Kimberly Longo - Collaborative Research/ Oral History Blog

Kimberly Longo - Collaborative Research/ Oral History Blog

Reflecting on the Technologies Used for the Oral History/Collaborative Research Project

4/26/2011

When my partner and I first started finding participants to interview, we had to figure out a way to record them without showing their face. The problem that I had with the audio recording was that I was unable to convert the audio into a file that that was compatible with YouTube. I spend countless hours trying to figure out a way I could publish the interview on YouTube and then put it on weebly. Unfortunately, I still could not find a way to convert the file. However, I did find a solution. I ended up playing the video really loud and recording it back on my phone as a video. Even though the video had a black screen on it, it still displayed the conversation I had with the interviewee.

During the interview with the pharmacist (Chris), I was able to record his face. Even though I thought it wasn't as difficult, I had trouble editing his video on YouTube. Because I recorded him on my IPhone, I was only able to send it to YouTube in ten-minute increments. I kept overlapping the interviews as I sent them to YouTube. This caused difficulties while I was editing. If I would have known that my phone only allows ten minute videos to be sent to YouTube, I would have restarted the recording every ten minutes. I have never put any type of video on YouTube before; therefore, it was a new experience for me. As much as I thought I was technology literate, having difficulty with uploading and converting videos made me realize that I could use some work with certain aspects on the computer.

Reflecting on the Interview With Coleen

4/22/2011

After speaking with the developmental psychologist yesterday, I realized that this interview is just what we needed for our research project. Coleen specializes in autism spectrum disorders. She works with individual clients and also conducts group meetings for adolescents who have autism. These individuals in the meetings face the same harsh realities that every teenager deals with. Coleen greatly expanded my knowledge on the topic of autism spectrum, not just in the area that we were researching, (gluten and casein free diet) but in every aspect. I always knew it took a special person to work with children/young adults with severe disabilities, but she stated, "when working with these individuals, you should never look at them differently." Coleen also said don’t ever underestimate their capabilities. One of the tricks that she does when working with clients is to find something she likes about the person. By finding something you like in a person with autism, it helps you develop a deeper connection and special attachment to them. I thought many of the things Coleen said was very inspiring, not only in regards to this project, but also as a future special education teacher.

Autistic Children and Leaky Gut Syndrome (by: Lindsey Hooper)

4/22/2011

After conducting my interview with Jennifer, I was very interested to find out more information on one of the terms that she had mentioned she came across very often in her own research of the affects of gluten and casein in autistic children. The term she referred to was called “leaky gut,” which both she and my research have described as a condition that affects the lining of the intestines and is commonly found in autistic children. Research suggests that leaky gut syndrome is caused by damage of the intestinal lining, which makes it very difficult for the body to properly digest certain foods. The result of this damage causes bacteria and toxins to leak into the bloodstream, triggering an “autoimmune reaction, which can lead to gastrointestinal problems such as abdominal bloating, excessive gas and cramps, fatigue, food sensitivities, joint pain, skin rashes, and autoimmunity” (What is Leaky Gut?).

After reviewing an article written by a medical doctor, I learned that in the past, Leaky gut syndrome was not considered to be a real condition, but the author of the article, Dr. Weil explains that that “evidence is accumulating that it is a real condition that affects the lining of the intestines” (What is Leaky Gut?). He also explains that a colleague of his who deals with this condition in children has “established that a significant percentage of children with autism have increased intestinal permeability, but it isn’t known whether this is the cause of an affect of food sensitivities and an underlying metabolic problem”(What is Leaky Gut?). If the information of leaky gut syndrome is in fact true, then I can certainly understand how a condition such as this can cause autistic children to experience developmental delays.

How Gluten & Casein are Believed to Affect Children With Autism (by: Lindsey Hooper)

4/22/2011

In our research on the popular debate as to whether or not a GFCF diet may help to improve the symptoms of autism and autism spectrum disorders, I came across an article I found on the Autism Spot website. This article discuss the physical and psychological affects that gluten and casein are believed to have on children with autism, which is a disorder commonly associated with other gastrointestinal problems and food allergies.

To help others have a better understanding of what children with autism and autism spectrum disorders (who have also tested positive for a gluten and/or casein allergy) experience as a result of the consumption of gluten and casein, the author compares the effects that they have on the brain with that of an opiate. He explains that the feelings these children experience are very similar to the “mix of euphoria, lethargy and clouded brain function” and “hallucinogenic thoughts” that many people may experience after taking an opiod (HNWellness). This is due to the fact that their bodies are unable to properly break down wheat and/or dairy products. When this occurs, the partially digested food then turns into peptides which act as opiates after they are combined with stomach enzymes. After these peptides travel to the brain, they attach to its opoid receptors, “mimicking a hallucinogenic drug” (HNWellness). They are also noted to affect both the nervous and immune systems as well.

Though the author of this article states that not all autistic children have food allergies, he explains that based on his experience, it is very common for them to test positive for gluten and casein allergies. He also concludes that based on his experiences in counseling parents of autistic children, he has found that many children have greatly benefited from the GFCF diet.

Developmental Psychologist Questions

4/19/2011

Questions to ask the developmental psychologist:

1. Do you believe that a gluten and casein free diet is shown to benefit children with autism?
2. What are the pros and cons of a gluten/casein free diet?
3. What does a behavioral therapist do for individuals with autism?
4. If a parent wants to put their autistic child on the GFCF diet, is it harder for the child to adapt than it is for a child who starts it at a young age?
5. Do parents often ask you about this diet? If so, do you recommend it?
6. Do children with autism show a change in their behavior when they first start this diet?
7. Do many of your patient’s parents believe this diet is effective?
8. Is it hard for parents to be consistent with this diet?
9. How does behavioral therapy help an autistic child?
10. Would it be more beneficial to the child if this diet were started at a young age?
11. What are some of the ways that autism is caused?
12. Why type of symptoms can improve in autism by maintain this type of diet?
13. Have a lot of your patients tried the GFCF diet? If so, were they on it for a long period of time?
14. What types of tests are given to diagnose a child with autism?
15. What are some steps to start a gluten and casein free diet for an autistic child?
16. Is this a popular diet?
17. Why do so many parents/teachers believe that this diet shows a significant improvement on an autistic child’s behavior?
18. Do you think the foods we eat have anything to do with the reason for so many of today’s children being born with autism spectrum disorders?
19. Do you think that there is a possibility that researchers will ever declare the GFCF diet to be effective?
20. It is possible that autistic children will not respond to this diet?
21. What is the link between celiac disease and autism?

Article on "The GFCF Kids Diet Survey" (by: Lindsey Hooper)

4/18/2011

This article is about a “GFCF Kids Diet Survey” which is an internet based survey used to gather information about dietary intervention such as a GFCF diet, for patients on the autistic spectrum. This article explains that many researchers are working to find the possible link between “incomplete breakdown of proteins (identified by the abnormal presence of opiate peptides found in urine samples), and several kinds of health problems hitherto classified as "mental." Among these problems are Autism, Pervasive Development Disorder (PDD) and Asperger’s Syndrome.”

The survey was designed so that researchers would be able to collect as much information as possible on the diet, and then analyze the data in an effort to shed more light on the possible connections. The survey consisted of two questionnaires, called the Main Survey form and the Infringements Experience form. The three basic questions asked in the survey are: “What percentage of respondents get better on the diet, how much improvement can there be, and how fast does this happen?” In addition to those questions, the survey also asks questions such as, “Why do some patients get better results than others? What are the similarities and differences between those who do well on the diet, and those who don't?” The article also discuss the various aspects of the survey, such as the methods used, the surveys reliability, as well as the specific questions included in the main and infringement questionnaires.

The conclusion of this survey suggests that although the results are from an informal survey, they indeed support the belief that dietary intervention “can be a valuable treatment option for some people with autism spectrum disorders, and in some cases, may lead to the complete reversal of autistic behaviors.” The results also suggest that” time” is one of the most crucial factors in this diet, meaning that a patents success has a lot to do with the patients age at the time the diet was implemented.

If you are interested in learning more about this survey, follow this lin
http://www.gfcfdiet.com/dietsurveysept2.htm

Daniel's Success Story (by: Lindsey Hooper)

4/18/2011

This video was posted in 2009 after tracking the progress of a child named Daniel, who was diagnosed with autism back in 2000.This video shows “before” and “after’ footage of Daniel, beginning when he was about two or three years of age and ending when he was about nine years old. The “before” footage is of Daniel before beginning a GFCF diet .and the “after” footage shows Daniel with absolutely no signs of autism.

The video starts with home video footage of Daniel during a speech therapy session (pre GFCF diet) with a woman by the name of Cadey Gorman, a speech and language pathologist who has been working with Daniel since July of 2000. In this footage, Daniel shows great difficulty with listening to and following directions, as well as mirroring other’s actions as they try to teach him how to play. The video then cuts to an interview from 2003 with his speech and language therapist, Cadey Groman, who offers background information on Daniel’s case.

Groman explains that she met Daniel in July of 2007 (around the time of his diagnosis). Daniel’s initial evaluation was that he showed significant receptive and expressive language delays in what he understood and what he was saying, as well as significant delays in his play skills. When Daniel would play, he would repeat the same thing over and over and if anyone tried to “enter his world” while he was playing he would have a severe “meltdown,” throw tantrums, and become extremely possessive over his toys. Also, Daniel was unable to follow any directions without receiving a lot of visual cues from others.

After meeting Daniel, Gorman began intervention twice weekly for one hour sessions at his home, along with occupational therapy and special instruction. In September of 2000 Daniel’s family began “drastic dietary intervention” and within one month they began to see excellent improvements in Daniel. He began to expand his word length and utterances and follow direction without any visual cues. Gorman claims Daniel’s progress with his play skills and comprehension became so rapid after one month on the diet that they had to change his goals on a weekly basis in order to keep up with his progress. She also says that he began to gain language very quickly, greet people spontaneously, respond to and comment on his environment, engage with others, and make eye contact. Groman says that she believes “whole heartily that he made progress not only because he really benefited from one-on-one intervention, and some strong sensory integration input, but also the dietary intervention.”

Following the interview with Groamn, there is another interview with Daniel’s third grade teacher, who speaks about what a wonderful and intelligent student he is. She explains that although she has a background in special education and knows exactly what to look for, she would have never known of his autism if she had not been told by his mother. Daniel is in a regular education classroom and is considered to be one of the better students in her class. Not only does he do well in school and earn good grades, but he also does very well working and playing with his classmates. The final part of this video is footage of Daniel in his classroom working with others and having fun with his classmates at a holiday party. Lastly, we see Daniel practicing his Tas Kwon Do, which he seems to be quite good at, and a final shot of Daniel talking to his father who is holding the camera. If Daniel does still show slight symptoms, one would never know it from looking at this video.

Interview Summary (The Results)- (by: Lindsey Hooper)

4/18/2011

This week, I was able to interview a close friend of the family in an attempt to answer the research question “Can a gluten and casein-free (GFCF) diet really help to improve the symptoms of autism spectrum disorders?” Jenny, a mother of two, has had a lot of experience with the gluten-free diet, since both she and her daughter have tried it. Her daughter, who was diagnosed with an autism spectrum disorder called PDD (Pervasive Developmental Disorder), was placed on the diet back in 2006 for six month period. While Jenny’s reasoning for being on the diet (which is related toCeliac disease ) is not totally relevant to my research question, I do feel that her own experience with it has also been helpful in answering some of my questions because she was able to give me information about the diet that her daughter (who was only about 2 years old at the time) was, of course, unable to disclose.

Though this was a rather lengthy interview which consisted of a great deal of information (explaining both the positives and negatives of a GFCF diet, which will be posted very soon), the outcome, in short, was that she did not see any significant improvements in her daughter’s symptoms of PDD. Jenny was not all that surprised by this, since she had previously been warned (by others who have tried the diet, as well as medical professionals) of the strong possibility that the diet would make no difference in her daughter’s symptoms. Though she had already been told that the diet was not a guarantee, she had also heard many success stories from other mothers who swore by it, as well as a few doctors, who had heard of quite a few people who had success with the diet.

I was extremely pleased with the information I was able to obtain from this interview, but I am also hoping to interview someone who has experienced success with this diet, in order to get both perspectives on it. As I have mentioned, Jenny has come across quite a few people who have had a great amount of success with it, so she is currently in the process of helping me get an interview with one of these mothers. I am only hoping that this will happen within the next few days.

Interview Questions-The Real Deal (by: Lindsey Hooper)

4/18/2011

Jenn, who has a 7 year old daughter with an autism spectrum disorder, called Pervasive Developmental Disorder (PDD). I will be asking Jenn these (not necessarily all of them) questions in order to gain information on her/her daughters experiences with the GFCF diet, as well as any other information that may help to answer our research question.

***If anyone would like to offer their suggestions to which questions I should consider asking/not asking, or people that would be good to interview on this topic, I would really appreciate your input!

Can a gluten and casein-free (GFCF) diet really help to improve the symptoms of autism spectrum disorders?

1. When did you first learn of the possible link between autism spectrum disorders and foods containing gluten and casein?
2. Who was it that told you about the possible benefits of putting your child on a GFCF diet?
3. What have doctors told you about the diet?
4. Have you found many doctors to be knowledgeable on the theory?
5. Have you heard of many success stories with the diet?
6. Do you know how/why gluten and casein affect children with autism spectrum disorders?
7. Can gluten and casein be harmful to anyone or just those who can’t properly digest it?
8. Did you fully commit to the diet at all times?
9. What happens if your child consumes a food containing gluten or casein after being on the diet for an extended period of time? Will you need to start all over?
10. How long does it take to fully eliminate gluten and casein from the body?
11. Was it difficult to maintain the diet? Why or why not?
12. What are some of the things were you required to do in order to ensure that you were fully eliminating gluten and casein from your/your child’s diet?
13. Were you required to make minor or major changes to you and your child’s lifestyle?
14. Is it expensive to maintain the diet

15. Is there a difference in the taste of gluten/casein-free foods?
16. If so, did your child notice these differences?
17. Do you shop for organic products as well?
18. If so, why—are there certain products you always buy organic?
19. Does a GFCF diet require special foods or are there a lot of regular foods available that do not contain gluten and casein?
20. Do stores offer a wide selection of gluten-free and casein-free products?
21.   If not, did you have to purchase some of your food from specialty stores?
22.  Was eating out at restaurants difficult?
23.  Do you know of any restaurants that offer special menus offering gluten and casein- free foods?
24. Can you give some examples of foods that contain gluten?
25. Can you give some examples of foods that contain casein?
26. Did you notice any significant changes in your child’s behaviors while she was on the diet?
27. If so, how long did it take for you to notice these results?
28. Now that you have tried a GFCF diet, do you believe that it has helped to reduce any of your child’s symptoms related to her disorder?
29. If you didn’t notice any changes in your child’s symptoms related to autism, did you notice any other benefits that your child experienced while on the diet, such as her general health, energy levels, moods, etc.?
30. Do you think the foods we eat have anything to do with the reason for so many of today’s children being born with autism spectrum disorders?

.. . . ..Stay tuned for the results of this interview!

Special Diet Doesn't Help Autistic Children in Small Study

4/18/2011

Special Diet Doesn't Help Autistic Children in Small Study
By: Rita Rubin

This article was presented in the newspaper called USA Today. It discusses how the diet of dairy and wheat products in autism has shown no significant improvements in the symptoms of autism. Susan Hyman, a pediatrician, who led a study of diet and autism states, “subsequent studies have not confirmed this to be true”(Rubin 1). Even though there are still many parents are teacher who are convinced that there has been improvements in autistic children when they stop eating these foods, it has not been declared. Hyman believes that “behavioral therapy, not their diets, deserve credit” (Rubin 1).

The study that was examined in this article was done over an eighteen-month period and consisted of fourteen children, ages 2 ½ to 5 ½. The family members of these children stuck to a strict diet that was free of gluten and diary products. Once the children had been on the diet for four weeks, they were “challenged” once a week with a snack that contains wheat-flour or non-fat dried milk. Professional dietitians created a snack that looked and tasted the same whether or not they had gluten and casein in it. Parents and teachers observed the children’s behavior and completed a survey regarding the their behavior. This survey was completed before the snack and afterwards. The findings showed that there were no negative changes in the children’s behavior after they ate the snacks that contained gluten and casein.