Video Game Addiction and Individuals with Special Needs

Do individuals with special needs, like ASDs and ADHD, get caught up in video game addiction more readily? OK, so maybe “Internet Gaming Addiction” is not an official disorder in the US. But, we know the behavior exists, whether or not it’s a separate disorder, or co-mingled with some other condition. What is the science on video game addiction and ASDs?

In my therapy practice I focus on individuals with special needs like ASDs and ADHD. It’s pretty common for me to meet a child or teenager who has a habit of playing games for as much time as the parents will allow, whether that’s one hour a day or seven hours a day. The American Academy of Pediatrics recommends no more than 1 to 2 hours daily of screen time for any kids 2 and older, and none at all for younger children. And this recommendation is for typically developing kids, not those special needs kids who are already at a higher risk of having difficulties. Adverse risks the AAP cite include: “attention problems, school difficulties, sleep and eating disorders, and obesity.” So many of the kids I work with are already struggling with these problems - attention issues with the EF difficulties they may have,  sleep and eating problems that go hand in hand with an ASD diagnosis, weight issues due to the medications these kids may need. It’s concerning! 

Dr. Micah Mazurek has done a great deal of research on the issue of screen use and ASDs or other special needs. (I’ve accessed many of her studies through my professional organization, but Google Scholar also provides access to a lot of her information so parents can read the studies, or at least the abstracts.) Her results add to my concern. 

In a 2012 study, Mazurek and Wenstrup compared television, video game and social media usage in kids with ASDs and their typically developing siblings. I wasn’t surprised by the results. The kids with ASDs spent more time playing video games than their typical siblings, and they spent more time playing games and watching TV than doing any other extracurricular activity. And the ASD kids spent little time on social media and socially interactive games. Finally, the ASD kids had more problematic behaviors around games, like difficulty stopping and using the games to manage their moods. Although I often hear the argument that games are a way to be social, the ASD kids were much less likely to play these games with others, either in person or online. 

Other Mazurek studies have found similar results, including the disturbing fact that kids with ASDs spend more time on video games than any other leisure activity. Kids with ASDs have more sleep problems and more oppositional behavior when their parents allow in room access to screen, and if there are no rules regarding usage. Another study from Mazurek found that boys with ADHD or ASD had a greater tendency to have problematic game use than typical boys. 

From other researchers, Chan and Robinowitz found a correlation between more than 1 hour a day of game play and more intense ADHD or inattentive symptoms. 

So what does this mean for parents of special needs kids? What if your child can only entertain himself with screens? What if it’s the only way he can calm down? What if games are the only thing he has in common with peers? What if you need a break and the screen is the only thing that gives you some time to relax? I’m sorry, this post is too long already. I’ll address those issues in my next post!

Thanks to Pixabay for the photo!

Can Someone Be Addicted to Video Games?

"My son is addicted to video games!" That's a statement I hear frequently, whether the son is a small child, or a young adult. I hear this less often for girls. Although there are a lot of girls heavily involved in games, more often I hear about girls with heavy use of texting and social media. But, for males, so often the gaming, whether on a console or through the internet, can take up as much time as the parents allow.

Officially, there is no such thing as video game addiction, at least in the US. China does call it an addiction, and there are treatment programs there and elsewhere. Currently, the DSM-5™lists Internet Gaming Disorder as a condition for further study. It's unfortunate they chose to call it that, because the technology will surely outpace the research, and the behavior around compulsive game play could be the same even if the Internet is not the vehicle of connection. The text in the DSM does allow for the idea of non-Internet computerized games, but it seems like this is going to be very confusing. (Is this a DSM theme, reminiscent of the confusion surrounding non-hyperactive Attention Deficit Hyperactivity Disorder?)

The APA, the organization that compiles the DSM and looks at the research, has set up some proposed criteria. As always with disorders, there must be impairment or distress. Then we can look at the issues: preoccupation, withdrawal, tolerance, unsuccessful attempts to cut back, loss of interest in other things. It's looking a lot like what they've written for chemical dependence or gambling addiction, which were the models for this section after all. In the detailed text, the DSM refers to individuals neglecting other activities, missing sleep and food, playing at least 30 hours a week, and becoming angry or agitated if they can't play.

All these official details are fine, but for most parents who are worried, the issue of video game addiction comes down to common sense rather than research consensus. Is your child missing out on social, physical, and professional or educational activities because of game time? Is your child using gaming to manage emotions like anxiety, loneliness or boredom? Does your attempt to manage the time result in meltdowns? Is your child developing the important skills of learning to tolerate boredom or complete a task that doesn't reward with exploding rockets and buzzers?

Stay tuned for my next post, where I discuss video game addiction specifically for individuals with special needs.

photo credit: <a href="http://www.flickr.com/photos/30806435@N04/4298824267">Playing DS</a> via <a href="http://photopin.com">photopin</a> <a href="https://creativecommons.org/licenses/by/2.0/">(license)</a>

Time to Think about Summer Camps!

It's well known that kids on the autism spectrum struggle with generalizing learning from one setting to another. Simon Baron-Cohen explains this by way of the extreme systemizing theory of autism, where autistic individuals set up rules to understand the world, and those rules don't easily generalize from one situation to another. I think this difficulty is clearly apparent in social situations. So often, I've worked with children who could teach the content of a social skills class, yet they struggle to apply those same skills in any meaningful way in their own lives.

That's why I like to see experiential social skills training, rather than more didactic, instructional training. When an individual has the experience of doing activities with others, ideally with some support on the social skills involved, and he/she gets to apply the intellectual theories of social skills in a real, social setting, that person has the chance to practice, understand and learn those skills, rather than merely recite them. Experiential learning takes place in many settings, from a group project in the classroom, to sports teams, to hobby groups and camps. When I work individually with children and teens, I combine instruction on social skills to application, through here and now games and activities. Whenever I get the chance, I bring up what's going on socially, right in the session. I think the most useful part of many social skills groups isn't the skills discussion around the table, but rather the shared pizza time afterward.

So what's the point of all this instructional theorizing? The experiential call to action! It's February, and not too soon to think about summer camps. There are so many good ones, with camping, Legos, robotics and computers, arts, sports, nature, and horses. Check out my resource page for my favorite Bay Area social skills camp choices or search online for activities your child will enjoy.

photo credit: Thomas Hawk via photopin cc

Bay Area Parent Support Group

There is a new support group forming in Walnut Creek, CA for parents of Middle and High School age kids with Asperger's or Autism Spectrum Disorders. The first meeting is October 9, 2013, at 7 pm, at John Muir Hospital. See the flyer below for more information.  

ADHD Parent Support Group in Walnut Creek

I just got this notice, and I'm really excited that this is available to local families:

We are pleased to announce a new CHADD Parent Support Group in Walnut Creek, beginning this month. Let's start off the new school year with tips and tools to help your child be successful. 

WHAT:  

Parent Support Group (drop-in). The purpose of our group is to develop and foster positive skills for parents of children with ADHD.

WHEN:

2nd Wednesday of every month from 6:30 - 8:00pm; next meeting is Sept. 11th

   

WHERE:

Kaiser Mental Health Bldg., 710 S. Broadway, Walnut Creek  (the bldg. next to Safeway on the corner of Mt. Diablo Blvd.) 

 

CONTACT:

 Sherry Chase, Ph.D., Coordinator - 510-433-9448 - sherrychase@comcast.net 

CHADD meetings are open to the public and free to CHADD members. A $5 donation is suggested of non-members, but no one is turned away for lack of funds. Become a CHADD member here and enjoy all the benefits of CHADD membership. Visit CHADD.org for more information about ADHD. Enjoy a $10 discount if you
join or renew by 9/30/13 (promo code: chadd10off).
  

Summer Social Skills

Now that school is getting out for the summer, your family’s schedule may be a lot more relaxed.  If your child has special needs, such as an Autism Spectrum Disorder, Asperger’s disorder, ADHD or ADD, organizational and executive functioning issues, or problems with social skills, the school year may have been extremely high stress. It’s great to be able to enjoy this more unstructured time, spend more time together as a family and take it easy. Without the pressures of school and homework, now is also the perfect time to help your child improve social skills for the upcoming school year.


If your child has been struggling with friendships, the summer months can be a great time for unstructured playdates. Many outdoor activities, such as playing in the pool, riding bikes, playing with water balloons or kickballs, are less organized and subtle than more conversational, indoor games. These can be a great opportunity for your child to interact with peers and have fun too.


If your child struggles with basic athletic skills, such as swimming, bike riding, running or kicking, or even climbing on the monkey bars, the summer can be a time to work as a family to improve these abilities. Some kids really dislike sports, and have no interest in doing these types of activities, but school playgrounds do revolve around games. If your child can manage to participate, a new social avenue is opened. Kids who aren’t skilled at sports often don’t join in, and then their skills get even further behind. Playing as a family can remove the pressure that your child experiences in peer play.


For kids who have spent the school year struggling with organization, the summer is the chance to catch up and get ready for next September. Work together to remove all of last year’s papers and books. Clear the desk and drawers so you have room to work in a more organized setting next year. This may seem far removed from social skills, but remember that the faster and more efficiently your child can finish homework, the more time there is left for other activities.


Be sure to keep all these activities light and fun. Kids with special needs have worked hard all year, and so have their parents. You all deserve some time to enjoy each other.

Image attribution:
By Jairo [CC-BY-2.0], via Wikimedia Commons

Thinking About Summer Camps

It's April, and time to finalize those plans for summer camps. I'm a big fan of camp experiences for special needs kids, and there are even some great options for older teens and young adults. Camps give kids a chance to experience social interactions in a relaxed atmosphere, and they have an array of professionals available to counsel and coach real time, as the interactions are going on. At school, teachers and yard duty personnel often try to do social coaching during the school day, but there just isn't the time for it to be a focus. Camps offer that focus. Here in the East Bay there are lots of options, from day camps to sleep away, for interests in horses, camping, technology and film. Older teens can sometimes take a leadership role as a Counselor in Training. I've listed the programs I'm aware at the resource page of my website patriciarobinsonmft.com. Please let me know of any others!

Video Games and Depression

So many of the ASD or ADHD clients who come to see me are spending hours a day online or playing video games. And, they are often dealing with depression and social isolation as well. Of course, as an engineer, I well understand that correlation does not indicate causation But, as a therapist, I recognize that many of my clients have interest in social connections, and they want to have interesting lives, but the effort to do these things is pretty stressful. Video games provide an anxiety management tool, as well as an experience that is both immediately gratifying and at the same time low stress. 

Along these lines of thought, The New York Times published an article titled Video Games and the Depressed Teenager.  For now, excessive internet and video use is not technically an addiction, although it is a topic of further study in the new DSM 5, which is going to be published this spring. 

I think it’s important for parents and young adults to consider these results in deciding their standards for online activities in their own homes. Many parents think addition is an appropriate term, because they can see how their own kids and teens behave when they are deprived of their gaming time. For many, less screen time seems to result in calmer and happier moods.

Alameda County Transition Fair

Both Alameda and Contra Costa Counties present annual transition fairs, designed to bring together young adults with special needs with the venders and agencies who can help them transtion to adult living situations and employment. Because the fairs only occur once a year, I encourage teens, young adults and their parents to attend these events early, so they can start learning about the services available.

Alameda is holding their 2013 Transition Fair this year on March 16. You can find more information on their Facebook page at http://www.facebook.com/events/411555572244926/.

Stage Show

I just got a notice of a stage show on parenting an autistic child presented next week at the Dean Lesher Center in Walnut Creek. I haven't seen the show, but it has good online reviews. The show, A Real Man is October 26, 2012, at 8:15 pm.

Get more info at http://www.lesherartscenter.org/

Documentary: Loving Lampposts

Loving Lampposts is a thoughtful and intelligent documentary by Todd Drezner about autism, neurodiversity, society’s viewpoint of the diagnosis and how that impacts the way we treat autistic individuals, both medically and personally. I was excited to see that this balanced and open minded film is available on Netflix instant watch.

Drezner’s son Sam, was diagnosed with PDD-NOS as a toddler. He seems to be an easy-going child, although quirky and not very social. (I won’t say “high functioning”, because the film offers a thought provoking conversation on that term.) The film’s title comes from Sam’s early special interest in and connection to a group of lampposts near his home. Visiting the lampposts is an important ritual for Sam as a child.

But the film is much more than a look at one family’s experience with their special needs child. Drenzer thoughtfully examines the big questions about whether autism is an illness to be cured or a difference to be accepted. In his interview with Steve Silberman of the blog Neurotribes, Drenzer discusses how he views autism as a difference as well as a disability. I appreciate this realistic and still respectful stance. In the documentary, Drenzer manages to interview many of the big names in autism science, such as Simon Baron-Cohen, and Paul Offit. He talks to parents of autistic children, like AutismVox blogger Christina Chew, and author Roy Grinker, and autism Playboy Bunny Jenny McCarthy.

The most exciting group in the film is the widely diverse group of autistic adults represented. So often the focus of research, treatment and policy is on children, leaving autistic adults as the forgotten majority. Drenzer talks to artist Dora Raymaker of AASPIRE, Sharisa Joy Kochmeister of AutCom, author Stephen Shore, as well as others. The film celebrate the gifts these individuals bring, while not ignoring their difficulties.

Loving Lampposts is entertaining and informative, well worth watching.

Book Review: The Anti-Romantic Child

There are a lot of books written by mothers about raising their special needs children, some excellent, some not so great, most somewhere in the middle. The Anti-Romantic Child, A Story of Unexpected Joy , by Priscilla Gilman is both beautifully written, inspiring and dramatic, and also a bit different than the other books in this genre. That’s due to the author, who is not only a mother, but also a former professor of English literature. Gilman weaves together her interest in Wordworth’s poetry with her experiences in raising her special needs son in a way that brings deeper meaning to both.

The Anti-Romantic Child is about Gilman’s son Benj, a boy exhibiting hyperlexia, as well as autistic characteristics, such as rigid behaviors and deficits in social skills. Hyperlexia is characterized by interest in words and exceptional reading skills along with difficulty with reading comprehension. Hyperlexic individuals frequently have social problems and other developmental delays. Gilman carefully discusses the unusual issues her son has, such as sensory sensitivities, and a tendency toward OCD and rigid behavior, without ever putting him into a labelled box.

What makes Gilman’s book so fascinating is how she uses the abstract and ambiguous natures of poetry to further her own understanding of her son’s development. Because Gilman was a literature professor, she has a skill in presenting the poetry in a way that enhances the understanding of both the developmental issues and the poetry. Since I was trained as an engineer, with MIT’s minimal literature requirements, I’ve rarely had that experience.

Like all the mother/authors I’ve read, Gilman has great dreams for her son, and fights to help him attain them. The difference in this book is the eloquence of how she expresses these dreams for Benj:

“That he be seen as whole against the sky. That he not suffer beyond his and my capacity to bear it. That he be allowed to enjoy the pleasures of 'his own private nook' and come out of that nook for joyful engagement with others. That he always hold on to his visionary gleam, his bright radiance.”

This book has a bright radiance all its own.

Book Review: Buzz, A Year of Paying Attention

“Well written, compassionate, interesting” are all words I’d use to describe Buzz, A Year of Paying Attention, A Memoir by Katherine Ellison. But even though I enjoyed it, I struggled with the concept of the book and came away feeling vaguely unsettled.  Ellison describes her plan to devote a year in which she’d “put other work aside, making it my full-time job to seek the best path for a distracted parent intent on helping her distracted child.” I always appreciate well written books that combine information with a chance to really get to know the author’s experiences. Ellison, a Pulitzer Prize-winning journalist, has the ability and the connections to do just that. She meets experts such a Dr Russell Barkley, and authors like Dr Daniel Amen, and Blake Taylor. She quotes from Dr Ross Greene, Dr John Ratey and Dr. Edward Hallowell. (Greene and Hallowell even write blurbs for the for the book cover.)


It’s not surprising that an author who describes herself as having ADHD would take a creative and enthusiastic approach to exploring the different ways to manage ADHD. But it was also not surprising that this style resulted in a somewhat scattered attempt to solve a very challenging issue.  I kept wanting more depth and focus, and I kept hoping the author would stick with something long enough to really give it a chance. I kept looking for more scientific inquiry and less anecdotal evidence.

So often I hear from parents that they’re looking for a clear cut diagnosis, with a solid recommendation on what to do to help their child. Unfortunately, it’s just not that straightforward. Although a one size fits all diagnosis and treatment plan might be comforting, it’s never going to work as well as something tailored specifically. There is no one path, or one best treatment, and dabbling in different solutions over the course of a year is not going to result in the best outcome.

As for Buzz, I’d still recommend it, but I’d suggest thinking of the book as a chance to understand someone else’s experiences with a challenging child, not as a way to learn how to help your own child.

Book Review: The Autism Mom’s Survival Guide

A while back, someone sent me a copy of Susan Senator’s The Autism Mom’s Survival Guide. Susan Senator is a gifted writer, with a blog as well as an earlier book about raising her autistic son. Susan Senator writes with a personal, honest voice that feels like you’re talking with a close friend over a cup of tea.


Although I read the book immediately, and keep recommending it to friends and clients, somehow I’ve never reviewed it for my blog. I thought now would be a good time to rectify that lapse. The Autism Mom’s Survival Guide is really all about taking care of yourself at the same time you’re taking care of your special needs child, as well as the rest of your family. Senator writes from her own perspective, as well as compiling the advice of other autism parents. For parents who may feel like they’re all alone, judged by others and not measuring up, this voice from a community of others in the same situation can be a valuable support.

My favorite part of the book comes when Senator writes in her own voice, as the mother of a now grown autistic child. Her compassion as she looks back on her own young self, raising her small child, was touching, and just what every young mother needs to hear. This book is a gift for all parents of special needs kids, a book to pull out when you feel like no one understands, or that you’re all alone.

Divorce and Autism: An Ongoing Discussion

I think every family wants what's best for their autistic child, and one of their biggest worries is divorce. It's not surprising, since popular culture so often states that 80% of families with autistic children get divorced. Thankfully, that statistic seems to be more widespread than valid. I’ve published a few posts on the theme of divorce statistics among families with autistic children. You can find more details about divorce rates in the Kennedy Krieger study and the Easter Seals survey.

Fortunately, it’s an intriguing issue, and researchers continue to investigate the question. Recently, The Journal of Family Psychology published a study by Sigan Hartley, in which she looked at 406 families of autistic children, as well as an equal number of parents of typical children. The study found that divorce rates were equal up to the child's age of eight, after which time the parents of autistic children were more likely to divorce. The study found a 23% divorce rate for the autistic families, compared to 14% for the typical families, still a far cry from the often reported 80% rate. Hartley suggests that the difference in rate found between this study and the Kennedy Krieger study was due to the age differences of the children. The Kennedy Kreiger study, which found equal divorces rates regardless of the presence of autistic children, looked at children under 17, while Hartley’s study included children into middle age.

Clearly, this is not a simple question, and more research will give us more details. But, the good news is that most families do manage to stay intact, regardless of their children's diagnoses.

Coping with the Holidays: Advice for Parents of Kids on the Autism Spectrum

Over the years I’ve posted several articles about how individuals and families can cope with the holidays. And, of course, the same issues come up every year. Families travel, visit, have massive, loud get-togethers. Unwanted advice, comparisons, judgments are always there, maybe under the surface, maybe right in your face.

In view of that fact, I want to repeat the same thing I said last year. You know your child. Just because your child is acting up, or not matching the achievements of cousins, or won’t eat the special dinner Grandma made, does not mean that you’re not great parents. And it doesn’t mean that you don’t have a wonderful kid, with his own special gift and talents. Please take this holiday season to appreciate the child you have, and to trust yourself as a good parent.

And here’s last year’s article, in case you didn’t read it then.

The holidays are coming up and for a lot of people that means getting together with extended family and relatives you haven’t seen in a while. This can be a great chance to connect, feel supported, even show off a bit with all the progress your child has made.


But it can also mean unwanted advice. Your parents, your sister-in-law, your best friend from high school probably mean nothing but the best for you and your family. But they also may not have a special needs child and they may not understand what it is that your family is going through, or what your child needs.

So often I’ve heard the same story from clients. A well-meaning relative says something like, “If only you’d do _________, your kid wouldn’t do _______.” or “Trust me, your kid just needs more __________, and he wouldn’t be so _____________.” You can probably fill in the blanks, there’s a lot of advice out there.


The fact is, and I’ve said it before, some kids are just tougher to parent than others. Your nieces and nephews may just be incredibly easy-going children. It doesn’t mean that you are not also a good parent. Your child may just be wired differently, temperamentally more sensitive,  more strong-willed, or more emotional.


I’ve worked with so many different kids over the years. The truth is, some of them are so easy and low key, they practically parent themselves. Other kids are so difficult, it’s hard to manage them for just a brief while, much less an entire holiday vacation. Add in some travel time, late nights, too much stimulation, and it’s not surprising that things get out of hand.


So this holiday season, I’m asking you to trust yourself and the parenting skills you’ve developed by taking care of your child for all this time. Listen to the advice politely if you want to, but don’t think that any other parent is more capable than you are. Your child is lucky to have you as a parent.

Book Review: Anthony Best

One of the hardest parts about the autism spectrum can be the feeling of separation it brings about. Adults on the spectrum may feel isolated and different than other people they live and work with. Parents of autistic kids can feel judged and criticized by other parents, especially those with easy children. Probably most difficult is the children on the spectrum, who often suffer through teasing, bullying or just being left out.

I think sometimes this isolation can be toughest for kids in mainstream schools, where their academic abilities are strong, but their social skills keep them from connecting with classmates. So often, the typical kids don’t understand what’s different about their autistic classmates and neighbors, so they might view autistic behaviors as mean or unfriendly. And the sad result is that the autistic kids get left out.


Education and communication can go a long way toward creating understanding, and books can be the best way to start that conversation. One sweet picture book I recently read is Anthony Best by Davene Fahy. In this simple book, Fahy explores the relationship between Anthony, a child on the autism spectrum, and his neighbor Hannah. The book illustrates many of the behaviors that might be puzzling or upsetting to neurotypical children, such as stimming behaviors, lack of eye contact, and communication differences. These behaviors are presented in a simple, non-judging way, which leaves plenty of space to have a conversation with young readers.

If you have a child on the spectrum, or with behavioral or learning differences, this book could be a good choice to present to neighbors or friends who want their children to learn a bit more about how differences don’t have to keep kids from being friends. And, Anthony Best would be a nice book for any teacher to have in the classroom.

Book Review: A Regular Guy

The Autism Spectrum is so broad, the gifts and difficulties so varied, that people often tell me about how they feel alone, that their experiences are different than others, and no one understands what they’re going through. And, for those raising a child on the spectrum, there are ongoing challenges that can feel very isolating for parents as well as kids. It starts with noticing something concerning about a child, then moves to dealing with the medical professionals, getting the right diagnosis, finding the right services and the appropriate educational setting. Sadly, the typical world can be a harsh and judging critic along the way. And the difficulties don’t end in adulthood, because often special needs adults need individualized plans to ensure appropriate employment and living situations. Because each child is so different, it’s not a one size fits all situation.

That’s one way that books and blogs can be vital, as the link connecting individuals, showing people that they’re not alone and others might be going through a very similar struggle. A Regular Guy: Growing up with Autism , by Laura Shumaker is an excellent example of a book that helps create that connection for parents raising kids with special needs. Shumaker chronicles her struggles with the medical profession, helping her son find the right school setting, and to fit in with neighbors and friends. She’s honest about her family’s struggles, and compassionately attuned to the pain her son goes through as well.  The hardest parts of the book are those describing the many tough decisions Shumaker is forced to make, often for her son’s own good, but also hard for him to accept.


I recommend this insightful book for any parent dealing with those tough choices, and anyone feeling isolated or judged by their parenting situation.

Parenthood and Misleading Divorce Statistics

I'm never quite up to date on TV viewing, since I watch everything off my DVR, so I'm commenting about a show from a few weeks ago. Parenthood, Season 2, Episode 4, which features a family dealing with a child's Asperger's, talked about the dreaded divorce statistic "80% of families with an autistic kid get divorced."

Fortunately, that's just not true. The 80% statistic is an enduring myth I see quoted frequently, but studies just don't back it up. The divorce rate seems to be about the same, whether a child is autistic or not. Even worse, the show quoted that the character's therapist told her that it was true. Lesson 1: Don't believe everything your therapist tells you! Lesson 2: Just because your child is autistic, doesn't mean you're doomed to divorce.

You can read an earlier discussion of this topic on my Divorce and Autism post. Please don't skip the show because of one bad statistic. Autistic kids are varied, and every family is different, but in general, Parenthood seems to do a pretty good job of presenting the joys and struggles of raising an autistic child.

Parent’s Stories About Autism

I recently got an email from a researcher at Columbia University. They’re doing a study on parents of children with autism, and looking for parents to participate. Here’s an excerpt from their email if you’re interested.

“We are researchers at Columbia University's Institute for Social and Economic Research and Policy studying autism. We are currently collecting life stories from parents about their experiences in recognizing their child's autism, seeking professional help and navigating the available service systems. We think participation in this study would be of great interest to your readers, and we would like to invite you to write about our survey on your blog.


The goal of this project is to gain a better understanding of the road to diagnosis. Parents have different experiences and observations of their child's development and they have different personal resources with which they access care and services. Parents also differ in the type and extent of their support networks and social relations. And finally parents make different decisions in their quest for obtaining the right diagnosis and care for their child.  We would like to give parents the chance to tell their stories. Participation in the survey may help us understand the heterogeneity of autism as well as how children develop over time.


We are collecting life stories of parents of children who have autism through an online semi-structured survey at our website, http://www.understandingautism.columbia.edu. You could help our research tremendously by encouraging parents to participate in our study.”


Please consider going to the website and sharing your story.