A Dad's Journey

Father of Autistic Twins Speaks Out

Browsing Posts in autism in society

Now that I’m well into my 60’s, a great concern becomes the well-being of my autsitic boys (now aged 19) after we go.  These types of articles don’t help:

 

Manalapan Mayor To Gov: Shut Mental Health Facility Down

A private mental health home is infested with bed bugs, cockroaches, has sewage backing up in bathtubs and needs to be closed, she says.

By Carly Baldwin, Patch Staff
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https://patch.com/new-jersey/redbank/s/gwsph/manalapan-mayor-to-gov-shut-mental-health-facility-down?utm_term=article-slot-1&utm_source=newsletter-daily&utm_medium=email&utm_campaign=newsletter

By Alan Yuhas

For Father’s Day, Paul Rimmer headed to a service at the centuries-old Gothic chapel that he liked to visit in Cambridge, England, this time bringing his son, Tristan, 9, with him.  Tristan was enjoying the service — staring at the ceiling in awe, laughing happily — when an usher approached. The boy was being disruptive, the usher said, and needed to leave.

When Mr. Rimmer explained that his son, who is autistic, was expressing his excitement by laughing and calling out, the usher was apologetic but unmoved.

https://www.nytimes.com/2019/06/19/world/europe/cambridge-chapel-autism.html?action=click&module=Latest&pgtype=Homepage

Some children once thought to have autism spectrum disorder were later found to have other conditions or were misdiagnosed, new research finds

A growing body of evidence demonstrates that some children diagnosed with autism spectrum disorder, or ASD, can outgrow their diagnosis.

This isn’t unqualified good news: Experts caution that those children often continue struggling with other conditions.

The latest evidence was published this month in the Journal of Child Neurology. It demonstrated that among 569 children diagnosed with autism between 2003 and 2013, 38 children—or about 7%—no longer met the diagnostic criteria.

Lisa Shulman is first author of the study and professor of pediatrics at Albert Einstein College of Medicine and Montefiore Health System in Bronx, N.Y. She says that the majority of the 38 children had other new learning and language disabilities or health conditions, such as attention-deficit hyperactivity disorder, anxiety or disruptive behavior disorder. They still needed academic or behavioral support.

“An early diagnosis for autism is a red flag—it may just not be a red flag for autism,” Dr. Shulman says. “In a certain percentage of kids they have other problems. They eventually differentiate themselves.”

She says it’s hard to determine if these children who outgrow their diagnoses do so because of their own natural progression or in response to early intervention. The children who do usually have the mildest cases. Another possible explanation: Some children were misdiagnosed.

Only three of the 38 children had no other conditions or problems.

Children who are longer diagnosed with ASD show improvements with communicating and interacting with other people, which can include more eye contact and an easier time with back-and-forth conversations.

The children, whose mean age was 2.5 years old, were diagnosed and treated at a university-affiliated early intervention program in the Bronx. They were re-evaluated four years later, on average. Most of the children received a mix of speech and occupational therapy and applied behavior analysis, the standard treatment for ASD.

Children who are later diagnosed with disorders like psychosis or anxiety may have had them all along. But such conditions are hard to diagnose before children can speak well, Dr. Shulman notes.

Autism rates in the U.S. have increased steadily over the past two decades. About one in 59 U.S. children are diagnosed with ASD by age 8, according to 2014 data, the most recent available from the Centers for Disease Control and Prevention. That’s a 15% increase from 2012 and 150% increase since 2000. (Total numbers for conditions whose diagnoses are somewhat subjective and not based on blood or another type of definitive test can be difficult to get.)

https://www.wsj.com/articles/the-autism-diagnosis-that-isnt-always-permanent-11553526845?mod=hp_lead_pos9

What is “Silver & Seeds”, you may ask?  It is my wife’s vision.  A soon to be 501(c)(3) non-profit that will look to bring creative job opportunities to young autistic adults.

It will focus on fine motor skills in a peaceful setting that will allow the young man/woman to choose whatever job most inspires them.  This could involve fine bead work, or working with flower seeds or even cement & porcelain mixtures.  The idea is to match the task with whatever interests the employee that day.

It will provide both meaningful and creative employment to young autistic adults who have aged out of the school system.

It will being in beta form next year (2019).  The initial location will be Central New Jersey.  The goal is to add additional chapters once we have had a chance to finalize all the proper procedures and protocols in both a written and video instructional course training manual.

The vision is to provide a fun & creative work haven for the autistic employee as well as a trusted & welcome respite for their parents.

More details to follow.

and current autistics continue to produce the rest…

Harsh Ice Age conditions may have favoured the selection of genes which allowed some humans to focus on tasks in great detail for long periods, scientists believe

cavehttps://www.independent.co.uk/news/science/archaeology/prehistoric-autism-cave-paintings-barry-wright-penny-spikins-university-of-york-a8351751.html

 

you could have printed this same headline 20 years ago, ten years ago, five years ago.   Some of this is attributable to better reporting, but does that explain why 3% of all boys in New Jersey are diagnosed with autism?  Triple the incidence at the turn of the new millennium.

Walter Zahorodny, who tracks the autism rate in New Jersey as an associate professor of pediatrics at Rutgers New Jersey Medical School, said he’s seen no changes in New Jersey’s politics or diagnostic procedures to explain the huge increase in his state. In 2000, about 10 children out of 1,000 were considered to have autism, compared with nearly 30 out of 1,000 in 2014. autistic boy

https://www.usatoday.com/story/news/nation/2018/04/26/autism-rates-climb-experts-dont-know-why/554247002/

As parents of autistic children, at least we are living in a time and culture where their survival is assured:

 

Pioneering autism doctor Hans Asperger sent disabled children to be killed by Nazis, new study claims memorial

https://www.independent.co.uk/news/science/asperger-nazi-study-latest-proof-hans-autism-research-spiegelgrund-a8311181.html

Hans Asperger, the Austrian paediatrician who gave his name to a kind of high-functioning autism, helped the Nazis in their murder of disabled children, according to a new report.

The new study claims that the respected professor actively recommended children should be sent to their deaths at Spiegelgrund, where the Nazis enacted a policy they referred to as euthanasia that saw hundreds of children killed.

A Philadelphia Story, about a dad and his young autistic son.

Bill Tyrrell was inspired when the Eagles unveiled the Eagles Autism Challenge on September 15.

His 4-year-old son, Will, is on the spectrum and stands to benefit from the money raised by the inaugural cycling and running event happening on May 19. Tyrrell and his wife, Leah, have been able to provide their son with the services he needs but other families aren’t as fortunate.

“We took him for speech therapy at CHOP (Children’s Hospital of Philadelphia). It was costly, but it was important that he gets these extra services. You go all in. You’re going to give your kid everything you can. We try to give him all the resources we can because this is such an impressionable time,” Tyrrell said.

Tyrrell felt the urge to do more to help other children who face the same challenges as his son. He immediately registered and his Team IronWill has raised over $7,000 (as of today) for the Eagles Autism Challenge.  Tyrrell_Family_615_041318http://www.philadelphiaeagles.com/news/article-1/Inside-A-Fathers-Quest-To-Understand-His-Sons-Life-With-Autism-/443c16b0-8eae-43f9-ba2a-bf16c2ec9f1e

Addressing an estimated crowd of 20,000 people gathered in St. Peter’s Square, the pontiff urged them “to take every opportunity to be witnesses to the peace of the risen Lord, especially with regard to the most fragile and disadvantaged.”  “In this regard, I want to assure a special prayer for World Autism Awareness Day, which is celebrated today,” the pope said.

The Vatican on Monday released a message from Cardinal Peter Turkson of Ghana, Prefect of the Dicastery for Integral Human Development, for World Autism Day.

“With its works, the Church shows its attention and solicitude for persons with disturbances of the autistic spectrum,” Turkson said.

 Pope Francis 2“There’s a general attitude of welcome present in our communities, although we still struggle to practice real inclusion, for which it’s fundamental that ‘our Christian communities be houses in which every kind of suffering finds compassion, in which every family with its burden of pain and weariness can feel understood and respected in its dignity’,” he said, quoting a 2016 message from Francis.

“I address a special gaze at the families of persons with disturbances of the autistic spectrum, which merit great admiration for accepting, with love, the difficult burden of a child struck with this disturbance,” Turkson said.

Observing that national and international laws requiring assistance for persons with autism are “rarely put into effect,” Turkson said it’s usually families left to provide the bulk of the care. He called for an alliance among health systems, social service providers, and educators, to guarantee care for “the whole arc of life.”

“Persons struck by these disturbances, daily, are faced not only with difficulties resulting from their condition, but also by the main limits that society itself imposes on them, preventing them from being able to realize their true potential,” Turkson said.

Boy, this is one brave, determined mom of a five year old autistic boy:

Bystanders were horrified. But my son has autism, and I was desperate.

  February 27
trapped