"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

Katelyn Sings the ABCs and Happy Birthday!

Katelyn has always had a love of singing, but she never sang the actual words to the songs. Instead, she would either hum or put her own "spin" on the lyrics. For example, she might sing to the tune of "This Old Man," but say, "Swing, swing, swing...swing, swing, swing...car, car, kitty, baby, mama, dada, kitty."

Then on Tuesday afternoon, she started singing the ABCs song all on her own! I was starting to sing, "A, B..." and she took right over and sang the entire song, even with the full ending! I couldn't believe it because just that morning I had told one of her ABA therapists that my next goal was to teach her to sing the ABCs all by herself. As always, Katelyn amazed us all! She also has been singing Happy Birthday to everything as well, almost to the point of it becoming an obsession. Her favorite thing to sing Happy Birthday to is a "triangle," (she says ga-ga-gangle) so every night before bed we sing Happy Birthday to the triangle (any triangle...she isn't picky).

Here is a video that I took of her on Wednesday night. She is singing the ABCs and then she sings Happy Birthday to the "triangle" -- it is really a couch pillow, but she calls them "triangles" because she is obsessed with the corners of the pillows. She knows the correct shape is a square, and will say it if you ask her, but she continues to call them triangles anyway since her latest obsession is finding triangles everywhere. I hope you find this video of Katelyn as entertaining as we do :) And thank you as always for following my blog!

Sensory Overload...

When we first started to suspect that Katelyn had autism, we didn't really think that she had sensory issues. However, all of a sudden it has become very apparent that she definitely has a lot of sensory needs. She becomes overstimulated and will get herself all worked up and then crash hard. She will go from being hyper, laughing and talking a mile a minute, and then all of a sudden she will start crying out of nowhere.

It is very common for kids (and adults) with autism to have difficulty regulating their sensory needs and emotions. A lot of these sensory issues can come about due to environmental factors, such as loud noise or bright lights, but the cause is not always obvious. We are still trying to figure out the triggers for some of Katelyn's behaviors and sensory needs.

There are many ways in which to help a person with autism regulate themselves. For instance, sometimes deep pressure helps, which is the case for Katelyn. She likes hard squeezes and squishes, and to be thrown into the couch or covered in pillows and blankets. For this reason, we have implemented a weighted vest, which helps her to remain calm and focused. We have also ordered a weighted blanket, which is supposed to help with this as well. Katelyn also craves activities such as swinging, jumping on the mini trampoline, bouncing on a large exercise ball, and playing with Play-Doh and beans.

Last Thursday, I began implementing a brushing program to help with Katelyn's sensory regulation. It involves brushing her arms, back, and legs every 2 hours with a special brush, and then following this with joint compressions. So far, it seems to be working wonders! Last week, she was having frequent meltdowns and was unable to focus on her therapy, but this week, she has been doing great! She is sitting at the table and attending once again and is remaining much calmer throughout the day. I also believe that it could have to do with the fact that she is now getting used to her much more demanding schedule.

With autism comes many challenges, only one of which is sensory needs, but by educating ourselves and being willing to try new and different methods, we will find what works for Katelyn.

The Sky is the Limit...

Since the end of January, Katelyn had been getting 7.5 hours of ABA per week. We were on waiting lists for a few different ABA providers, hoping to get more hours added. However, it never seemed to pan out.

Then one day I met another local mother at Katelyn's EI playgroup. Her son also has autism, so we began talking about therapies. I mentioned that Katelyn was only getting 7.5 hours per week, despite the fact that it was recommended that she have 20-25 hours per week (and there have been studies that have shown that 20 hours minimum is the "magic number" for ABA to really be most effective). She gave me the information for the ABA provider that her son uses and she said to give them a call since they had offered her a ton of hours from the start. I immediately called them when I got home and asked if they had availability. They were very responsive and were out within a few days to do an intake on Katelyn. Shortly after, they came out and did an evaluation to see what areas they would need to work on with Katelyn.

Because we absolutely love Katelyn's original ABA therapist, I mentioned to her the fact that we were going to be adding another provider to work with Katelyn, but that we wanted to definitely keep her on as well. She spoke with her director and they actually ended up offering us a few more hours with another therapist also!

So, all in all, Katelyn is now receiving 26 hours per week of ABA, in addition to her 1 hour of speech therapy, 1 hour of occupational therapy, and 1 hour of developmental stimulation through EI. This is a HUGE increase in services and we couldn't be more pleased. And now she has a total of 7 therapists!

She has come so far in such a short time with just the 7.5 hours per week, so we can only imagine how high she will soar now that she is getting even more help. The sky is the limit.

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

Happy World Autism Awareness Day!

What is World Autism Awareness Day?

"World Autism Awareness Day shines a bright light on autism as a growing global health crisis. WAAD activities help to increase and develop world knowledge of the autism epidemic and impart information regarding the importance of early diagnosis and early intervention. Additionally, WAAD celebrates the unique talents and skills of persons with autism and is a day when individuals with autism are warmly welcomed and embraced in community events around the globe. By bringing together autism organizations all around the world, we will give a voice to the millions of individuals worldwide who are undiagnosed, misunderstood and looking for help. Please join us in our effort to inspire compassion, inclusion and hope."

http://www.worldautismawarenessday.org/atf/cf/%7B2DB64348-B833-4322-837C-8DD9E6DF15EE%7D/WAAD%20Brochure%20English%20Formatted%20for%20Web.pdf

Facts from the Autism Speaks Website:

Did you know…

1 in 150 children is diagnosed with autism
1 in 94 boys is on the autism spectrum
67 children are diagnosed per day
A new case is diagnosed almost every 20 minutes
More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined
Autism is the fastest-growing serious developmental disability in the U.S.
Autism costs the nation over $35 billion per year, a figure expected to significantly increase in the next decade
Autism receives less than 5% of the research funding of many less prevalent childhood diseases
Boys are four times more likely than girls to have autism
There is no medical detection or cure for autism

The Red Flags of Autism...

(The following red flags may indicate a child is at risk for atypical development, and is in need of an immediate evaluation.) In clinical terms, there are a few “absolute indicators,” often referred to as “red flags,” that indicate that a child should be evaluated. For a parent, these are the “red flags” that your child should be screened to ensure that he/she is on the right developmental path. If your baby shows any of these signs, please ask your pediatrician or family practitioner for an immediate evaluation:

No big smiles or other warm, joyful expressions by six months or thereafter
No back-and-forth sharing of sounds, smiles, or other facial expressions by nine months or thereafter
No babbling by 12 months
No back-and-forth gestures, such as pointing, showing, reaching, or waving by 12 months
No words by 16 months
No two-word meaningful phrases (without imitating or repeating) by 24 months
Any loss of speech or babbling or social skills at any age

http://www.autismspeaks.org/whatisit/index.php

Click here to view the World Autism Awareness Day Brochure.

What are you going to do to spread awareness about autism?