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Parents' Experiences of Children with Autism Spectrum Disorder
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In this section, we will discuss Questions Concerning Autistic Spectrum Disorders that I present to parents who are in need of the basic information. The six basics I include are as follows: What is autism? Should an autistic child run wild? Is it genetic? Environmental factors; Is it something I did? and Is there a cure? As you read the rest of this section, evaluate whether playing this section might be beneficial to a parent or relative of an autistic child you are currently seeing.
Robert, age 27, and Meghan, age 25, had been married for 5 years and were parents to Trina, age 2. Trina had recently been diagnosed with an autistic spectrum disorder. Robert and Meghan came to me with questions. Their doctor had, of course, provided Robert and Meghan with general information about autism, but due to their overwhelming feelings regarding the diagnosis, they were unable to assimilate much of the information. Since the mental health center was adjacent to the hospital, Robert and Meghan were referred to me, on an outpatient referral.
6 Questions Concerning Autism
♦ #1 What is Autism?
Robert and Meghan’s first question, of course, was, "What exactly is autism?" Compare my response to Robert and Meghan to the one you give. I stated, "Autism is often explained as a disorder of the brain that causes impaired social interaction, problems with verbal and nonverbal communication, and unusual or severely limited activities and interests."
Meghan asked, "What is going on in Trina’s body that makes her behave the way she does?" I ask, "Would you like a technical explanation or a simple?" Robert and Meghan stated they would prefer hearing the technical side again. They had mentioned that the doctor spoke rather quickly. Compare my explanation to yours.
I responded, "Everyone’s brain contains a brain stem that receives sensory information. The brain also contains dendrites. Dendrites are the neurons through which the sensory information travels. These dendrites look like the top of a tree. The tree has a trunk, of course, which is the brain stem. Many branches reach out into the various sections of the brain. We call them ‘brain trees.’ Everyone has a brain tree."
♦ Brain Trees
I then found it helpful to explain what a brain tree is by stating, "The brain tree of a typical child will have many branches, and from these branches, ‘twigs’ that cover all the regions of the brain in just the correct position. The branches are very healthy-looking, and there are a lot of them. However, the brain tree of a child with autism is very different. Instead of strong, healthy limbs covered with twigs, the child with autism’s brain tree will have fewer branches, and the branches they do have are likely to be frail and spindly-looking."
Megan and Robert seemed to be interested and able to take in this amount of information so I followed up information about the brain tree with information about sections of the brain. "Each section of the brain manages certain aspects of the person’s everyday functions. One section manages what the person sees. Other sections manage what he hears, his speech, balance, movements, thoughts…etc. When a typical child’s brain receives sensory input, that information will go out to the proper branch of his brain tree and he will know exactly what to do.
However, sensory information entering the brain of a child with autism might not be able to reach its destination." I asked Robert and Meghan, "What if the branch of the brain tree that processes what Trina hears is cracked or broken? What do you think would happen inside Trina’s brain if a teacher, one day, said to her, ‘Trina, please go to your desk, pick up a pen and bring it to me’?"
Robert responded, "Maybe Trina would go to her desk and see the pen, but she wouldn’t know what to do with it." I stated, "Exactly. Trina would hear what the teacher said, but some of the teacher’s instructions would likely get lost or confused in Trina’s brain."
♦ #2 Should Trina Run Wild?
Meghan asked, as she anxiously glanced at her husband, Robert, "So, should we just let Trina run wild, and do whatever she wants!!?" How would you have answered Meghan’s question? I stated, "Not at all. As part of society, I can imagine you will want Trina to learn proper behaviors just like anyone else. Children with autism can and do learn.
However, Trina will probably learn best in consistent, predictable environments where her needs will be understood and where people are willing to learn and make accommodations for her differences. Other clients of mine who have had children with autism tell me that they maintain high expectations for their children and respect them, but they need to have a lot of patience with them as well."
♦ #3 Is it Genetic?
Robert asked, "Is autism genetic?" I stated, "I have read a few recent studies that strongly suggest that some people do have a genetic predisposition to autism. However, these are not yet proven."
♦ #4 Environmental Factors
Robert said, "I’ve heard that environmental factors can be related to autism in children. What exactly does that mean?" I stated to Robert, "Environmental factors relate to things that cause autism, or contribute to autistic-like symptoms after a child is born. Environmental causes include adverse reactions to vaccines, particularly mercury used as a preservative.
In some children, the mercury may build up in their systems and alter brain development. Also, some children may develop autistic-like symptoms as a result of food allergies or yeast buildup in their systems. Many environmental causes of autistic behaviors can be controlled with diet or through yeast or mercury reduction."
♦ #5 Is It Something I Did?
Meghan asked, tearfully, "Is it something I did!!?" How would you have answered Meghan’s question? I stated, "No! The only people who are fairly certain of a cause are parents whose children were clearly affected by a vaccine injury, or those whose children improve dramatically when given certain diet and therapeutic interventions."
♦ #6 Is there a Cure?
Robert asked, "So is there a cure for autism?" I stated, "There is no cure, and I would strongly caution you from spending money and time in pursuit of one. If you find a program that makes claims to cure Trina, do your homework before signing on. Insist on talking with other families who have participated in the program. Realize they are likely to give you names of only satisfied customers, so you must ask some hard questions. What sacrifices did they have to make to achieve results? Were the results long-lasting? Would they do it again?"
Robert and Meghan appeared to be satisfied with these explanations. I also provided them with some books I felt might be of assistance. I have found the book by Cohen, Autism: The Facts, listed in the bibliography of this course to be beneficial. However, the local public library has numerous books on this subject.
You probably have found, like I have, that often parents of young autistic children do not know the basic facts. You might consider playing this section for your client.
In this section, we discussed Questions Concerning Autism. These included What is autism? Should an autistic child run wild? Is it genetic? Environmental factors; Is it something I did? and Is there a cure?
In the next section, we will discuss Compensating for Lack of Language. This will include finding something worth trying for, modeling the words, getting them to talk on their own, keeping things social and interactive, turning requests into conversation and encouraging initiations.
Peer-Reviewed Journal Article References:
Kasari, C., Gulsrud, A., Paparella, T., Hellemann, G., & Berry, K. (2015). Randomized comparative efficacy study of parent-mediated interventions for toddlers with autism. Journal of Consulting and Clinical Psychology, 83(3), 554–563.
Strunk, J. A., Pickler, R., McCain, N. L., Ameringer, S., & Myers, B. J. (2014). Managing the health care needs of adolescents with autism spectrum disorder: The parents’ experience. Families, Systems, & Health, 32(3), 328–337.
Yi, H., Siu, Q. K. Y., Ngan, O. M. Y., & Chan, D. F. Y. (2020). Parents’ experiences of screening, diagnosis, and intervention for children with autism spectrum disorder. American Journal of Orthopsychiatry, 90(3), 297–311.
What is autism? To select and enter your answer go to .