Cedar Hill Boy’s Story Sparks Hope, Skepticism in Autism Community

By JESSICA MEYERS / The Dallas Morning News

The twiggy boy who greets strangers at his Cedar Hill home with a handshake and an impish grin bears no resemblance to the toddler who shied away from contact, screamed when he had to walk down the stairs and spent hours staring at the ceiling fan.

Roman Scott’s cheerfully innocuous disposition belies the whirlwind he’s stirring in autism circles. He’s the subject of his mother’s book, which claims he overcame the disorder after her intensive 2 ½ -year training program. Raindrops on Roman was released this month in conjunction with Autism Awareness Month.

On one level, Elizabeth Scott’s account has stoked existing controversy among autism experts who question whether situations like Roman’s are a promising development or a case of false hope. But it also reveals how the state’s limited services have forced parents into the unwitting role of therapist, caretaker and healer.

Texas is “on the bottom of the totem pole in terms of resources,” said Michelle Guppy, who runs Texas Autism Advocacy, an online network intended to help parents navigate the state’s bureaucracy.

Her 15-year-old autistic son waited eight years before he received services from the state. By that time, the family had gone $60,000 into debt and had yanked him out of therapy.

“I could help one son now and that takes away college for the other and I couldn’t do that,” said Guppy, who applauds the book’s inspirational tone and instructive suggestions. “Who knows – he could have been one of those recovered kids.”

Range of disorders

The Texas Health and Human Services Commission estimates that about 50,000 Texas children have a disorder related to autism.

Few receive the same daily attention as Roman, who was diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified at 18 months and autism at 3 years old. Both fall within the umbrella of autism spectrum disorders, with PDD-NOS considered milder. There are five types, which range from mild to severe and often involve problems with social interaction, appropriate behavior, speech development and repeated compulsive actions.

The state-administered Early Childhood Intervention (ECI) program treats about 60,000 children with disabilities and developmental delays up to 3 years of age. Individual school districts take over with special education programs from age 3, but both systems have a shortage of professionals and inconsistent services.

Some children who have delayed speaking problems may only see a speech therapist twice a month, unlike in California, where regional centers offer a range of services to parents of autistic children. In Texas, parents wait up to 10 years for Medicaid programs that offer aid to people with mental disabilities.

The Texas Legislature passed a law two years ago mandating that insurance companies cover autism-related services for children between ages 3 and 5, but the coverage is often limited. Children often need therapy reinforced beyond this point, and that can cost upwards of $50,000 a year and is generally out-of-pocket.

Unlike states such as California and Indiana, Texas has no central autism resource center. Parents are left relying on each other to find out what’s available.

‘People need to know’

That’s largely what motivated Scott to write the memoir.

“If there is a story of recovery and this is it, then parents need to know about it,” she said, as 7-year-old Roman alternated between building his Lego city and watching Tom and Jerry in the living room.

Scott, who has a master’s in elementary education, said she had to try something as she watched Roman choke on his food, churn his hands in circles, throw tantrums at the sight of a camera, smack the television every morning or fight the sensation of a toothbrush.

“I needed to work all day to keep him from retreating into his own world,” she said. “I ran the Boston Marathon, and that was cake compared to this.”

Frustrated with only two hours a week of ECI therapy, she stopped working and dedicated herself to re-training her son. Her husband continued to work nights as a computer analyst for J.C. Penney.

She turned her sitting room into a work space with shoe-lacing activities and puzzles for fine motor skills, word charts for language development, and a spot for timeout. The “skills and drills” took at least 10 hours a day, from songs at breakfast to spelling in the bathtub at night.

Three months into the regime, Roman started talking. Then the recurring laps around the house stopped. Slowly, he started responding to the reading drills. By 4, he tested out of special education.

Roman’s altered behavior did not go unnoticed.

“He has far surpassed any of the other kids I have ever seen,” said Paige Garza, his preschool teacher and a neighbor who has witnessed all of Roman’s stages. “Now he’s a grown man in a little person’s body. If I had met him today, I would never believe it.”

She cited Roman’s progress as her impetus for returning to school to focus on special education.

Cases of recovery

The word “cure” is considered taboo among researchers, and stories of recovery are rare. But they’re not inconceivable for a disorder that affects one in 150 children in the United States. High-profile cases have inspired self-help books and made-for-TV movies. The Son-Rise Program and the Autism Treatment Center of America sprang from the apparent recovery of Raun Kaufman, an autistic child who stopped showing symptoms after his parents developed a comprehensive therapy program for him.

Actress Jenny McCarthy has garnered significant recent attention for autism recovery by claiming that a special diet helped her son cease his autistic behaviors.

Researchers warn against following these examples too closely.

“What is true for one child is not going to be true for most children for autism,” said Susan Swedo, chief of pediatrics and the developmental neuropsychiatry branch at the National Institute of Mental Health. She has just begun a study on autism recovery.

While it’s possible that children like Roman stop showing symptoms, it’s also conceivable that they received a “squishy” or inaccurate diagnosis, she said. A behavior checklist rather than a medical test determines whether a child has an autism spectrum disorder. So if the child was having a bad day during the evaluation or has a general fear of strangers, that can affect the results. She also noted that the previous behaviors could re-develop later in life in less structured settings, such as a junior high cafeteria.

Scott’s repeated and rigorous training techniques resemble the most commonly accepted autism therapy, Applied Behavior Analysis, Swedo said. And they only could have helped in an area where so much rides on early intervention.

“The earlier you start, the more time you will have to be in therapy and won’t get stuck in negative patterns,” she said.

The American Academy of Pediatrics recommends autism screening as early as 18 months. The academy also encourages systematic activities for at least 25 hours a week even before a definitive diagnosis is made.

Time-intensive process

Most parents don’t have this same time or financial means to focus solely on their children, said Dr. Doreen Granpeesheh, the founder of the California-based Center for Autism and Related Disorders.

“You’re basically teaching a child a new communication system,” she said, emphasizing that even several hours a day of structured one-on-one lessons from mom or dad can help a child under the age of 7. For the busy parent, she suggested paying a high school student to go over reasoning skills or asking a sibling to play games that require hand-eye coordination.

Granpeesheh endorses the notion that some children can recover from the disorder. She worked on the seminal 1987 autism treatment study that spanned two years and showed astounding progress in autistic children after 40 hours a week of behavioral therapy. Almost half of the children tested normally when the study ended. She has continued her own research, and completed a documentary last year that featured four children who, like Roman, no longer show signs of autism.

Entering mainstream

Autism studies are gaining more ground as the word enters the mainstream. The National Institutes of Health will commit about $60 million from the stimulus package toward autism research, the most funding to date. The Texas Department of Assistive and Rehabilitative Services started a pilot program last April that gives $5 million to four Texas agencies devoted to autism spectrum disorders and behavioral therapy.

In the meantime, parents search for reassurance, advice and clarity for this perplexing condition and its myriad forms.

“We’ve ordered a couple of copies [of Scott’s book] for the family,” said Kimberly Henderson, a St. Louis resident whose 2-year-old son has developmental delays and is undergoing testing. She squeezes in lessons when she gets home from work at 6 until bedtime. “I use it as my textbook. Knowing that she has overcome this is important to me.”

Roman also knows his mother has written a book about him but doesn’t fully understand why. He still exhibits a few quirks. He understands comments on a more literal level than most kids and hates the texture of almost all foods, but he already has “a million girlfriends.”

He has plans to be an architect, once he makes it through first grade.

AUTISM RED FLAGS, TREATMENT TIPS

‘Red flags’

•Does not make eye contact or interact with other children

•Does not react to smiling and is resistant to change

•Is unusually attached to certain objects; excessively lines up toys

•Is prone to tantrums

•Does not babble, coo or make meaningful gestures (pointing, waving, grasping, etc.) by 1 year

•Engages in repetitive behaviors (hand twirling, flapping)

•Is oversensitive or undersensitive to pain

•Has fine or gross motor problems

Treatment tips from Elizabeth Scott

1. Stop repeated behaviors: Count down to warn the child to stop a repeated habit, then replace it with a toy or activity.

2. Focusing: Have the child sit at a small table and participate in a variety of activities (shape sorter, Play-Doh, arts and crafts) for one to two minutes. Increase the time per activity over weeks. Use a timer and lots of language to keep the child talking.

3. Daily living activities: Incorporate skills into regular activities such as feeding, bathing and driving. Have a “goodie bag” of stuffed animals, squishy balls and flash cards. When the child is done with one toy, hand the child another. Interact using the toy. This will keep the child focused on something purposeful even while you are doing your daily routines.

4. Improving fine motor and gross motor skills: Have the child lace pictures, play with beads, use stamps, and do stacking and sorting. Increase gross coordination with activities such as tunnel play, rolling and throwing a ball, basketball shots, bowling and using playground apparatus.

SOURCES: Autism Society of America; National Institute of Child Health and Human Development

Comments

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  203. Today, I went to the beachfront with my children. I found a sea shell and gave it to my 4 year old daughter and said “You can hear the ocean if you put this to your ear.” She placed the shell to her ear and screamed. There was a hermit crab inside and it pinched her ear. She never wants to go back! LoL I know this is completely off topic but I had to tell someone!

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  235. My coder is trying to persuade me to move to .net from PHP. I have always disliked the idea because of the costs. But he’s tryiong none the less. I’ve been using WordPress on several websites for about a year and am anxious about switching to another platform. I have heard great things about blogengine.net. Is there a way I can transfer all my wordpress posts into it? Any kind of help would be really appreciated!

  236. Hi! Quick question that’s completely off topic. Do you know how to make your site mobile friendly? My weblog looks weird when browsing from my iphone 4. I’m trying to find a theme or plugin that might be able to fix this issue. If you have any recommendations, please share. Thank you!

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  247. With havin so much written content do you ever run into any issues of plagorism or copyright infringement? My site has a lot of exclusive content I’ve either created myself or outsourced but it appears a lot of it is popping it up all over the web without my permission. Do you know any ways to help stop content from being ripped off? I’d genuinely appreciate it.

  248. I am really enjoying the theme/design of your blog. Do you ever run into any browser compatibility issues? A number of my blog readers have complained about my site not working correctly in Explorer but looks great in Safari. Do you have any solutions to help fix this problem?

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  261. With havin so much content do you ever run into any issues of plagorism or copyright infringement? My website has a lot of unique content I’ve either written myself or outsourced but it looks like a lot of it is popping it up all over the web without my agreement. Do you know any methods to help protect against content from being ripped off? I’d certainly appreciate it.

  262. Today, while I was at work, my cousin stole my iphone and tested to see if it can survive a 40 foot drop, just so she can be a youtube sensation. My apple ipad is now destroyed and she has 83 views. I know this is entirely off topic but I had to share it with someone!

  263. Hey there fantastic blog! Does running a blog similar to this require a lot of work? I have very little understanding of computer programming however I was hoping to start my own blog in the near future. Anyhow, should you have any recommendations or tips for new blog owners please share. I understand this is off topic however I simply wanted to ask. Many thanks!

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  300. I know this if off topic but I’m looking into starting my own blog and was curious what all is needed to get setup? I’m assuming having a blog like yours would cost a pretty penny? I’m not very web smart so I’m not 100% sure. Any suggestions or advice would be greatly appreciated. Thanks

  301. The other day, while I was at work, my cousin stole my iPad and tested to see if it can survive a 30 foot drop, just so she can be a youtube sensation. My iPad is now destroyed and she has 83 views. I know this is entirely off topic but I had to share it with someone!

  302. Hi there would you mind sharing which blog platform you’re working with? I’m looking to start my own blog soon but I’m having a hard time making a decision between BlogEngine/Wordpress/B2evolution and Drupal. The reason I ask is because your design and style seems different then most blogs and I’m looking for something unique. P.S Apologies for getting off-topic but I had to ask!

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  318. When I initially commented I clicked the “Notify me when new comments are added” checkbox and now each time a comment is added I get four emails with the same comment. Is there any way you can remove me from that service? Many thanks!

  319. Good day I am so excited I found your site, I really found you by error, while I was looking on Aol for something else, Anyways I am here now and would just like to say kudos for a fantastic post and a all round interesting blog (I also love the theme/design), I don’t have time to go through it all at the minute but I have book-marked it and also added in your RSS feeds, so when I have time I will be back to read a lot more, Please do keep up the superb work.

  320. Wonderful blog! I found it while browsing on Yahoo News. Do you have any tips on how to get listed in Yahoo News? I’ve been trying for a while but I never seem to get there! Thank you|

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  322. Greetings from Colorado! I’m bored to death at work so I decided to check out your website on my iphone during lunch break. I love the information you present here and can’t wait to take a look when I get home. I’m surprised at how fast your blog loaded on my phone .. I’m not even using WIFI, just 3G .. Anyways, superb site!

  323. Howdy would you mind letting me know which hosting company you’re using? I’ve loaded your blog in 3 completely different internet browsers and I must say this blog loads a lot faster then most. Can you recommend a good hosting provider at a reasonable price? Thank you, I appreciate it!

  324. We absolutely love your blog and find a lot of your post’s to be what precisely I’m looking for. Does one offer guest writers to write content in your case? I wouldn’t mind creating a post or elaborating on some of the subjects you write with regards to here. Again, awesome site!

  325. Hello this is kinda of off topic but I was wanting to know if blogs use WYSIWYG editors or if you have to manually code with HTML. I’m starting a blog soon but have no coding expertise so I wanted to get advice from someone with experience. Any help would be enormously appreciated!

  326. Good site! I truly love how it is simple on my eyes and the data are well written. I’m wondering how I could be notified whenever a new post has been made. I’ve subscribed to your RSS feed which must do the trick! Have a nice day!

  327. Hey fantastic blog! Does running a blog similar to this take a massive amount work? I’ve virtually no expertise in coding but I had been hoping to start my own blog in the near future. Anyways, should you have any suggestions or techniques for new blog owners please share. I know this is off topic however I simply had to ask. Appreciate it!

  328. Wow that was odd. I just wrote an extremely long comment but after I clicked submit my comment didn’t appear. Grrrr… well I’m not writing all that over again. Regardless, just wanted to say excellent blog!

  329. excellent submit, very informative. I wonder why the opposite specialists of this sector do not notice this. You should proceed your writing. I am confident, you have a great readers’ base already!

  330. I’m curious to find out what blog system you have been working with? I’m having some small security issues with my latest site and I would like to find something more safe. Do you have any suggestions?

  331. Hi there! This is my first comment here so I just wanted to give a quick shout out and say I truly enjoy reading your blog posts. Can you recommend any other blogs/websites/forums that deal with the same topics? Thanks for your time!

  332. I am curious to find out what blog platform you happen to be working with? I’m experiencing some minor security issues with my latest site and I would like to find something more safeguarded. Do you have any solutions?

  333. Hey there! Do you know if they make any plugins to assist with SEO? I’m trying to get my blog to rank for some targeted keywords but I’m not seeing very good results. If you know of any please share. Thank you!

  334. It’s a shame you don’t have a donate button! I’d without a doubt donate to this outstanding blog! I suppose for now i’ll settle for book-marking and adding your RSS feed to my Google account. I look forward to new updates and will share this blog with my Facebook group. Talk soon!

  335. Hello there! This is my first visit to your blog! We are a team of volunteers and starting a new initiative in a community in the same niche. Your blog provided us beneficial information to work on. You have done a extraordinary job!

  336. Today, I went to the beachfront with my kids. I found a sea shell and gave it to my 4 year old daughter and said “You can hear the ocean if you put this to your ear.” She put the shell to her ear and screamed. There was a hermit crab inside and it pinched her ear. She never wants to go back! LoL I know this is totally off topic but I had to tell someone!

  337. Good day! I know this is kinda off topic but I was wondering which blog platform are you using for this website? I’m getting fed up of WordPress because I’ve had problems with hackers and I’m looking at alternatives for another platform. I would be fantastic if you could point me in the direction of a good platform.

  338. Wonderful blog! Do you have any suggestions for aspiring writers? I’m hoping to start my own website soon but I’m a little lost on everything. Would you recommend starting with a free platform like WordPress or go for a paid option? There are so many options out there that I’m completely overwhelmed .. Any suggestions? Thanks!

  339. Howdy just wanted to give you a quick heads up. The words in your post seem to be running off the screen in Chrome. I’m not sure if this is a format issue or something to do with browser compatibility but I thought I’d post to let you know. The style and design look great though! Hope you get the problem resolved soon. Cheers

  340. Woah! I’m really loving the template/theme of this blog. It’s simple, yet effective. A lot of times it’s hard to get that “perfect balance” between usability and visual appearance. I must say you’ve done a awesome job with this. Also, the blog loads extremely fast for me on Opera. Exceptional Blog!

  341. Hey I know this is off topic but I was wondering if you knew of any widgets I could add to my blog that automatically tweet my newest twitter updates. I’ve been looking for a plug-in like this for quite some time and was hoping maybe you would have some experience with something like this. Please let me know if you run into anything. I truly enjoy reading your blog and I look forward to your new updates.

  342. I absolutely love your blog and find nearly all of your post’s to be just what I’m looking for. Would you offer guest writers to write content in your case? I wouldn’t mind creating a post or elaborating on some of the subjects you write in relation to here. Again, awesome weblog!

  343. Hello! This is my first visit to your blog! We are a group of volunteers and starting a new project in a community in the same niche. Your blog provided us valuable information to work on. You have done a extraordinary job!

  344. Hi! This is kind of off topic but I need some guidance from an established blog. Is it tough to set up your own blog? I’m not very techincal but I can figure things out pretty fast. I’m thinking about setting up my own but I’m not sure where to start. Do you have any tips or suggestions? Cheers

  345. I’m not that much of a online reader to be honest but your sites really nice, keep it up! I’ll go ahead and bookmark your site to come back in the future. Cheers

  346. I am curious to find out what blog platform you have been utilizing? I’m experiencing some small security issues with my latest site and I would like to find something more secure. Do you have any solutions?

  347. Awesome site you have here but I was curious if you knew of any community forums that cover the same topics talked about here? I’d really like to be a part of community where I can get feed-back from other knowledgeable individuals that share the same interest. If you have any recommendations, please let me know. Many thanks!

  348. Hey! I know this is somewhat off topic but I was wondering if you knew where I could locate a captcha plugin for my comment form? I’m using the same blog platform as yours and I’m having trouble finding one? Thanks a lot!

  349. Write more, thats all I have to say. Literally, it seems as though you relied on the video to make your point. You obviously know what youre talking about, why throw away your intelligence on just posting videos to your blog when you could be giving us something enlightening to read?

  350. Hey! Do you know if they make any plugins to assist with SEO? I’m trying to get my blog to rank for some targeted keywords but I’m not seeing very good gains. If you know of any please share. Kudos!

  351. Do you have a spam issue on this blog; I also am a blogger, and I was wanting to know your situation; many of us have created some nice methods and we are looking to swap strategies with other folks, why not shoot me an email if interested.

  352. I’m not sure exactly why but this website is loading incredibly slow for me. Is anyone else having this problem or is it a problem on my end? I’ll check back later and see if the problem still exists.

  353. Superb blog! Do you have any recommendations for aspiring writers? I’m planning to start my own site soon but I’m a little lost on everything. Would you suggest starting with a free platform like WordPress or go for a paid option? There are so many choices out there that I’m totally overwhelmed .. Any tips? Thanks!

  354. First of all I would like to say great blog! I had a quick question that I’d like to ask if you don’t mind. I was curious to know how you center yourself and clear your thoughts prior to writing. I’ve had a hard time clearing my thoughts in getting my thoughts out there. I truly do take pleasure in writing but it just seems like the first 10 to 15 minutes tend to be lost just trying to figure out how to begin. Any recommendations or tips? Many thanks!

  355. Hey, you used to write fantastic, but the last few posts have been kinda boring¡K I miss your tremendous writings. Past several posts are just a little out of track! come on!

  356. I’m really enjoying the design and layout of your website. It’s a very easy on the eyes which makes it much more pleasant for me to come here and visit more often. Did you hire out a developer to create your theme? Fantastic work!

  357. Do you have a spam problem on this website; I also am a blogger, and I was wanting to know your situation; many of us have developed some nice practices and we are looking to trade methods with others, be sure to shoot me an e-mail if interested.

  358. Hey there, I think your website might be having browser compatibility issues. When I look at your website in Chrome, it looks fine but when opening in Internet Explorer, it has some overlapping. I just wanted to give you a quick heads up! Other then that, superb blog!

  359. Hi there! I know this is kinda off topic but I’d figured I’d ask. Would you be interested in exchanging links or maybe guest authoring a blog article or vice-versa? My website covers a lot of the same topics as yours and I believe we could greatly benefit from each other. If you are interested feel free to send me an email. I look forward to hearing from you! Excellent blog by the way!

  360. Hello! I’m at work surfing around your blog from my new iphone 3gs! Just wanted to say I love reading through your blog and look forward to all your posts! Keep up the great work!

  361. Hello there! This is kind of off topic but I need some advice from an established blog. Is it tough to set up your own blog? I’m not very techincal but I can figure things out pretty quick. I’m thinking about creating my own but I’m not sure where to start. Do you have any points or suggestions? With thanks

  362. Hi there! Someone in my Facebook group shared this website with us so I came to look it over. I’m definitely loving the information. I’m book-marking and will be tweeting this to my followers! Outstanding blog and superb design and style.

  363. Hi there would you mind letting me know which hosting company you’re using? I’ve loaded your blog in 3 different internet browsers and I must say this blog loads a lot faster then most. Can you suggest a good internet hosting provider at a reasonable price? Kudos, I appreciate it!

  364. Hi there! I just wanted to ask if you ever have any problems with hackers? My last blog (wordpress) was hacked and I ended up losing many months of hard work due to no backup. Do you have any solutions to protect against hackers?

  365. I am curious to find out what blog platform you are utilizing? I’m having some minor security problems with my latest website and I’d like to find something more safeguarded. Do you have any suggestions?

  366. Today, I went to the beach front with my kids. I found a sea shell and gave it to my 4 year old daughter and said “You can hear the ocean if you put this to your ear.” She put the shell to her ear and screamed. There was a hermit crab inside and it pinched her ear. She never wants to go back! LoL I know this is totally off topic but I had to tell someone!

  367. Hey I know this is off topic but I was wondering if you knew of any widgets I could add to my blog that automatically tweet my newest twitter updates. I’ve been looking for a plug-in like this for quite some time and was hoping maybe you would have some experience with something like this. Please let me know if you run into anything. I truly enjoy reading your blog and I look forward to your new updates.

  368. Hi! I know this is somewhat off topic but I was wondering if you knew where I could get a captcha plugin for my comment form? I’m using the same blog platform as yours and I’m having problems finding one? Thanks a lot!

  369. Excellent website you have here but I was wondering if you knew of any community forums that cover the same topics talked about here? I’d really love to be a part of group where I can get comments from other knowledgeable people that share the same interest. If you have any suggestions, please let me know. Bless you!

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  371. I am curious to find out what blog system you have been utilizing? I’m having some small security issues with my latest site and I’d like to find something more secure. Do you have any suggestions?

  372. Hey I know this is off topic but I was wondering if you knew of any widgets I could add to my blog that automatically tweet my newest twitter updates. I’ve been looking for a plug-in like this for quite some time and was hoping maybe you would have some experience with something like this. Please let me know if you run into anything. I truly enjoy reading your blog and I look forward to your new updates.