Autism

April is Autism Awareness Month

The increasing rate of autism should be everyone’s concern, not just those who have a family member with the diagnosis. At the present rate, 1 in every 59 children is diagnosed with autism. There is a spectrum according to the severity: those on the high end of the spectrum are able to function independently while those on the lower end require constant care and supervision. Any child could receive the diagnosis regardless of socioeconomic class, color, or religion. Anyone who feels it is not “their problem” may one day be in for a big surprise—if that person does not have a child with autism, then a sibling’s child, a niece or nephew’s child, or a grandchild could have this developmental disorder. Therefore, autism should be everyone’s concern.

National Autism Awareness month concept with puzzle or jigsaw pattern on heart with autistic child’s hands supported by nursing family caregiver

The following is a list of questions people may have. I will try to answer them as clearly and succinctly as possible.

Q. What is autism?                                                                                                      According to the website Autism Speaks (https://www.autismspeaks.org/what-autism), “Autism, or autism spectrum disorder (ASD), refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech, and nonverbal communication.” As every individual is unique, autism affects each person differently.

Q. What are some telltale signs of autism?                                                                                                                      Signs include

  • Repetitive behaviors like hand flapping, rocking, jumping
  • Inability to make eye contact
  • Speech difficulties
  • Repetition of words (echolalia)
  • Inability to participate in social interaction
  • Sensitivity to sounds, smells, and tastes
  • Trouble understanding the feelings of others
  • Agitation with schedule changes
  • Unusual mood patterns, sleep difficulties
  • Hyperactivity
  • Fixation on particular topics
  • Limited attention span

In my novel True Mercy, one of the main characters is an eighteen-year-old man with autism named Adam. I include many characteristics of autism in my portrayal of Adam like hand lapping, rocking, echolalia, sensitivity to smells, unusual mood patterns, and fixations on certain topics.

Q. When do signs of autism appear in children?

According to Autism Speaks, signs of autism may occur from the first few months of life to as late as 2 or 3 years old.

HelpGuide (https://www.helpguide.org/articles/autism-learning-disabilities/does-my-child-have-autism.htm/ ) has compiled a list of early signs of autism:

The baby or toddler doesn’t:

  • Make eye contact, such as looking at you when being fed or smiling when being smiled at
  • Respond to his or her name, or to the sound of a familiar voice
  • Follow objects visually or follow your gesture when you point things out
  • Point or wave goodbye, or use other gestures to communicate
  • Make noises to get your attention
  • Initiate or respond to cuddling or reach out to be picked up
  • Imitate your movements and facial expressions
  • Play with other people or share interest and enjoyment
  • Notice or care if you hurt yourself or experience discomfort

Q. What can parents do if they notice these signs?

If a parent notices their child has developmental delays, it is vital they seek the advice of their child’s pediatrician to find out if testing is needed. The earlier the diagnosis, the sooner the child can receive early intervention, which is critical for the child to make gains in their development. Applied Behavior Analysis (ABA) is the therapy that has proven to help children with autism make significant improvements.

Q. What are some resources to get help?

I gathered some resources but this list is by no means exhaustive.

Autism Bedforshire http://www.autismbedfordshire.net

Autism Speaks http://www.autismspeaks.org

Autism Society http://www.autism-society.org

Autism Web http://www.autismweb.com

Autism Hwy http://www.autismhwy.com

HelpGuide  https://www.helpguide.org/home-pages/autism.htm

Addendum:

I had intended to conclude my blog post at his point, but when Amy Tobik of Autism Parenting Magazine (https://www.autismparentingmagazine.com/supportive-states-raising-autism-child/?utm_source=Autism+Parenting+Magazine+Contributors&utm_campaign=71fe1ce660-EMAIL_CAMPAIGN_2018_06_18_01_56_COPY_01&utm_medium=email&utm_term=0_782e0cc91d-71fe1ce660-96778409 ) sent me this article by Krystal Rogers-Nelson, I couldn’t resist including it. She provided a list in the order of the most supportive states for raising a child with autism.

The three main factors considered for these rankings include:

  1. State laws requiring insurance coverage of ABA therapy (points were weighted based on age limit, coverage limit, and types of insurers required to provide services)
  2. If a state is part of the ADDM Network (Autism and Developmental Disabilities Monitoring Network, which estimates the number of children living with autism and other developmental disabilities in various places in the United States).
  3. Grants available to individuals and families in the specified state
Rank State Age Limit? Coverage Limit? ABA Therapy Requirement for ALL Insurers in State ADDM Network Grants Available
1 California No No** Yes No Yes*
2 Massachusetts No No Yes No Yes*
3 Indiana No No Yes No Yes
4 Colorado No No Yes Yes No
5 Vermont 21 No** Yes No Yes*
6 Maryland 19 No Yes Yes Yes*
7 New Jersey 21 No No Yes Yes*
8 Washington No No Yes No No
9 New Hampshire 21 Varies based on age No No Yes*
10 New York No $45K Yes No Yes*
11 Oregon No*** No No No No
12 Connecticut 15 No No No Yes*
13 Maine 21 $36K Yes No Yes*
14 Pennsylvania 21 $36K Yes No Yes*
15 Mississippi 8 No Yes No No
16 North Dakota 21 No No No No
17 Ohio 21 No No No No
18 DC No limited to cost of similar therapy No No Yes
19 Wisconsin 9 $50K No Yes Yes*
20 Delaware 21 $36K Yes No Yes
21 Arkansas 18 $50K Yes Yes No
22 Minnesota 18 No No No No
23 Nebraska 20 No No No No
24 Utah 10 No No No No
25 Wyoming 20 No No No No
26 Illinois 21 $44,877 Yes No No
27 Florida No $36K, $200K lifetime Yes No No
28 Georgia 6 $30K No Yes Yes
29 Rhode Island 15 $32K No No Yes*
30 South Carolina 16 $50K Yes No No
31 Virginia 10 $35K No No Yes*
32 Kentucky 21 $50K No No No
33 Kansas 12 limits based on hours Yes No No
34 Michigan 18 varies based on age Yes No No
35 Oklahoma 9 $25K Yes No No
36 South Dakota 18 varies based on age Yes No No
37 Texas 9 varies based on insurance plan Yes No No
38 Alaska 21 varies based on insurance plan No No No
39 Iowa 21 $36K No No No
40 Louisiana 21 $36K No No No
41 Arizona 16 varies based on age No Yes No
42 Missouri 18 $40K No Yes No
43 Nevada 18 $72K No No No
44 North Carolina 18 $40K No Yes No
45 Tennessee 12 varies based on insurance plan No Yes No
46 Alabama 9 $36K No No No
47 Hawaii 13 $25K No No No
48 Montana 18 varies based on age No No No
49 West Virginia 18 $30K No No No
50 New Mexico 19 $36K, $200K lifetime No No No
51 Idaho n/a n/a No Law Requirement No No

Multiple grants available for this state.
**Can’t exceed the cost of treatment allowed under the Affordable Care Act (ACA).
***Must start treatment before age 9.

Idelle Kursman is the author of True Mercy, a thriller designed to bring awareness to two issues: families coping with a loved one with autism and the human trafficking crisis. True Mercy is for sale on Amazon, Barnes & Noble, IngramSpark, and Smashwords.

Need help with blog content? Please contact me through my website, www.idellekursman.com.

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When Children with Autism Become Adults

 

                                                                               Photo by Nathan Anderson

The Autism Population is increasing and the children are becoming adults. They need work and programs.

In my novel True Mercy, one of the main characters is Adam Hitchens, a young man with autism who does simple, repetitive clerical tasks at a local business. He has a place to go every day and is proud to hold a job. I recently read the article “500,000 Teens with ASD are Headed to Adulthood. Where will They Work?” By Suzanne Garofalo. It appeared in the Houston Chronicle and was reprinted in the disabilityscoop (https://www.disabilityscoop.com/2018/11/16/500000-teens-asd-work/25736/. The article contains many examples of young adults on the autism spectrum who have been able to find satisfying employment and now feel productive and have a sense of purpose. Many employers are realizing it is well worth their while to train and keep these employees, finding many of them to be dedicated and hardworking. Garofalo writes that “Research shows job activities that encourage independence to reduce symptoms and increase daily living skills.” Some businesses even qualify for a tax write-off for participating in programs to employ these individuals. While this is certainly encouraging and a reason to celebrate, Garofalo also points out that “nearly half of 25-year-olds with the disorder have never held a paying job, according to Autism Speaks.” All people by nature need a schedule, a program with activities, or work in order to thrive. Parents are finding that as their special needs children get older, it becomes harder to find programs and resources. Many programs have waiting lists.

It is my hope that more opportunities for this population increase throughout the country. With the rate of autism now 1 in every 59 births in the United States, “It is a population that’s exploding but finds few opportunities.”

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Austin, Minnesota: An Autism-Friendly Town

 

The Famous Hormel Historic Home

In my novel True Mercy, Bruce often had to worry about his son Adam’s behavior in social settings. But if the story took place in Austin, Minnesota, he would have had much less to worry about. That’s because Austin is an autism-friendly town. Ten years ago, the community used their resources to educate local business owners about autism and train them to be aware of these customers’ needs. The town even has a community autism resource specialist. Therefore, Austin’s residents are probably more aware than most about the signs of autism that my story’s character Adam displayed: intense fixation on specific topics, unusual body movements like hands flapping, echolalia (word repetition), and meltdowns caused by feeling overwhelmed.

So how did the small town of Austin make itself autism-friendly? Just go in the Hormel Historic Home, a nonprofit museum dedicated to all things Spam, the canned meat that has been produced by Hormel Foods there for 81 years. Mary Barinka works there. She once worked as a Hormel marketing executive and is now the town’s autism resource specialist as well as a museum employee. Barinka has a sixteen-year-old daughter with autism. Along with working at the museum, she handles questions and requests from parents that can range from how to give a presentation to new business owners and their employees on becoming autism-friendly, where to find a good speech therapist, and how to help a local community college launch a special autism program.

You may wonder what business owners must do to make their establishments autism-friendly. Often individuals with autism react negatively to overstimulation, so these changes can include dimming the store’s lights, lowering the music volume, and training employees to speak slowly and in short phrases, and to be prepared to have more patience than usual.

The program began when retired Hormel executive and family friend Gary Ray asked Barinka if her then six-year-old daughter was able to participate in summer camp. Barinka told him she and her husband would like her to attend camp but it was not possible because they would need the camp to understand their daughter’s special needs and they would have to hire a helper. Ray and his wife then offered a donation for Barinka to start a camp. She jumped on it. The Ray’s have since donated over $100,000 to fund more programs such as a monthly respite night with children’s activities to give parents and caregivers a break, a peer program at the high school where student volunteers to spend time with another high schooler with autism one-on-one, day camps, and of course, the museum.

Hearing about the town’s programs, new families have moved in. Barinka also gets calls for advice from other towns who would like to set up their own autism-friendly programs.

Perhaps someday I will be able to visit Austin, Minnesota. I am sure my fictional character Adam and real-life individuals with autism would thrive in this town.

Information for this post came from The Washington Post article “The town that gave the world Spam is proud to be ‘autism-friendly’ by Amy Ellis Nutt.

True Mercy can be purchased on Amazon, IngramSpark, and Smashwords.

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