At different times during my growing up and even during my adult years autism wasn’t something people knew much about. I often came in front of mental health professionals. It is important to know that if you go to a mental health professional or take your child to a mental health professional in all probability you will walk out with a diagnosis of a mental condition as found in the DSM-5 – otherwise known as the Diagnostic and Statistical Manual of Mental Health Disorders
In my adult life I obtained a master’s degree in social work. I did clinical work diagnosing and treating people in psychiatric settings. Eventually, I limited my practice to autism. When I worked as a clinician, to give a diagnosis a checklist description of a particular diagnosis needed to be fulfilled by the patient in order to diagnose a patient with a particular diagnosis. Even if I didn’t know for sure if the patient met the criteria for a particular diagnosis I would need to write in a provisional or working diagnosis for the patient’s medical records. This was necessary for the clinic to be able to receive reimbursement from the medical insurance company. Therefore, when a person receives services from a mental health clinic, that person will wind up with a mental health diagnosis, whether they are told that diagnosis or not, it will be in their medical records.
Have you or your child sought out the help of a mental health professional? If so, it may be wise to find out if the particular provider you see has experience working with people who have an autism neurology. This is because what can appear to be a psychiatric symptom can sometimes be more accurately described as a function of autistic thinking. The distinction is important because it drives treatment.
Example: Hallucinations need to be treated. Thinking in pictures does not.
When a person with autism reports their experience are you quick to negate it only because your own neurology informs you differently? You may not be able to share the experience of an autistic because your own neurology is set up differently, but that doesn’t mean the autistic experience is any less real than your experience! It only means it is different.
Case Example: Tywanika, a second grader, was most upset because the swing she loved to use on the playground was shooting molten space daggers into her eyes. The swing only did this during afternoon recess. The swing did not shoot these molten space daggers during morning or lunch recess.
Both her teacher and her assistant assured Tywanika that molten space daggers were not real. They were trying to be helpful, but their words did not negate Tywanika’s experience. It was more helpful to gather information from Tywanika about these molten space daggers as she was well able to answer questions. She revealed that the molten space daggers lived in the swing chains and only speared her eyes in the afternoon.
What looked like a possible psychiatric problem turned out to be something much different! The molten space daggers phenomena first started on the Monday after the springtime change where clocks are moved ahead an hour. This made Tywanika’s recess time coincide with the sun at a slightly different level in the sky. As the sun rays bounced off the metal chains of the swing Tywanika’s sensitive sensory system noticed the difference in a way to cause her experience to be that of molten space daggers being thrust into her eyes.
When Tywanika was taken out to the swings an hour earlier and an hour later in the afternoon the problem did not occur. Tywanika could then understand what was happening. It was only a few weeks until the sun had shifted enough that the bright reflection off the swing chains was no longer problematic.
NOTE: The above is excerpted from my book Painted Words: Aspects of Autism Translated (Endow, 2013).
I take the time to explain this because while I was growing up I have received mental health diagnoses that were not accurate even though I met the criteria to receive each of the diagnoses at the time they were given. For example, when a teen I was asked if I saw things that other people don’t see, if I saw things that really weren’t there, if I heard voices that others don’t hear, etc. The answers to all these questions were “yes.” Because of my autism neurology, even though I hadn’t yet been diagnosed with autism, my sense of sight and sense of hearing delivered much more detailed information to me than was typically experienced by the majority of people. This was a function of my autism neurology rather than indications of schizophrenia. Thus, treatment for schizophrenia was not at all successful. (Endow, 2009)
In conclusion, an autistic person, just like any person, can have comorbid diagnoses. My point in this writing isn’t to negate that reality, but rather to caution that we need mental health diagnosticians and therapy providers who understand autism neurology to prevent the errors of assigning unwarranted clinical symptomology when it does not exist.
To avoid this clinicians need to understand the autistic style of thinking along with how our sensory system operates when we take in, process, store and retrieve information from the world around us. The selves we bring to interface with the world around us run on a different operating system. Thinking visually or hearing acutely in an autistic does not, in and of itself, equate to hallucinatory phenomena. We need clinicians who can tease out aspects of the autistic way of being and interfacing with the world from psychiatric symptomology. This is quite important because we can treat psychiatric symptomology such as hallucinations, but it is unnecessary and dangerous to label and to treat the autistic way of being as if it were a psychiatric symptom.
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.
JUDY ENDOW, MSW
Judy is an autistic author and international speaker on a variety of autism related topics. Read more from Judy on Ollibean here and on her website www.judyendow.com.
[…] up and most of my adult life I was blamed for being too sensitive and was treated for what people assumed were psychological problems. In fact, I spent some years of my childhood in a state mental institution. Despite the various […]
Thank-you, Judy. This was very helpful.
Agenesis of the Corpus Callosum, ASD and ADHD here, and growing up and through early adulthood was falsely diagnosed with all manner of mental illnesses until 2008. Great post.
I’m 51, and wasn’t properly diagnosed till I was 45.
This is so well-stated Judy. Due to training in the medical model, most mental health therapists view autism through the lens of pathology, and not individual differences in brain processing/connectivity. What we need to understand that co-morbidity with DSM diagnoses can occur, but that autism itself should be viewed from a larger lens.
I was mis-diagnosed as bipolar and the medication never worked. My son was diagnosed with ASD and his specialist after talking with me said, “I think you are ASD not Bipolar” I went and got myself assessed for ASD and ended out that I am ASD, ADHD not bipolar.
Judy, I just have to add an example that is exactly the problem you are talking about. I went to a friend’s son’s IEP (we were both in an ADHD parents group). The Social Worker spoke about my friends son: “I think he is schizophrenic. I have heard him talk in at least 3 different voices.” I know my son would repeat long strings of conversation in the voice that he heard them. His echolalia was such that he even mimicked the voice of the person. “Look, I have my degree in Psychiatry.”….I fought her, but she insisted I was wrong. I was so thankful she had nothing to do with my son.