Author: Lynn Vigo, MSW, LICSW

Parallel Paths: Our Life with Autism

Ten years ago, as a new employee in the department of Psychiatry and Behavioral Medicine, I was asked by a colleague to present with her to a group of trainees.

She was to cover diagnostic evaluations and I was tasked with discussing the impact of autism on families. How on earth would I manage to accurately capture the daily challenges that often are not observed in brief clinic visits?

My hope was to help them to “get it” meaning to see just how difficult it was.Short of suggesting we hold the session in my home for a first-hand look, I decided to make a video I called, “A Day in the Life with Autism” 24 minutes representing 24 hours in our unconventional life. It was well-received and since then I have been asked to share it with many different providers and students at Seattle Children’s and the University of Washington.

So much has changed in the past decade that it felt time for an update. This time though, I wanted to capture the bigger picture of our life and the lessons learned not only for providers but for parents who walk this path too.

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!

 

Mindful Monday – How Do You Know if You’re Being Mindful?

People sometimes ask me how to know whether they are being mindful or not. Good question! It might sound as easy as saying “if you are, you’ll know it” or “if you aren’t, you’ll know it” but I don’t think that’s always the case. Here’s my quick checklist to help you decide.

 

Do you often find yourself:

  • Thinking “I wish . . . ”, meaning you wish things were different than they are
  • “I wish I could lose 10 pounds.” or “I wish my life wasn’t so hard.” or “I wish I had a better job.”

 

  • Thinking about the past and what you might’ve done differently
  • “I should have studied something different in college.” or “I shouldn’t have wasted so much time on that project.”

 

  • Thinking about the future, with some degree of anxiety
  • “I have so much I need to do!” or “I’m worried this won’t turn out ok.”

 

  • Thinking judgmental thoughts of yourself and others
  • “Nothing looks good on me!” or “I can’t believe she wore that.”

 

  • On auto-pilot, going through the motions with reduced awareness of your experience
  • “I don’t even remember driving home.” or “I do that with my eyes closed!”

 

  • Characterizing life/your day in an “either-or” way, i.e.: all good or all bad.
  • “I had a horrible day!” or “My life is a hard one.”

 

If you answered yes to any of the above questions, you’re in good company! We live hectic lives in an increasingly complex world where information comes at us from more sources than ever before, all vying for our attention. It’s no surprise we’re not more present, more fully aware.

Mindful Monday-The Faces We Wear

Remember the line in the Beatles song, Eleanor Rigby, “wearing the face that she keeps in the jar by the door”?  I don’t know what Paul had in mind when he wrote that but it makes me think of the different faces we wear depending on the time of day, the people we’re with, and the environment we’re in.

Here’s a mindfulness exercise to help us notice what face we wear when, where and with whom. Pay attention to the face you present in the following situations. Make a mental note or jot down a note about each. You can even use emojis to help capture your face, For example, for those who aren’t early birds, your waking up face might be a grumpy face. If you feel stressed driving to work, a tense face might fit.

Waking up face:

Driving/commuting face:

Arriving at work face:

Arriving home face:

Greeting partner face:

Greeting kids face:

Going to bed face:

Now review your faces and decide if there are any that you want to change, particularly if you often wear that face and it reflects a not-so-happy you. We’re often unaware of the face we present to others. Here’s a chance to notice.

 

 

 

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.