Glendale native talks about his journey from diving champ to disability advocate and filmaker

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Published by: Milwaukee Journal Sentinel
Written by: Alex Groth

After spending his early career traveling across the globe as a professional diver, Glendale native Tom Haig suffered an accident that resulted in him becoming a wheelchair user.

But that didn’t stop him from pursuing what he calls his redemption story. He’s since traveled across the world as a disability advocate and documentary filmmaker.

You can be as down as you can possibly imagine. And you can turn that around,” Haig said. Click here to read the rest of the story.

 

 

Moving for autism care

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Published by: Spectrum
Written by: Marta Zaraska

After their son Jett was diagnosed with autism, Sarah Harris and James Shilling found the local care wanting in West Virginia, where they live. They faced long waitlists for the standard autism therapy, applied behavior analysis (ABA), and local schools were either too expensive or lacked programs appropriate for their son. Harris and Shilling envied the options they found in the neighboring state of Ohio, such as ABA-centered curricula designed for children with learning and sensory differences. “I got really frustrated that we couldn’t do something like that,” Harris says. They wanted to move — but felt they could not afford to do so. Shilling’s unionized job as a truck driver was not easily transferable, and the family feared losing their health insurance.

David and Michelle Lane, who live in Kentucky, were also eyeing better care across state lines. When their son Aaron, who has autism, became aggressive as a pre-teenager, nothing they tried seemed to help. Appropriate therapy and schooling seemed elusive where they lived, Michelle recalls. So by the time Aaron was 17, the family felt they had exhausted all local options, and they decided to move. “We looked all over the whole country,” David says. In the end, they decided on Boston, Massachusetts, after friends with a daughter on the spectrum raved about the great schools there.

No one knows exactly how many families move, or want to move, for better autism services in the United States, but some evidence suggests that the desire to do so is common. Unpublished findings from a 2004 survey of 969 caregivers of people with autism suggest that about 1 in 5 moved to get higher quality services, according to David Mandell, associate professor of psychiatry and pediatrics at the University of Pennsylvania in Philadelphia. Local U.S. autism organizations, including the Autism Society of Colorado and AutismUp in Rochester, New York, say that just about every week they hear from a family wanting to move to another state in search of superior care. And autism forums on sites such as BabyCenter, Facebook and Reddit are rife with questions from parents about autism-friendly states. Click here to read the rest of the story.

Brain’s sensory processor may prompt memory problems in autism

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Published by: Spectrum News
Written by: Lauren Schenkman

Silencing several autism- or schizophrenia-linked genes in the thalami of mice increases neuronal excitability there and leads to memory problems reminiscent of those seen in people with these conditions, a new study shows. A drug that reverses the hyperexcitability boosts the animals’ recall, suggesting an avenue for future therapies, researchers say.

“It’s exciting to see how different genetic changes can converge onto the same circuits in the brain, and even onto the same physiological mechanism,” says Audrey Brumback, assistant professor of neurology and pediatrics at the University of Texas at Austin, who was not involved in the research. “We’re really then getting toward the final common pathway that could be a target for treatment.”

Mice lacking the high-confidence autism-linked gene PTCHD1 in the thalamic reticular nucleus, a subregion of the thalamus, are hyperactive and have attention deficits, according to a 2015 study. In the new work, the same team eliminated PTCHD1 expression and the expression of four other genes linked to either autism or schizophrenia in a different subregion, the anterodorsal thalamus. Click here to read the rest of the story.

Disorder of Written Expression and Dysgraphia: Definition, Diagnosis, and Management

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Introduction

This study reviews the disorder of written expression and dysgraphia by examining the defintion, diagnosis and management of the disorder.

Findings

  • Though common in children, dysgraphia and disorders of written expression are often overlooked by the school and family as a character flaw rather than a genuine disorder.
  • Research is needed in the field to clarify the definition and etiology of the disorder.
  • regardless of the presenting symptoms, early intervention has been linked to improved results.
  • Because of the typical delay in the diagnosis of dysgraphia, the primary care provider can play an important role in recognizing the condition and initiating the proper work-up and intervention.
  • Screening for co-morbid medical, neurodevelopmental. psychiatric and learning disorders is also important function of the provider.

Reference

Chung, P.J.; Patel, D.R.; Nizami, I. Disorder of Written Expression and Dysgraphia: Definition, Diagnosis, and Management.  Translational Pediatrics. 2020 9(Suppl 1): S46-S54.doi: 10.21037/tp2019.11.01

Recommended treatments are best for infantile spasms

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Published by: Cornell Chronicle
Written by: Jane Langille

Children with infantile spasms, a rare form of epileptic seizures, should be treated with one of three recommended therapies and the use of nonstandard therapies should be strongly discouraged, according to a study of their effectiveness by a Weill Cornell Medicine and NewYork-Presbyterian investigator and collaborating colleagues in the Pediatric Epilepsy Research Consortium.

Early treatment with an effective therapy is important for improving neurodevelopmental outcomes and, for some children, can result in permanent remission of epilepsy.

The study, published July 15 in Neurology, underscored a strong preference for treating infantile spasms with adrenocorticotropic hormone (ACTH) or oral steroids (typically prednisolone), which the researchers calculated were similarly effective: The%ages of children who had no further seizures after 30 days of starting initial therapy and did not require a second treatment were 46% for ACTH and 44% for oral steroids. By contrast, the estimated effectiveness of non-standard therapies (such as topiramate) was only 8%.

“The side effects of hormonal therapies like ACTH and steroids can be rough on families, which is why some may shy away from them,” said first author Dr. Zachary Grinspan, interim chief of child neurology and director of the pediatric epilepsy program at Weill Cornell Medicine and NewYork-Presbyterian Komansky Children’s Hospital. “But our research and other studies have shown that nonstandard therapies are ineffective for treating infantile spasms.” Click here to read the rest of the story.