AofA Presents A Paper by 16 Year Old Autism Sibling: The Perplexing Epidemic
We are pleased to share this post. Below is a paper written for Psychology class by Cassidy Chapman, daughter of Alison Chapman, whom many of you know as a fierce advocate for her son and all of our children with autism. Cassidy is 16 years of age and a member of the SUPER SIBS generation - who will change the world for our kids as we parents grow older. Thank you, Cassidy.
By Cassidy Chapman
One of the most mysterious and perplexing epidemics in the world is autism. Autism is also known as ASD which stands for autism spectrum disorder. When children with autism are little there is a chance for finding treatments that can be successful but once these children grow up to a certain age there is a very little chance of recovery. Autism over the years has taken over society and is slowly creeping through the population and is an epidemic that needs to be declared a public issue. From 1990 to 2006 the population has grown 13 percent while the number of people with autism went up 175 percent. 7 This number has risen tremendously since 2006 and will keep rising till we inform people that there is a problem and it needs to be addressed now because 1 in 68 children have autism. 4 This process of discovering new things about autism however is extremely hard because no person with autism is the same, they all are different in terms of causes, treatments and severity. Autism is a broad systemic and pervasive disorder and many people are unaware of the specifics. The community should be aware of the impact of autism on the adult brain, and the thoughts of adults with autism.
When doing experiments there a few things that need to be controlled so that the results are accurate. Testing adults with autism is very hard because of the different severities. Adults with autism who are severe are hard to test on because using a MRI machine with these adults. Either they don't understand that they need to stand still or it seems impossible for them to withstand the system overload it causes them. Resulting from these obstacles they must be sedated to keep still which means that the tests aren't going to be as accurate. Even with these difficulties doctors have been able to collect valuable information to help further learn more about this puzzling disorder. Researchers took 38 men with autism who had speech delay and another 42 men who did not have speech delay. The scientists found that some parts of the brain were smaller in the men who had speech delay. The parts of the brain that were smaller were the brain’s ventral basal ganglia and the insula and temporal lobe of the cerebral cortex. These parts regulate regular speech, behavioral responses, higher thinking, and perceptions. They also found that the brainstem was larger which is how we send signals from our body to the brain and vice versa and controls the involuntary movements to keep us alive, such as breathing and heartbeat.8
In another study they looked at adults with autism brain as opposed to a healthy brain. They found that volume of white and grey matter were different than the normal neuroanatomy. The researchers looked at the white matter and found that it had spatially distributed reductions in the adults with autism. In the ASD patients they found considerable increased grey matter in some parts of the brain and large reductions in others. The parts of the brain that had increased grey matter were the anterior temporal and dorsolateral prefrontal regions. The parts of the brain that had decreased grey matter were the in the occipital and medial parietal regions. What also showed differences was not only the differences between ASD patients and the controls but differences between the severity of the autism. This difference just showed that the more severe the more the certain regions increased or decreased white or grey matter. With this information we can observe a way to prevent the brain from developing this way before growth is finished.10
The big discoveries about these brains don't just come from learning about the differences in brain regions but of some of the chemicals that assist the brain. The glutamate neurotransmitter which is also known as AGCworks in the neurons that are responsible for learning and memory. This is essential information to learning about autism because when there brain is already developed as an adult it is hard to tell how to proceed with more improvements. Adults with autism have a hard time processing and connecting memories and this could be a reason why. Ca+2 which is calcium with a charge of positive two and this calcium is shown in the brain to release the glutamate transmitter. In this study adults with autism they had excessive Ca+2 resulting in the excessive exchange of the glutamate neurotransmitter. Which could lead to learning more about the learning process for some autistic adults and how a to use that information to create a program which can bring achievements in their progress further. 1
Moreover inflammation in the brain is a huge part of understanding what happens with adults with autism. Researchers know this as well and thats why they created a studies to learn more. In one study scientists looked at the brain to see what are the reasons that inflammation occurs. Looking at the different cells in the brain they saw something standed out in the autistic brain. In individuals with autism they found that the microglial cells were dysfunctional. The microglial are the fighters of the brain and block out any pathogens or threats. Microglial cells are a type of glial cells which is one of the most abundant type of cell in the brain. In these patients the microglial cells were constantly active when they are only supposed to be at times only when it identifies a threat. Since the cells are constantly activated they are responding to threats. One of the responses for the microglial cells is to create inflammation. 2 This inflammation can create a blood barrier so that the pathogens don't get to the most essential parts of the brain. This can also cause problems because the response is constantly turned on which can cause decreased function in the hippocampus. These adults with autism have brains that seem as if they have experienced brain trauma. There is a connection between autism and brain traumas which is intriguing because there could be a possibility that autism can be treated like a brain trauma.9
When conducting research it is expected that the patient can say what is wrong and what is needed but with autism this can be difficult. Medical discoveries are much easier when the patient can explain in depth what the symptoms are but lots of autistic patients are completely or partially nonverbal. Research for autism is hard because it is as if going to a dark room and told to find the exit. Not only is it important for people to be able to know what these adults are thinking for medical purposes but in general to see how they are feeling. It is a mystery why these adults are so sensitive to sensory and is always dealt with in an extreme manner. Some adults need constant pressure while other are completely repulsed by the feeling of touch. The question is why do they feel so strongly about touch? Temple Grandin brings tremendous insight on what kind of thoughts that were going through her brain. She was apart of a few kids who moved up the spectrum and conquered the obstacles of communication and now she uses her accomplishments to teach others about autism. Temple brings some great information about why sensory is such a key part in an everyday adult life with autism. Temple Grandin explained this struggle in her book named Emergence Labeled Autistic. She said,
“Tactile simulation for me and many autistic children is a no-win situation. Our bodies cry out for human contact but when contact is made, we withdraw in pain and confusion. It wasn't until I was in my mid-twenties that I could shake hands. But as a child, since I had no magical, comfort device, I wrapped myself in a blanket or got under sofa cushions to satisfy my desire for tactile stimulation. At night I tucked in the sheets and blankets tightly and then slid in under them. Sometimes I wore cardboard posters like sandwiches because I liked the pressure of the boards against my body.5 ”
In this case Temple truly identified the struggle with tactile sensory needs and how it made her feel and explained it in a general sense as well. When Temple started to tell her story more studies came out. Because of Temple’s explanation scientists could find some scientific reasons. To be more specific tactile sensory is also known as touch. In studies they have shown that autistic individuals have hyper or hypo response to touch and what has been found is that there is a disfunction called tactile stimulation. Tactile stimulation is defined as the central nervous system inefficiently processing what it is received from skin. This dysfunction can cause many issues that can come up in body awareness, fine motor skills, social interaction, education, sensitivity to temperature, etc. The progress of this information is very much thanks to the experience Temple has and is why we need to educate people through her wisdom. 3
Another symptom of sensory dysfunction can often come in the form of stimming. Stimming is also known as self stimulatory behavior which is the repetition of an unusual sound or movement. Self-stimulatory behavior is extremely common in the autism spectrum disorder. Examples of stimming are finger tapping, hand flapping, jumping, rocking body back and forth, arching back while sitting, looking at something spin, etc. People on the spectrum do this because they are under sensitive or hypersensitive to environmental stimuli.4 The book The Reason I Jump was witten by Naoki Higashida who also has ASD. He is very nonverbal but can communicate through his writing. Because Naoki is some what severe he is able to give lots of great insight on what it is like day to day. In his book he was asked questions and answered them thoroughly. Naoki was asked what is the reason you jump? He answered, “when I’m jumping, its as if my feelings are going upward to the sky. Really, my urge to be swallowed up by the sky is enough to make my heart quiver. When I'm jumping, I can feel my body parts really well, too my bounding legs and my clapping hands-and that makes me feel so good. so thats one reason why I jump, and recently I’ve noticed another reason. People with autism react physically to feelings of happiness and sadness. so when something affects me emotionally, my body seizes up as if struck by lightning. “Siezeing up” doesn't mean that my muscles literally get stiff and immobile but-rather, it means that I’m not free to move the way I want.6 ”
Naoki really paints a picture of why jumping is a need for him and extends our knowledge on stimming. People are always wondering why that kid on the street is making that high pitched noise or flapping his hands and this could give people some more answers. Having answers to why adults with ASD stimm could help the community be more compassionate.
There has not been a lot of information about the autistic brain and the specific part of the brain that makes speech dysfunctional. They have a few hypothesis that still need to be tested. Temple Grandin did say something that was incredible to relate to and to comprehend what she was saying. She said, “I can remember the frustration of not being able to talk. I knew what I wanted to say, but I could not get the words out, so I would just scream.” I think her words are incredible to expressing how it really feels too be nonverbal. The struggle of having the burden of not being able to say what you are thinking, and the community should recognize this to aid these adults with autism.5
The world is a scary place without all the difficulties that adults on the spectrum have to face each day. This is why the information about autism needs to go out and be understood by the community. If the community is more knowledgeable and understanding the future for adults on the spectrum could be brighter. Once this is established we can ask the hard questions. How do we treat autism? Will treatments have to be individualized? How do we prevent it? Why is autism taking up a large part of our population? The main question each member of our society should ask is how can I help?
Cassidy Chapman is a Junior in High School who lives in Massachusetts. She has 2 younger siblings Olivia and CJ. CJ is 15 years old and has regressive autism.
Works Cited
1)Nature.com. Nature Publishing Group. Web. 14 Mar. 2015. <http://www.nature.com/mp/journal/v15/n1/full/mp200863a.html>.
2)Medical News Today. MediLexicon International. Web. 16 Mar. 2015. <http://www.medicalnewstoday.com/articles/286870.php>.
3)"Autistic Recreation: Tactile Stimulation."Autistic Recreation. 12 Sept. 2009. Web. 16 Mar. 2015. <http://autisticrecreation.com/autistic-recreation-tactile-stimulation/>.
4)"Facts About ASD." Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, 12 Nov. 2014. Web. 11 Feb. 2015. <http://www.cdc.gov/ncbddd/autism/facts.html>.
5)Grandin, Temple, and Margaret Scariano.Emergence: Labeled Autistic. New York: Warner, 1996. Print.
6)Higashida, Naoki. The Reason I Jump. Print.
7)"How Many Kids Have Autism?" WSJ. Web. 12 Mar. 2015. <http://www.wsj.com/articles/SB116481159830835726>.
8)"Language Delay Leaves Signature in Brains of Adults with Autism." Autism Speaks. Web. 14 Mar. 2015. <https://www.autismspeaks.org/science/science-news/language-delay-leaves-signature-brains-adults-autism>.
9)"News & Events." What Really Causes Brain Problems After Traumatic Brain Injury in Football and Elsewhere? University of Maryland School of Medicine Researchers Have a Surprising Answer. Web. 16 Mar. 2015. <http://somvweb.som.umaryland.edu/absolutenm/templates/?z=41&a=2971>.
10)"Result Filters." National Center for Biotechnology Information. U.S. National Library of Medicine. Web. 14 Mar. 2015. <http://www.ncbi.nlm.nih.gov/pubmed/22310506>.
Great article. What a bright and articulate young lady. Hope she works with autistic kids and adults someday! What's most important is that we help those with autism and spend less time figuring out what causes autism and more time helping those with autism......As in let's do more research on how we can offer more supports and services to improve the lives of autistic people...what a concept..Because it really doesn't matter for most of us why our children are autistic, what we really need is support and help to make their lives the most productive and enjoyable that we can with the supports they need.
Posted by: Leslie | April 07, 2015 at 03:34 AM
Beautiful job Cassidy. I'm so proud of you!
Grandma
Posted by: Jayne | April 01, 2015 at 07:39 PM
What a great paper! Cassidy, you should find a way to put this in a trifold brochure form and sell them in batches so that people can just walk them around their neighborhoods and pin them to mailbox posts, like the restaurants and lawn companies do. Looks like the world will be a better place when you are done with it!
Posted by: Jenny | March 31, 2015 at 09:00 AM
What an amazing job and helpful article! I learned so much from it. If I had not been told the author's age, I would never have guessed it. Please continue to write, Cassidy, and use your gifts to help others.
Posted by: Christina Waldman | March 30, 2015 at 06:49 PM
wonderful article! You will go far!
Posted by: Jan R | March 30, 2015 at 06:03 PM
Thank you, Cassidy! You will go far, and you have many comrades yet to meet. In my own family we have a high honors high school junior who is in your very special peer group. Bless you!
Posted by: Denise Anderstrom Douglass | March 30, 2015 at 04:41 PM
Thank you, Cassidy! Excellent research!
Posted by: Jeannette Bishop | March 30, 2015 at 01:00 PM
Well done Cassidy superb article for speaking out for the ones who cannot. My son is studying Psychology at Uni just now so I will send him the link...great keep the fight going..many thanks!!
MMR RIP
Posted by: Angus Files | March 30, 2015 at 08:25 AM
Cassidy, you did an excellent job! I am so proud of you! Not just in writing an excellent piece but for being the fantastic human being you are and there is no better big sister around! I love you!
Mom
Thank you Dan and Kim for posting this!!
John, thank you for your comment! They are very particular at school about the citations you use and where you get your information. She once did a project in elementary school on the rising numbers and showed it was vastly different depending on what source you used. This paper had to stay in the neurotransmitter issue.
Posted by: Allison Chapman | March 30, 2015 at 08:19 AM
Hi Cassidy,
Well done for writing this. I fear that on the US government's own figures the rise in autism has been very much more than 175% between 1990 and 2006:
http://www.ageofautism.com/2014/03/president-obama-fire-the-deniers-cdc-reports-1-in-68-autism-rate.html
And unfortunately I can tell you something else. The government's own figures are deliberately patchy and evasive, but even so within a day or two from now they will admit (dressing it up as the triumph of "greater recognition") that they have got even worse. Even then they will still be hiding what is in the pipeline (they are still masking most of what has happened in the last 12 years).
This is a terrible thing for your generation: for those that have suffered a direct hit but also their brothers and sisters, whose lives are very different from what they might have been. Only a burst of honesty and decency from our governments will begin to bring this horrible historical episode an end.
John
Posted by: John Stone | March 30, 2015 at 06:28 AM