Pablo feels lonely. He dreams of making friends, although he knows that he is different from the others. He is 20 years old. Today he is happy, he was able to pull himself together without outside help and liked himself in the mirror. He finds it difficult to take care of himself, but he needs to do it to be independent.
He has always been unique. As a child, he spoke a lot as an adult. He was so inquisitive that those around him considered him smarter than usual. He could speak, but had no control over his body. His movements were clumsy, he constantly stumbled and fell. He never had to ride a bike or do sleight of hand.
He tied his shoelaces in desperation. Handling scissors was torture. His writing was chaotic; when drawing, a person never put his head, arms or legs in place. Every part of the body seemed to dance around this role.
I’m not autistic
Social relationships were not his strong point. He tried to talk, but they rejected him. Some said that he annoyed me very much, others harassed and insulted him.
Pablo’s problems grew with him, and at the same time his diagnoses grew, many of them autism. He didn’t feel like he was autistic and didn’t fit in with the group of kids with autism: he looked different from them. Finally, at the neuropsychology clinic, he was diagnosed with nonverbal learning disorder (NVLD), and everything fell into place.
TANV situation
NVLD has been known since the middle of the last century, although it still does not appear in international diagnostic guidelines in the field of healthcare and psychiatry. In practice, many already diagnose it as something different from autism spectrum disorder (ASD), with which it is often confused.
The Spanish Association of People Suffering from NVLD is demanding recognition of this disorder as a different disorder, as is the NVLD Project (abbreviation in English: Nonverbal learning disorder), which is working to propose diagnostic criteria for the next edition of DSM-5, the diagnostic and statistical manual of mental illness (Diagnostic and Statistical Manual of Mental Disorders).
In Spain, the lack of recognition of TANV makes it difficult for victims to access care that compensates for their difficulties when they receive this diagnosis. On the other hand, if, for example, a person is diagnosed with ASD, the person will have access to help but may not have adequate support to address the NVLD deficit.
Victims demand a picture that represents themselves and helps them develop. They point out that diagnostic criteria are based on the opinions of specialists without taking into account the point of view of the victims themselves.
Opening of TANV
In 1967, Johnson and Myklebust identified a group of children with learning disabilities who had high language abilities but obvious difficulties with left-right orientation, construction tasks, arithmetic, and social relationships.
In 1995, Rourke proposed the first TANV model defining primary, secondary and tertiary deficits, shown in the following image.
Adapted from Rourke (1995).
NVLP is a neuropsychological development disorder that occurs from birth and is a consequence of dysfunction of the right hemisphere. Because these children usually do not have serious problems with academic performance in elementary school, this may go undetected during childhood. Motor skills are the first sign that something is wrong and are often labeled as clumsy children. However, they compensate for their motor and visual deficiencies with high verbal abilities and memory.
It is usually discovered during adolescence, when academic and social problems become noticeable. The following image shows the main weaknesses and strengths of children with NVLD.
During adolescence, executive functions come to the fore. They find it difficult to plan and manage their time. The abstract and logical level of thinking is not suitable. Reading comprehension is low and they produce speech that is poor in content, albeit with complex vocabulary. They interpret the message literally. They don’t understand facial expressions and body language. Social cognition suffers greatly. They are often rejected by their peers, resulting in unwanted isolation or being the target of ridicule and harassment.
At the age of twenty, many of them have received neither a diagnosis nor specific support. Given their social difficulties, adults with NVLD are more likely to suffer from depression and anxiety.
These difficulties are not always simultaneous and may develop. Thus, Michael Brian Murphy, who suffers from NVLD, in a study he conducted on adults, found that most overcome some of their difficulties, reduce them or compensate for them over time.
How is it different from autism?
Although they share several characteristics, NVLD is another syndrome. Therapist Rhondalyn Whitney illustrates the differences between both conditions using two twin patients diagnosed with SLI and ASD.
Those affected by NVLD had altered visual memory. He had trouble remembering the usual arrangement of objects and the place where he left his things, which led to clutter and frequent loss (keys, wallet, etc.). In ASD, the profile was the opposite. He was obsessed with order and arranging objects in certain positions.
Brother TEA was well oriented in space and could interpret the map, but brother TANV was disoriented even in familiar spaces.
TEA highlighted restrictive interests. They both loved science fiction. I was only interested in TEA star Wars. He repeated the movies and read the books of the saga until he finished them, even if he didn’t like them. TANV was more flexible in his preferences and if he didn’t like a book or film, he abandoned it.
Both had difficulties in the social sphere, but to varying degrees. ASDs learned slowly from the environment, while NVLDs learned faster, improving their interactions earlier. TANV was interested in talking about this. This has led to increased instances of failure and rejection, followed by frustration and anxiety. There was zero or very reduced interest in TEA.
Rondaline also discovered differences in sensory and perception. The brother with NVLD had problems recognizing objects by touch or distinguishing textures, which was not observed in children with ASD, who were more sensitive to visual and auditory stimuli.
The importance of TANV recognition
While NVLD is difficult to distinguish in childhood, in adults it is confused, in addition to ASD, with various mental conditions. This may lead to unnecessary medications or treatments being prescribed.
To ensure that survivors can receive appropriate interventions, it is critical to improve identification and diagnosis protocols by establishing criteria and clearly distinguishing them from other neurodevelopmental, psychological or psychiatric disorders that may be confused with NLD.
The formalization of TANV in international guidelines will serve, on the one hand, to achieve diagnoses that reflect the true neuropsychological profile of these people, and on the other, to protect their rights by forcing public administration to recognize them and guarantee their access to the support they provide, for now. they were refused.
Neuropsychologists Isea Bolos Gomiz and Sandra García Yáñez contributed to the writing of this text.