Normally I wouldn't write a blog post that relies so heavily on citations and quotes. But I'm asked why adults with NLD try to kill themselves too often.
I started doing research on Nonverbal Learning Disorder, (NLD) four years ago when I was first diagnosed. The lack of studies on adults with NLD is horrifying.
I read the original 1989 study by Byron Rourke et al: A Childhood Learning Disability that Predisposes Those Afflicted to Adolescent and Adult Depression and Suicide Risk. (1) For 22 years people have been saying that adults with untreated NLD are at a high risk for suicide based on a "study" that never really happened.
Because of the significance of Rourke's study, The Journal of Learning Disabilities invited Erin D Bigler (2), Jack M Fletcher (3) Brian Kowalchuk et al (4) to respond, and Rourke responded to each. (5). Simply put they all basically agreed with Rourke. Bigler called it a "testable hypothesis."
However, there is no longitudinal study (repeated observations over a period of time of random individuals); no cohort study ( individuals linked together for some reason such as age, or all have been diagnosed with NLD, and studied over time. The individuals should be random within the cohort.)
There are no statistics to back up his statement that adults with NLD are at a higher risk for institutionalization and suicide. No statistics--have I made that clear?
Rourke refers back to his prior studies that established NLD as a learning disorder. Then he gives a list of nine things that children with NLD are lacking--not saying that there are degrees in each category or that not everybody with NLD suffers from all nine characteristics. He then gives four adapative difficulties of the NLD Child/Adolescent.
Finally he gives four Adult Consequences of the NLD Syndrome. 1) People forsake their chosen career for less demanding jobs. 2) Though these jobs are less demanding they still require psychomotor coordination and other abilities they don't have. 3) "NLD individuals experience a virtual inability to reflect on the nature and seriousness of their problems...and outstanding difficulties in generating adequate solutions for those problems that they do appreciate;" 4) "NLD individuals experience marked deficiencies in the appreciation of subtle and even fairly obvious non-verbal aspects of communication with consequent social disdain and even rejection."
I'm not saying that these problems aren't true. I believe an individual with NLD has all or some of these problems. I believe that studies have to be done to show how the above affects both the treated and untreated adult.
Rourke goes onto say that these problems develop over many years and people suffering from NLD believe other people don't wish to be with them and see their behavioral expressions as silly and the object of ridicule. (Yes I did think that--from ages twelve through fourteen.)
That we, the person with NLD are "impotent in the face of what are for them challenging circumstances, but with which others seemingly deal without difficulty." (I disagree with the word choice "impotent," as a blanket statement.)
Therefore "it should come as no surprise that depression and suicide attempts are greater than average in individuals who exhibit this syndrome."
Read that sentence again. It's a hypothesis without a further psychological study to back up its findings. People including me have been quoting this as if it's true for 22 years when so much about the individual with NLD is overlooked.
He talks about how studies show that suicide is higher in individuals with NLD than in people with other learning disabilities and/or brain injuries, though 50% of all suicide attempts come from people with LDs and/or brain injuries. Yet he admits these studies show only a few results about NLD-some of the studies were written before anything was known about NLD. He says: "Our contention in the current discussion is that persons manifesting the NLD syndrome are particularly at risk for socioemotional disturbance of the internalized variety and, in turn, for suicide." Where is the study showing this? Until there is a valid study with these results it's a hypothesis or really contention.
There is one case study offered. A woman who worked first as a salesperson but couldn't learn the job (I was one throughout high school, during college and as a second job later;) as a waitress (I was fired from my one week as one but was hired for my physical assets.) She then went to college to become a social worker. Though it was "complex" she was able to complete the program. Her family misunderstood her problems and thought she should be like everybody else. Her friends deserted her for family and/or career. Though nobody else thought so she thought if she went to grad school she would be successful. She made three suicide attempts in a two year period and according to Rourke "lacks the cognitive/affective flexibility to deal with the changing needs of individual clients, and the emotional strength to survive the stresses inherent even in a light caseload." Somehow she got disability-few people with NLD do.
I have a Masters in Social Work from Fordham GSS; I passed the CSW test (now licensing) while still in school without studying--I looked for patterns the night before and had studied throughout school. My cum was a 3.84 and my final field placement evaluation was "outstanding" in all areas. I was invited back to work there and did for a time. I'm not an anomaly but an intelligent woman who happens to have NLD. (And yes I found it ironic that they picked a woman who majored in social work, but really when we have problems we want to understand ourselves. Life was much more fun when I majored in Urban Studies undergrad.)
As I didn't know what was wrong for so many years I was forced to adapt to the world not the world to me and guess what? I survived. I never once had any true suicide thoughts. I didn't know what depression felt like until I went on anti-anxiety meds. Depression is the flip side of anxiety. I never let my anxiety affect my work negatively but worked until I burnt as I had no "stop" button.
And I appreciated the seriousness of my problems. I asked therapists I knew for help and/or recommendations for ones who specialized in NLD. Nada. I wrote to every NLD organization I could find and never received responses.
This is not to say my life hasn't been happy. At times it's been overfilled with joy; other times mundane; still other times sad or depressed. In other words mine has been a regular life.
I refuse to let my life not be meaningful.
I beg for studies on adult NLD. It's past our time. As Asperger's "evolved" out of autism, the different problems of NLD should be recognized and studied. We're the final frontier in the neuropsychological revolution, and it's time for us to use all available weapons
1) Rourke, B. P., Young, G. C., & Leenaars, A. (1989). A childhood learning disability that predisposes those afflicted to adolescent and adult depression and suicide risk. Journal of Learning Disabilities, 22,169-175.
2)Bigler, E. D. (1989). On the neuropsychology of suicide. Journal of Learning Disabilities, 22, 180-185.
3)Fletcher, J. M. (1989). Nonverbal learning disabilities and suicide: Classification leads to prevention. Journal of Learning Disabilities, 22, 176 & 179.
4)Kowalchuk, B., & King, J. D. (1989). Adult suicide versus coping with nonverbal learning disorder. Journal of Learning Disabilities, 22, 177-179.
5)Rourke, B. P. (1989). Nonverbal learning disabilities, socioemotional disturbance, and suicide: A reply to Fletcher, Kowalchuk & King, and Bigler. Journal of Learning Disabilities, 22,186-187.
© 2011 Pia Savage