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Resources for Parents and Families of Autistic Children – Supporting Parents and Families with an Autistic Child (pt. 2)

Part 2: Resources for Parents and Families of Autistic Children

The information for this article is taken from a qualitative research study and report by Stephanie Williamson. The research focused on the coping strategies of 12 different mothers who had between one and three children with autism. Mothers, who are often the main caretakers of their child with autism, usually experience high amounts of chronic stress, and are often obligated to learn a new and different way of life in raising a child with autism. Both parents coping with the diagnosis of Autism Spectrum Disorder (ASD) may struggle with the loss of previous expectations they had for their child’s future and the worries about how things will work out in planning for a possibly very different future. Many parents with a child who has autism find that their greatest support comes from activities with extended family, support from a spouse and other relatives, as well as understanding and helpful friends. Having professional resources through the school, community, and private programs also make a big difference.

What do Parents of Autistic Children Find Helpful from Others?

  • Life as a parent of a child with autism is often extremely hectic, unpredictable, and without breaks. Parents caring for an autistic child appreciate hands-on help. Offering to trade babysitting or watching their other children so they can take their child with autism to therapy are great ways to lend a hand.
  • Avoid offering unsolicited advice about what remedies they should try; instead, offer a listening ear. Parents may not have time to cope with more ideas at once than the ones they are already trying.
  • Get to know the child with autism. Behind the disorder, they are an individual who you will likely come to love and enjoy.
  • Be understanding. Parenting a child with autism requires parents to sometimes do things that may not be understood by others. A child with autism may not understand about staying safe and not running into the street, may have difficulty controlling bodily functions, and will not understand what is socially acceptable. They can act impulsively and do things that endanger themselves. Others in the community can avoid being judgmental of a family dealing with these behaviors, and realize that they are not caused by a lack of appropriate parenting.  

Resources for Parents

Mothers who participated in the aforementioned study, emphasized that receiving a diagnosis of autism can be a lengthy process, but it is essential to have in order to begin getting help. One mother said, “Get the diagnosis. Do whatever you have to do to fight it… Because once you have that, the doors open… the diagnosis I think has helped us the most.”

The available community resources for children with autism may vary between different locations in the United States. Additionally, many therapy and support programs can be found through a child’s school.

More than likely, a parent with a child with ASD wouldn’t even have time to read all this information! But you can pass on the message by offering a helping hand for children with a unique and special life.


References

Autism Society (2016) What is autism. Retrieved from: http://www.autism-society.org/what-is/causes/

Autism Speaks Inc. (Apr. 26, 2017). Autism and health: a special report by autism speaks. Retrieved from: https://www.autismspeaks.org/science/science-news/autism-and-health-special-report-autism-speaks

Williamson, S.A, (2009) Approaching autism: a qualitative review of maternal and familial adaptation among families of children with autism. In All Theses and Dissertations. Retrieved from: http://scholarsarchive.byu.edu/cgi/viewcontent.cgi?article=2872&context=etd

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What is Autism – Supporting Parents and Families with an Autistic Child (pt. 1)

Autism, or Autism Spectrum Disorder (ASD), is a developmental disability that effects millions of children and their families. Many of us are familiar with autism from children that we knew growing up, neighbors and relatives, or from characters in movies, books, or TV. Families that have a child with autism know that there is often a lack of understanding from others on what autism really is. The experience of having a child with autism is usually a huge source or stress to parents and siblings in the child’s family. The purpose of this collection of articles (parts one and two) is to share some useful information about autism, raise awareness of how to support parents and families who have a child with autism, and to share some helpful resources to these parents.

Part One: What is Autism?

In 2016, the Center for Disease Control (CDC) issued the newest report, showing that the rate for children with autism in the United States is 1 child in every 68 births. Boys are 4 ½ times more likely to have autism than girls. Children with autism grow, learn, and have individual interests like other children, but they think in a different way. Some are “high functioning” and may have regular or high intelligence, but lack the ability to communicate, understand social cues, and express themselves like other people. Others are lower functioning and exhibit delays in intelligence. The CDC estimates that a third of children with autism also have an intellectual disability, based on available data.

Autism is referred to as a “spectrum disorder”, because autism affects individual children in a wide variety of ways and different levels of severity. One child with autism may display very different behaviors and symptoms from another child. Many children with ASD have very focused interests and may “obsess” over a certain activity or topic. They can be very friendly and loving, or they may not show any interest in interacting with people at all. Individuals with ASD often have a hard time understanding sarcasm. The symptoms of autism are usually apparent before the age of three. The earlier autism is diagnosed, the more a child can benefit from early intervention and treatment. Some early signs of autism in a young child are:

  • Significantly delayed speech, or a loss of speech skills that were previously developed.
  • Lack of interest in social relationships, difficulty with social interaction, lack of eye contact.
  • Self-stimulatory behavior or repetitive behaviors, such as rocking back and forth or walking in circles.
  • Increase in tantrums, discomfort with sensory processing- extra sensitivity to sight, sound, and smells.

For a guide to typical developmental milestones for infants and young children, visit https://www.cdc.gov/ncbddd/actearly/milestones/index.html.

Diagnosis of autism should be thoroughly completed by a medical team if there is a suspicion that autism is present. A delay in a certain area of development does not necessarily mean a child has autism, rather several screening tests are used to determine diagnosis.

Children with autism are more likely to also suffer from other health problems such as: sleep irregularity, anxiety, epilepsy, difficulty with eating, ADHD, depression, and gastrointestinal problems.

There is no known single cause for why autism occurs. Research is being done investigating the genetics, environmental substances, problems during pregnancy, and other possible factors behind autism. Brain scans show that there are abnormalities in the brains of children with autism that are not present in normal brains.

Because autism is so varied for different children and families, finding the right treatment for an individual child is varied as well. Children with autism can grow and enjoy life and become contributing, unique members of society, especially when they receive the right help. Early intervention, community support programs, and speech and occupational therapy are common therapy providers. School-age children with autism usually receive an Individual Education Plan (IEP) to set goals for their developmental needs, and may participate in regular classrooms with special supports or in a special education classroom. There are special private schools, which are specific for children with autism, as well.

See Part 2 of this article for guidelines in helping parents with children with autism and finding resources for support.


References

Autism Society (2016) What is autism. Retrieved from:http: //www.autism-society.org/what-is/causes/

Autism Speaks Inc. (Apr. 26, 2017). Autism and health: a special report by autism speaks. Retrieved from: https://www.autismspeaks.org/science/science-news/autism-and-health-special-report-autism-speaks

Centers for Disease Control and Prevention (Dec. 5, 2016). Autism Spectrum Disorder (ASD). Retrieved from: https://www.cdc.gov/ncbddd/autism/addm.html

Williamson, S.A, (2009) Approaching autism: a qualitative review of maternal and familial adaptation among families of children with autism. In All Theses and Dissertations. Retrieved from: http://scholarsarchive.byu.edu/cgi/viewcontent.cgi?article=2872&context=etd

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Positive and Negative Reinforcement

 

When it comes to children, teaching them behaviors that they need to repeat and not repeat is never an easy task.

But what makes decisions on parenting a lot easier is understanding the benefits of encouraging or discouraging certain behaviors. Both positive and negative reinforcements are used for all age categories and levels of mental activity.  All of us can profit from reinforcement but especially developing children, teenagers, elderly, and those with psychological or developmental issues. They are all in need of positive and negative reinforcement to help accomplish certain tasks or milestones.

Borrowed from “Teaching Your Children Through Positive Parenting”

Positive reinforcement is defined by dictionary.com as “the offering of desirable effects or consequences for a behavior with the intention of increasing the chance of that behavior being repeated in the future.” Research on parenting consistently shows that positive reinforcement tends to be very beneficial to the development of positive behaviors and habits. So what are some examples of positive reinforcement?

  • Giving a child a compliment or candy for a job well done.
  • Getting paid for a completed task.
  • Watching your favorite TV show after doing all your homework.
  • Giving a dolphin a fish for doing a trick.
  • Awarding your dog a treat for sitting, laying, rolling over.
  • Getting a candy bar after putting money in the machine.

Now, negative reinforcement isn’t always a bad thing.  However, when used in an extreme manner, it can produce undesired behaviors. Negative reinforcement is defined as “the reinforcing of a response by giving an aversive stimulus when the response is not made and omitting the aversive stimulus when the response is made.”  The definition is a mouthful and alone doesn’t tell us exactly how this reinforcement is carried out, so here are a few examples of negative reinforcement used in a good way.

  • You say, “Thank you for helping me clean! I can finish now.” In the future, your child is more likely to clean because it wasn’t as difficult of a task as they thought.
  • Your child refuses to do their homework so you continue to ask them repeatedly to do it. They eventually do it so you will stop asking.
  • If you tell your child to take 3 more bites or they won’t get dessert, in the future they will know they can get dessert after only taking 3 bites.
  • Your child refuses to go to sleep, so you tell them he doesn’t have to wash the dishes the next day if he goes to bed on time. You are taking away something they hate in order to encourage going to bed on time.

As you can see, both positive and negative reinforcements can be used and produce both positive and negative behaviors. Parents generally tend to focus on the negative behaviors because they are more disruptive and sometimes unacceptable, especially in calm home or outside settings. As a parent, you are able to make the decision on how to use positive or negative reinforcement to help your child grow and develop.

As a final thought, The National Physicians Center gives this admonition,

“Please remember–if your children demonstrate negative behaviors, always give them opportunities to change that behavior–never leave them feeling hopeless.”

Click to to view the Physicians Center’s newsletter on positive and negative reinforcements and below are resources to help you better help each of your children through each phase of their life.


Resources:

Baron, A., & Galizio, M. (2006). The Distinction Between Positive and Negative Reinforcement: Use With Care. The Behavior Analyst29(1), 141–151.

Lapham, P. (2014). Consequences. [Blog] Teaching Your Children Through Positive Parenting. Available at: http://teachingwithpositiveparenting.blogspot.com/2014/03/consequences.html [Accessed 24 Jul. 2017].

Whittle S, Simmon JG, et al.  Positive parenting predicts the development of adolescent brain structure:  A longitudinal study.  Develop Cognitive Neuroscience.  2014; 8: 7 – 17

The National Physicians Center, Prescriptions for Parents: Making Scientific Research Practical for Families, Encouraging positive behaviors in children and adolescents. http://us11.campaign-archive1.com/?u=1fe8e9161b799d50e2vvfd6c74f&id=65bf59560a

http://www.dictionary.com/browse/negative-reinforcement?s=t

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