Realizing that Diagnoses Are Not Reality

Claudia Mazzucco is a journalist and author from Argentina. She is acknowledged as having made a decisive contribution to the History of Golf in Argentina by her researching on its historical origins and the life of Argentina’s golf champion, Roberto De Vicenzo. Since 1989, she teaches History of Golf at the PGA of Argentina. She was born in La Banda, Santiago del Estero. Her diagnosis of autism was confirmed twice: in London (2001) and the United States (2017). She lives in Hartford, Connecticut. (This blog is published today for a special reason: congratulations to Claudia as today is her birthday!)

ClaudiaMazzucco-330x220

This is an extension of an article first published on May 14, 2018.

Classical Autism as a neurological disorder exists independently of human consciousness and human beliefs. A person who has been diagnosed at age 3 cannot convince herself that autism is not real. During the first half of the twentieth century, physicians thought that people suffering from classical autism lacked of imagination, emotions, empathy, theory of mind, neuron mirror, verbal and non-verbal language, introspection and retrospection. “The autistic mind, it was supposed at that time, was incapable of self-understanding and understanding others,” said Oliver Sacks, “and therefore of authentic introspection and retrospection.” That an autistic person could write an autobiography was “a contradiction of terms.” Each autistic person was an island in a sea of nothingness. An island, cut off from the main. “In classical autism, which is manifest, and often total, by the third year of life,” Sacks added, “the cutting off is so early there may be no memory of the main.” Particularly problematic was that children with classical autism were not engaged with the world. They were tuned out. Their social skills and social bonds remained underdeveloped. Though there is not universal agreement, classical autism is treatable. Many children have lost the diagnosis with early intensive intervention and treatment.

Asperger’s is something that exists depending on the consciousness and beliefs of a single individual. This belief can limit their perspective and, consequently, the relationships with other people, creating subjective categories that reflect their rich imagination rather than clinical or neurological realities. People with Asperger’s claim to have the most trouble of adaptation to the social environment. Many are misfits determined to hide from the world. They actually could be very charming and communicative. But they harbor lots of turmoil underneath their talk in social media. They usually feel their most basic sense of self is under assault when someone questions the existence of Asperger’s. Society makes them feel awkward. Anyone who has read their Blogs knows how the encounter with another person could ignite a hopeless terror. Many have been conditioned to constantly strive to be perfect, and feel as though they live in a world where they are constantly failing. Many come from families with triads of alcoholism, mental illness and depression. They might have been casualties of war in their parents’ nasty divorce. There had been so much chaos in their childhood: divorces, violence, sudden uprooting and moves. They deserve no blame, but calling themselves “autistic” won’t help.

Diagnoses are made out of our presumptions about the mind. Diagnoses can be wrong just as easily as opinions. Yes, social isolation is a great difficulty. If a person feels he “does not belong,” he could quickly develop symptoms and find a doctor that will label him as “autistic.” But this is not a disorder. Such feeling is an inseparable part of every human nature. In fact, he could find a religion, a book club, a sport or game where he will increase his ability to be in relationship with others and learn to understand their thoughts and feelings. A place to belong, a place to interact. When we are involved in community, we will discover who we are. French philosopher Jean Paul Sartre would say, “I need the other in order to realize fully the structures of my being.” The interpersonal relation between “I” and “You” is constitutive of selfhood. A human being is conscious of his fellows, depends on them, and finds the meaning of life in knowing them. “Only he who is capable of a genuine encounter with the other is capable of an authentic encounter with himself, “and the converse is equally true,” French philosopher Pierre Hadot said. “Whoever wishes to make progress strives, by means of dialogue with himself or with others, as well as by writing to carry on his reflections in due order. To wit, people must belong to a tribe, they yearn to have a purpose larger than themselves. We are obliged by the deepest drives of the human spirit to make ourselves more than animated dust, and we have a story to tell about where we come from, and why we are here. Perhaps, science is a continuation on new and better tested ground to attain the same end; if so, then in that sense science is religion liberated and writ large.

It is the community then that will lead us to discover who we are. Even if somebody was not born with a fascination for other people, and developed a particular inability for social interaction, that limitation does not have to be fostered or exercised. Whether or not they have the chance to overcome it will usually depend on the environment. Lionel Messi, the Argentine football (soccer) player who is one of the biggest athletic stars in the world, is a good example. I have been told that Messi was diagnosed with Asperger’s when he was in the critical transition between childhood and adolescence. This was a child diagnosed with a growth hormone deficiency. He was very shy and introverted. At age 13 Messi and his family relocated to Barcelona, Spain, and he began playing for FC Barcelona’s under–14 team. By learning to handle and kick the ball either directly into the goal or to another player, he could coordinate his moves with other team’s members. As men compete against the other team for the opportunity to kick the ball, the ability to understand what goes through the minds of the rival team (theory of mind), is usually the key to scoring. If there were any, Messi has learned how to manage his “autistic” tendencies, until they eventually disappeared. An athletic competition that can tear down the walls that exist between us in much the same way as music, literature and art, could also change the way humans think and view the world.

Letting a teen develop autistic symptoms is, in my view, like allowing a sick person to writhe in pain without intervention.

Lorna Wing was a mother. She might never have known about autism, had it not been for her daughter Susie. Susie was three when she was diagnosed with autism and moderate learning difficulties. Lorna battled her daughter’s autism in an era when people didn’t understand autism at all. She spoke passionately and efficiently.

Directing subsequently her professional interest towards autism, she was the first to identify Asperger Syndrome as a subcategory of the condition. Wing gave Dr. Gary Greenberg, the author of The Book of Woe, a summary of her views. She thought the term was helpful for the child who talks endlessly about the interstate high system and nothing else. This child is striving to attract people but he or she drives them away. Everything that is human interaction has fallen from them. There are a lot of such children, Wings said. This is not someone who should be overlooked or simply dismissed as a little bit eccentric.

And in order to push her opinions through, Wing stated that the diagnosis of Asperger’s “can be used with parents and teachers and bosses who often cannot believe in a diagnosis of autism, which they equate with muteness and total social withdrawal. It can help to convince the people concerned that there is a real problem.” A problem needing careful management and education. “Even if Asperger’s was only a high-functioning variant of autism,” Wing suggested, “and even if it was, strictly speaking, not a separate disorder, still it deserved its own label.”

Wing was scathing on the dangers of allowing a young child to become centered on a single subject of interest. A 12 years old who is in the spectrum because he has developed an obsession with, say, cemeteries, Santa Claus, Harry Porter or death birds – the Little Professor Syndrome – was allowed to develop such an obsession. The same boy or girl will miss a series of milestones and social skills they need to acquire during adolescence, including forming meaningful friendships that could last forever. This has to do with many changes that his body and brain and emotions go through. He will miss things like having

  1. The first kiss.
  2. The first date.
  3. The first love.
  4. The first glass of wine or beer with his friends.
  5. The first driving in dad’s car with his friends.

In the end, at age of 20, they will be a misfit living in isolation. They won’t have sense enough to find their place in society. Their ability to instinctively empathize with others will be weaker than other people’s. It didn’t happen because of a “neuro-divergence” in the brain. A good rule of thumb is: “Diversity enables a very wide spectrum of possibilities.” Diversity of interests is of supreme importance for a teenager. Parents could prevent their children from developing the Syndrome. It is not autism and it should not be treated as such. If his obsession makes him socially dysfunctional, he will be diagnosed with a mental disorder but this disorder was easy to prevent.

Allowing more people into our lives allows us to free ourselves from the mass of barriers our minds have created for us, we may see that a diagnosis in the ASD is a mental construct that could contribute to negative self-image, which can lead to stress, anxiety, depression and other problems. In reality, it is the diagnosis of autism that is making them autistics.

Autism causes avoidance of social situations that then causes more autistic behaviors. Flexible thinking and nonjudgmental attitude can reverse that cycle. Having realistic sensibilities can lead to remarkable recoveries.

 

12 responses to “Realizing that Diagnoses Are Not Reality

  1. And yet there are numerous reports of people saying how they feel better when given an autism diagnosis in adulthood. Reports like a middle-aged lady in today’s news saying “once I got diagnosed as autistic I came off my anxiety medicine”, as if now she has a diagnosis there is no need to treat her anxiety. Perhaps she never needed it.

    If efforts were made to integrate awkward/nerdy schoolchildren rather than leaving them to be bullied because they are 1% different, there would be no need to diagnose them with anything. Then autism could go back to being what is was in DSM3, a very challenging disability, without cute redeeming features.

    Like

    • I don’t read the news, but I read a lot of people saying they felt the autism diagnosis as a “liberation” and they always explain that anxiety is due to the pressure for “pretending to be normal”. Often they blame the society for their depressions and any secondary psychiatric disorder.

      Some of these people even say thanks to “mind blindness” are disabled to feel the pain of others…

      Like

    • Dear Peter,

      People feel vulnerable in a variety of different ways. I’d rather ask those who have been diagnosed in adulthood the following questions:

      1. Is it autism or is it loneliness?

      2. Is it Autism or is it dichotomous thinking?

      3. Is it Autism or is it Extreme Relativism?

      4. Is it Autism or is it Emotional Pain?

      5. Is it Autism or is it Spiritual Emptiness?

      6. Is it Autism or is it Self-Unawareness?

      7. Is it Autism or is it the Illusion of Separateness?

      8. Is it Autism or is it The Total Noise?

      9. Is it Autism or is it Globalization of Indifference?

      Think about that.

      Like

  2. Dear Claudia, unfortunately if anything is slightly amiss, there are now Psychiatrists and Psychologists willing to describe it as autism. If it makes the patient feel better, maybe that is OK; but it ends up making the term autism meaningless as a medical diagnosis.

    The next phase of autism over-diagnosis is targeting females. There are genetic types of autism like Retts (where boys die before birth) and Turner syndrome that are exclusively female, but idiopathic autism is highly biased to males, due to biology. Multiple Sclerosis mainly affects females, I do not see males complaining and saying they have not been diagnosed with MS.

    Like

  3. Dear Peter,

    Are you seriously comparing MS to AD? Multiple sclerosis (MS) is a neurodegenerative and inflammatory immune condition that causes problems throughout the body. A person diagnosed with MS often have difficulty thinking, breathing, swallowing. They experience vision problems, poor hand-eye coordination, sexual dysfunction. They battle bladder and urinary infections. Their immune system is weakened. MS increases cardiovascular problems and the risk of stroke and heart diseases.

    On the other hand, the criteria for diagnosis Asperger’s does not derive from a pathological anatomy. It is real but superficial. It is the sort of criteria that exists mainly because people say and believe it exists. There is no clear “real thing” to which the Asperger’s label necessarily corresponds. Their minds make them believe they have autism. When you repeat to yourself the very same line for a long time such as “I have autism” or “as an adult with autism,” this line becomes as permanent as nature. The fact is that everything that is broken in a person with Asperger Disorder can be fixed. Every psychological problem that leads a person to develop autism-like symptoms can be solved.

    I view the DSM 5 with a large dose of skepticism. I would not permit a psychologist or psychiatrist to cast an opinion in the most crucial features of my own mind, life and personality, features that describe me or who I would or could be. I would argue there is a downside to the “liberation” caused by the diagnosis. All proper questioning would come to a halt, and they would never get to the underlining root of what the real reason for being diagnoses in the spectrum was, creating the illusion that indeed autism is a lifetime condition.

    Like

  4. Under DSM III people who currently call themselves “aspies” should meet criteria for Childhood Onset Pervasive Developmental Disorder

    Like

    • Just out of curiosity, what exactly is “Childhood Onset Pervasive Developmental Disorder”? Not the definition that the manual gives. The symptoms & features in real life. Because it is not the definition that makes a disorder what it is. It is the effect. The change that causes in someone’s personality.

      I have to admit it, the DSM is funny as hell.Which makes it an irresistible target for those who don’t believe in their opinions about dozens of “disorders.”

      Like

      • A PDD label could be received by a person with the next characteristics (an example):

        -Lack of imaginative play

        -Motor impairments (fine and/ or gross: problems with sports at the school; tying shoes, writing, etc)

        -Unaware of another people feelings or thoughts (e.g: do not experiences shameness, act as being alone, etc), etc

        -Rigid routines and rituals

        -Insistence to carry objects who do not use, etc

        -Separation anxiety disorder, apparent “coldness” toward parents, etc

        – Breast refusal at birth, uninterested in make friends; or inappropriate social contact, etc

        -sensory hyposensitivity (e.g: can injury himself/herself and do not feel the pain; indifference to cold -like a “broken thermostat”- etc) and hypersensitivity (e.g food textures, some sounds or lights well tolerated by rest of people, etc)

        -repetitive behaviors: body rocking, etc

        -Learning disorders due to alterated cognitive style (e.g: learn better through images), problems with verbal comprehension, etc

        -Abnormalities of speech: mutism / verborrhea, speaking with foreign accent; maybe “social” echolalia (repetitions out of context, rigid/ repetitive communication), etc

        – May seem hypnotized at times, lack of response

        -Maybe sleep disorders: parasomnias, etc

        -May have synesthesia

        -Poor reading of facial expressions

        -Abnormalities of eye contact (fixation or evitation), poor nonverbal language, etc

        -Maybe misdiagnosed as schizophrenic despite absence of true hallucinations/delusions/incoherence or even as bipolar (e.g: due to misinterpretations of catastrophic reactions to change in the environment), etc

        Like

  5. Claudia, MS certainly is not trivial, but neither is DSM3 autism. The life expectancy of someone with DSM3 autism is about 40 years, on average. People with MS might expect to have their life span cut by about 10 years. On that basis MS is much milder than DSM3 autism.

    MS is defined by faulty re-myelination, people with DSM3 autism are found to have abnormal myelination. In both conditions the immune system is over-activated, this is why people with DSM3 autism are much more likely to develop asthma, arthritis, IBS/IBD etc. So DSM3 autism is not just a problem with the brain.

    My point was nobody would want to have an MS label, like nobody would want an MR/ID label. Today some people actually want the label autistic, even if they really are not.

    Like

  6. There is a 72% increase in the diagnosis of autism over the past four years. One of every fifty children aged six years to 17 years has an autism spectrum diagnosis. Ten years ago, the number was 1/150. The rise in autism parallels the rise of the chemical age after World War II and the use of untested chemicals in manufacturing, our food supply, house cleaning products, and our personal grooming products.

    Genetics accounted for 38% of the risk of autism and environmental factors 62%. Environmental changes are impacting our genes; they make us vulnerable to thousands of toxins. It is probable – although unproved – that the younger lobe in the womb, the left brain, would surely be more vulnerable to the impact of toxins than the older right brain. For “of the twin human hemispheres, the right side is the elder sibling,” Leonard Shlain said, “In utero, the right lobe of a human fetus’s brain is well on its way to maturation before the left side begins to develop.”

    Like

  7. I fell into the special interest trap. I have some glimmer of real passions but feel weak to pursue them when I turned my back on finding them for instant gratification, and people supported these “interests” then and it makes me cringe to see the media do that now.

    Could I blame them? They bought into the idea these obsessions were my future, I could be a savant. They did the damage. They feel like a drug addiction, yet except in the worst depressive moments, a person can never seem to get clean.

    Imagine never being able to get over alcohol, not one month, two months, nor a year. The last drink could be ages ago but there is no end to cravings.

    That is the truth about these “special interests”, a politically correct, euphemistic term for a disposition to be drawn to bizarre obsessive habits. They are as meaningful as stereotypy and waste life, nothing “special” or good about them.

    They are not to be confused for true passion, like Grandin and her inventions. And do they “confuse” them! Deliberately!

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.