to guess correctly, but even so, I end my days with exhaustion for having “kept up” with the Joneses (in this case with the neuromajority!).
Some would look at me and say that I lost my autism diagnosis only because I have learned to inhibit most of my natural reactions and responses when in public. I seldom squeal, flap, moan or make extraneous noises. Because I want a ticket to participate in the world I have learned over many years how to act like a neuromajority person. This is a privileged position in that not all autistics are able to inhibit to the degree needed to obtain society’s tickets for participation. And, even though I can chose to fit in, I must pay the price for it every day because after decades of practice, this behaving “correctly,” though easier with more practice, still does not come naturally.
Going forward I believe we need to examine and consider changing our measures of success for autistics. This discussion will undoubtedly be further impacted in the future if science finds a way to determine whether the malleable brain of an autistic youngster can actually become the brain of a non-autistic adult. Until then, we need to ask if the outcome of being indistinguishable from peers is really valid or is as successful as we imagine it to be. And if so, for whom is it a measure of success?
Endow, J. (2013). The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment. Shawnee Mission, KS: AAPC Publishing.
Endow, J. (2013). Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press.
Endow, J. (2009). Paper Words: Discovering and Living with My Autism. Shawnee Mission, KS: AAPC Publishing.