(Link to the third editorial of this series: https://wp.me/pbW3AH-1Tx)
Autism was first described by Leo Kanner (a child psychiatrist at The Johns Hopkins School of Medicine) in 1943, who called it “autistic disorders” (https://www.autismtruths.org/pdf/Autistic%20Disturbances%20of%20Affective%20Contact%20-%20Leo%20Kanner.pdf). Nine years later, the severity that this behavioral condition could reach became evident when the American Psychiatric Association (APA) described the autistic behavior as “psychotic reactions in children, manifested primarily as autism”, while including autism in the group “schizophrenic reaction, childhood type” in the first version of the Diagnostic and Statistical Manual of Mental Disorders (“DSM-1”, 1952, page 28) (https://www.turkpsikiyatri.org/arsiv/dsm-1952.pdf).
Although recognized for several decades, the severity of this neuropsychiatric condition has not been realistically portrayed by either the mainstream media or the Internet.
Quite the contrary, successful people are often misidentified as having “Autism Spectrum Disorder” (ASD) and a misconception of advantageous capabilities is commonly offered to the public, as exemplified below (https://genialcare.com.br/blog/7-famosos-que-sao-autistas-e-voce-nao-sabia/):
“As we have seen, many famous people are autistic, they share their discoveries and thus, they increase more and more the universe of possibilities, showing that all people can achieve incredible potential.”
Furthermore, a growing number of movies romanticize autism by portraying adolescents or young adults with this condition merely as individuals with affective and socialization issues. There is no mention of the fact that affected children, adolescents and adults often present with mental retardation (up to 70% of cases) associated with speech impairment (sometimes loss or failure to develop speech) (up to 80% of cases), impairment of abilities for activities of daily living (using the toilet, eating and dressing/grooming) (up to 50% of cases), psychotic behavior (up to 35% of cases), aggression, self-harm (up to 50% of cases) – characterizing a psychiatric condition that is sometimes so difficult to control as to require institutionalization (https://link.springer.com/article/10.1007/BF01531361; https://jamanetwork.com/journals/jamanetworkopen/article-abstract/2785235; https://journals.sagepub.com/doi/abs/10.1177/1362361316644731; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8918655/; https://www.scientiapsychiatrica.com/index.php/SciPsy/article/view/69).
See the despair of a mother, reporting the progressive worsening of her son’s autism, who is only 3 and a half years old, decided to put him in an institution (including due to her fear of what might happen when he grows up and becomes stronger, given his uncontrolled aggressiveness), requesting advice on the Internet through the “reddit” platform (https://www.reddit.com/r/Autism_Parenting/comments/176s03a/considering_institutionalization/?rdt=63842):
“Considering institutionalization…
Long story short: I am starting to give up on my son and considering institutionalization.
My poor baby is just 3 ½ yrs. old and, yes, I know it is still way too early to reach conclusions but his situation has deteriorated to the point that I am increasingly feeling that I must come to terms with the possibility that unfortunately my son’s issues are way too serious to expect him to ever become a functional person.
A couple of years ago, when I first realized my son had ASD (apparently lvl 1) mixed with ADHD, I was as terribly depressed and worried as you can imagine; but I gathered myself and assumed my parental duty with as much heart and positive attitude as I could manage. For my son I was eager to make whatever sacrifices were required, hoping he would improve and make progress. I knew it was going to be a long and arduous journey, but I had hope.
Nowadays, hope is gone and no coming back I am afraid.
Nothing is working and the last few months have been pure hell. My child is not making progress anymore. All the opposite, he is regressing. His communication skills have deteriorated. Worst at all is his behavior. He was always moody and hyperactive. But in the last few months he has gone in a dive. He has brutally crazy mood swings. Out of the blue he starts screaming and crying with no discernible reason. He is becoming increasingly aggressive. Sometimes he becomes uncontrollable and getting him to follow even the most basic instructions is an uphill fight. We have tried lots of behavioral therapy, but nothing works.
To be blunt, I have had enough of him.
I still love my kid. He is the most important thing in my life, but I can’t stand him anymore. I am tired of his craziness, his wild mood swings, his hysterics, his unexpected aggressiveness. Simply I can’t take it anymore. That’s it.
I know it is not his fault. I know he is an innocent victim. But so am I.
My life is in shambles because my child’s issues. My professional career is ruined. My physical and mental health are in a dive. My marriage is over. I have gone bankrupt paying for his treatment. I have put as much time, effort, money and love on my child as possible, to no avail. Don’t get me wrong, I am not complaining. I would eagerly do any sacrifice to see my child get better… but if he is not going to get better anyway, then it makes no sense to burn myself.
Thus, now I am coming to terms with the fact that if things don’t improve (and to be honest I doubt that is going to happen) then I must start planning for my son to be institutionalized, thus he will be properly cared and protected and I will get some semblance of a normal life back. I will still care for him and I will keep doing whatever I can for his wellbeing, but maybe living in an institution is the best option for my child.
I hate myself for thinking like this. I wish there was other option, but right now the only solution seems to be to institutionalized him and the faster the better for all of us. I can barely control him now; I won’t be able to control him when he gets older and bigger.
Thus, all my rambling is just to give you an overview of what is going on, so you can properly understand my questions:
What to do when your child is simply too wild and dysfunctional to live with you? What kind of institutions can have him? What is the earliest you can institutionalize your child? Have you ever been in such situation or you know about the experience of somebody who had to institutionalize his child?
Thanks in advance for whatever orientation you can provide me with.”
However, the “information” made available to the public rather creates a smokescreen, hiding the reality of a tragedy of immeasurable magnitude. It seems quite clear that the mainstream media and the film industry often label as autistic individuals who have little or nothing to do with such a condition. The result is a widespread and unrealistic image of autistic people as individuals who are simply oblivious to what is happening around them, living in their own inner world and avoiding eye contact. In addition to the family members themselves, perhaps only the health professionals (neuropediatricians, child psychiatrists, psychologists, speech therapists and occupational therapists) who deal with the affected individuals know the severity of the neuropsychiatric condition that is often behind this diagnosis.
According to the reality of a serious neuropsychiatric condition, several typical behaviors can be detailed in autistic children, as exemplified by the desperate report reproduced from the “reddit” platform. Since many of these children do not acquire, lose, or delay the development of speech, they often try in vain to express themselves by vocalizing vigorously or crying screaming. Over time, they cognitively distance themselves more and more from children of the same age. They may become extremely agitated, running/pacing around the house almost non-stop, writhing, jumping, screaming or laughing for no apparent reason, making repetitive movements (stereotypies) with their hands when excited, becoming progressively more and more aggressive, biting themselves, punching and slapping themselves on the head and ears; they may attack family members or other children by headbutting, biting and pulling hair; they may headbutt walls or even the floor; they may sleep very little at night and wake up screaming and running around the house. Additionally, between 11% and 39% of them develop epilepsy (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3065774/). In addition to being exhausted, parents see their dreams of forming a functional and happy family shattered, having to accept that their children are treated with antipsychotic and antiepileptic drugs more frequently than ever before in previous generations. Families are falling apart as mothers are left alone with a child who requires constant care and support for even the most basic needs.
Such a high level of dependence has raised serious questions about the future of autistic people (https://autismspectrumnews.org/leaving-the-family-home-opportunities-and-obstacles-for-autistic-adults/):
“When we think about the future of individuals on the autism spectrum, it is easy to feel overwhelmed.”
“Who will assume the daily support role once parents can no longer provide care?”
Epidemiological data show that we have gone from one affected individual for every 10,000 normal children in 1970 to one case of autism for every 36 normal children in 2018 (http://www.drsgoodman.com/book-reviews/479-how-to-end-the-autism-epidemic/) and we may be experiencing something like one case for every 22 normal children, depending on the country or region being considered. This is a truly tragic situation from any angle from which it is analyzed: humanitarian, social or financial.
INFLAMMATION
Without identifying the underlying cause of autism, the development of effective preventive approaches or therapies is clearly not feasible. To achieve this goal, the first step must be to characterize the nature of the pathological process affecting the autistic brain. Recognition of the underlying cause and contributing factors becomes feasible only after this initial step has been fulfilled.
In general, almost no professional who deals with these patients is aware that this is a truly organic condition, in which the brain of the carriers is affected by an active inflammatory process, of probably progressive intensity (denoted by the worsening of the behavioral condition), as demonstrated by the maintenance of high circulating levels of inflammatory markers (erythrocyte sedimentation rate, C-reactive protein, ferritin, α-2 globulins, and “tumor necrosis factor alpha” and the enzyme neuron-specific enolase (NSE) (https://www.mdpi.com/2075-1729/13/8/1736).
It is essential to pay close attention to elevated circulating levels of the enzyme neuron-specific enolase. This finding highlights a situation similar to that which occurs with the selective elevation of circulating levels of transaminase enzymes (TGO and TGP) in relation to the liver, indicating inflammatory damage to this organ (https://dracarlaholanda.com.br/tgo-e-tgp-elevados/), and leading the physician to search for the cause of the problem, for example: viral hepatitis, drug-induced hepatitis, alcoholism, fatty liver, autoimmune hepatitis, etc. (https://laboratorioexame.com.br/saude/tgo-e-tgp). As a second example, this is a situation similar to an inflammatory process (caused by infectious or non-infectious agents) that affects the myocardium (heart muscle) – myocarditis, where there is an increase in circulating levels of enzymes such as CK-MB and troponin (https://pmc.ncbi.nlm.nih.gov/articles/PMC10706911/ ). These are examples of injury to liver and myocardial cells respectively, in which the damaged cells release these enzymes into the circulation. The same goes for high creatine phosphokinase (CPK) activity in relation to polymyositis (muscle tissue damage/inflammation) (https://medlineplus.gov/lab-tests/creatine-kinase/) and for increased amylase and lipase concentrations in relation to pancreatitis (https://pubmed.ncbi.nlm.nih.gov/28720341/).
In searching for the causes of autism spectrum disorder, recognizing its active inflammatory nature is an initial step of fundamental importance, as it demonstrates that, contrary to what has been said, autism is not a simple “neuroatypical” behavior or manifestation of a “neurodiversity” of spiritual or sociobehavioral nature, but rather an organic neurological disease!
Serum NSE level is normally low while an elevated serum NSE is a reliable biomarker of active brain damage (https://www.sciencedirect.com/topics/neuroscience/neuron-specific-enolase). This biomarker has been found in various situations associated with neural degeneration, such as the acute phase of head trauma (https://www.tandfonline.com/doi/abs/10.1080/02688699647104), the acute phase of stroke (https://www.sciencedirect.com/science/article/abs/pii/S0967586805000834), over the hours or days following cardiac arrest (https://www.tandfonline.com/doi/abs/10.1080/02688699647104, https://www.resuscitationjournal.com/article/S0300-9572(20)30593-1/abstract), primary progressive multiple sclerosis (https://www.jns-journal.com/article/S0022-510X(15)00076-3/abstract), acute encephalitis syndrome caused by various infectious agents or toxins/chemical agentes (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5638837/#B2), acute exposure to Mercury (https://www.researchgate.net/publication/324020962_Evaluation_of_blood_neuron_specific_enolase_and_S-100_beta_protein_levels_in_acute_mercury_toxicity), etc.
The presence of inflammation affecting the brain tissue of individuals with ASD was confirmed through autopsies that demonstrated the presence of lymphocytic infiltrates, causing lesions in brain cells compared to autopsies performed on individuals not affected by ASD (https://onlinelibrary.wiley.com/doi/abs/10.1002/ana.25610). Inflammatory processes produce large amounts of a type of “cellular waste” – the so-called “free radicals” (https://www.sciencedirect.com/science/article/abs/pii/S0899900796000008) leading to the destruction of nerve cells through the mechanism known as “oxidative stress” – being the nervous tissue particularly sensitive to this mechanism of injury due to its high content of lipids (fats, molecules that are sensitive to the accelerated destructive process known as “lipid peroxidation”) (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5193071/; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4042144/; https://www.sciencedirect.com/science/article/pii/S2213231718300041).
Brain inflammation has been consistently documented in individuals with autism, particularly since 2010 (https://www.frontiersin.org/journals/physiology/articles/10.3389/fphys.2014.00150/full). The authors conclude in a manner consistent with an organic cause emphasized in this text:
“(…) ASD has a clear biological basis with features of known medical disorders.”
The inflammatory process, however, is not restricted to the nervous system of individuals with autism spectrum disorders. For example, inflammation of the digestive system, including enterocolitis (https://journals.lww.com/hrpjournal/fulltext/2014/03000/gastrointestinal_issues_in_autism_spectrum.5.aspx) is observed, causing abdominal cramps, chronic constipation, and constipation alternating with diarrhea, among other symptoms (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9262638/).
Gastrointestinal symptoms are present in more than 80% of cases, with unpleasant stool odor being the most frequently reported symptom (in 70% of cases) and the level of fecal calprotectin (a marker of intestinal inflammation found in feces) is elevated in proportion to the severity of gastrointestinal symptoms (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8690952/).
The presence of intestinal inflammation demonstrable through this specific laboratory test, also found in other conditions in which the intestine is inflammed (such as Crohn’s disease and ulcerative colitis – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4734737/), emphasizes the organic condition inherent to autism spectrum disorders, while also pointing to a causal factor not restricted to the nervous system.
In the presence of inflammation of brain tissue, an association between autism and epilepsy is to be expected. As Choi and Koh stated in 2008 (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2615265/):
“We provide an overview of the current knowledge that implicates brain inflammation as a common predisposing factor in epilepsy, particularly childhood epilepsy.”
This knowledge has been definitively consolidated according to the recent review by Li et al. from 2023:
(https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2023.1269241/full):
“Over the past two decades years accumulated evidences provide strong support to the hypothesis that neuroinflammation, including microglia and astrocytes activation, a cascade of inflammatory mediator releasing, and peripheral immune cells infiltration from blood into brain, is associated with epileptogenesis.” (epileptogenesis = development of epilepsy)
In accordance with the organic, inflammatory neurological nature of the neuropsychiatric condition typical of people with autism, there is a high incidence of epilepsy among children with autism. As Levisohn (2017) states (https://onlinelibrary.wiley.com/doi/full/10.1111/j.1528-1167.2007.01399.x):
“The high prevalence of epilepsy in children with autism supports a neurobiologic etiology for autism.”
Autism spectrum disorder is, therefore, a neurological disorder of organic, inflammatory nature unquestionably characterized by a broad body of evidence (https://www.frontiersin.org/journals/physiology/articles/10.3389/fphys.2014.00150/full). The presence of chronic encephalitis affecting the neuronal cells of the autistic child after birth is evident through laboratory tests that demonstrate elevated circulating levels of the neuron-specific enolase enzyme (https://www.mdpi.com/2075-1729/13/8/1736) and inflammatory cytokines such as TNF-alpha (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5669898/), interferon-gamma and interleukin-6 (https://onlinelibrary.wiley.com/doi/10.1155/2015/531518; https://www.mdpi.com/2079-3200/5/2/19).
Contrary to the frequently touted idea that neuropsychiatric changes in autism always begin in utero, many parents report that their child developed normally until some time after birth, and continued to do so until approximately 15 to 24 months, when the child began to regress or deteriorate, losing the skills he or she had acquired up to that point (https://pubmed.ncbi.nlm.nih.gov/17090484/). Regressive autism further stresses the need for identifying the causal factor underlying neuroinflammation in ASD for the sake of prevention.
The idea that “autism is not a disease” (https://novaramedia.com/2021/11/25/autism-is-not-a-disease/) is often expressed by people who are actually referring to a condition that is completely or almost completely unrelated to the subject of these editorials. Such inadequate conceptual categorization only serves to stifle the urgently needed realistic conscientization about a serious disease that began to affect successive generations around the world exponentially from the 1990s onwards. As a result, searching the scientific literature is discouraged, while the treatment of children with ASD remains relegated to antipsychotics, antiepileptics and conventional therapies (speech therapy, psychotherapy, occupational therapy, music therapy, etc., at a cost that can currently reach between twenty and twenty-five thousand reais (BRL) per month in Brazil). The cause of ASD remains unidentified and therefore cannot be effectively treated or prevented.
Along with the recognition that there is an active injury process, the lack of knowledge of its causes and the ineffectiveness of available treatments have been expressly reported in the scientific literature for many years (https://pubmed.ncbi.nlm.nih.gov/17090484/) (underlined for emphasis):
“…some children with autism may become autistic from neuronal cell death or brain damage sometime after birth as result of insult…”
“Which of the many theories may be correct and/or how the various theories may fit together remains unclear.”
“To date, treatments are varied and somewhat unpromising.”
Although ABA (Applied Behavior Analysis) has been pointed as the most effective treatment (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7265021/; https://autismsciencefoundation.org/treatment-options/#:~:text=If%20your%20child%20is%20diagnosed,applied%20behavioral%20analysis%20(ABA)) (underlined for emphasis), only “between 3% and 25% of children reportedly lose their ASD diagnosis and enter the normal range of cognitive, adaptive and social skills” (https://pubmed.ncbi.nlm.nih.gov/19009353/) and, therefore, the treatment
results are still unpromising (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8702444/) (underlined for emphasis):
“There is evidence that early and intensive ABA intervention can improve outcomes for children with ASD. Meta-analyses suggest that ABA results in small to moderate improvement in adaptive behavior, including socialization, communication, and expressive language.”
Even today, omissive and contradictory messages are transmitted on official websites such as that of the National Institutes of Environmental Health Services (NIEHS) (illustrated with a photo of a child’s expressive and happy face)
https://www.niehs.nih.gov/health/topics/conditions/autism/
“Studies indicate the rate of autism is rising, but causes are not well-understood.”
Oddly, the evidence of chronic encephalitis in autism is not mentioned on the NIEHS website.
None of the scientific studies published since the 1980s (including reviews and meta-analyses) that make up the vast list of citations used in this series of Editorials to indicate the primary cause of this inflammatory process are cited. Paradoxically, there is a denial (highlighted in bold) of the very statement reproduced above (also highlighted in bold), which suggests that the increase in autism is only apparent, rather resulting from a greater diagnostic capacity. This contributes to the smokescreen that hides this humanitarian tragedy:
“The Centers for Disease Control and Prevention (CDC) reports that autism affects 1 in 36 children. This data reflects increased ability to recognize and diagnose characteristics of autism spectrum disorder earlier in a child’s life.”
The NIEHS website also opposes the widely recognized limitations of conventional therapies by stating (underlined for emphasis):
“Diagnosing autism at a younger age allows for earlier behavioral and social interventions, which studies show can dramatically improve outcomes for children on the spectrum”
The current autism epidemic is undeniable and, that being the case, the economic burden on society is skyrocketing. The costs associated with supporting individuals with autism spectrum disorders in the United States may reach between US$61 billion and US$66 billion per year, according to estimates by the US CDC (Centers for Disease Control and Prevention) (https://www.adinaaba.com/post/autism-statistics). However, the financial impact may be understated by the CDC: combined annual direct medical, direct non-medical, and productivity costs are projected at $461 billion (range $276-$1011 billion; 0.982-3.600 % of GDP) for 2025 (https://pubmed.ncbi.nlm.nih.gov/26183723/).
In conclusion, there is an urgent need to identify the causes of this inflammatory process, which has already been extensively documented and can be easily confirmed through tests available in laboratories of clinical analysis (such as assess of serum neuron-specific enolase levels). Identifying the causes leads to the adoption of preventive measures and the implementation of effective treatments (a topic to be addressed in future editorials).
*The person solely responsible for the creation of this informative website of scientific publications in the health area, including the selection of all posts and its administrator, is Celso Galli Coimbra, OABRS 11352, e-mail cgcoimbra@gmail.com – This website is related to the work, since 2002, of Dr. Cícero Galli Coimbra, MD, PhD, CREMESP 55.714, creator of the so-called “Coimbra Protocol” by his patients, with address at Rua Dr. Diogo de Faria 775 – cj 94 – 9th floor 04037-002 – São Paulo, SP – Brazil. WhatsApp +551199328-1074, telephone: (11) 5908-5969, e-mail cgc.secretaria@gmail.com
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