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Part II Is it true or a myth that all pregnant women taking tylenol is the cause for autism later diagnosed in their baby!

Jun28

Is Tylenol Linked to Autism? As early as 2008, researchers discovered a potential link between Tylenol and postnatal autism, and noted a rise in autism since 1980. During that period, the U.S. Centers for Disease Control and Prevention recommended substituting aspirin instead of acetaminophen for infants.

Wikipedia states FactCheck.org is a nonprofit[1] website that aims to reduce the level of deception and confusion in U.S. politics by providing original research on misinformation and hoaxes.[2] It is a project of the Annenberg Public Policy Center of the Annenberg School for Communication at the University of Pennsylvania, and is funded primarily by the Annenberg Foundation.[2]

It might be long but worth the time to read but look at the references below that were used in this document!

FactCheck.org states the following about this topic

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Posted on | Corrected on May 30, 2023:

“Readers have asked whether Tylenol (acetaminophen) is connected to autism or ADHD, also known as attention-deficit/hyperactivity disorder. One person forwarded a sponsored Facebook post from the page “Child Autism & ADHD from Tylenol during pregnancy” stating that “parents of children with autism or ADHD whose mother took Tylenol while pregnant may be eligible for legal compensation.” The page continues to run similar advertisements, as do various other pages. Parents have filed lawsuits against retailers of acetaminophen, stating that their children developed autism or ADHD due to exposure to acetaminophen taken during pregnancy.

Some studies have indeed shown a relationship between acetaminophen taken during pregnancy and autism or ADHD in children, but they do not demonstrate that the acetaminophen use caused the elevated rates of autism and ADHD, researchers say. For example, a pregnant person who takes acetaminophen may have a child with ADHD or autism because of other factors, such as genetics.

Experts agree that acetaminophen has a role in pregnancy but that it should be used only when necessary and in consultation with a doctor. Avoiding use of acetaminophen for fever or pain during pregnancy may have negative consequences. For instance, an uncontrolled fever in early pregnancy can harm brain development.

A Food and Drug Administration spokesperson told us via email that the available evidence is “too limited to make any recommendations based on these studies at this time.”

The American College of Obstetricians and Gynecologists said in a 2021 statement that studies “show no clear evidence that proves a direct relationship between the prudent use of acetaminophen during any trimester and fetal developmental issues.” An ACOG representative told us that the statement is the most up-to-date communication on the topic. And a 2017 Society for Maternal-Fetal Medicine statement, which a representative also confirmed to be the most up-to-date document, found the evidence on a causal link between acetaminophen and neurobehavioral disorders to be “inconclusive.”

Studies of Acetaminophen During Pregnancy Have Weaknesses

Acetaminophen, called paracetamol outside the U.S., is used widely during pregnancy to treat pain and fever. It is an ingredient in many over-the-counter and prescription medications, including Tylenol, Excedrin and Vicodin, as well as some versions of DayQuil, NyQuil, Sudafed, Mucinex and Midol.

As we said, some studies have found that women who reported using acetaminophen during pregnancy were more likely than those who didn’t to have children who later developed autism or ADHD. A 2018 paper published in the American Journal of Epidemiology that aimed to comprehensively analyze data from multiple studies, for example, found a 34% and 19% higher risk of ADHD and autism, respectively, in children whose mothers took acetaminophen in pregnancy compared with those whose mothers did not.

But this doesn’t necessarily mean acetaminophen is to blame for the conditions.

These studies were observational, meaning that researchers simply noted levels of acetaminophen exposure, generally based on reports from the parents in the studies. Randomized controlled trials — in which one group receives a medication or treatment and another group receives a placebo or standard care — are the gold standard for determining whether a causal relationship exists.

It is possible that people who take more acetaminophen are more likely to have characteristics that predispose them to have a child with autism or ADHD — including the illnesses or other health conditions that might have prompted a pregnant person to take acetaminophen in the first place.

The authors of the 2018 study recognized this issue, writing that the results “should be interpreted with caution given that the available evidence consists of observational studies and is susceptible to several potential sources of bias.”

Sura Alwan, a birth defects epidemiologist and co-director of the Teratogen Information System at the University of Washington, told us in an email that genetic factors might also help explain the results, adding that not all studies have found an association between prenatal acetaminophen and neurodevelopmental outcomes like autism and ADHD.

In any case, she said, the studies “do not necessarily imply a causal link, which means that there isn’t enough evidence to say that taking acetaminophen causes those behavioral or cognitive concerns.”

Some researchers do think the associations are worrisome enough to caution women taking acetaminophen during pregnancy. In 2021, an international group of scientists, clinicians, and public health professionals published what they called a “consensus statement” in Nature Reviews Endocrinology, which made news for calling for “precautionary action” based on data indicating acetaminophen might alter fetal development, with an increasing impact with increasing duration of exposure.

“We recognize that limited medical alternatives exist to treat pain and fever; however, we believe the combined weight of animal and human scientific evidence is strong enough for pregnant women to be cautioned by health professionals against its indiscriminate use, both as a single ingredient and in combination with other medications,” the researchers wrote.

The statement proved controversial, however, with other groups of scientists pushing back to add context and explain why acetaminophen might not have caused the links seen in the studies.

“In my opinion, the level of evidence out there is poor, and I do not believe that there is any causal or any other association between at least short-term use of acetaminophen during pregnancy and ensuing increased risk of childhood ADHD or ASD [autism],” Dr. Per Damkier, a professor and clinical pharmacologist at Odense University Hospital and University of Southern Denmark, told us in an interview. Damkier was one of the scientists who pushed back at the consensus statement.

Multiple factors contribute to autism and ADHD. These conditions “are variable in clinical presentation, very difficult to assess and associate with a single causal factor,” Alwan said.

Damkier emphasized that many studies do not adequately take into account whether the parents had ADHD or autism, which run in families. He pointed to one study that suggested accounting for ADHD in parents likely weakens the relationship between this disorder and acetaminophen.

Many studies also rely on questionnaires filled out by parents, Damkier said. These may identify children at increased risk of ADHD or autism but do not replace an official diagnosis.

Finally, Damkier said that even if you accepted the analyses in the studies showing increased risk as valid, “which you should not,” the risk levels — typically 20% to 30% increased risk during childhood — represent a “weak association,” especially since there is typically a fair to moderate degree of uncertainty surrounding the numbers.

A Closer Look at Cord Blood

A 2019 JAMA Psychiatry study, which is cited in legal advertisements, did not rely on self-reported data, instead looking at concentrations of broken down acetaminophen components in blood collected at Boston Medical Center from umbilical cords at birth and stored for future study.

The children with acetaminophen exposure in the top third — meaning the highest concentrations of the drug components in cord blood — had 2.86 times higher odds of an ADHD diagnosis and 3.62 times higher odds of an autism diagnosis compared with children with exposure in the bottom third. “Our findings support previous studies regarding the association between prenatal and perinatal acetaminophen exposure and childhood neurodevelopmental risk and warrant additional investigations,” the authors wrote.

The authors themselves noted some limitations of the paper at the time of publication. The cord blood measurements did not give a sense of acetaminophen exposure throughout pregnancy, instead showing recent use by people who had just given birth. Further, “caution is needed to apply our findings to other populations with different characteristics,” they wrote. Finally, one author pointed out in a press release that the study does not show that Tylenol causes ADHD or autism.

Damkier and others said that some observations and the characteristics of the children in the study appeared unusual, making it hard to draw general conclusions. Every cord blood sample showed acetaminophen exposure, he noted, and there were extremely high rates of ADHD and autism among the children. The study also lacked information on the mothers’ use of drugs or history of psychiatric disease.

Acetaminophen Treats Pain and Fever During Pregnancy

Expert groups said that acetaminophen can have benefits for pregnant people experiencing pain or fever, and there may not be good alternatives. The ACOG statement reads: “ACOG and obstetrician-gynecologists across the country have always identified acetaminophen as one of the only safe pain relievers for pregnant individuals during pregnancy.”

Nonsteroidal anti-inflammatory drugs, such as ibuprofen and aspirin, can have risks during pregnancy. Taking these drugs during later portions of pregnancy can lead to problems including insufficient amniotic fluid volume and premature closing of a major blood vessel in the fetus. Opioids can also harm the fetus and lead to withdrawal at birth, as well as pose risks for the mother.

Avoiding acetaminophen could have consequences for both mother and child. Fever early in pregnancy can lead to defects in the neural tube affecting the formation of the brain or spinal cord, Alwan said, noting that it is “critically important to treat fever in pregnancy.”

The Society for Maternal-Fetal Medicine statement calls acetaminophen “a reasonable and appropriate medication choice for the treatment of pain and/or fever during pregnancy.”

The authors of the 2021 Nature Reviews Endocrinology statement suggested doing more research into acetaminophen during pregnancy and cautioned women to “forego APAP [acetaminophen] unless its use is medically indicated; consult with a physician or pharmacist if they are uncertain whether use is indicated and before using on a long-term basis; and minimize exposure by using the lowest effective dose for the shortest possible time.”

This advice is in line with longstanding recommendations for pregnant people. “ACOG’s clinical guidance remains the same and physicians should not change clinical practice until definitive prospective research is done. Most importantly, patients should not be frightened away from the many benefits of acetaminophen. However, as always, any medication taken during pregnancy should be used only as needed, in moderation, and after the pregnant patient has consulted with their doctor,” the ACOG statement said.

“It is important for pregnant women and all women of reproductive age who may become pregnant to always consult their health care provider to find the best treatment option for pain or fever in pregnancy, which may be taking the recommended dose of acetaminophen and making sure to stay well hydrated and getting lots of rest,” Alwan said. People with questions about medications during pregnancy or breastfeeding can contact organizations like MotherToBaby, she added.

An FDA spokesperson told us in an email: “The FDA is aware of and understands the concerns arising from reports questioning the safety of prescription and over-the-counter (OTC) pain medicines when used during pregnancy. As a result, we evaluated research studies on acetaminophen published in the medical literature and determined that they are too limited to make any recommendations based on these studies at this time. Because of this uncertainty, the use of pain medicines during pregnancy should be carefully considered. We urge pregnant persons to always discuss all medicines with their health care professionals before using them. Acetaminophen labels contain the following information regarding pregnancy: ‘If pregnant or breast feeding, ask a health professional before use.’ The FDA continues to review the published literature and to monitor the potential impacts of acetaminophen.”

The spokesperson concluded by sharing a link to a 2015 Drug Safety Communication describing an FDA review of the risks of pain medicine during pregnancy. The document noted that severe and persistent pain, when not treated effectively, can lead to depression, anxiety and high blood pressure for the pregnant individual.

Correction, May 30: An earlier version of this article incorrectly stated that acetaminophen is an ingredient in oxycodone. Oxycodone is an opioid that is sometimes combined with acetaminophen. We thank the reader who brought this to our attention.

Clarification, June 6: An earlier version of this article listed drugs that contain acetaminophen, but did not make clear that acetaminophen is only in some versions of several of the drugs. We have updated the article to clarify this point. We thank the reader who brought this to our attention.

Editor’s note: SciCheck’s articles providing accurate health information and correcting health misinformation are made possible by a grant from the Robert Wood Johnson Foundation. The foundation has no control over FactCheck.org’s editorial decisions, and the views expressed in our articles do not necessarily reflect the views of the foundation.”

In my opinion as a acute nurse 37 years this topic needs much more research to put the blame only on Tylenol but for decades in general, drugs unless absolutely necessary should not be used during pregnancy because drugs taken by a pregnant woman can reach the fetus with side effects and be permanent possibly but in some cases it is necessary and not just Tylenol.  The pregnant women is the one also to say if she will allow it.  So the reason it was taken goes case by case.  Ending line more research is needed.  For example look at Covid and the vaccination with shutting down over a year, just saying.

Sources

Acetaminophen – ASD/ADHD Products Liability Litigation. MDL No. 3043. Transfer Order. United States Judicial Panel on Multidistrict Litigation. 5 Oct 2022.

Ji, Yuelong et al. “Association of Cord Plasma Biomarkers of In Utero Acetaminophen Exposure With Risk of Attention-Deficit/Hyperactivity Disorder and Autism Spectrum Disorder in Childhood.” JAMA Psychiatry. 30 Oct 2019.

Bauer, Ann Z. et al. “Paracetamol Use during Pregnancy — a Call for Precautionary Action.” Nature Reviews Endocrinology. 23 Sep 2021.

Masarwa, Reem et al. “Prenatal Exposure to Acetaminophen and Risk for Attention Deficit Hyperactivity Disorder and Autistic Spectrum Disorder: A Systematic Review, Meta-Analysis, and Meta-Regression Analysis of Cohort Studies.” American Journal of Epidemiology. 24 Apr 2018.

Damkier, Per et al. “Handle with Care — Interpretation, Synthesis and Dissemination of Data on Paracetamol in Pregnancy.” Nature Reviews Endocrinology. 14 Dec 2021.

Alwan, Sura et al. “Paracetamol Use in Pregnancy — Caution over Causal Inference from Available Data.” Nature Reviews Endocrinology. 14 Dec 2021.

O’Sullivan, Joseph et al. “Paracetamol Use in Pregnancy — Neglecting Context Promotes Misinterpretation.” Nature Reviews Endocrinology. 11 March 2022.

“ACOG Response to Consensus Statement on Paracetamol Use During Pregnancy.” American College of Obstetricians and Gynecologists. 29 Sep 2021.

Society for Maternal-Fetal Medicine (SMFM) Publications Committee. “Prenatal Acetaminophen Use and Outcomes in Children.” American Journal of Obstetrics and Gynecology. 23 Jan 2017.

“ACETAMINOPHEN |TERIS agent – 1017.” Teratogen Information System. Accessed 17 Feb 2023.

“Common Medicines with Acetaminophen.”KnowYourDose.org. Accessed 20 Feb 2023.

Cueto, Isabella. “New research cautions about possible risks of acetaminophen use during pregnancy.” STAT. 23 Sep 2021.

Tingley, Kim. “Why Is Good Medical Advice for Pregnant Women So Hard to Find?” New York Times Magazine. 21 Oct 2021.

Ystrom, Eivind et al. “Prenatal Exposure to Acetaminophen and Risk of ADHD.” Pediatrics. 1 Nov 2017.

Liew, Zeyan et al. “Maternal use of acetaminophen during pregnancy and risk of autism spectrum disorders in childhood: A Danish national birth cohort study.” Autism Research. 21 Dec 2015.

“What Is Autism Spectrum Disorder?” CDC. Updated 9 Dec 2022.

“What Is ADHD?” CDC. Updated 9 Aug 2022.

Masarwa, Reem et al. “Acetaminophen use during pregnancy and the risk of attention deficit hyperactivity disorder: A causal association or bias?” Paediatric and Perinatal Epidemiology. 9 Jan 2020.

“Expert Reaction to Study Looking at Paracetamol in Pregnancy and Autism, ADHD and Other Developmental Disabilities in Children.” Science Media Centre. 30 Oct 2019.

Bauer, Ann Z. et al. “Reply to ‘Paracetamol use in pregnancy — caution over causal inference from available data’; ‘Handle with care — interpretation, synthesis and dissemination of data on paracetamol in pregnancy’” Nature Reviews Endocrinology. 14 Dec 2021.

ACOG Committee on Clinical Practice Guidelines–Obstetrics. “Headaches in Pregnancy and Postpartum: ACOG Clinical Practice Guideline No. 3.” Obstetrics and Gynecology. 1 May 2022.

“FDA Recommends Avoiding Use of NSAIDs in Pregnancy at 20 Weeks or Later Because They Can Result in Low Amniotic Fluid.” FDA. 15 Oct 2020.

“About Opioid Use during Pregnancy.” CDC. Updated 28 Nov 2022.

“FDA Drug Safety Communication: FDA has reviewed possible risks of pain medicine use during pregnancy.” FDA. 9 Jan 2015.

 

 

QUOTE FOR FRIDAY:

Jun27

“There’s been some confusion around the safety of using acetaminophen (commonly known as Tylenol or paracetamol) during pregnancy, with many people afraid to use Tylenol while pregnant in their first trimester.

While older studies suggested that taking the drug too often during pregnancy could increase your future child’s risks for developing autism or attention-deficit/hyperactivity disorder (ADHD), a recent 2024 study found that taking acetaminophen while pregnant doesn’t increase your child’s risk of these neurodevelopmental disorders.”

Cleveland Clinic (Is Tylenol Safe During Pregnancy?)

Part I Is it true or a myth that all pregnant women taking tylenol is the cause for autism later diagnosed in their baby!

Jun27

Taking Tylenol during pregnancy associated with elevated risks for autism, ADHD

A Johns Hopkins study analyzing umbilical cord blood samples found that newborns with the highest exposure to acetaminophen were about three times more likely to be diagnosed with ADHD or autism spectrum disorder in childhood

(https://hub.jhu.edu/2019/11/05/acetaminophen-pregnancy-autism-adhd/)

Published Nov 5, 2019

John Hopkins report:

“Published Nov 5, 2019

A new study from researchers at the Johns Hopkins Bloomberg School of Public Health has found that exposure to acetaminophen in the womb may increase a child’s risk for attention deficit hyperactivity disorder or autism spectrum disorder.

The researchers analyzed data from the Boston Birth Cohort, a 20-year study of early life factors influencing pregnancy and child development. They found that children whose cord blood samples contained the highest levels of acetaminophen—the generic name for the drug Tylenol—were roughly three times more likely to be diagnosed with ADHD or autism spectrum disorder later in childhood, compared to children with the lowest levels of acetaminophen in their cord blood.

Their findings were published last week in JAMA Psychiatry.

Previous studies have found an association between maternal use of acetaminophen during pregnancy and increased risks of adverse childhood outcomes, including neurodevelopmental disorders such as ADHD—which is marked by hyperactivity and difficulty paying attention or controlling impulsive behavior—and autism spectrum disorder, a complex developmental disorder that can affect how a person socializes, communicates, and behaves. Because these studies relied on mothers self-reporting their acetaminophen use, critics have said the findings may be affected by recall bias or lack an objective measure of in-utero exposure. As a result, the U.S. Food and Drug Administration has refrained from making recommendations regarding the use of acetaminophen during pregnancy.

“People in general believe Tylenol is benign, and it can be used safely for headaches, fever, aches, and pains,” says Xiaobin Wang, a professor in the Bloomberg School’s Department of Population, Family, and Reproductive Health and the study’s corresponding author. “Our study further supports the concerns raised by previous studies—that there is a link between Tylenol use during pregnancy and increased risk for autism or ADHD.”

For the study, which was authored by Johns Hopkins postdoctoral fellow Yuelong Ji and colleagues, the team measured the biomarkers of acetaminophen and two of its metabolic byproducts in umbilical cord blood samples from 996 individual births. Every sample analyzed contained some level of acetaminophen—confirming the drug’s widespread use during pregnancy, labor, and delivery. The researchers then divided the study children into three groups based on the amount of acetaminophen and its metabolites present in their cord blood samples.

RESEARCH
Understanding autism

Related coverage of what scientists know about autism—and what they’re still working to discover

Compared to the group with the lowest amount of acetaminophen exposure, the children in the middle third group were about 2.26 times more likely to have an ADHD diagnosis and 2.14 times more likely to have an autism spectrum disorder diagnosis. Those with the highest levels of exposure were associated with 2.86 times the risk of ADHD and 3.62 times the risk for autism spectrum disorder, compared to those with the lowest exposure.

The researchers found consistent associations between the drug and the disorders across a variety of other factors that correlate with ADHD and autism spectrum disorder diagnoses, such as maternal BMI, preterm birth, child sex, and reports of maternal stressors and substance use.

Wang points out that although the study found a consistent association between biomarkers of acetaminophen and its metabolites in cord blood and child risk of ADHD and autism spectrum disorder, it should not be interpreted that the Tylenol use causes these disorders.

“More studies are clearly needed to further clarify the concern,” Wang says. “Until it is certain, parents and providers may want to consider the benefit and potential risk when making a decision on the use of acetaminophen during pregnancy or the peripartum period.”

(https://hub.jhu.edu/2019/11/05/acetaminophen-pregnancy-autism-adhd/)

QUOTE FOR THURSDAY:

Jun26

“Join the National Safety Council in June for National Safety Month – the annual observance to help keep each other safe from the workplace to anyplace. Since 1996, NSM has provided free safety resources to highlight leading causes of preventable injury and death. Let’s make people safer this June and all year long!”

NSC National Safety Month (National Safety Month – National Safety Council)

Tips for National Safety Month!

Jun26

In 1996, the National Safety Council (NSC) established June as National Safety Month in the United States. The goal of Summer Safety Month is to increase public awareness of the leading safety and health risks that are increased in the summer months to decrease the number of injuries and deaths at homes and workplaces.

Anyone can be at risk for a heat-related illness. Follow these summer safety tips, like taking extra breaks and drinking lots of water (the best thing to drink and if you’re like me and not crazy about room temperature water than try with ice in it which to me tastes a lot better).

Moderating your exposure to heat goes beyond reapplying sunscreen and covering up. You will want to take extra steps to avoid being outside for long periods in the sun and heat, especially during the peak hours of strongest ultraviolet (UV) rays, during the hours of 11 a.m. to 4 p.m.

The following are summer safety tips to prevent you and your family from going to the emergency room & stay safe!

The most important TIP is always beat the HEAT.  To do that you avoid strenuous exercise on particularly hot days.  To watch out for heat exhaustion look for dizziness, nausea, fatigue, headache, & confusion.

Some further tips for National Safety that is the month of June:

1. Stay hydrated; Dehydration is another safety concern during the summer months. Be sure to drink enough liquids throughout the day, as our bodies can lose a lot of water through perspiration when it gets hot out.

2-Remember to always have adult supervision for children. Whether they’re in the pool or playing in the sand at the on the beach at the seashore, having someone who can help them — should an emergency arise — if essential.  You should always have a first aid box in REACH.

3-Not only can injuries happen, but in heat exhaustion and dehydration that can happen more often in the summer months due to the high temperature the season has. It helps to be conditioned to the activities in which we’re preparing to engage. Warm up, stretch, gear up, go with a buddy, and remember to cool down and stretch afterwards.

4-The sun’s ultraviolet (UV) light can harm the eyes. Wear sunglasses year-round whenever you are out in the sun.

Sun damage to the eyes can occur any time of year. Choose shades that block 99 to 100 percent of both UVA and UVB light that are especially highier in the summer; since we have most sunshine in the summer.  This will bring us to the next tip.

5-Use a sunscreen 30 minutes before going out. Reapply sunscreen every two hours or after swimming or sweating. Limit sun exposure during the peak intensity hours – between 11 a.m. and 4 p.m. Stay in the shade more often during the peak intensity hours but for some people who may have pale skin, skin cancer history, or vision problems, etc… stay in the shade whenever possible.

6-Never leave children alone around water. Always designate an adult to watch kids in or around the water.  Alsways helpful is to learn how to swim but never swim alone.

7-Beware of bugs; by using an insect repellent that contains citronella or DEET. Change clothes and wash off repellent when you come inside. Avoid bug-infested areas such as tall grass and still water.

8-First, it is important to understand that In 2020, injuries related to slips, trips and falls account for 22 per cent of injuries. Of disabling injuries related to slips, trips and falls injuries from 2016 to 2020:

• The majority were due to workers falling (83 per cent), with nearly 57 per cent of falls occurring to a floor, walkway or other surface.

• Twenty-three per cent occurred in the provincial and municipal government, education and health services sector, followed by another 20 per cent in the construction and construction trade services sector. (Government of Alberta Workplace injury, illness and fatality statistics provincial summary 2020)

** Also keep in mind in 2021, slips, trips and falls remain as one of the top 3 causes of all injuries in the continuing care and senior supportive living communities, and they can have a tremendous impact on the injured workers as well as their co-workers, families, and the people they care for.

Slips and trips happen in the workplace for many reasons, that is why it is important to also know the key factors that increase your chances of sustaining an injury, in order to reduce your risk.  Know your environment and keep it clean, free of clutter, and again hydrate to prevent dizziness from the heat this time of year.  This month and next month with even August can put you at high risk for heat exhaustion!  Not hydrating with water puts you at risk for orthostatic hypotension (changing positions from sitting or lying down to standing and becoming dizzy.  This is a high potential of occurring especially if not hydrated in hot temperatures, especially the elderly.

 

 

 

QUOTE FOR WEDNESDAY:

Jun25

“Undeterred by deafness and blindness, Helen Keller rose to become a major 20th century humanitarian, educator and writer. She advocated for the blind and for women’s suffrage and co-founded the American Civil Liberties Union.

Several months before Helen’s second birthday, a serious illness—possibly meningitis or scarlet fever—left her deaf and blind. She had no formal education until age seven, and since she could not speak, she developed a system for communicating with her family by feeling their facial expressions.

Recognizing her daughter’s intelligence, Keller’s mother sought help from experts including inventor Alexander Graham Bell, who had become involved with deaf children. Ultimately, she was referred to Anne Sullivan, a graduate of the Perkins School for the Blind, who became Keller’s lifelong teacher and mentor. Although Helen initially resisted her, Sullivan persevered. She used touch to teach Keller the alphabet and to make words by spelling them with her finger on Keller’s palm. Within a few weeks, Keller caught on. A year later, Sullivan brought Keller to the Perkins School in Boston, where she learned to read Braille and write with a specially made typewriter. Newspapers chronicled her progress. At fourteen, she went to New York for two years where she improved her speaking ability, and then returned to Massachusetts to attend the Cambridge School for Young Ladies. With Sullivan’s tutoring, Keller was admitted to Radcliffe College, graduating cum laude in 1904. Sullivan went with her, helping Keller with her studies. (Impressed by Keller, Mark Twain urged his wealthy friend Henry Rogers to finance her education.)

Even before she graduated, Keller published two books, The Story of My Life (1902) and Optimism (1903), which launched her career as a writer and lecturer.

After Sullivan’s death in 1936, Keller continued to lecture internationally with the support of other aides, and she became one of the world’s most-admired women (though her advocacy of socialism brought her some critics domestically). During World War II, she toured military hospitals bringing comfort to soldiers.

A second film on her life won the Academy Award in 1955; The Miracle Worker —which centered on Sullivan—won the 1960 Pulitzer Prize as a play and was made into a movie two years later. Lifelong activist, Keller met several US presidents and was honored with the Presidential Medal of Freedom in 1964. She also received honorary doctorates from Glasgow, Harvard, and Temple Universities.  She was an inspiration to all.”

National Women’s History Museum (Helen Keller | National Women’s History Museum)

 

Part II Helen Keller Deaf-Blindness Awareness Week (June 22-28)

Jun25

Orientation and Mobility

In addition, the child who is deaf-blind will need help learning to move about in the world. Without vision, or with reduced vision, he or she will not only have difficulty navigating, but may also lack the motivation to move outward in the first place. Helping a young child who is deaf-blind learn to move may begin with thoughtful attention to the physical space around him or her (crib or other space) so that whatever movements the child instinctively makes are rewarded with interesting stimulation that motivates further movement. Orientation and mobility specialists can help parents and teachers to construct safe and motivating spaces for the young child who is deaf-blind. In many instances children who are deaf-blind may also have additional physical and health problems that limit their ability to move about. Parents and teachers may need to include physical and occupational therapists, vision teachers, health professionals, and orientation and mobility specialists on the team to plan accessible and motivating spaces for these children. Older children or adults who have lost vision can also use help from trained specialists in order to achieve as much confidence and independence as possible in moving about in their world.

Individualized Education

Education for a child or youth with deaf-blindness needs to be highly individualized; the limited channels available for learning necessitate organizing a program for each child that will address the child’s unique ways of learning and his or her own interests. Assessment is crucial at every step of the way. Sensory deficits can easily mislead even experienced educators into underestimating (or occasionally overestimating) intelligence and constructing inappropriate programs.

Helen Keller said, “Blindness separates a person from things, but deafness separates him from people.” This potential isolation is one important reason why it is necessary to engage the services of persons familiar with the combination of both blindness and deafness when planning an educational program for a child who is deaf-blind. Doing so will help a child or youth with these disabilities receive an education which maximizes her or his potential for learning and for meaningful contact with her or his environment. The earlier these services can be obtained, the better for the child.

Transition

When a person who is deaf-blind nears the end of his or her school-based education, transition and rehabilitation help will be required to assist in planning so that as an adult the individual can find suitable work and living situations. Because of the diversity of needs, such services for a person who is deaf-blind can rarely be provided by a single person or agency; careful and respectful teamwork is required among specialists and agencies concerned with such things as housing, vocational and rehabilitation needs, deafness, blindness, orientation and mobility, medical needs, and mental health.

The adult who is deaf-blind must be central to the transition planning. The individual’s own goals, directions, interests, and abilities must guide the planning at every step of the way. Skilled interpreters, family members and friends who know the person well can help the adult who is deaf-blind have the most important voice in planning his or her own future.

Inclusion in Family

Clearly, the challenges for parents, teachers and caregivers of children who are deaf-blind are many. Not least among them is the challenge of including the child in the flow of family and community life. Since such a child does not necessarily respond to care in the ways we might expect, parents will be particularly challenged in their efforts to include her or him. The mother or father of an infant who can see is usually rewarded with smiles and lively eye contact from the child. The parent of a child who is deaf-blind must look for more subtle rewards: small hand or body movements, for instance, may be the child’s way of expressing pleasure or connection. Parents may also need to change their perceptions regarding typical developmental milestones. They can learn, as many have, to rejoice as fully in the ability of their child who is deaf-blind to sign a new word, or to feed herself, or to return a greeting as they do over another child’s college scholarship or success in basketball or election to class office.

Parents, then, may need to shift expectations and perceptions in significant ways. They also need to do the natural grieving that accompanies the birth of a child who is disabled. Teachers and caregivers must also make these perceptual shifts. Parents’ groups and resources for teachers can provide much-needed support for those who live and work with children and adults who are deaf-blind. Such supports will help foster the mutually rewarding inclusion of children who are deaf-blind into their families and communities. (See section below for resources.)

Summary

Though deaf-blindness presents many unique challenges to both those who have visual and hearing impairments and to their caregivers and friends, these challenges are by no means insurmountable. Many persons who are deaf-blind have achieved a quality of life that is excellent. The persons who are deaf-blind who have high quality lives have several things in common.

First, they have each, in their own way, come to accept themselves as individuals who have unique experiences of the world, and valuable gifts to share. This fundamental acceptance of self can occur regardless of the severity of the particular sensory losses or other challenges that a person has. Second, they have had educational experiences which have helped them maximize their abilities to communicate and to function productively. Finally, these happy, involved persons who are deaf-blind live in families, communities, or social groups that have an attitude of welcoming acceptance. They have friends, relatives, and co-workers who value their presence as individuals with significant contributions to make to the world around them. For these persons with limited sight and hearing, and for those near them, deaf-blindness fosters opportunities for learning and mutual enrichment.

 

 

QUOTE FOR TUESDAY:

Jun24

“In recognition of the achievements of people who are DeafBlind, the Helen Keller National Center for DeafBlind Youths & Adults (HKNC) celebrates the last week in June as “DeafBlind Awareness Week.”

This year marks the 41st anniversary of this national advocacy campaign which has been held each year since 1984 when then-President Ronald Reagan issued a proclamation in recognition of this special week. The purpose of DeafBlind Awareness Week is to raise public awareness about individuals who have combined hearing and vision loss.  In 2025, we will celebrate Helen Keller DeafBlind Awareness Week from June 22nd to June 28th.

This year’s campaign, “Cultivating Leadership: Together We Grow,” focuses on leadership development within the DeafBlind community across all life stages.”

Helen Keller Services – HKS  (DeafBlind Awareness Week 2025 Cultivating Leadership: Together We Grow)

Part I Helen Keller Deaf-Blind Awareness Week (June 22-28)

Jun24

Today, many children who are born deaf or blind have access to amazing support to help them navigate the world. Similarly, those who suffer loss of hearing or sight later in life have numerous resources to help them overcome communication barriers introduced by their new reality. It’s unlikely that those in this situation would be cut off completely from communicating with others. In the 1880s, Helen Keller wasn’t so fortunate. Despite all of the barriers that she faced because of her deafness, her blindness and her gender, she was able to do impressive work with Anne Sullivan to move care of the deaf-blind population forward

Those unfortunately born with no sight and hearing face many challenges.

It may seem that deaf-blindness refers to a total inability to see or hear. However, in reality deaf-blindness is a condition in which the combination of hearing and visual losses in children cause “such severe communication and other developmental and educational needs that they cannot be accommodated in special education programs solely for children with deafness or children with blindness” ( 34 CFR 300.8 ( c ) ( 2 ), 2006) or multiple disabilities. Children who are called deaf-blind are singled out educationally because impairments of sight and hearing require thoughtful and unique educational approaches in order to ensure that children with this disability have the opportunity to reach their full potential.

A person who is deaf-blind has a unique experience of the world. For people who can see and hear, the world extends outward as far as his or her eyes and ears can reach. For the young child who is deaf-blind, the world is initially much narrower. If the child is profoundly deaf and totally blind, his or her experience of the world extends only as far as the fingertips can reach. Such children are effectively alone if no one is touching them. Their concepts of the world depend upon what or whom they have had the opportunity to physically contact.

If a child who is deaf-blind has some usable vision and/or hearing, as many do, her or his world will be enlarged. Many children called deaf-blind have enough vision to be able to move about in their environments, recognize familiar people, see sign language at close distances, and perhaps read large print. Others have sufficient hearing to recognize familiar sounds, understand some speech, or develop speech themselves. The range of sensory impairments included in the term “deaf-blindness” is great.

As far as it has been possible to count them, there are over 10,000 children (ages birth to 22 years) in the United States who have been classified as deaf-blind (NCDB, 2008). It has been estimated that the adult deaf-blind population numbers 35-40,000 (Watson, 1993). The causes of deaf-blindness are many. Below is a list of many of the possible etiologies of deaf-blindness.

Major Causes of Deaf-Blindness:

Syndromes-Like Down Syndrome, Trisomy13 Syndrome & Usher

Multiple Congenital Anomalies- Like CHARGE Association, Fetal alcohol syndrome, Hydrocephaly, Maternal drug abuse and Microcephaly.

Prematurity=Congenital Prenatal Dysfunction.  Like AIDS, Herpes, Rubella, Syphilis and Toxoplasmosis.

Post-natal Causes- Like Asphyxia, Encephalitis, Head injury/trauma, Meningitis and Stroke.

The one major CHALLENGE these patients face:

Communication:

The disability of deaf-blindness presents unique challenges to families, teachers, and caregivers, who must make sure that the person who is deaf-blind has access to the world beyond the limited reach of his or her eyes, ears, and fingertips. The people in the environment of children or adults who are deaf-blind must seek to include them—moment-by-moment—in the flow of life and in the physical environments that surround them. If they do not, the child will be isolated and will not have the opportunity to grow and to learn. If they do, the child will be afforded the opportunity to develop to his or her fullest potential.

The most important challenge for parents, caregivers, and teachers is to communicate meaningfully with the child who is deaf-blind. Continual good communication will help foster his or her healthy development. Communication involves much more than mere language. Good communication can best be thought of as conversation. Conversations employ body language and gestures, as well as both signed and spoken words. A conversation with a child who is deaf-blind can begin with a partner who simply notices what the child is paying attention to at the moment and finds a way to let the child know that his or her interest is shared.

This shared interest, once established, can become a topic around which a conversation can be built. Mutual conversational topics are typically established between a parent and a sighted or hearing child by making eye contact and by gestures such as pointing or nodding, or by exchanges of sounds and facial expressions. Lacking significant amounts of sight and hearing, children who are deaf-blind will often need touch in order for them to be sure that their partner shares their focus of attention. The parent or teacher may, for example, touch an interesting object along with the child in a nondirective way. Or, the mother may imitate a child’s movements, allowing the child tactual access to that imitation, if necessary. (This is the tactual equivalent of the actions of a mother who instinctively imitates her child’s babbling sounds.) Establishing a mutual interest like this will open up the possibility for conversational interaction.

Teachers, parents, siblings, and peers can continue conversations with children who are deaf-blind by learning to pause after each turn in the interaction to allow time for response. These children frequently have very slow response times. Respecting the child’s own timing is crucial to establishing successful interactions. Pausing long enough to allow the child to take another turn in the interaction, then responding to that turn, pausing again, and so on—this back-and-forth exchange becomes a conversation. Such conversations, repeated consistently, build relationships and become the eventual basis for language learning.

As the child who is deaf-blind becomes comfortable interacting nonverbally with others, she or he becomes ready to receive some form of symbolic communication as part of those interactions. Often it is helpful to accompany the introduction of words (spoken or signed) with the use of simple gestures and/or objects which serve as symbols or representations for activities. Doing so may help a child develop the understanding that one thing can stand for another, and will also enable him or her to anticipate events.

Think of the many thousands of words and sentences that most children hear before they speak their own first words. A child who is deaf-blind needs comparable language stimulation, adjusted to his or her ability to receive and make sense of it. Parents, caregivers, and teachers face the challenge of providing an environment rich in language that is meaningful and accessible to the child who is deaf-blind. Only with such a rich language environment will the child have the opportunity to acquire language herself or himself. Those around the child can create a rich language environment by continually commenting on the child’s own experience using sign language, speech, or whatever symbol system is accessible to the child. These comments are best made during conversational interactions. A teacher or a parent may, for example, use gesture or sign language to name the object that he or she and the child are both touching, or name the movement that they share. This naming of objects and actions, done many, many times, may begin to give the child who is deaf-blind a similar opportunity afforded to the hearing child—that of making meaningful connections between words and the things for which they stand.

Principal communication systems for persons who are deaf-blind are these:

  • touch cues
  • gestures
  • object symbols
  • picture symbols
  • sign language
  • fingerspelling
  • Signed English
  • Pidgin Signed English
  • braille writing and reading
  • Tadoma method of speech reading
  • American Sign Language
  • large print writing and reading
  • lip-reading speech

Along with nonverbal and verbal conversations, a child who is deaf-blind needs a reliable routine of meaningful activities, and some way or ways that this routine can be communicated to her or him. Touch cues, gestures, and use of object symbols are some typical ways in which to let a child who is deaf-blind know what is about to happen to her or him. Each time before the child is picked up, for example, the caregiver may gently lift his or her arms a bit, and then pause, giving the child time to ready herself or himself for being handled. Such consistency will help the child to feel secure and to begin to make the world predictable, thus allowing the child to develop expectations. Children and adults who are deaf-blind and are able to use symbolic communication may also be more reliant on predictable routine than people who are sighted and hearing. Predictable routine may help to ease the anxiety which is often caused by the lack of sensory information.

Stay tune for Part II tomorrow on other challenges.

 

QUOTE FOR MONDAY:

Jun23

“There were estimated 31,800 new cases of HIV infections in the U.S. in 2022.  Of those 67% (21,400) who were primarily men that were either gay, bisexual, and other men who reported male to male sexual contact.  Then 22% (7000) were among people heterosexual contact and 7% (2300) were among people who inject drugs. Again, these statistics were in 2022.  Ending the HIV epidemic; it is estimated that in 2025 new HIV infections will be at 9,300 and in 2030 only 3,000 new cases.”

Center for Disease Control and Prevention-CDC (Fast Facts: HIV in the United States | HIV | CDC)