CAC Corner: The stare

April 25, 2016 by Kelly Smith

Profile of adult maleThis month’s CAC Corner was written by CAC member Laura Anderson and originally posted on the Mother’s of Autistic Kids (Big MAKS) web site. Anderson is a member of the CPD Consumer Advisory Council, and mother of Ty, a child with autism. 

As a parent of a child with autism you become all to aware of “The Stare”.  Because many of our kids lack the visual cue that they have a disability ( a wheel chair, walker, distinguishable physical characteristic) the looks and stares can feel like a judgement or criticism.  The stares tend to come with the verbal outbursts,flapping, slapping clapping, hooting, screaming (you get the picture).  Many of these outward expressions of autism can be excused when the child is  younger, but the tables are turned when your son is 6’3″, 180 lbs, has facial hair and a deep bass voice.

We were the recipients of THE STARE Saturday night while being seated for dinner at Chili’s.  As we walked to our table, Ty (see the above description) sneezed directly over a mans plate.  *STARE*  We hurried to get seated so we could order the gentleman another dinner (yes, we replace many dinners that we take food from – and drinks that we put fingers in).  Before we could get Ty into the booth, the gentleman was up out of his seat heading for the manager.  My husband, Austin,  went after him to explain that we were going to replace his dinner and to offer our apologies, wanting  to let him know that Ty has autism, and has not learned the valuable skill of covering his mouth when he sneezes or coughs.

I watched from several seats away as these two men were engaged in their conversation, trying to catch a word of their exchange, hoping that Austin would stay calm.  I assumed we would be asked to leave after replacing the meal. 
The man turned away from Austin and walked toward our table…I was ready for the lecture…”You shouldn’t take your son out in public, you should teach him, you should…”  A conversation we have all heard too many times.

He approached the table and introduced himself as a Special Education Teacher from Ogden and insisted on buying us dessert.  He went on to explain his love for his job and the students he worked with, and how happy he was to see us out as a family. 
This man is my hero – and he can stare at us anytime he wants to.
Laura – Ty’s Mom

The CPD Consumer Advisory Council (CAC) composed of individuals with disabilities, family members, and staff liaisons advises the CPD director about the Center’s impact on systems change, advocacy, and capacity building. The CAC approves the CPD’s annual goals and regularly reviews progress towards their accomplishment.

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CAC Corner: Dedicated providers make a difference

July 5, 2012 by cpehrson

This CAC Corner blog was written by Consumer Advisory Council Family Representative Dena Marriott.

Head shot of Matthew Marriott


 The Center for Persons with Disabilities at Utah State University has been part of my son, Matthew’s and my life since his elementary school years.   Matthew started having seizures before he turned two and began having signs of Autism at four. 

Although we lived out of state at the time, I brought Matthew to Primary Children’s Medical Center in Salt Lake City, UT.  When we moved back to Logan, UT, Matthew was able to see his neurologist, Dr. Joel Thompson, when he came from Primary Children’s to the CPD for a clinic through the Utah Children with Special Health Care Needs.  It was such a blessing to have our appointments so close and I knew Matthew was getting the best care possible.

When it was time for Matthew’s post high education, I was thrilled to know that he would be attending the Peer Program at the CPD.  At the Peer Program, Matthew’s reading comprehension improved, along with his handwriting.   He learned money and shopping skills and worked toward taking the GED.   He got job training and had a job coach with him at his job sites.  These included U-Star, USU Bookstore, The Marketplace, Honks, and his last and favorite, The Museum of Anthropology (at USU), where he did data entry. 



Before transitioning out of the program, Matthew was hired to be an office assistant for Gordon Richins, Consumer Liaison at the CPD.  Every week Matthew looks forward to the day he gets to work with Gordon.

Someone once said that we never know all the people who have worked and sacrificed on our behalf.  I know this is the case at the Center for Persons with Disabilities.   Matthew and I are truly grateful!

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Consumer Advisory Council funds autism event

June 12, 2012 by cpehrson

This year, the Consumer Advisory Council introduced the Community Investment Fund to award money to one Utah  non-profit organization to improve the quality of life for children and adults with disabilities.

Out of 13 proposals, the non-profit awardee for 2012 was the Discovery Gateway Children’s Museum in downtown Salt Lake City. 

Partnering with the Autism Council of Utah, the museum will use the money to provide an Autism Day in June, exclusively for families of children with autism.  Special programming and support groups will be offered to parents and children during these events  and Discovery Gateway staff will be provided sensitivity training by the Autism Council staff.

Families of children with autism are invited to attend the Autism Day at the Children’s Museum on Friday, June 29th, from 9:00-11:00 a.m.

Discovery Gateway is currently seeking a private sponsor to ensure that Autism Day at the Children’s Museum can become a monthly event in the lives of the families of children with autism.

The CPD is proud to support events such as this, that help improve the lives of people with disabilities.


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When children with autism turn 22

April 10, 2012 by cpehrson

In recognition of April’s Autism Awareness Month, the Autism Council of Utah and its partners are hosting a public viewing of the film Autism: Coming of Age, on Wednesday, April 25, from 6:30 – 8:00 p.m. at the Carmen B. Pingree School for Children with Autism, 780 South Guardsman, Salt Lake City.

As young adults reach age 22, most families want to celebrate. But for families with an autistic child, a 22nd birthday can be a time of great stress.  That’s because some needed services may no longer be available to their child as they “age out” of the system. The one hour film “Autism: Coming of Age” explores the hopes, fears and challenges of parents raising children with autism.

 MassMutual is sponsoring this public television documentary film that provides an honest look at the future facing these families as their children become adults.  In this documentary you’ll see the day-to-day stories of three families and the impact of policies and court decisions. You’ll also hear from parents, advocates and experts who deal with legal issues and love ones.  Topics discussed in this film include:

– Independence
– Financial well-being
– Quality of life
– Employment
– Housing needs
– Education
– Health
– The child’s longevity

Autism Spectrum Disorders (ASD) are some of the most complex disabilities that families can face. This documentary is, in part, a follow-up to groundbreaking research from the December 2008 “Easter Seals Living with Autism” study, also co-sponsored by MassMutual, that examined the hopes, fears and challenges of parents raising children with autism. 

To find out other viewing places and times, go to the Utah Education Network web site.

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Autism on the rise–new data suggests

April 3, 2012 by cpehrson

The Centers for Disease Control and Prevention (CDC) has released new data this month that estimates that one in every 88 children (11.3 per 1,000)  in the U.S. has been identified with an autism spectrum disorder (ASD). 

The previous estimate was one in 110 children.  The latest figures were released on Thursday, March 29, 2012, and come from recent studies which used data from 2008 collected in 14 sites across the United States.  This new number means that autism affects roughly 1 million children.  According to Mark Roithmayr, president of Autism Speaks, autism is now “officially becoming an epidemic.”

Some feel that the rate increase can be attributed largely to a better recognition of autism through wider screening  and better diagnosis, but it is not clear  if we are seeing the result of better detection or a real surge in autism.

“One thing the data tells us with certainty–there are many children and families who need help,” states Dr. Thomas Frieden, CDC director.

Here at the Center for Persons with Disabilities, many efforts are directed towards autism: research in our Biomedical Laboratory; identification and diagnosis through our ASD Clinic; direct early intervention and preschool services; training through the URLEND and IOTI programs.

CDC’s National Center on Birth Defects and Developmental Disabilities has been tracking autism and other autism spectrum disorders (ASD) for over a decade. More children are  being diagnosed at earlier ages–a growing number by age 3, according to the CDC.   Still, most children are not diagnosed until after they reach age 4, even though early identification and intervention can help a child access services and learn new skills. This is why CDC’s Learn the Signs. Act Early. program is essential. Through this program, CDC provides free tools to help parents track their child’s development and free resources for doctors and educators.

The increasing incidence of autism highlights an urgency to address a critical need that individuals and families living with autism have– support and services.

Early screening and diagnosis can have a significant impact, leading to improved educational and social outcomes, employment and independent living. It becomes increasingly important that families know the signs of autism as early as possible,  receive appropriate services, and are provided the support they need. 

Please take this opportunity to look into the autism services that are available in your community and be ready to point someone you may know in the right direction.

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