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the disorder, for me, is the mixed spastic-athetoid type, in which I have
and generalized anxiety aside, my original suspicion was that I had autism or
environment or care routine such as summer camp or the start of each term
sudden, that made it all the worse. More peculiarly, upbeat popular songs on
the radio, or even Muzak transmissions, would give me fits emotionally and
send me into spontaneous crying spells. Even when change was absolutely
and unequivocally wanted by me, I always had a difficult time with it when I
was younger. That was mystifying, perplexing, and vexing. After nearly a
and coordination, abnormal muscle tone, and poor balance and posture. CP
depending on the severity and extent of the brain lesion, and may elicit
abnormal sensory reactions. Taken together, all of these sequelae can yield
seven percent of those with cerebral palsy have comorbid ASD or autistic
sequelae. As with CP, the morbidity of ASD is a function of the extent of the
brain lesion. Some have more severe sequelae than others. In the case of
little evidence that ASD rates are specifically increasing among children with
CP.3
and ASD occur comorbidly across the clinical heterogeneity of each disorder,
years, I got pretty much desensitized to thunder and lightning, sirens, and
train horns The campus is a quarter of a mile away from train tracks, which
follows since Atlanta began as a rail terminus anyway. And, the campus was
across North Avenue from the infamous Techwood Homes housing project
which no longer exists. On a warm night, one could even hear gunfire from
Techwood. That was interesting. Many things could be heard at any given
time. However, thunder and lightning still bother me a bit. Loud and
was a toddler, they would come in the night, when I would typically be awake
and long since put to bed. There were no associated thoughts, positive,
thoughts, they were at least not about being disabled or even about my
parents. I never told anybody about this, as I did not know what it was.
was scheduled to visit my father and his other family. I never got along with
them, anyway. And, I did not like having to navigate the difference between
Still, the crying was triggered all too easily in any number situations of
stress.
disease or disability explanations. In addition to ethical and moral values, values with
respect to disease or disability models, ideals about the good life must be considered.
In evaluating diseases and disabilities, cultural forces significantly influence what will
pass for explanations of morbidity given a particular cluster of sequelae involves pain,
dysfunction, absence or loss of the ability to self-care, and so forth such that there
social or ideological reasons so that the sick role may be applied to those in the
club foot. Standards of health, nevertheless, are normalized according to criteria about
however, I was found to have autistic sequelae but not full-blown autism or
until much later, if at all, in those such as myself who have severe cerebral
psychologist, Dr. L. However, due to current nosological convention and the other
diagnosis was not officially made by Dr. L. for me. That incomplete diagnosis, although
relieving, was still rather frustrating.
The diagnostic hesitancy of Dr. L. may have stemmed from that fact that PDD-
NOS is an archaic nosological category and, interestingly, it is not part of the DSM-5. 9
patterns, but who do not meet the full DSM-IV criteria for autism or another PDD. 8,9
Certainly, given that I do indeed have difficulties in the above areas, I would not have
Yet, Engelhardt10 emphasizes that myriad moral issues exist with respect to the
exempt individuals from serving in the military, determine eligibility for various public
entitlement or social service programs, or at the extreme, frequently deny the mentally ill
and intellectually challenged many of their civil and human rights. 10 Indeed, concepts of
disease and disability place one at a specific point along the gradient of functional
perfection of human ecology. Since the act of diagnosis is nether descriptive nor
undertreating.10 Even when no diagnosis is made at all, such an act entails a complex
social interaction that can elicit a host of therapeutic and socioeconomic consequences.
After the initial neuropsychological testing, though, the next part of the journey
Indeed, Dr. S. genuinely helped me in figuring out that I do indeed have pseudobulbar
affect (PBA). She said that I definitely meet all of the criteria and sees it all the time in
her stroke patients. Never in my life did I think I would be so happy to receive yet
another neurological diagnosis! In her respect for my autonomy, Dr. S. said that as long
as the PBA does not interfere with my daily functioning, then I do not need medical
treatment. With the simple justice of a congruent diagnosis, I have been set free in a
disorders and diseases such as multiple sclerosis, traumatic brain injury, Alzheimer's
other neurological disease. Epidemiologic research has shown that a range of 5.3% to
48.2% of people with traumatic brain injury (TBI) may have symptoms indicative of
PBA.12 There are, however, characteristic sequelae that can be accurately assessed and
identified by clinical signs and validated scales which permits proper treatment. 11 Yet,
because PBA is often wrongly diagnosed as depression, bipolar disorder, or other mood
emotional dysregulation, much uncertainty about myself, as well as many past demons,
have finally been vanquished virtually instantaneously because I now know what my
hothead who can also laugh inappropriately at times, I have become aware of my
emotional fluctuations and now just shrug them off, and even laugh about them, when
they occur. As the diagnosis of PBA from Dr. S was the treatment for me, with such
Honestly, though, I just wish that these deeper neuropsychological issues had
been properly addressed when I was growing up in the '70s and '80s. Back then, only
education was all that was available. My brain disorder was exclusively considered to
be a physical disability. Given the nosological milieu of that era, my social and
None of the experts even considered the possibility that my brain disorder might be in
fact pervasive, with cerebral palsy being but one component of the whole morass of
dysfunction.
For me and my family of origin, such a diagnostic failure was neither beneficent
nor nonmaleficent. As such failure resulted in inappropriate care and support for me, it
markedly exacerbated the suffering for much of my life thus far by several orders of
magnitude. With utmost sorrow, though, I regret that my befuddled and bewildered
parents, who are healthcare professionals themselves, were so helpless about what to
do about my uncontrolled crying and anger back then. Even worse, because I did not
understand and could not control what was happening in my brain, I had no way of
articulating what was going on with me at that time. In addition, due to my emotional
hypersensitivity, the outright hostility and unabashed animosity that my parents and their
other spouses have for each other, even to this day, just added another dimension to the
suffering.
On top of the family violence, these neuropsychological issues of mine that were
continually undiagnosed for far too long, and lack of acceptance, understanding, or
empathy by many in my past, are but a few reasons why I felt compelled to leave my
family of origin and everything else behind. It was the only way I could think of to help
release all of the negativity about the multilevel failure. We were all exhausted,
exasperated, frustrated, and fed up with each other. To relieve the years of anguish and
misery, just by me taking up so much time and energy due in part to a lack of complete
diagnosis, it had simply come time for me to go. That way, I might, out of faith and
hope, become my own self. From my perspective, I took such action out of distributive
justice.
Over the past 20 years and via three major interstate relocations, I have
increasingly asserted my autonomy and certainly have become much more of my own
self. That includes moving to Chicago to pursue a second doctoral degree in Research
have come so far in life by myself, I have neither regrets about leaving nor intentions of
that I feel liberated would be a total understatement! Now, I feel that I can live life and
accept myself in full as a whole and complete man. As I believe that I have finally grown
up at last, I am infinitely grateful to the contributors who provided the diagnostic
knowledge which I have acquired. Indeed, it has been a long, arduous healing journey
1. Kent, R. Chapter 38: Cerebral palsy, in: Barnes MP, Good DC (eds.), Handbook
of clinical neurology, 443-59. London: Elsevier, 2013.
4. Whiteley P. Questioning answers: cerebral palsy and autism. [28 June 2012]
http://questioning-answers.blogspot.com/2012/10/cerebral-palsy-and-
autism.html. Retrieved 06 Jul 2016.
6. Engelhardt HT, Jr. The disease of masturbation: values and the concept of
disease. Bull Hist Med, 1974 Sum;48:234-48.
7. Engelhardt HT, Jr. Ideology and etiology, J Med Phil. 1976 Sep;1:25668.
8. Johnson CP, Myers SM. Identification and evaluation of children with autism
spectrum disorders. Pediatrics, 2007;120(5):11831215.
10. Engelhardt HT, Jr. Ethical issues in diagnosis. Metamedicine. 1980 Feb;1(1):39-
50.