Showing posts with label ASD. Show all posts
Showing posts with label ASD. Show all posts

Monday, November 28, 2011

"This Is Not Autism" (videos and phrases)...

As I've mentioned before, Katelyn presents not only with symptoms of autism spectrum disorder, but also of some other possible co-morbid psychiatric condition, quite possibly a psychosis of some sort. We have seen a recent increase in this odd behavior and recent increases in her Risperdal medication have no longer been effective as they were in the past.

Here are some recent videos of Katelyn that show some of what we are seeing at home. What we observe is usually far "worse" than this (difficult to capture on video), but it gives a rough idea of some of the things we are seeing, no pun intended...







And here are some recent phrases Katelyn has said when describing what she sees/hears (pardon the poor grammar, as these were just quick notes I jotted down):

11/10/11
Sitting with me at table while I did work...saying voh, webs, etc., then told me the webs were talking to her and laughing at her. Difficulty with feeding at dinner. Spitting out, looking up, talking about ock, etc., being defiant saying no, but could tell did not want to act that way.

11/11/11
Looking up at wall, taking shoes off as asked, then said No to putting them away. Looked up and said she saw Ew. I repeated, “You see Ew?” She said yes, Ew is climbing up the wall right there and pointed. She then said he was in a purple web with a sprinkle in it. Then she said Ew is yucky looking and that he is green. She said he talked to her and told her No about putting her shoes away.

11/14/11
In mommy’s room, talking to herself saying “Where is Ew?” over and over. I asked her what Ew looked like and she again said he is “Yucky.” I asked what color is Ew and she again said “Green” – with the odd mischievous look on her face. Then began blowing my hair and whistling and laughing hysterically saying Ew while doing it even though I told her I did not like that.

11/18/11
Getting dressed in living room, kicking me, laughing hysterically while looking off, talking about Ew, then Waw, saying Waw over and over and then she said she sees Waw and that Waw is a blue curl stuck up on the ceiling. Got extremely manicky and uncontrollable and defiant while talking about Waw.

11/25/11
In mommy’s bed with me and Ashley. Looking up at ceiling, saying Yaw and Yock. Then said I see Yock. She said Yock is not nice. Yock is in a purple web. Yock is naughty to me, Yock is always naughty to me. Then talked about seeing colorful bugs in her bed and on her sheet. She said they were red, green and blue. Said she saw them in the web with Yock. Got upset when I told her I didn’t see the colored bugs. Started talking in weird words, saying Yock is Guckak and Bocka and other strange words. Lots of talk about Yock throughout the day, even at stores, etc.

Wednesday, April 29, 2009

"Autism Genes" Identified...

Yesterday, researchers declared that two studies have led them to the discovery of certain genes that appear to be associated with autism. It is believed that this genetic link may be responsible for roughly 15% of cases of autism spectrum disorders.

This is a remarkable breakthrough, as it will hopefully allow scientists to learn more about the biological causes of autism and also to develop effective treatment options.

I do believe that some cases of autism are genetic (how can it not be when you have some families with multiple kids on the spectrum), but I also believe that there are environmental factors that "trigger" autism in some children (gluten/casein intolerance/allergy and other food sensitivities, vaccine ingredients, leaky gut syndrome, etc.). This is evident in the fact that many children with autism benefit greatly from various biomedical interventions, such as the GFCF diet (gluten-free, casein-free) and chelation (detoxification of metals from the body). I do hope that they continue to research the environmental causes as well.

This quote from Dr. Hakonarson, the leader of the research study, sums up my feelings on this subject:

"There are going to be many genes involved in causing autism," says Dr. Hakonarson. "In most cases, it’s likely that each gene contributes a small amount of risk, and interacts with other genes and environmental factors to trigger the onset of disease."

Here is a video, followed by some related articles, regarding this recent discovery:


Risk of Autism Tied to Genes that Influence Brain Cell Connections

Autism Genes Discovered; Help Shape Connections Among Brain Cells

What the Autism Gene Finding Means for Parents

Sunday, April 12, 2009

How I feel about the "cure" and Jenny McCarthy...

Last night, Kevin and I watched the interview with Jenny McCarthy and Jim Carrey on Larry King Live. Here is my personal opinion on the autism "cure" and Jenny McCarthy's efforts in the "war on autism."

I do not believe that we can "cure" our children (nor would I actually want to), but that we can "recover" our children and help them be able to function as close to NT as possible.

I personally am not looking for a "cure" for Katelyn. I believe that our ASD children can teach us so much about acceptance and love and seeing the world in a whole new way, and I am grateful that Katelyn has come into my life. I love all of her little quirks and obsessions and things that make her HER, but of course I also wish for ways to help her with sensory issues, social skills, and aggression. So I would definitely welcome something that would help her "recover" from the things that will be roadblocks in her life, but would I want her "cured" -- never. To me, autism is a large part of who she is and I love her just the way she is.

I also agree with Temple Grandin that if we "cure" autism, the world would actually suffer because there would no longer be social misfits with brilliant minds inventing all of the wonderful things like the internet, etc. Everyone would be too busy socializing

But I respect those parents who are desperately looking for a cure for their child. All of us have different experiences with our ASD kids and only we as their parents know what it is like to raise them.

As far as Jenny, I read her book, Louder Than Words, when I was waiting to get Katelyn diagnosed. I really enjoyed her book and it gave me hope in a time of worry and confusion. I do think that it is great that she and Jim Carrey are on a mission to educate people about autism, and that they are fighting the battle, but I do believe that she is a little overboard and one-sided. I do wish that she would be more careful and more open-minded about the fact that not every child can be "cured" or "recovered" in the ways that her son has been. She needs to be looking out for the needs of EVERY child with autism.

Here is PART 1 of the Larry King interview with Jenny and Jim:


If you would like to watch the rest of the interview, click the links below:
PART 2
PART 3
PART 4
PART 5

If you would prefer to read the transcript from the show,CLICK HERE.

Glossary: NT = neurotypical or "normal", ASD = autism spectrum disorder