General

All Articles in the Category ‘General’

Savvy Mom Moves Science Forward: ADNP and Autism

Parents of kids with autism typically are told that we do not know the cause of it. For some, we eventually do and often it is at the insistence of parents that we figure it out.

Sandra Sermone knew there was “something” with her son and persisted in finding clues and then answers to what “it” is – a rare genetic condition that underlies his autism diagnosis. Taking matters into her own hands, she found a researcher in Israel to help and formed a group of fellow parents whose children have this condition. From there, she began to look for common denominators amongst their children. To read more of Sandra’s incredible efforts, check out these links to her scientific paper and a news story on her family:

NCBI :Premature primary tooth eruption in cognitive/motor-delayed ADNP-mutated children

NCBI:The Compassionate Side of Neuroscience: Tony Sermone’s Undiagnosed Genetic Journey–ADNP Mutation.

Local mom helping change the way doctors look at rare genetic syndrome linked to autism

Here’s to you, Sandra, scientist-mom extraordinaire!

 

Seattle Children’s Celebrates Autism Awareness Month

April 2nd is World Autism Awareness Day

Seattle Children’s Autism Center, Alyssa Burnett Adult Life Center, and Seattle Children’s Autism Center Research team are lighting it up blue to celebrate!

 

 

 

 

 

 

Free Autism 101 class this Thursday

Please join us this Thursday, January 26, from 7 to 8:30 p.m. at Seattle Children’s Hospital for our free quarterly lecture, Autism 101. Autism 101 is intended for parents and families of children recently diagnosed with an autism spectrum disorder (ASD). In this free lecture, participants will learn about:

  • Up-to-date, evidence-based information regarding the core deficits of ASD
  • Variability and presentation of behaviors associated with autism
  • Prevalence and etiology (study of the cause of the disorder)
  • Treatments available
  • Resources for families

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Autism Spectrum Disorder (ASD) and Employment

employment-signHighlights from Beautiful Minds Wasted, The Economist

Thanks to my colleague, Jennifer Mannheim, ARNP , for passing along a recent article on autism and employment (The Economist, April 16, 2016 Beautiful Minds Wasted). As more and more children with autism become young adults, it offers a look at what happens after educational services end.

This article provides a global glimpse at the state of employment for those on the spectrum and is chock-full of sobering statistics:

  • In 1970, 1 in 14, 000 children in the US were diagnosed with an ASD.
  • In 2016, 1 in 68 children in the US were diagnosed with an ASD.
  • In France, 90% of children with an ASD attend primary school but only 1% makes it to high school.
  • In the US, less than 50% of students with an ASD graduate from high school.
  • In the UK, 60% of teachers said they were unprepared to teach children with an ASD.
  • In the UK, 12% of adults with HFA are employed and 2% of adults with “more challenging forms of ASD”.
  • Globally, per the UN, 80% of adults on the spectrum are unemployed.
  • In the US, 19% of adults with an ASD in their early 20s live independently away from their parents.
  • 1 in 4 adults with an ASD report feeling isolated (have not seen friends or received a social invitation in the past year).

The article identified some of the employment challenges for those on the spectrum, including difficulty with the social aspects of the interview process, the often over stimulating work environment and adapting to changes in schedules and routines. On the other hand, strengths of some on the spectrum include intense focus and an eye for detail, enjoyment of repetitive tasks, dependability in following rules and routines.

Also mentioned were employers throughout the world who have made efforts to assist employees with an ASD to be successful including Specialisterne, A Danish firm that offers training and help finding jobs, Kaien in Japan, AQA in Israel, Passwerk in Belgium, and Walgreens in the US.

The Economist cites lifetime cost of unemployment associated with an ASD (lifelong care, lack of output by such individuals and un/under employment by families who care for those who do not work) is cited as between 1.4-2.4 million dollars.

Depressing? Yes. Surprising? No. The world is still not capably or comprehensively providing services and supports for children with an ASD and their families. It is only beginning to see the massive wave of children now coming of age into adulthood. Our kids are not ready for the real world and the real world is not ready for them.

 

Spirit of Participation: Arthur’s Story

Thanks to our own Katrina Davis for sharing her story of hope, inspired by autism research.  

Watch Arthur’s video here: Arthur’s Story