My Autism My Voice

Celebrating You: What Color Is Monday Review

2013-05-21T17:30:00.000-04:00

Carrie's book is available on Amazon
and Barnes and Noble

Many books out on autism today are focused on the negatives that autism bring an individual; both someone affected by the disability and for those people around them. Then we have the book “What Color is Monday” by Carrie Cariello.

Carrie who I was just introduced to a few weeks ago is the mother of 5 from New Hampshire. Her second child she had, Jack, was diagnosed with autism. In her book, she discusses her journey with her kids and what she has learned from being an autism mom.

I’ve done several book reviews before and have seen both positives and negatives out of each review but what I think makes Carrie’s work here special is her authenticity. You can tell within the first pages of her book with a personal letter, she wrote that she was giving you the uncut version of her experience. You won’t get a Hollywood underdog story from her book, but you will get a real depiction of autism. That is something that makes her book special.

Carrie’s not looking here to be a celebrity and look for credit for her wonderful work but to connect with the readers. Whether you are an expert in the field, a parent of someone affected by autism or just someone wanting to learn more about autism you can’t go wrong by giving this book a look.

Among the topics Carrie discusses are IEP Meetings (which I’m sure many of you autism parents reading this absolutely love beyond belief) how to coordinate for a child with autism, making time for yourself and much more! I think my favorite part of the book though has to do with a chapter titled “Making Progress: Stretch, Don't Break”. What she uses as a metaphor is to challenge your kids like they were a rubber band. You need to test them to try new things (stretching the band) but need to know it’s limits to make sure you don’t go too far (breaking the band).

This hit home for me respectively in my own development growing up on the spectrum. When I was a kid, I never wanted to do anything but hang out in my room and watch Teenage Mutant Ninja Turtles. After time though my mom knew that I was capable of more than I was putting in. She began by getting me involved with pee-wee sports and then started coming up with reward systems to help give me incentives for putting in the effort. I could connect with Carrie’s type of parenting here because it reminds me so much of my mom. They both have been able to respectfully find a medium where they could stretch us while understanding to not over do it.

Knowing so many others on the spectrum I can say they will most likely be able to find a similar connection by giving Carrie’s book a look and will also applaud her effort towards focusing on the positives. “What Color is Monday” is as much a journey about a mother with her children as it's a celebration of being exactly who you are and throwing the word “normal” out the window completely.

I commend Carrie for her effort here for her debut novel and hope you will join me in following her future work!

*You can learn more about Carrie by checking out her blog here. You can find a list of my favorite autism books here.*

The Story Of Luke: A Look At Myself

2013-05-05T18:02:00.001-04:00

The Story of Luke is is currently in theaters
and available on Itunes and On Demand.

“The Story of Luke” is not just any movie about autism; it’s a movie that can give the viewer a look into a world that can often be strange and mysterious to an outsider.

When I first decided to watch “The Story of Luke” I was mildly interested as a movie buff. Than a few minutes later I was already on my Facebook mobile posting a status…

“5 minutes into The Story of Luke and I'm hooked. I need to tell the movie company though that The Story of Kerry is set whenever they are ready for a sequel!”

Going with the theme of being hooked, I would learn while watching the film, Luke and I share a lot of similarities. We are both 25, both on the autism spectrum and both are looking for a relationship. What I related to most perhaps and more importantly is that we are both trying to find ourselves in a world that is full of things that can be sensory intense and can create sensory overload for us at times. I was happy to have had the opportunity to see this film.

In 2010, when I started consulting for the film ”Joyful Noise” for a character Walter, who was a teenager with Asperger's, I couldn’t help think how amazing it would be to consult for a character who is an adult on the spectrum. Now with Luke, I ended up finding a character that was different from anyone I ever reviewed. A big part of that was based off his authenticity he brought from his words to his actions.

Kerry at Grauman's Chinese Theatre in Hollywood, California, with actor Dexter Darden who played Walter Hill, a teenager with asperger syndrome in the 2010 motion picture Joyful Noise starring Queen Latifah and Dolly Parton.

One of the big high points for me was that the movie and specifically Luke’s character wasn’t overshadowed by his autism. His character showed that regardless of having autism or not we all have struggles that we have to overcome. Sometimes people look at those with autism like they are a completely different species... Luke is a living testament that that couldn’t be any farther from the truth.

This movie was a breath of fresh air. It is one of the few movies out there today that shows autism in a positive light. The fact that it was a comedy made it even more entertaining to watch. The jokes were spot on and the presence of Seth Green really helped the movie’s overall caliber/credibility in that department.

I hope people will share this movie as a legitimate source to help spread awareness for autism. Our community will be a lot better for seeing this film. Speaking as someone on the spectrum, I believe this movie will make for a better world for those on or off the spectrum in relating to an autism diagnosis. I’m grateful and thankful for that…

Guest Post: Mother Finds an "Ability" in her Autistic Son

2013-04-28T20:11:00.000-04:00

*This guest post is from Courtney Barnum from the facebook page "A Legion for Liam" and the blog My Life With My AuSome Son. Courtney is the mother of Liam, a 7 year old on the autism spectrum. This post is dedicated to Courtney finding an amazing ability in her son. Also check out our new promotion on Paper Clouds Apparel where you can help fund a scholarship for an adult to attend college!*

Hans Asperger has been quoted as saying, "For success in science and art, a dash of Autism is essential." LOVE this quote. I like to think Liam got his artsy fartsy side from me, and autism. While pregnant for Liam I was working as a tattoo artist, but soon was pulled from work because my pregnancy was deemed high risk.

I sat and dreamed for hours a day (when I wasn't vomiting my brains out) that my baby would love art like I do. To me it didn't matter what the canvas was. Paper, wood, metal, skin. I have always wanted to make it more beautiful with my art, and I prayed my baby would be the same when he/she was older.

Liam started drawing at 12 months old. It was all scribbles, but he was happy. Right away he rejected coloring books. He NEVER wanted to color someone else's art, he wanted to make his own. So we stocked up on white paper, and construction paper.

It has been amazing watching his art go from scribbles and scrawls, to people and animals. They are always very abstract. For awhile, he would choose one color and only use that. His first TSS (I miss her so) made him experiment with other colors. Through many tears, and many prompts Liam discovered that more than one color was fun. And an artist was born!

Artist hard at work.

I started a folder on our A Legion For Liam page and started posting his art. (you can view that HERE) One pic in particular caught Robert's eye, and he commented how art like that was what he at Paper Clouds Apparel was looking for. Liam felt so proud to be recognized by someone, so I contacted Robert and asked him all about his vision and Paper Clouds Apparel.

Once I heard that all we had to do was send in some of Liam's art, then choose a non profit group of our choice for part of the proceeds, we were in! Liam worked hard for a week creating different pictures, and we sent them off to Robert.

(The art that got Liam "discovered." This is his interpretation of he and I in town. He is on the left with his ear muffs on. He drew this for art class when he was asked to draw a picture of a busy town.)

This is one of Liam's drawings being promoted on the shirt. Check out our promotion which begins Monday 4/29 and ends Sunday 5/12! 50% of the proceeds will go to help fund a scholarship for an adult with autism to go too college. Check out PaperCloudsApparel.com for buying information!

Choosing a group for our campaign wasn't hard. I had just discovered Kerry Magro on facebook and was so inspired by all he does as an advocate and a voice for Autism. I contacted Kerry and put him in contact with Robert, and that was that. Kerry started KFM Making a Difference. A non-profit corporation focused on consulting and working on affordable housing projects for those with special needs. He also has a scholarship program for Autism! Now that is AUSOME!

Now came the hard part, waiting for our campaign to be ready and promote. I couldn't wait to see Liam's art on the tees. When Robert sent me a few shots from his phone during the photo shoot, I was ecstatic and Liam was jumping with excitement!

Another great reason to be involved with Paper Clouds Apparel, is Robert hires Special Needs adults to work for him packing the tees. The more tees Robert sells, the more jobs for special needs adults. How AUSOME is that???? I love when Robert posts pics of the adults he works with. They always look so happy and so proud of what they are doing. It makes my heart smile!

I feel honored to be a part of such a great organization. Liam feels "cool" because it is his art that is on the tees. That must feel really cool for him. So, open your heart, and please open your wallet, and purchase at least one of these AUSOME tees. You will not only be helping special needs adults get a job, but you will be "donating" to KFM Making Difference. I would say you will be "killing two birds with one stone" but Literal Liam hates that saying because he thinks you will really kill two birds. Instead you are helping 2 great organizations, and making a little boy smile.

(The shirts are $18 for the Children's shirts. Then $24 for the 100% cotton shirts and women's tank tops and then $27 for the super soft, sensory friendly tri-blend shirts.) (50% of the profits go to KFM Making a Difference.)

A Mother's Passion: Making Autism A Household Name In New Jersey

2013-03-12T19:27:00.001-04:00

*This guest post is by my friend Johanna Burke. Johanna spoke at an Autism Speaks Awards Event last February which I had the opportunity to attend. For this post she has offered to share her speech and story with our community.

Johanna has been walking for Autism Speaks for the past 8 years with her community of Hawthorne, NJ. She became a member of the Northern NJ Autism Speaks Community Awareness Committeee in 2010 and is currently the Publicity Chair along with actively being involved in promoting autism awareness. Johanna will not stop until autism is a household name in NJ. In addition she is the captain of "Team Hawthorne United" and her walk team has raised over $100,000 over the past 8 years for Autism Speaks.*

"Good evening and welcome to the Northern NJ Autism Speaks Kick-off event. My name is Johanna Burke and I am here to tell you why I walk for Autism Speaks Northern NJ. I hope my story inspires you, motivates you and encourages you to get out there and make a difference because 1 in 88 cannot wait anymore. We are all in this together and each and every one of us in this room can and will make a difference in our children’s lives.

Autism. I had never given this word a second thought, up until 8 years ago when my oldest son, Aidan, was diagnosed with it at 2 years old. My Aidan just turned 10 years old on February 9^th. Still there is not a day that goes by without me thinking about it. Sometimes not an hour goes by without me thinking about autism. So why do I walk. I walk because:

Today-Autism affects 1 in 88 children nationwide; 1 in 54 boys, making it more common than childhood cancer, Juvenile diabetes, pediatric AIDS, cerebral palsy, cystic fibrosis, muscular dystrophy and Down Syndrome combined. In New Jersey autism affects 1 in 49. 1 in 29 boys. It is now an EPIDEMIC. We do not know what causes autism. No cure is known.

My oldest son Aidan is beautiful. To look at him you would never know that he suffers from such a devastating disability called autism. Aidan has severe autism-he is completely non-verbal, does not sit still, is constantly running the house and requires 24 hour care. He is not an autistic savant. He does not have high functioning autism known as Aspergers. He does not have any words. He cannot take care of himself. He cannot get himself something to eat or drink. He does not know how to take a bath by himself or wash himself. He does not know how to dress himself. He is still wearing a diaper and does not know how to go to the bathroom by himself. I have been changing his diapers since he was born-10 years ago.

Aidan also has severe sensory integration disorder which he was diagnosed with right before he turned three years old. This disorder is the inability of the brain to correctly organize and process information captured by the senses. Essentially, Aidan cannot feel where his body is in space. This is why he is in constant motion and never sits still. In fact, Aidan’s body will only calm down at night after he has taken his prescription medication Risperidone which I call the miracle drug because it is the only thing that gets Aidan to sleep at night for at least 5- 6 hours a night. Aidan has never slept thru the night since he was born. Now whether he sleeps thru the night, even on his medication now, is a crap shoot. Sometimes we start our day at 1 am, 2 am, or 4 am if I am really lucky.

My Aidan has no words. He is completely non-verbal. When he was 4 years old he was diagnosed with severe verbal apraxia of speech which means his brain cannot connect with the muscles in his mouth in order to produce speech. He had words when he was 2 ½ years old -5 years old. He would say them when he was prompted. Words like car, hi, bye, Pop, Dora, owl. I wish I would have recorded these times because I do not remember what his voice sounds like. I have never heard my son call me “Mommy” or say “I Love You Mommy”. I have been waiting ten years to hear Aidan say anything to me. Aidan does make a lot of loud sounds and noises. Sometimes on the verge of screaming are his noises-an ear piercing scream that goes right through you.

Aidan was diagnosed with epilepsy when he was 7 years old. He can have a seizure at any time. His last major seizure was over a year ago and was truly the most horrible thing I have ever witnessed in my life. I watched my son turn blue, his eyes roll back into his head and pass out on our living room floor completely unresponsive. I am happy to say he has not had another seizure like that since then. Approximately 30 % of all children with autism have some type of seizure disorder. Aidan can never be left alone. Someone has to be constantly watching him because he can have a seizure at any time.

In March of last year, Aidan was diagnosed with a severe immuno deficiency disease called DeGeorge Syndrome. His body does not produce enough antibodies to fight off infection in his body. This explains why he was always getting sick from when he was born. He had constant recurring ear infections from when he was a month old. He has had 3 sets of tubes put in his ears, his adenoids removed and his tonsils removed all by the time he was 2 years old. I was told that he has one of the most severest cases of DeGeorge Syndrome his neurologist has ever seen and compared him to the boy in the plastic bubble. His antibody level is at 200 when the normal antibody level is at 800. He has been going every 3 months to UMDNJ in Newark for IV 6 hour antibody infusions with sedation at the hospital and I am happy to report that this is helping him, however, his antibody levels gradually fall again. He may have to go for these infusions for the rest of his life. He is on a constant antibiotic in between his infusions to help ward off any illnesses.

So why do I walk. I walk because my Aidan is truly a hero in my eyes. He gets up every day and has to learn how to live in our world and adapt. Autism makes this so hard for him every day, every hour, every minute. I sometimes try to imagine what it is like to live in his world. And I can’t. And then I cry. It makes me so sad. It is an overwhelming sadness that I don’t think will ever go away. It permeates every part of my being. My Aidan inspires me every day to get up, fight the fight, and keep the faith. As soon as I see that huge smile on his face in the morning, it motivates me to keep going. It motivates me to make the most out of every day that we all have together. I take one day at a time and always try to live in the moment. I have learned to enjoy each day as it comes and treasure the little things that Aidan is able to accomplish like greeting me with a big smile on his face and seeing the excitement in his eyes when I come home from work. And you know what it could always be worse.

It took me a long time to come to terms with my son’s condition. I had to look at the good things and not focus on the bad or I would be destroyed. I always try to focus on the positive with a smile on my face. I think most people would be surprised to know what goes on behind my infectious smile. My Aidan needs my support, my strength, and my perseverance. My son does not have a terminal disease. He is not physically handicapped. He is not confined to a wheelchair. He does not have cancer. And I am eternally grateful for that. I cannot imagine my life without Aidan. Nor do I ever want to. His hugs and kisses make my day-they make my life.

I have been walking for the past 8 years with my community of Hawthorne for Autism Speaks. I am proud to say that I became a member of the Northern New Jersey Autism Speaks Community Awareness Committee in 2010, and currently I am the Publicity Chair and am actively involved in promoting autism awareness and will not stop until autism is a household word in NJ.

I am proud to say I am the captain of Team Hawthorne United and we were the top Walk Fundraising Team in Northern NJ for 2012 in that we raised over $25,000 for the walk. My team raised over $21,000.00 the year before and was the top community fundraising team for 2011.

We walk every year to help find better treatments and ultimately a cure for the millions of families affected by this devastating lifelong disability.

I walk so that someday my Aidan may be able to go out to dinner with his family and enjoy a meal at a restaurant.

I walk so that someday Aidan may be able to go to the grocery store with me and pick out his favorite snacks to buy.

I walk so that some day Aidan may be able to go to the mall with me and pick out his own clothes to buy.

I walk so that someday Aidan will be able to put his socks and shoes on by himself.

I walk so someday Aidan may be able to get himself something to eat or drink by himself.

I walk so that someday Aidan will be able to have some sort of relationship with his little brother Dailey who he has never played with or spoken to or even acknowledged in the past 10 years.

I walk for Luke, Anthony, Alec, Angel, Mattie, Mikey, Mark, Kyle, Brenden and Danny.

I walk for your 1 in 88. I walk for my 1 in 88.

I walk so someday I can hear Aidan call me “Mommy” for the first time. I walk so someday I can hear Aidan tell me “Mommy I Love You.”

I walk because if I stand still it would destroy me. I will continue to walk until I have no breath left in me. I walk because I have hope and I will continue to have hope because without hope, we would have nothing. I walk with all of you because it is my belief that working together with Autism Speaks we will find the missing pieces of this puzzle together. Thank you.

Team Hawthorne United has a Blue Hair Extension Fundraiser for April-Autism Awareness Month coming up on Sunday March 24th at the Ambulance Corps Building-970 Goffle Road in Hawthorne, NJ 07506. The event will be held from 11 am to 4 pm and each blue hair extension is $10 which will be donated directly to Autism Speaks on behalf of our walk team-Team Hawthorne United. To donate directly to her team please find her team page here.

Both Sides Of The R-Word

2013-03-09T13:22:00.005-05:00

Last wednesday was Spread The Word To End The Word day where we urged our community around us to stop using the r-word in a derogatory fashion because of its harmful effects on others. This is my 2nd year that I've done a PSA to help spread awareness for this campaign. I wanted to get involved with this effort because I've been on both ends of the word. When I was younger I used to be call the r-word repeatedly in our special ed classes and than when I got older I would joke around with my friends using the word. It wasn't until this campaign came around I really began to understand how harmful this word really was to people.

I urge you all to go look at www.r-word.org for more information on this campaign. Special Olympics and Best Buddies partner here as hosts of this event and have been doing a fantastic job ever since 2009. Without further ado here are my PSA's!

My Story: Spread The Word To End The Word (2012)

Who Do You Call The R-Word? (2013)

Guest Post: @AspergerSadie and Her Efforts to Support Autism

2013-02-17T16:56:00.001-05:00

This guest post is from Erin Clemens (also known on Twitter as @AspergerSadie). Erin is an adult on the autism spectrum from New Jersey who started the website http://www.ihaveaspergers.webs.com/ to write about her experiences.

My name is Erin Clemens. For 15 long years, I was confused. People were angry with me, and I could never figure out why. They seemed nit-picky. I tried SO hard to understand, but nobody knew that I was just DIFFERENT.

When I was in 10th grade I was diagnosed with Asperger's Syndrome. While at the time it didn't mean much to me (I hadn't changed), I began to learn more and more about it. Others started to understand me better. Finally, my life was making sense, and people were listening to me. That's when I knew I had to help educate others. I didn't want others to go through the difficult times of being undiagnosed like I had.

That same year I was diagnosed (2005), I also lost my purse. Since my money was IN that purse, I had no way of buying a new one. So I looked up online to see how to make one. The first search result that I noticed was about duct tape. Well, I had duct tape! Grabbing the roll, I quickly got to work. In about 2 hours, I had made my first item out of tape. But I didn't stop there. I created wallets and a tie for my Dad (who proudly wore it one time for a picture when I gave it to him on Father's Day.) and SO much more. My favorite items, however, where the bracelets. So colorful and easy and fun to make. A few years later, I noticed how when I used different colors, they looked like puzzle pieces from the Autism Awareness ribbon. I quickly grabbed the autism colors and put the first Autism Awareness Duct Tape Bracelet together.

People noticed it. They WANTED one. But it didn't seem right to just make money off of autism. So I decided to see how much money I could make and donate it to an autism cause. They sold like wildfire. The first year I made about $150. I wanted to do it again the next year, in 2012. By the end of the year, I had made enough money to buy an iPad AND a military grade case and screen protector for a class of students with autism.

This year, 2013, I hope to sell even more. I've gotten a PO box and I will try selling them internationally. I can only sell them by money order, but It keeps me on track anyways. I've created a Facebook page (https://www.facebook.com/AutismAwarenessDuctTapeBracelets) for the bracelets as well. My dream is to not just raise money, but autism awareness, acceptance, and understanding all at the same time. These bracelets symbolize hope, dreams, and positive futures. They symbolize to me the childhood of understanding and acceptance that I never had, and to me, that's priceless.

7 Autistic Singers Who Will Blow You Away

2013-02-06T12:04:00.001-05:00

I've spent a great deal of time highlighting amazing autistic individuals and their abilities on my video blogs. Because music has been such a huge influence to my early development I wanted to highlight 7 of my favorite autistic singers out there today. Check these individuals out and hear more on what they are doing today!

1. Kyle Cousins (Cover of "Keep Holding On" By Avril Lavigne)

2. Hunter Brown (Cover of "Everybody Wants to be Heard" By Kyle Cousins)

3. Kyle Coleman (Cover of 'She's the One' by Robbie Williams)

4. James Durbin (American Idol finalist sings, "While My Guitar Gently Weeps")

5. Scott James (2009 X-Factor Participant Sings "Through My Eyes")

6. Colin Brennan (Cover of "Consider Yourself" from Oliver Twist)

7. Michael Korins (Cover of "When You Believe" by Whitney Houston)

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Bonus Video: I'm no singer whatsoever but I do dabble in some "Kerry-Oke" from time to time so in honor of Beyonce's Superbowl Halftime Show last weekend I thought I would share this video of me that was recorded a few years back. :)

Autism: Date Who Makes You Happy

2013-02-05T14:28:00.002-05:00

So, this is not as much as a post but more of a rant on why it's so disappointing at times to see people on the spectrum misconstrued as only capable and only willing to date other people on the spectrum. When I started dating at 15 I understood every reason why someone would want to date someone else on the spectrum. There is a certain sense of comfortability going in knowing that someone has in some ways experienced similar things to what you have experienced...

I just don't want that to be our limit on who we CAN date.

Whether it's through the media or other means I've always believed that the connection you feel and get with another individual should be the deciding factor on pursuing a relationship. That's why sometimes I'm bothered by how the media portrays individuals with special needs always ending up with those with special needs. Of course it happens from time to time but in our society which is becoming more diverse by the minute things are changing.

Whether the next person I date has autism or doesn't there needs to be the connection. It's really that simple.

16 Must Read Autism Books!

2013-02-04T08:30:00.000-05:00

It's hard for me to believe that I've read 16 books in my life let alone 16 books relating in some way to autism! When I was a kid the last thing I ever wanted to do was open a book. Alas, as I got older, I matured to trying to set a goal of reading a certain amount of books each year. As an autism advocate for the past several years now I've had the opportunity to read some amazing works by authors within our community. I hope you will take a few seconds to check out the list below and see if any of these books may be something you might want to pick up in the future!

If you have an autism book you'd like to recommend please leave a comment below (I'm dying to read a new book right now actually so you'd be helping me out)!

1. The Golden Hat: Talking Back to Autism (Kate Winslet, Margret Ericdottir and Keli Thorsteinsson)

The book serves as a launching pad for celeberties coming together to support an autism related cause. Kate Winslet, one of the authors of this book is probably one of the most well known celeberties in the world who supports our autism cause. The book provides seriousness, humor and general insights on autism today. The book also serves as a catalyst for The Golden Hat Foundation which focuses on changing the negative perception that sometimes comes with autism. You can read more about their foundation from me here.

2. Thinking Person's Guide to Autism (Shannon Des Roches Rosa, Jennifer Byde Myers, Liz Ditz, Emily Willingham, Carol Greenburg)

Autism Self-Advocate and Celebrity John Elder Robison (also has 2 books on the list below) called this one of the best books of 2012 and I would have to agree with him. Had the opportunity to write a review of the book and overall thought this was the most complete autism book I've ever read. The book consists of essays written by advocates, experts in the field, parents, autistics, etc. It also provides resources to learn more about the subject of autism.

3. A Regular Guy: Growing Up With Autism (Laura Shumaker)

I fell in love with this book after only 2 chapters (you can read the first 3 chapters here to see what I'm talking about)! Laura's insights as a mother of her son Matthew are both wonderfully put and most of all real. Much like The Thinking Persons Guide this book comes with no agenda however portraying what autism is through the eyes of someone who has years of experience on the subject. (Read my full review of the book on autism speaks official blog here)

4. Carly's Voice: Breaking Through Autism (Carly and Arthur Flesichmann)

5. I Love Being My Own Autistic Self (Landon Bryce)

30 some odd pages of pure awesome! This is the latest book I've read on autism. Landon from the Thautcast.com did a great job here with this. To help paint a better picture of his book I wanted to share my recent video review I did. Well done Landon!

A Review of "I Love Being My Own Autistic Self"

6. Atypical: Life with Asperger's in 20 1/3 Chapters (Jesse Saperstein)

I've had the pleasure of meeting Jesse once in the past for a few minutes and all I can say about him is he's a very funny and personable individual. I think this shows in great context in his book. Jesse has taken this book as a lightning rod to start a very successful speaking career in terms of disability advocacy, anti-bullying campaigns among other topics!

7. Look Me In The Eye: My Life with Asperger's (John Elder Robison)

The best book I've read on someone's journey with autism. Some of the other books on this list are more informational however narratively speaking this book is the best you can read today on autism. John has been an autism advocate for the past 7 years now and serves on several boards relating to autism. Look Me In The Eye also is a New York Times Best Seller! You can read more great works from him via his blog here.

8. Be Different (John Elder Robison)

This is John's second book he's done which digs deeper into autism. Very much like the first this book comes with a great narrative and consistent humor.

9. Understanding Autism For Dummies (Stephen Shore, Linda G. Rastelli)

10. Ten Things Every Child with Autism Wishes You Knew (Ellen Notbohm)

I wish I read this book sooner! This book is on the top of my list when recommending books to parents. Early Intervention remains such a vital key and this book helps make the parent understand the child's perspective while they get older.

11. Loud Hands: Autistic People, Speaking (Julia Bascom)

Reminds me to some extent to The Thinking Person's Guide to Autism but with a huge cavaet... Everyone who writes for this book are on the autism spectrum! It's a book that deserves immediate attention from everyone in our community because these are the individuals living with autism everyday. As someone on the spectrum I may have a little bias here but this was the easiest read on this list.

12. Big Daddy's Tales From the Ligher Side of Raising a Kid with Autism (F. Lewis Stark)

13. Unwritten Rules of Social Relationships: Decoding Social Mysteries Through the Unique Perspectives of Autism (Temple Grandin and Sean Barron)

You really can't go wrong with any of Temple Grandin's works but this book I found the most helpful in terms of the social aspects of autism. It also introduced me to the work of Sean Barron for the first time who has autism.

14. The Complete Guide to Asperger's Syndrome (Tony Attwood)

15. Love Anthony (Lisa Genova)

Of the few fictional books on autism I've read this was probably my favorite. Ms. Genova takes a great deal of time to write a book that nails what autism is today. Even though not autistic herself, she brings a unique perspective into autism from the clear research she's done in the development of the book.

16. Healing Waters: Some Things Are Better Than Gold (Rob Wierick)

Like Love Anthony, Healing Waters is a fictional piece with one of it's supporting characters who is a young boy on the autism spectrum. I did a review of Rob's book in January describing his work as a positive portrayal of the abilities we have in some of us. You can read more of the review here.

Discussion: An Autism Superbowl Commercial?

2013-02-03T13:12:00.002-05:00

Source: NBC Screenshot

What a wonderful time of the year! As a HUGE sports enthusiast I'm always one of the biggest fans of The Superbowl every year. The game, the commercials, the wings...nothing gets much better than that!

Even though most of the commercials end up being from big companies, what if our autism community had a 30 second commercial that would be seen here? What should be included in it to help our community?

In the past we've had very minimal commercials on autism out there as is but here are just a few thoughts I had...

Starting off it would be amazing to see a representation of some capacity of everyone from a young child to adult on the autism spectrum. Even though it would be only 30 seconds getting an image of the whole spectrum would be nice.
As much as it would be great to be flashy I think this would be a great opportunity to highlight a few seconds of some autistic individuals abilities. Maybe some kind of quick music performance for 10-15 seconds in addition to some autism stats such as the significance of 1 in 88? A positive commercial might help with the negative media portrayal that sometimes comes with autism.
Besides from this I'd really support someone like Temple Grandin being included to put a celebrity face of autism in the conversation.

These are just some of my thoughts. I know that a commercial such as this is a pipe dream with how much these commercials actually cost but it is an interesting topic for debate.

What would you include in an autism related Superbowl commercial? Feel free to leave your comments below!

An Exceptional Achievement! A Book Review of "Healing Waters, Some Things Are Better Than Gold"

2013-01-29T12:58:00.003-05:00

As an adult with autism, this book blew my mind. As a sports enthusiast, I’ve always been delighted to read stories about the underdog. Seeing that this particular underdog, in a young boy named Scotty, was also diagnosed with Asperger’s made me relate so much to what was written here. Even though this is a fictional piece, I felt like this story was pulling at my heartstrings throughout. (Warning: Spoilers Below)

In this story Jeffrey Connors, a disgraced former Olympian banned for doping is teaching kids to swim for $7.25 an hour in Oxford Mississippi. While muddling along he discovers a phenomenal talent, Scotty, who can return Jeff to the world stage if with his coaching Scotty can make the US Summer Olympics team.

With wonderful support from his mother Anna and his grandmother Billy, Scotty sets off on this adventure into a cut-throat world stage of international sport competition. When a crisis occurs at home in the U.S. his main support of his mother Anna must leave him with Jeff in charge. The decisions that are made in the next few days of the competition set out riveting scenarios that show not only incredible talent Scotty is made of, but Jeff’s true self as a champion, formerly disgraced or not.

When Scotty and Jeff return to Moon Lake and Scotty continues to swim where he found a way to deal with his autism we find the meaning of the book title Healing Water’s Some Things are Better than Gold.

One saying I tend to say a lot these days is that if you meet one person with autism you’ve met one person with autism. Healing Waters shows that individuality in full force once again and is much a story of redemption as an awareness story of the amazing abilities that those on the spectrum are capable of. If you are like me you won’t be able to put this book down once it gets started!

If you’d like to read more about the book check out Healing Waters official webpage.

For purchasing information you can find the book on Amazon here and the Kindle version here.

Guest Post: Autism in Teens: Top 10 Facts Parents Need To Know

2013-01-07T11:00:00.000-05:00

Autism in Teens: Top 10 Facts Parents Need to Know

Having a child diagnosed with autism can be a difficult time for parents and extended family. Autism is not a well understood condition, and diagnosis of autism is rising; as many as 1 in 88 people are believed to being diagnosed on the autism spectrum. Many teens with autism today were diagnosed while they were toddlers between 1 and a half and 4 years of age.

Autism is not a personality disorder, it is a developmental disorder. By the time an autistic child reaches their teens she or he has learned skills that assist them with interactions with others. Many teens diagnosed with autism are able to participate in grade-level activities and classes. Many autistic teens possess above average intelligence. It's a difficult condition to identify because it has a large spectrum of behavior; as a result many people with autism can be misdiagnosed or even undiagnosed. Autism in teens ranges from seeming hardly affected mild effects to acute effects and very challenging behaviors.

10 Important Things to Know About Autism

1. Autism being a 'spectrum' disorder' meaning that it can display as very mild almost non-existent or display as severe and difficult behaviors to manage. The most important aspect to note is difficulties communicating socially; things like eye contact, seeing from another's point of view and simple difficulty in expressing themselves.

2. Asperger syndrome is on the autism spectrum; the only difference is those with Aspergers develop communication skills on time developmentally, while those with autism have been known to have speech delays.

3. You can't pigeon hole autistic teens. They are as individual as anyone. Some teens with autism can be talkative and others are silent. There can be sensory problems (usually overly sensitized), gastro-intestinal problems or sleep disorders.

4. There is no 'cure' for autism. There are however many treatments that improve the life of a teen with autism. Autistic teens have different perceptive and thought patterns and treatments are usually dependent on those patterns. There are art based therapies, bio-chemical, behavioral and sensory therapies for this condition.

5. There is no known definite cause for autism. Genetics could be a huge factor along with mercury vaccines. Many researchers believe there may be a combination of causal factors.

6. Usually autism is a lifelong condition, it is not outgrown. Early intervention can reduce its symptoms dramatically. Those with autism often successfully marry and are also able to put their unique talents to work for their benefit. Autism is a condition that is accounted for and managed to help the teen cope.

7. A family with a child or teen diagnosed with autism is going to need support. 'High' functioning autistic children are a challenge but low functioning children with autism can be crushing for a family. Respite care; where a non-judgmental, patient and trusted extended family member or professionals takes care of the child for a while; can be a life saver for families.

8. Choosing a school is critical. A school that does wonders for others with autism may not be the best school for your child. Decisions about where to enroll a child with autism in school is best made as a team decision; therapists, parents and school personnel.

9. There are numerous unfounded myths about teens with autism. They are 'unfeeling', can't have 'normal' relationships or marry, can't hold down jobs are just a few. Many with autism make dedicated mates and are highly intelligent and productive employees. Many teens with autism possess a great ability to focus.

10. Autistic children and teens given patient guidance and non-judgmental companionship can be highly functioning contributors to the world. Their often very unique talents may be what the world needs at this time.

Teens with autism do feel emotions; their challenge mostly is learning to express them in a self-satisfying manner that communicates how they're really feeling. Patience and recognition of the limitations they may be challenged with goes a long way.

About the Guest Author

Agnes Jimenez is a professional blogger and writer. She writes for many online establishments and currently partners with HelpYourTeenNow.com in spreading awareness about troubled and depressed teenagers (and how to deal with them). Help Your Teen Now aims to increase awareness on the current psychological and societal stresses of today's teens and how these factors affect the future of our society.

A Year In Review: Top 12 Autism Videos of 2012

2012-12-31T11:20:00.000-05:00

With 2013 now on the horizon I wanted to take a minute to highlight some of the best autism related videos of 2012. Wishing everyone a Happy New Year!

#1: 60 Minutes: Jake: Math prodigy proud of his autism

Source: CBS News Online

#2: Carly's Cafe- Experience Autism Through Carly's Eyes

Source: Carly Fleischmann's (A Self-Advocate's) Youtube Page

#3: What Would You Do: Child With Autism Insulted By Customer

Source: ABC's "What Would You Do" Program

#4: Katy Perry, Jodi DiPiazza Sing at Night of Too Many Stars

Source: Comedy Central

#5: The Autism Spectrum And You

Source: Hope 9 Conference: Talk on Autism Featuring Several Autistic Self-Advocates

# 6: Teacher/Bully: How My Son Was Humiliated and Tormented by His Teacher and Aide

Source: Stuart Chaifetz's Youtube Page

#7: My little brother has autism

Source: Stuart Duncan's Youtube Page

#8: Life with autism: In their own words

Source: CNN's Youtube Page

#9: An Evening With Temple Grandin

Source: NationalAutisticSociety

#10: An Autism Story with The Jorgl Family- Our Special Life

Source: CafeMomStudios

#11: ASAN President Ari Ne'eman at House Committee on Oversight and Government Reform

Source: Autistic Self Advocacy Network Youtube Page

#12: Kick Of Hope (Story of Anthony Starego, the autistic high school kicker)

Source: ESPN

I'm Autistic: Please Don't Fear Me (Sandy Hook Elementary School Shooting)

2012-12-16T15:17:00.001-05:00

After a 15-year long battle with Alzheimer's Disease my Grandma passed away last week. Yesterday at her funeral we paid our respects not only for her but the lives of those individuals who were killed yesterday during the shooting at Sandy Hook Elementary. I hope that we all take a second to pray for these individuals and their families.

With that being said I unfortunately need to send a prayer out there to the media to please stay away from scapegoating autistic individuals as people who will commit violent crimes. Yesterday reports came out that the shooter might have Asperger Syndrome, a form of autism, and/or a psychiatric disorder.
As many autism organizations have already stated, it is more likely someone with autism will be a VICTIM of a violent crime than the person responsible for that crime. Please take the time to understand the facts and to again mourn for those affected by yesterday's incidents. The last thing anyone needs is more hate and ignorance in this world towards communities that just want to be accepted.

Below I've posted my letter (which I shared on my Facebook Page yesterday) to the Media asking them for their understanding during this time. I've also posted a video where I read my letter along with my reaction to the past few days. Thanks everyone so much! Please spread the word: Don't fear Autism...fear ignorance!

My Letter:

My Video Response:

Guest Post: Becoming Whole

2012-11-15T13:37:00.000-05:00

*Photo of and courtesy of Carline McGraw from AWishComeClear.com and writer of the guest post below. Have a story you would like to share? Learn more about submitting a guest post here*

When I was a little girl, I don't remember having a firm concept of God, specifically. Yet I do remember having a very clear idea of what heaven would be like. I believed that heaven would be just this: a place where I could talk freely with my brother Willie.

It would be a place without the limits of autism on his part or lack of knowledge on mine, a place where I could ask him a question and receive a complete answer. I remember wanting to ask him about the details of our life; I wanted to know if Cheerios were really his favorite cereal or if he ate them simply because that's what Mom bought. I wanted then what I want now: a window into his mind and heart.

Yet maybe, just maybe, I can only see in part because to see fully would be too much beauty to bear.

For me, heading this wisdom means that, even as I hope for heaven, I look for those sudden windows into my brother's mind and heart now.

I remember a time one such 'window' opened: during the long-ago era when my brother was obsessed with Snow White and the Seven Dwarves. He had (still has) all seven stuffed dwarves, and he loved to line them up. He referred to himself as 'Grumpy' or 'Happy' depending on his mood. I realize now that the film was probably an excellent way for him to learn about identifying emotion, since each dwarf is typecast and consistent in facial expression throughout the story.

One day, my parents ask him, "Willie, if you're Happy, who is Mommy?" For reasons inexplicable, Willie replied, "Mommy is Bashful!" Mommy is not bashful. However, Bashful is a thoughtful kind dwarf, so perhaps these qualities were behind his choice.

My mom then asked, "And who is Daddy?" Willie said, "Daddy is Doc!" This choice seems a bit more logical. My father wears glasses and has a calm, direct way of expressing himself. He has a quirky sense of humor, and he's a natural leader.

Finally, my mom asked "And who is your sister Caroline?" With no hesitation, Willie said, "Caroline is Snow White!"

So there you have it. To my brother, I am a Disney princess. He may not be able to say things like, "Caroline, I look up to you," or, "Caroline, I'm glad you're my sister," but he can cast me in a starring role in the movie of his mind.

I may not be able to see all I'd like to see of my brother's mind and heart, but what I can see is astonishing. He's creative, and hilarious, and generous with his casting.

***

One day, as I was walking home in Washington, DC, I passed a family on the sidewalk. Mom, dad, grandma, teenage guy, walking and smiling. And I passed I noticed that the teenager had some form of physical (and perhaps intellectual) disability.

In that moment, I felt such a strong combination of feelings: happiness that this family was out on the town together; sadness for the experiences of ostracism and prejudice that this teenager and his family have undoubtedly faced because of his disability; grief at the way that they're not supported by society as a whole, because the rest of society sees themselves as 'whole'...

...and then a bittersweet joy, because I can only imagine the kinds of amazing gifts this guy has to share.

I was almost in tears...simply from seeing a stranger's face. And that illustrates my passion perfectly: to seek out the treasures in each person, and illumine those treasures through story.

To write and fight and wore and strive for a world in which we celebrate people not just for what they can and can't do, but for who they are and how much they are able to love.

And that's what [Love's Subversive Stance] is about: assuming the subversive stance of loving people--including ourselves--for exactly who we are.

Such acceptance is radical; such relationships are rare. Yet I know that it is possible to love without agenda. It is possible to say to someone simply, "I love you, and I celebrate you. I will walk alongside you as you grow and change, but I won't put pressure on you."

***

At times I wonder what my life would have been like had I not been like had I not been Willie's sister. I know my parents have wondered the same thing: what would life have been like for us, for him, if he had not been born with autism? I cannot deny that it has been a difficult road for us. Yet I cannot bring myself to wish for a different path. It does no good for me to speculate and compare my brother to imaginary, non-autistic brothers I 'might' have had.

What can I do? I can accept our life as it has been, and celebrate what holds us together. In doing so, I'm learning to reject comparisons and embrace what is. And what is is downright puzzling. It calls into question all my old assumptions.

At times I wonder how much of the pain of my brother's disability has come from autism itself, and how much has stemmed from the distance I have felt between him and the rest of the world. As a society, we don't believe that people with disabilities have incomparable gifts to offer us. We don't believe that people with disabilities can teach us about overcoming adversity, and what it means to be whole in the midst of brokenness. And this is our loss.

At times I feel like my brother's defender, as though I was meant to be his protector against the prejudice of the world. And it's true-- this is a way of living him and advocating for him. Sometimes, that may mean standing up for him. It may mean asking a dear friend not to use the word 'retarded.' It may mean speaking at budget hearings and advocating on his behalf and that of others like him.

Yet most often, keeping the faith means simply being there for him in the day-to-day matters, in the ordinariness of life. For example, I've committed myself to calling him weekly, to being a part of his routine. The most important testament of my love for my brother isn't in my words. It's in how I relate to him. It's in a willingness to do things that benefit him. It's picking up his medications for him or calling him or attending his piano lesson when I'm home, to see him shine.

Standing in solidarity with Willie is the boldest statement I can make. I'm saying: not only is my brother worthy of love and belonging, not only is he uniquely gifted...he's akin to me, and he's my friend.

***

This guest post is from Caroline McGraw. Caroline is a would-be childhood paleontologist who digs for treasure in people with autism and intellectual disabilities at A Wish Come Clear (http://www.awishcomeclear.com), and empowers caregivers to do the same. This post is an excerpt from her recently released book, Love's Subversive Stance: Ground Yourself & Grow in Relationship (http://www.awishcomeclear.com/blog/loves-subversive-stance) which is available in both print and digital format. Her first book, Your Creed of Care: How to Dig for Treasure in People (Without Getting Buried Alive) is available for free to those who receive posts via email at AwishComeClear.com

Advocating For A Change: Winning a National Autism Award

2012-11-11T21:25:00.002-05:00

*First, I wanted to send my best out there to those families out there on The East Coast that have been affected by Hurricane Sandy. My family and I who live in Jersey City, New Jersey ended up with very minimal damage. The main thing for us though was that no one was hurt. For those out there, please know though that we will need your help as we slowly help rebuild our Tri-State area that was severely impacted. Thank you all very much and I hope you enjoy this new post!*

About a week and a half ago I found out that I was the recipient of The Margaret L. Bauman M.D Award for Excellence in Serving the Autism Community. It was a pleasant surprise to say the least and it gave me the wonderful opportunity to attend The "Current Trends in Autism Conference" located hosted by The Autism Research Foundation in Burlington Massachusetts last weekend.

I never had attended a conference in the past that seemed like this one. This was a conference with so much positive energy and provided a family like atmosphere throughout. I was blessed to be there but also blessed to be recognized for advocating for those within our community.

*Me and Margaret L. Bauman at The Current Trends in Autism Conference Award Ceremony*

While there I got to not only meet Margaret L. Bauman (Founder of The Autism Research Foundation) who the award was named after but I also got to meet Margret Ericdottir, The Director of The Golden Hat Foundation. Being at a conference with these individuals was just extraordinary.

When it was time to receive my award, I had planned a few words out of reflection of my journey to this point and what advocating has not only meant for me but what it can for our loved ones. This is what I wrote...

"It is such an honor to be here today to receive the Margaret L Bauman M.D Award for Excellence in Serving the Autism Community in the category of outstanding advocate.

To be honest, an award like this comes with a lot of different emotions because of my past. When I was very young I never thought I’d be standing here where I am today.

You see growing up I had severe sensory integration dysfunction issues where things like wind, rain, water, basically everything around me was a component for a new issue that could arise. To add to this I was also nonverbal till I was 2.5 years old. My parents were fully aware of these challenges and tried the best they could to support me and help me progress. After a while though it just became apparent that action needed to be done. This was when almost a year and a half later I got diagnosed with PDD-NOS. My parents had never heard of PDD NOS before let alone autism. The only mention they ever heard of it was that some of those children ended up institutionalized.

This was a life they never wanted to see for their son. As the years went on after my diagnosis my parents become the best two advocates a kid could ever ask for. At the time autism was still very unknown in the early 90’s but that didn’t stop them from fighting. Trial and Error became the mantra in our household. We tried everything that seemed possible through early intervention until things began to click. We got me involved with a Pediatric OT at home along with Occupational/Physical/Speech Therapy as soon as I started Pre-School. I would continue these therapies in a special ed setting right until graduating from High School.

During that time though I always couldn’t believe the passion my parents showed for me to fight for me and to put me in situations where if I didn’t succeed the first couple of times In something they still loved me regardless. Their goal for me, what they always wanted for me was to progress each day and live a life as Kerry and not a life revolved around a disability.

Needless to say 20 years after I was first diagnosed I am happy to say I’m a proud autistic individual who is a college graduate and currently pursuing a masters in Strategic Communication at Seton Hall University. I could not phathom this even being a reality a few years ago. Getting to college was always my dream but to see that not only 1 but 13 different colleges would take a chance on me meant to me that the thousands of hours of therapy had paid off.

If we are being fair, the outstanding advocate award really deserves to go to my parents because without them I’m not sure if I would be able today to advocate for the thousands of autistic individuals and parents since I’ve started consulting full-time. In May 2011, I become a professional national motivational speaker and have traveled the country to help those individuals with disabilities conquer their dreams by sharing my experiences. Also last year I won the Autism Society of America Outstanding Individual with Autism. Today I am involved with Autism Radio, Autism After 16 and Autism Speaks. To advocate for those in the autism community I also established a personal blog called myautismmyvoice.com to share my experiences in the pursuit of helping others without a voice. It has been one amazing journey.

But, to be fair here, the outstanding advocate award today really deserves to go to my parents because without them I’m not sure if I would be able today to advocate for the thousands of autistic individuals and parents since I’ve started consulting full-time through my organization KFM Making a Difference. They have set me up with an unbeatable blueprint on how to advocate and be there for others. And that blueprint starts with acceptance. Can I say that every autistic individual will get to college? No. Can I say that every autistic individual will be able to speak. I can’t…

What I can promise you though is that the same way my parents have looked at me for my entire life is the way I hope we all look at our autism community and that is as people who are no less than anyone else. Because make no mistake autism is a broad spectrum but one characteristic that should always shine through is love. No one deserves to have their tunnel blocked off because of who they are and what they have. We should encourage and always focus on opening that tunnel with your passion and your love so the lights in our autism community always shine through.

This is what I plan to do to advocate for those on the spectrum for years to come and I hope you will do the same. I am proud to stand here today as an autistic adult knowing full well that it is the work of all of you dedicated to helping us in the autistic community be all that we can be. Because the truth is kids do grow up and we have to be ready for them."

Keep making a difference all and thanks to everyone involved with this conference for doing what you do!

Please Help Me Reach 10,000 Likes

2012-09-19T17:05:00.003-04:00

Hey everyone, so as some of you know already I'm working on 2 books simultaneously, a short story based on the motion picture Joyful Noise, A documentary on living with autism and getting Non-Profit status for my disability advocacy/housin

g organization while finishing my Masters at Seton Hall this fall.

With all this being said I'm going to be pushing a HUGE marketing campaign to get the word out about all these projects for 2013. With that being said, I've set a goal out for myself to reach 10,000 fans on my fan page here by the end of the 2012. If I've been able to help in the past with mentoring, consulting, or just if you've enjoyed some of my past projects I'd be FOREVER grateful if you could help spread the word about my latest goal and encourage everyone to check out/like my fan page at:https://www.facebook.com/kerrymagro88.

Thank you, thank you, thank you so very much! God bless all! :)

"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has". ~ Margaret Mead

I Am Participating for Walk Now For Autism Speaks!

2012-09-06T20:59:00.001-04:00

Please help support my efforts as I walk for my 6th year for Walk Now for Autism Speaks! 1 in 88 individuals today are diagnosed with autism and every 11 minutes now another family receives the news that their child has an autism spectrum disorder.

You see, I have a lot of wishes for our community out there but one of my biggest wishes is for a day where words such as sensory integration dysfunction, institutionalized and nonverbal, will become extinct and be replaced with words such as higher education and living independently. I know this may seem like a pipe dream but there is no time better than the present to try and make a change. With your support we CAN and WILL make a difference for our loved ones! To donate to this worthy cause please check out my personal page here:http://www.walknowforautismspeaks.org/ncnj/kerrymagro

God bless you all for your help and support! Please (share) this post if you believe in Pro-Progress and have loved ones who may be able to help the cause!

Best Wishes, Kerry

Our Autism Scholarship Promo

2012-09-03T09:30:00.000-04:00

Last Saturday during some free time I wanted to do a quick promo video to spread awareness for our "Making a Difference for Autism Scholarship Program". A few weeks ago, I announced that through my organization called "KFM Making a Difference" we would be starting an inaugural 500 dollar scholarship for individuals with autism pursuing college for the 2012-2013 school year! All scholarship applications are due on November 30th! For more information please check out the promo video below!

Hope everyone had a wonderful Labor Day! For any scholarship inquiries please contact our organization at KFMMakingADifference@gmail.com or through our Fan Page on Facebook Here!

Promo Video: Announcing a $500 Dollar Autism Scholarship Program

Hope For The Autism Community: My Story

2012-08-29T09:22:00.000-04:00

In this video I share my journey on the autism spectrum through 3 poems I've wrote about my life.

Hope For The Autism Community: My Story

Inspirational Autism Quotes For Our Community Pt. 2

2012-08-20T08:32:00.000-04:00

We all need some inspiration at times. That's why for this video I collected some quotes relating to our autism community. I hope that you can share this video with others and that it gives them hope when they watch it. The main constant I always stress is that you are never alone within our community and to stress that people are amazing just the way they are!

I hope you enjoy the video. You can see the original Inspiration Autism Quotes for Our Community video here. Thanks everyone!

My Autism My Voice Episode 101: Inspirational Autism Quotes For Our Community Part 2

Guest Post: "My Autism, My Journey"

2012-08-14T09:37:00.000-04:00

This Guest Post comes from Alex, an adult on the autism spectrum. Do you have a story that you want to share about autism? If so why not submit a guest post? If interested please check out the guidelines here.

My name is Alexandra Karsesnick, I am 22 years old, and I am currently attending a community college in Pittsburgh, Pa. I am majoring in Education Paraprofessional (Teacher's Aide). The reason I chose this field is because I want to work and make a difference in helping someone who is struggling with autism. I am one of those people who is on the autism spectrum. Here is my story before I became the person I am today:

I was just your average toddler that learned how to walk and how to talk. That was me then when I learned how to say momma and dada. After the vaccination, it came to a halt, in other words I stopped talking, never made any eye contact to anyone. If I want something, I yell and scream until I get what I want. My parents did not know what was wrong with me, they thought I was spoiled by them and my three older sisters, which I was. I started talking when I was 3 or 4 and I was never toilet trained until I was five or six. From there, my dad knew that there is something wrong with me, but my mom did not want to believe it. My kindergarten teacher suggests that they should take me to Children’s Hospital to be tested to see what was wrong with me. The doctor diagnose me Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), a form of autism, at the age of six. The doctor explained the definition of the disorder to my parents but they did not tell them about early intervention or anything. My parents did not believe in therapy that would help me because they re-teach you how to be a proper parent to your child with autism. If I was diagnose with severe autism, then therapy would be necessary. In spite of my diagnosis with autism, my parents continued raising me and they never treated me differently. The only therapy I had from them, was love.

In order to communicate with others, I repeat lines from an actual tv show or a film so I could communicate with everyone, which is called scripted communication.

Throughout the years in school, I did not have many friends. The only friends I have are my parents who I trust very much. When I was in 5th grade, I came to Chartiers Valley and I was the victim of bullying due to my disorder. I really did not like going to school at all when I was a child. I was scared of getting made fun of and I've been called awful names because of different from them. It was very hard for me and heart breaking for my mother. After that ordeal, I moved back to Fort Cherry from 7th to 10th grade. Like I said, I did not have many friends there. Being a teenager and autistic is a very difficult mix to deal with. I was not even happy with myself because I keep thinking that my peers doubted me because I’m autistic and I’m not in their group of friends. I also felt that I’ve been taking advantage by them due to my communication difficulty. Nowadays, I see teenage girls talk about what they did over the weekends, like going to the movies, hanging out with friends at the mall, etc. I think it makes me sad and it’s also depressing because I was isolated by everybody so they won’t take advantage of me and my parents worries about me of who I'm hanging out with and all. Every day I wish that I could snap my fingers and make autism go away from my life and be normal like everyone else, but unfortunately I can’t do that. Autism is who I am for the rest of my life.

After 10th grade, I went to live with my parents. I did not want to go back to Chartiers Valley because I did not want to be bullied again. So my parents put me in Cyber School and it only lasted 6 months. I dropped out when I was 17 years old and I did not go to school at all for a year and a half. I did look for work, but it’s hard to find work without a high school diploma. I decided at the age of 19, I’m going back to school and get it over with. At the age of 21, I finally receive my high school diploma with excellent pride that I earned. After graduation, I took a six month break from school. All I did was hang out with my friends and family and did some babysitting.

I am currently a student at Community College of Allegheny County (CCAC) to work on my Associate's Degree to become a Teacher's Aide. My goal to become a paraprofessional is to work and make a difference in helping students who is on the Autism Spectrum in middle school and/or high school level. I just want them to see me as an individual with autism, if I can do it and be successful, they can too.

In order for me to continue my journey as an adult with autism, I want to spread awareness to anyone who is interested in working with someone with autism. Also, not only I want to help individuals with autism, I want to help parents who has a child with autism and tell them you are not alone. I have a very strong support system from my family, close friends, and teachers that I know in school. Without them, I wouldn't become the person I am today.

I hope you enjoy my story. Thank you!

~ Alexandra Karsesnick

Speaking on Starting a Scholarship for Individuals with Autism

2012-08-09T09:32:00.000-04:00

I had the amazing opportunity to partner with a Real Estate Investing Office in my hometown of Jersey City, New Jersey in "Team Jerzy". They were holding their Grand Opening for their firm and during the event we were also able to fundraise towards my Non-Profit Organization called "KFM Making a Difference"! The fundraiser was going specifically to helping fund an autism scholarship for individuals with autism pursuing college in The Fall. With that, I even was allowed to speak for a few minutes on my group and the cause!

The video is below! Let me know what you think. You are more then welcome to contact me here if you would like to learn more about our organization and what are goals are for the future! Hope all is well all!

Adult with Autism Speaking on Starting a Scholarship for Individuals with Autism

Please Help Paul Corby Get a Life Saving Heart Transplant

2012-08-07T22:44:00.003-04:00

I don't think I would do this story justice as I'm still very speechless. Instead, I encourage everyone to read this blog here about a 23 year old with autism who is being denied a heart transplant because, in part, because of his mental disability.

I would then if you want to help ask you to sign the mother's petition here to help with the cause.

Finally, I've done a video, which has taken me countless takes to finish but the video below explains my thoughts on what this story means to me. Thanks so much everyone!

Please Help Paul Corby Get a Life Saving Heart Transplant

Help Start a New Autism Scholarship Program!

2012-08-06T22:15:00.003-04:00

"Act as if what you do makes a difference. It does" - William James

Autism was first introduced almost 100 years ago and today affects 1 in every 88 individuals. While 500,000 young autistic individuals will reach adulthood within the next decade, countless others have already reached that plateau today. For those individuals who will attend college, many of them must go out of pocket due for additional services to the lack of disability supports available across the nation. These extra costs go to things such as assistive technologies and special accommodations that most public/private universities won't provide for their students.

With that being said our Non-Profit (KFM Making a Difference In The Community) is starting one of the only scholarship programs this Fall for autistic individuals pursuing a college education to help with these financial burdens. If you can donate even a dollar to the cause it would be greatly appreciated! To donate please contact me at kerrymagro@gmail.com or via my paypal account which is located on the right side of my website here!

Bonus Event! This Wednesay, August 8th, please join us for one of our first autism charity events for the scholarship! We are hosting an event in Jersey City, New Jersey from 6:30-8:30 PM on 930 Newark Avenue (6th Floor). Food and Drinks will be served along with a raffle with all the proceeds going to our Non-Profit for the scholarship! For more information you can find our event on Facebook Here and on Eventbrite Here. You can also tweet any questions you have about the event at #Grandopenjc

Please, if you can, share this event as we try to help make a difference in the lives of those affected by autism! God bless all!