News about girls with autism

Reposting from HealthDay News... Something we should all keep in mind. As I've always said, one size does not fit all...and as it is often said, "when you've met one person with autism, you've just met one person with autism." Not all treatments work for everyone!
Blessings!
DC
Girls With Autism May Need Different Treatments Than Boys

New studies highlight variations in symptoms, genetic makeup

WEDNESDAY, May 1 (HealthDay News) -- With four to five times more males affected by autism spectrum disorders than females, much less is known about girls with autism.

Fortunately, more research is beginning to focus on autism in girls, said Geraldine Dawson, chief science officer of Autism Speaks, with two such studies set to be presented Saturday at the International Meeting for Autism Research in San Sebastian, Spain.

"Autism affects boys much more frequently than girls. But, we may be missing some girls. The diagnostic criteria were developed using symptoms in boys, and symptoms in girls and boys may be different," Dawson explained.

"Because of this difference in incidence, researchers may end up with a small number of girls in studies," she said, adding that differences in symptoms or reactions to treatments may lead to the girls' data being excluded from studies. But, it's just those differences that may really need to be researched, to make sure girls are being diagnosed and treated correctly.

"Other neuropsychiatric disorders have already made the discovery that symptoms can be different in girls and may require different treatments for girls," said Dawson, who is also a research professor in the department of psychiatry at the University of North Carolina, Chapel Hill. One such example is attention-deficit/hyperactivity disorder. Girls tend to be less hyperactive than boys, and may instead appear as if they're daydreaming.

In the latest autism research, the first study compared visual scanning patterns in boys and girls with autism spectrum disorders. Scanning patterns were also collected for typically developing children.
"We used eye-tracking technology while the participants in these studies watched videotapes of social scenes that presented naturalistic stimuli," said study co-author Ami Klin, director of the Marcus Autism Center, in Atlanta.

The study, which was led by Klin's student, Jennifer Moriuchi, included 116 school-aged children with autism spectrum disorders. Eighty-one were boys and 35 were girls. The children with autism had varying degrees of social disability. The study also included 36 typically developing children.
"On a surface level, it appears that boys and girls with autism appear to spend equal time learning from the eyes. They did look less than other children," Klin said. But, when the researchers correlated the youngsters' eye tracking with their level of disability, a much different picture emerged.

"In boys, the more they looked at the eyes, the less socially disabled they are. In girls, the more they looked at the eyes, the more disabled they are," said Klin, chief of the division of autism and related disorders at Emory University School of Medicine and Children's Healthcare of Atlanta.

"What the study is suggesting is that we should not automatically assume that boys and girls learn about the world in the same way," Klin said, adding, "we have to take gender as a mediating factor."
Dawson said "the study found that there are differences in the way girls and boys look at the eyes, so there may be differences in the way autism is manifested in girls than in boys." She noted that an important criterion right now for diagnosing autism is a lack of eye contact and using the eyes for social cues.

The second study looked at the genetics involved in autism, and potential differences in boys and girls. Yale University researchers analyzed samples from 2,326 families. Included in those samples were those of 2,017 boys and 309 girls with an autism spectrum disorder.

The Yale team found differences between the boys' and girls' genetic samples.

"The fact that autism does affect boys so much more frequently has been staring us in the face for decades. There's been a hypothesis that there's something in the extra X chromosome that girls have that may be protective," Dawson explained. "The idea is that if you have this protective mechanism in place you may need more risk factors to overwhelm that protective effect and cause autism, and that's exactly what they found."

"To develop autism in a girl requires more genetic mutations," Dawson said. The type of mutations they found are called "de novo" mutations, she added. This means that the genetic change occurs in the sperm or the egg. It isn't a gene that's passed down from the parents. These mutations can occur randomly, or they can be caused by an environmental trigger.

Because these studies are being presented at a medical meeting, the data and conclusions should be viewed as preliminary until published in a peer-reviewed journal.

SOURCES: Geraldine Dawson, Ph.D., chief science officer, Autism Speaks, and research professor, department of psychiatry, University of North Carolina, Chapel Hill; Ami Klin, Ph.D., director, Marcus Autism Center, and professor and chief, division of autism and related disorders, Emory University School of Medicine and Children's Healthcare of Atlanta; May 4, 2013, presentations, International Meeting for Autism Research, San Sebastian, Spain

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Move over Keepon!

My boy and Keepon, his first "fluffy" friend! :)

Hi everyone! A while back I wrote about Keepon, a cute little animated yellow puff ball that my little man totally fell in love with and became the first "doll" he enjoyed! In my opinion, Keepon helped unlock my son's interest in dolls/stuffed animals by engaging his attention, stimulating eye contact and interactions. Poor Keepon was dragged into bed, taken to the bathroom, rolled all over the floor, banged, tapped, hit, kicked... all just to see his adorable reaction to my son's every move. At first it was extremely hard for me to believe that a yellow plastic blob could elicit such a response from a child on the autism spectrum, but it did! Now in the news we read about Kelly! Check out the story:

Kelly the Robot Helps Kids Tackle Autism

Small study found they tended to do better at developing social skills when this 'co-therapist' was used

Wednesday, May 1, 2013

WEDNESDAY, May 1 (HealthDay News) -- Using a kid-friendly robot during behavioral therapy sessions may help some children with autism gain better social skills, a preliminary study suggests.

The study, of 19 children with autism spectrum disorders (ASDs), found that kids tended to do better when their visit with a therapist included a robot "co-therapist." On average, they made bigger gains in social skills such as asking "appropriate" questions, answering questions and making conversational comments.

So-called humanoid robots are already being marketed for this purpose, but there has been little research to back it up.

"Going into this study, we were skeptical," said lead researcher Joshua Diehl, an assistant professor of psychology at the University of Notre Dame in Indiana, who said he has no financial interest in the technology.

"We found that, to our surprise, the kids did better when the robot was added," he said.
There are still plenty of caveats, however, said Diehl, who is presenting his team's findings Saturday at the International Meeting for Autism Research (IMFAR) in San Sebastian, Spain.

For one, the study was small. And it's not clear that the results seen in a controlled research setting would be the same in the real world of therapists' offices, according to Diehl.

"I'd say this is not yet ready for prime time," he said.

ASDs are a group of developmental disorders that affect a person's ability to communicate and interact socially. The severity of those effects range widely: Some people have mild problems socializing, but have normal to above-normal intelligence; some people have profound difficulties relating to others, and may have intellectual impairment as well.

Experts have become interested in using technology -- from robots to iPads -- along with standard ASD therapies because it may help bridge some of the communication issues kids have.

Human communication is complex and unpredictable, with body language, facial expressions and other subtle cues coming into the mix, explained Geraldine Dawson, chief science officer for the advocacy group Autism Speaks.

A robot or a computer game, on the other hand, can be programmed to be simple and predictable, and that may help kids with ASDs better process the information they are being given, Dawson said.
"Broadly speaking," she said, "we are very excited about the potential role for technology in diagnosing and treating ASDs." But she also agreed with Diehl that the findings are "very preliminary," and that researchers have a lot more to learn about how technology -- robots or otherwise -- fits into ASD therapies.

For the study, Diehl's team used a humanoid robot manufactured by Aldebaran Robotics, which markets the NAO robot for use in education, including special education for kids with ASDs. The robot, which stands at about 2 feet tall, looks like a toy but it's priced more like a small car, Diehl noted.

The NAO H25 "Academic Edition" rings up at about $16,000. (Diehl said the study was funded by government and private grants, not the manufacturer.)

The researchers had 19 kids aged 6 to 13 complete 12 behavioral therapy sessions, where a therapist worked with the child on social skills. Half of the sessions involved the robot, named Kelly, which was wheeled out so the child could practice conversing with her, while the therapist stood by.

"So the child might say, 'Hi Kelly, how are you?'" Diehl explained. "Then Kelly would say, 'Fine. What did you do today?'" During the non-Kelly sessions, another person entered the room and carried on the same conversation with the child that the robot would have.

On average, Diehl's team found, kids made bigger gains from the sessions that included Kelly -- based on both their interactions with their therapists, and their parents' reports.

"There was one child who, when his dad came home from work, asked him how his day was," Diehl said. "He'd never done that before."

Still, he stressed that while the robot sessions seemed more successful on average, the children varied widely in their responses to Kelly. Going forward, Diehl said, it will be important to figure out whether there are certain kids with ASDs more likely to benefit from a robot co-therapist.

Dawson agreed that there is no one-size-fits-all ASD therapy. "Any therapy for a person with an ASD has to be individualized," she said. The idea with any technology, she added, is to give therapists and doctors extra "tools" to work with.

A separate study presented at the same meeting looked at another type of tool. Researchers had 60 "minimally verbal" children with ASDs attend two "play-based" sessions per week, aimed at boosting their ability to speak and gesture. Half of the kids were also given a "speech-generating device," like an iPad.

Three and six months later, children who worked with the devices were able to say more words and were quicker to take up conversational skills.

Dawson said the robot and iPad studies are just part of the growing body of research into how technology can not only aid in ASD therapies, but also help doctors diagnose the disorders or help parents manage at home.

But both Diehl and Dawson stressed that no robot or iPad is intended to stand in for human connection. The idea, after all, is to enhance kids' ability to communicate and have relationships, Dawson noted. "Technology will never take the place of people," she said.

The data and conclusions of research presented at meetings should be viewed as preliminary until published in a peer-reviewed journal.

SOURCES: Joshua Diehl, Ph.D., assistant professor, psychology, University of Notre Dame, South Bend, Ind.; Geraldine Dawson, Ph.D., chief science officer, Autism Speaks; May 4, 2013, presentation, International Meeting for Autism Research, San Sebastian, Spain

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Health News Copyright (c) 2013 HealthDay. All rights reserved.

URL of this page: http://www.nlm.nih.gov/medlineplus/news/fullstory_136419.html (*this news item will not be available after 07/30/2013)

30 reasons why I wore blue for 30 days:

As most of us know, April is autism awareness month. Many of us joined the "Light it Up Blue" campaign by Autism Speaks by wearing blue and/or turning on a blue light on April 2nd. Well, this year I decided I'd take it up another notch and I made a pledge to wear blue all 30 days of the month of April. Here are my 30 reasons why... not in any specific order, each just as important as the next:

1. Because my son is not missing any pieces. I'd rather wear the blue than a broken puzzle.

2. Because on most days it's just me & my boy for hours on end. Wearing blue helped me feel connected to a bigger community. Each time I looked at the blue I knew I was not alone.

3. Because wearing blue for 30 days straight wasn't easy or fun! Then again, it was nothing compared to how hard my boy has to work every single day of his life!

4. Because I am proud of my son and I want the world to know it. Go ahead: ask me what's up with all the blue!

5. Because I wanted people to ask--I welcome every chance to educate people about the whole spectrum of autism.

6. Because it became contagious-- colleagues at work and family members joined in my cause and helped spread the word.

7. Because autism is not a bad word or something that should be hard or unpleasant to talk about-- the more we talk, the easier it gets for everyone, including my son.

8. Because ignorance creates fear. My son is NOT someone to be feared! The better you understand ASD, the quicker you will realize that your life is made better by having my son in it!

9. Because planning what to wear was quite challenging-- it made me think of the many times my boy faces a task and doesn't even know where to begin! Really, something as simple as picking out clothes should not be so hard...neither should just talking to another child at school!

10. Because I ended up having to buy a few pieces-- I got to tell every cashier about autism-- more education!

11. Because autism awareness is not just a one day or one month thing-- we should work hard each and every single day to educate people about autism so our loved ones with ASD will find greater tolerance as they go through life.

12. Because my son is NOT Rain Man, nor does he have a special genius skill-- other than endless amounts of love!

13. Because I wondered what it would feel like to always wear the same color every day-- would I find comfort and peace in sameness like my son? (no, I did not)

14. Because I felt different from the people around me-- like my son must feel so much of the time-- not LESS, just DIFFERENT... sometimes even special!

15. Because so often I feel helpless when it comes to my son's difficulties at school-- wearing blue helped me feel like I was doing something!

16. Because it gave me the opportunity to be pleasantly surprised by the people I expected the least to join the cause by wearing blue, making donations or  turning on a blue light

17. Because even though I may have sounded like a broken record, I know everyone around me now stops and thinks--and even shares--when they see a blue puzzle piece

18. Because my little guy is breaking all sorts of stereotypes and I want the world to know it!

19. Because early intervention works! The more people know, the sooner kids' symptoms may be spotted and they can start getting the help they need.

20. Because blue does not equal sadness.

21. Because the blue reminded me to stop and pray for my son each day!

22. Because blue makes me feel peaceful.

23. Because blue makes me think of the ocean-- just for a few minutes each day my blue clothes would remind me to close my eyes, take a deep breath and picture myself in a blue sandy beach! Paradise!

24. Because it helped me make new friends by finding other moms out there to connect with!

25. Because I have earned the right to wear blue!

26. Because it seemed like fun to begin with!

27. Because it helped me understand my son's view of the world just a little bit better.

28. Because it was nice to focus on my appearance after not caring for so long.

29. Because on most days it made me feel pretty!

30. Because I love my son with the very essence of my being!

Will you join the cause?


Blessings!
DC

A message of peace and hope

I mentioned in my last post that the Greater Boston Area has been in a surreal "Twilight Zone" state of mind in the past few weeks. I will not give details, because I am sure just about every single person has learned of the horrific events at the 2013 Boston Marathon on Patriots' Day, Monday, April 15th. What I will say is that I have a new sense of immense pride for my state, my city and my pastor! Dr. Roberto Miranda is the Senior Pastor at Congregation Lion of Judah in Boston. Congregación León de Judá, to be exact, since it is mostly a Spanish-speaking congregation. This is the same church of which I have written so many times in regards to the special needs children's ministry. God led us to this place of worship after a difficult decision to leave our previous church after over a decade. I was pregnant with our little baby boy and we were a bit like Nomads.

Pastor Miranda is a family friend, in so many senses of the word! I have known him since my childhood, my parents knew him and his wife before they were married (matchmakers?!), he was my husband's beloved pastor in adolescence (such a critical time in any boy's life) and Dr. Miranda's grandson, was my little guy's first and only best friend! At our house we just know him as "Pastor Roberto," as the little man calls him. It seems almost irreverent to call him that after what I have to share.

Dr. Roberto Miranda was one of only a handful of faith leaders asked to speak at the recent interfaith service in the city of Boston titled "Healing our City." I have watched this video over and over and each time I pick up a new word, phrase or idea that is so inspiring, it fills my spirit with peace and hope. I am humbled to call this man of God my pastor and I feel even more unworthy of calling him our friend... but that's who he is and who he will continue to be. I thank God for choosing Dr. Miranda as His messenger for the city during these difficult times.

Although his message was meant to uplift a grieving city, so much of it applies to our lives as parents and family members of individuals with autism spectrum disorders. Originally meant for those who were hurt or lost loved ones, this portion seems especially poignant for newly diagnosed families:
"We do pray that they also may receive the grace to look beyond this moment of suffering and to believe their life is far from over. That they can rise beyond their pain and their loss to become spiritually stronger and more agile. That they can find fullness of life, happiness and personal realization in the new normal that they now inhabit. May they never allow bitterness or hatred to linger more than a brief moment in their soul. May they receive that peace that passes all understanding." 

Blessings!
DC

For a full transcript of the sermon please click here.

Excellent article about the upcoming changes to the DSM-5

Hello everyone-
This past week has been a surreal "Twilight Zone" experience in the state of Massachusetts. I will write something more poetic about that later... Today I was reading the weekly newsletter from the Autism Support Network and saw an extremely well written and informational article written by Michelle Garcia Winner, creator of the Social Thinking curriculum (click here for more details on Social Thinking).

You see, as my little guy gets older and his language has started to explode, I am seeing more of an Asperger's Syndrome profile than high functioning autism or PDD-NOS. I don't bother telling people that, since soon none of that will matter... We will now have one large umbrella for Autism Spectrum Disorders with various degrees of impairments. So, does it really matter whether I say my son has high functioning ASD, PDD-NOS or Asperger's Syndrome? THAT is exactly what this article is about. I highly recommend that you read it and learn about the upcoming changes and what they may mean for you and your family or loved ones with ASD.

http://www.autismsupportnetwork.com/news/proposed-dsm-5-changes-regard-asd-3478294

In the meantime, my little guy will just be my little guy. He has been struggling with behavior regulation lately and it makes us stop and think.

I will quote something I wrote to a friend in an email:
We are so worried about "his level of aggressions and his explosive outbursts. He is getting bigger and stronger and we can't let this continue. The worst part is that afterwards he feels SO guilty that he will cry until he either throws up or passes out asleep. It is absolutely heartbreaking! Every day I wait for the phone call from school.
It is really hard to explain to people that we are considering medication for our 5-year-old, but both my husband and I lie awake at night worrying about Nathan seriously harming himself or others... and the consequences of that. Nathan is so incredibly kind, sweet, loving and smart but the rest of the world doesn't see that side because of his sensory and behavioral difficulties. Unfortunately, we can't keep him home in a comfy bubble his whole life. We have to help him be able to function and be a active member of society-- showing others at least a little bit of who he really is and what he can really do. But he needs help to do that and we welcome any/all of your prayers for him/us."

Today in my devotional, I found Joshua 1:9, "Have I not commanded you? Be strong and of good courage; do not be afraid, nor be dismayed, for the Lord your God is with you wherever you go." I often read this passage to my little guy, reminding him that God is with him and that he can ask God for help in any situation. We welcome all of your thoughts and prayers.

Blessings!
DC

Beautifully written with love and honesty

Hello everyone!  I read this story on the Autism Speaks blog a few months ago and found tears streaming down my face. As time passes we become more and more afraid of Nathan's strength and his inability to control his behavior at times. Many a night I sit in bed worrying about his future, our future, if we can't get these under control. He is SO remorseful after it happens, but he just can't interrupt his neurology to stop in the moment. I remember my sister's birthday celebration this past fall, where Nathan had an unusual freakout/meltdown (the kind you don't forget...ever...). I just kept apologizing to everyone and their words to me were, "We love Nathan and accept him just the way he is." I guess that's why this story hit home at the time. Time has passed and his behavior has improved with us at home and in the community, but school is still such a struggle! I share this with you now, with the hopes that it will help you find peace in the midst of your struggles.

Blessings!

About the author: Caroline McGraw is a would-be childhood paleontologist turned storyteller, digging for treasure in people with autism and intellectual disabilities (and empowering caregivers to do the same). Caroline blogs at A Wish Come Clear, serves as a columnist and features writer for Autism After 16, and works as a copywriter for non-profits and small businesses with a special needs support focus. Readers are invited to receive a complimentary copy of Caroline's digital book, 'Your Creed of Care: How to Dig for Treasure in People (Without Getting Buried Alive)' via A Wish Come Clear. 

From Helplessness to Courage: A Sister's Story

Posted: 07 Nov 2012 12:55 PM PST

It is my first memory, the one that will be in my bones when they are but dust. I stand in a white room with a high ceiling. Sunlight comes in through the windows, making patterns on the rug. The rug is faded where the light strikes it. Children my age are playing on jungle gyms, yet I do not move to join them.

Suddenly I’m in my mother’s arms, and she’s holding me tightly; my hair is wet with her tears. What's wrong? I have no idea. As my mother lets me go, she speaks to a woman at her side. They mention my brother’s name, saying words I don’t know yet:  Autism Spectrum Disorder. Diagnosis.
I’m four years old. My brother Willie is two. I don't understand any of this, of course, but I know that my mother is weeping and I want to comfort her.

Years pass. I finally ask my mother if the room I remember so vividly was, in fact, real. She looks at me with astonishment in her eyes. “You remember the diagnostic center? With the jungle gyms and the high ceilings?”
I do remember, because she reached out for me.
***

Fast-forward thirteen years, and Willie – my hilarious, gifted, beloved sibling – starts struggling with self-injury and aggression on a daily basis. I cry out:  Where is my brother? This unfamiliar person punches holes through walls and bites himself.

Our house feels like a war zone. In desperation, I beg my parents to send Willie away. We talk about it for a time, but ultimately, my mother says, “No. I can't,” and my father agrees. Even though a part of me is furious with them, another part of me sees how powerful, how beautiful, their choice is.
My parents, like so many others, refuse to give up on their child. And in these dark hours, the love that sparks that choice is the only light I see.
***

Today, I listen as my mom describes Willie's latest meltdown. He's been doing well, so this unexpected episode has been particularly challenging. He's hurt himself, and my mom as well.
I watch my mother weep. I hear her say that she feels like a failure. I am tempted to close off, or get angry … anything to avoid feeling as helpless as I feel right now. Why can't my brilliant brother stop hurting himself and others?

My first memory is shaded with this same helplessness and confusion. But now, thanks to my parent's example, I take courage. I can't give my mom the answers we both long to hear. What I can do, however, is tell my mom my truth:  Angry and afraid as I am, I still love and accept Willie. And I tell her that she's an amazing mom, the farthest thing in the world from a failure.
She reaches out her hands, saying, “Thank you, sweetie.” Nothing is different, yet everything has changed.

1 in 50... Can that be right???

Here is a wonderful article written by one of my favorite authors who happens to be an adult diagnosed with Asperger's Syndrome. Thank you to my sister, Chely, who bought me his first book, Look Me in the Eye. This article (below) was published on the website for Psychology Today and shared on the Autism Speaks weekly blog. It is definitely worth reading. Is 1 in 88 now 1 in 50? Let's see what John says:

Autism Prevalence: Can It Be 1 in 50?

Thoughts on the latest autism prevalence news, and what it means to us

Published on April 9, 2013 by John Elder Robison in My Life With Asperger's

 

One of the first presentations at today’s IACC meeting explained the recent NCHS survey that found a 1 in 50 prevalence of autism in American school children. Stephen Blumberg from CDC and Michael Kogan from HRSA presented their findings and answered questions. There has been a lot of talk about this study in the media these past few weeks. I was happy to have a chance to ask the project leaders some questions about their work.

One of the most significant points the researchers made was this: Their research methodology differed quite a bit from the CDC methodology that led to last year’s 1 in 88 report. That makes it impossible to compare the studies – and their results – directly. However, we can compare this study to itself, since it was done before, in 2007. The methodology between 2007 and last year did not change, yet the observed prevalence rose dramatically (1 in 90 rose to 1 in 50). Both researchers felt this change from one survey cycle to another was significant.

But does it signal growing awareness, or something else?

The researchers found that roughly a third of the autistic kids identified were diagnosed after the 2007. Yet those kids were old enough to have been included in the original 2007 survey. Why weren’t they counted last time? Presumably, they were unrecognized. In response to my question, the scientists agreed that the National Survey of Children’s Health picked up “educational autism” whereas the ADDM survey looked at medical records and only uncovered “medical autism.” It’s no surprise that identified prevalence would vary when two different definitions are used.

Both studies returned valuable, valid findings. The actual number of people with autism may lie somewhere between the two study figures. Some parents see issues with their children, and talk to their pediatrician. That conversation may lead to formal autism screening and diagnosis. Armed with that information, parents request services from their schools and their health care provider.
Other times, parents don’t notice, or don’t take action. School staff notices abnormalities. Tests are done, and kids are diagnosed with autism in the school. The result: those kids are provided with educational supports yet their diagnosis remains informal; outside the medical system.
How many of those kids would also receive a “medical” diagnosis of autism; one that would be validated by a gold-standard tool like the ADOS? Unfortunately, we do not know. I’m not aware of a study that has made that comparison.

There is a second issue with the NSCH study – that it is based on telephone survey. Workers made thousands of phone calls in their attempt to interview parents, but 75% of the calls were unanswered. When an adult did pick up the phone, the interview completion rate was approximately 54% for landlines, and 42% on cell phones. The comparable rate for 2007 was 66%. When so many people opt out of a study on disabilities in kids, it stands to reason that many simply felt their kids had no issues so there’s no reason to take part. That may well result in a bias toward parents whose kids have issues, and a higher identified prevalence.

So what can you take away from this latest news?
This study, and many others in recent years, highlights the huge and growing number of kids who need special services in school. As the numbers of special needs diagnoses have skyrocketed, school budgets have stagnated. How will we – as a society – address this growing gap between identified need and voter-funded support to address it?

The differences in methodology between this study and the earlier CDC work preclude direct comparison. To me, this latest study confirms what many of us have suspected – there is an explosion of autism awareness, especially among parents – since 2008. That’s a good thing, when it leads to more successful kids. Are there circumstances where it’s not so good? This latest study provides autism advocates with another piece of ammunition to argue for greater funding for services and support. At the same time, we must recognize that opponents of funding increases will use studies like this, and the recent news of ADHD prevalence (mentioned in the NY Times and other media) as justification for another claim: that there is an epidemic of over-diagnosis that should not be matched with increased funding. So the study will be used both for and against the cause of autism advocacy.
The final point I’ll offer is that this recent study is once again limited to a description of autism in kids. Just as we distinguish mildly affected kids with educational autism diagnoses, we might distinguish geeky undiagnosed adults from their more significantly affected adult peers. If this study is a guide, that geeky population who might benefit from some support may be much bigger than previously imagined.

I’ll be interested in your thoughts . . . .

John Elder Robison is an adult with autism. He’s the author of three books on autism and difference – Raising Cubby (2013), Be Different (2011) and Look Me in the Eye (2007)

To read the original article, please visit: http://www.psychologytoday.com/blog/my-life-aspergers/201304/autism-prevalence-can-it-be-1-in-50

Call it Karma? I call it Providence

WOW!!! I can't believe it's been almost two months since I have posted here! It seems my life gets more and more "interesting" as time passes. Just this year we've had deaths in the family, serious injuries, illnesses, weddings, funerals, crises of all types, meetings, fundraisers, medical appointments, you name it! Yet at the end of the day, I always find some time to thank my dear Lord for all of the amazing events in my life, whether good or bad.

Here I am, again, writing and praising God for moving mountains on behalf of Nathan:
I have worked in a wonderful school district for close to 20 years now. I have so often wondered how long I'd be there and have begged God to show me His plans. I won't lie, I have tried to leave, but God has always closed doors and I have remained constant. I cut back on my hours, transferred schools, anything to try to be happy where I was while trying to meet all of demands and needs of being Nathan's mom.

I can't say it has been easy to stay put... but I have learned SO MUCH along the way! I've also met some pretty fantastic people... colleagues who have come to me for help both professionally and personally (for their own children at home). I often thank God for making me the way I am and for guiding me in my every move. He has allowed me to make significant connections with people along the way. I also thank God for giving me the knowledge and allowing me to experience things that I could always use to help others.

I could be here for hours, days, if I started writing about all my attempts to change jobs or paths. Doors have closed and obstacles have stepped in my way, yet what is so remarkable is that each of those events, though painful at the time, have led God to moving mountains for Nathan. To give just a few examples: there's the Early Intervention program where I did my practicum in grad school- upon initial diagnosis, the director offered to see him for free and get the best team possible onboard to help us. There's the OT clinic where I did my internships and worked part-time- Nathan is now seen there up to 3 times a week for specialized services in one of the best clinics in the Northeast (and I have some of the best of their therapists and Nathan is SO loved and cared for just because he is mine). The list literally goes on and on... and just when things looked the bleakest was when God worked the GREATEST miracles (yes, I call them that because there are no other explanations!)

This week we received news that Nathan will be able to go to school in the district where I work. Not only that, but he will be at a school FILLED with so many of those former colleagues I mentioned earlier in this post. These are people who I know will look out for Nathan and keep an extra set of eyes on him to make sure he's OK. I see them as his guardian angels all around him...

As I tell people our story and share these new developments I often hear "it's karma" (getting back based on what I've given). I call it "providence," divine providence. Nathan is living proof that God still works miracles: from conception, to his birth, diagnosis and now his education. My God is a faithful God!!! We have chosen to walk by faith and God has truly been faithful! We may not always get what we want when we ask for it, but you can be sure that what we get is ALWAYS the best! I pray that you, too, will place your trust in Him and feel confident that closed doors are not always a bad thing. Nathan went from being seen as a failure and nuisance to being recognized as an asset and valuable member of a community just by being accepted into this new school district. I know God has miracles in place for you if you put your trust in him, grab on to his hand and take the leap of faith. No faith, no results!

Blessings!
DC

I have not hidden Your righteousness within my heart; I have declared Your faithfulness and Your salvation; I have not concealed Your lovingkindness and Your truth From the great assembly. Psalms 40:10

O Lord, You are my God. I will exalt You, I will praise Your name, For You have done wonderfulthings; Your counsels of old are faithfulness and truth. Isaiah 25:1

25 Random Things About Motherhood, autism-style!

25 random things about motherhood, autism-style: An Update 

This post is by Laura Shumaker, writer and autism advocate. Her adult son Matthew has autism. You can read the first three chapters of her book 'A Regular Guy: Growing Up with Autism' here. Laura writes for SFGate and you can see the original posting here.

Hopeful Parents
 

1) My husband and I planned on having our first child after two years of marriage. Matthew beat us by 2 months.
2) I took Matthew on a job interview when he was eight weeks old because I couldn’t bear to leave him with a babysitter.
3) The first person that told me that Matthew, then three, was developmentally delayed was a speech therapist. She was also the first person who didn’t mention how adorable he was.
4) My husband and I coached Matthew before his next evaluation with a child psychologist. We read him Richard Scary’s Best Word Book Ever.
5) When the child psychologist confirmed that Matthew was developmentally delayed, I thought that meant he could catch up. I really did.
6) Matthew lined up toys and laughed too hard at sprinklers in the garden. None of the booksmentioned this behavior in the milestone department. What was going on?
7) I was angry with Matthew for being stuck on the sprinklers, and the drains, and the lights, and I felt guilty that I was angry.
8 –    When Matthew’s baby brother Andy charmed family and friends with his personality and smarts, my love for Matthew deepened.
9) Andy is now 24. My most cherished childhood memories with him are the walks we took while Matthew was with speech therapist/psychologists/occupational therapists etc.
10) Matthew’s youngest brother, John, was one week old when we tried our first miracle cure, auditory training. He is now 20 and helps Matthew film “rock-u-mentaries”. More about that another time. He is even more patient with Matthew than I am.
11) Matthew is WAY more capable than I ever dreamed he would be. WAY. He’s hardest working person I know.
12) It used to ruin my day when people stared at Matthew, but it doesn’t anymore.  I get that my son’s behavior can be stare worthy, and that people are curious.
13) It ruins my day when Matthew tells me he is lonely….
14) …but that happens less frequently because Matthew has friends. Isn’t that great?
15)  The year I accepted that Matthew’s autism was lifelong was also the year I had a mini-breakdown. O.K., It was more than a mini-breakdown.
16) The best things I ever did was find a good therapist.
17) My sense of humor has saved me, and it gets better every year.
18) There is nothing more genuine than one of Matthew’s smiles.

19) There are more kind people in the world than there are jerks.

20) I cried at every IEP except for the last one.
21) I never blamed vaccines.
22) I’ve met some of the best people because of Matthew.
23)  My husband I have stayed together-I hear that is unusual.
24) I am luckier that most.
25) The lump in my throat will never go away.

From the Autism Speaks blog: http://www.autismspeaks.org/blog/2013/01/16/25-random-things-about-motherhood-autism-style-update?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+AutismSpeaksBlog+%28Autism+Speaks+|+Official+Blog%29

An Award, A Strange Pizza and A New Guiding Light

(no, not the soap opera...) To say that life has been insane lately does not even come close to describing it. Our family has been through some really intense situations in the past several months and I have been stressed to the max. BUT something AMAZING happened to me recently and I told, no, promised myself that I would make the time to write about it. I hope you find it is helpful to you in your journey on this puzzling path.
November 9, 2012:
With a deep breath and the deafening sound of my heart pounding I opened the door. In this room full of unfamiliar faces I scanned the horizon for what I was looking for. I found it hard to speak and even swallow, as my nerves seemed to have depleted my mouth of any possible essence of moisture. Yes, I was quite nervous! I was there with a sole purpose: to meet the young man who'd allowed me to feel safe to have hope again. What will he be like? Would he spare just a few minutes of his time to chat? My mind was racing with countless possible scenarios for the evening's events. I was at the Current Trends in Autism Conference right here in Massachusetts and the room was filled with not a single soul I knew (which doesn't happen to me very often in the autism world).

The sound of my cell phone ringing forced me back into reality, and, was I ever glad! Kerry Magro is an adult with autism. I wrote about him in my post titled "Star Struck" back in August. He was being honored that night with the Margaret Bauman Award for Excellence as an Outstanding Advocate for autism!!! {I can't, and won't, deny my admiration for this young man and the fact that I secretly stalk him online-- it's OK, he knows I'm his 'self-proclaimed groupie'} As I answered the call on my phone I recognized the voice I was so familiar with from Kerry's Korner video blog on the Autism Speaks video channel and the My Autism, My Voice website...

Something I could not have begun to fathom back in August was about to happen... and there he was: tall, slender, well poised, handsome and welcoming in his impeccable black suit. Expecting an awkward and formal handshake I walked closer to introduce myself and instead found myself embraced in a big authentic hug! As we started speaking it felt as if we'd been friends forever. The connection was instant and I knew I had just made a friend. WOW! Well, like meeting Kerry wasn't enough, he told me he'd traveled with his mother, Suzanne. I had read a letter that Suzanne had written and I knew that she'd walked in my shoes and had come out victorious on the other side. Industrial-sized wheels were turning in my head. I had to think about the BEST question to ask her. I had this one chance and I had to make it count!

Well, it turns out that none of my fretting, pondering and maniacal anxious anticipation was even necessary. All the eloquence I was struggling to muster was futile because Suzanne and Kerry are just a mom and her son, just like me and Nathan! They are two heavy-weight champions who fought this seemingly endless battle... and won! The more we spoke, the more I came to realize why I have this compelling drive to learn all that I can about Kerry. He represents what I hope and pray that Nathan will become one day. As we sat sipping drinks (which Suzanne treated ME to!) and shared hor d'ouvres the conversation somehow shifted to me and my life. I thought I was there to learn, to ask as much as I could and gather as much information possible like a little squirrel hoarding its feast to digest slowly in the future. Yet I was the one being asked most of the questions. The more I shared about Nathan, the expression on Kerry's face visibly changed. He explained that he felt like I was talking about him as a child! More reason to hope!

The time came for Suzanne and Kerry to each speak at the podium... and I just soaked it all in. What struck me the most was that as each one spoke, they were simply praising the other. This is what I learned that evening: they say that behind every great man is a great woman; well, behind every successful adult with autism is an unrelenting, driven and unwavering mom (and dads, of course). As star struck I was about meeting Kerry, I just can't find the words to describe the inspiration and fire to persevere and fight for my son that was passed on to me upon meeting Suzanne. Expecting pomp and circumstance I found two loving, humble, giving people who'd traveled all this way in the aftermath of Superstorm Sandy and a Nor'easter (they are from New Jersey)... After the ceremony Suzanne asked if I could stay a little longer and join them for dinner... Umm... YEAH!!!

The surreal whirlwind of thoughts was dizzying as I was trying to wrap my head around what was happening. People kept stopping with outpouring of accolades for Kerry. I was sitting with the president of the school committee, transportation expert and hero mom of this successful, educated young man who rubs elbows with elected officials and celebrities... Yet they were so down to earth that they decided to just order an appetizer because the menu "just had strange pizza, not normal pizza!" One mom stopped to gush over Kerry and Suzanne just said, "he needs to get back home to finish his homework!" (Kerry is finishing his thesis and preparing to graduate with a Master's in Strategic Communications and Leadership from Seton Hall University). We shared our experiences together: missing major family events because our sons can't handle them, not being able to get a babysitter, not being able to go out alone with our husbands, our struggles to get our kids to try new things, our struggles to get our kids to take a bath... the similarities were uncanny. Yet at the end of the meal, Suzanne turns to ME and asks me, "So, what's your plan?"

I am not star struck anymore, not because Suzanne and Kerry are not superstars in my eyes, but because I feel blessed instead. I am unbelievably blessed to have had the opportunity to make two new and amazing friends! An evening that I thought would bring me a tip or two of advice resulted in my witnessing a wonderful friend receive such a well-deserved award, eating "strange pizza" (Kerry made me do it!) and finding a new guiding light at the end of this puzzling journey. I can only sum it up in two words:

"THANK YOU!!!!!"

Meeting Kerry

A toast to Kerry's award! YOU ROCK, MY FRIEND!!!