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April 1st, 2008
08:37 AM ET

Navigating Emma's autism

By Phil Riley
CNN Senior Writer

My cellphone rings and I know it's bad news.

Only 8 a.m., but the school nurse needs me to take Emma home.

She's biting and scratching herself, and it's taking two adults to restrain her.

I can't ask Emma why she's so upset. She can't tell me.

ALT TEXT

Emma Riley and her family have been struggling with autism

Emma is 11 years old. She has suffered from autism for a decade. Her family has, too.

It started in the 1990s, still the dark ages for autism.

The pediatrician said not to worry about Emma's development.

The psychologist who diagnosed her said to my wife and me, "Read this book."

It confused and scared us even more.

We've come a long way since then.

So has Emma.

She's more affectionate toward her family, more tolerant of changes in routine.

But challenges continue.

My wife and I've had to fight to get Emma in classrooms where we hoped she would thrive.

It's not always worked out.

Just like social interactions.

Typical kids don't want to hang out with a girl who doesn't share their interests or can't have a conversation.

No going out to a restaurant or church as a family.

Spouses spelling each other is good. Less time together as a couple, not good.

Guilt when you're not there for her brother.

Sleep deprivation.

But what most concerns my wife and me is this: How will Emma get along when she's an adult... or when we are no longer physically able to care for her... or after we're dead?

Recently I took our 14-year-old son, Conor, to a school admissions interview.

Later, he told me they had talked about Emma and he had said, "I've had to help watch out for her."

And Conor was asked how he felt about that.

His answer: "You learn to serve others and not just yourself."

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  1. cyndee miller

    I have been watching and on the computer trying to seeas much of the cnn day with autism as I can get. I have a 5year old grandson that has been diagnosed with autism since he was about 3. Caleb is a blue eyed blonde who is speaking, but not always clearly, he smiles and hugs and kisses...he also cries, has meltdowns, and is easily frustrated. We all live in Northern NH where there are no vaciities, no one with any expertise in Autism. no workshops , nothing to train our staff in the public schools. All we hear from the school was Caleb tries to get out of his work, he is in a power struggle,he needs to change his behavior, and on and on!!!!I could just scream..Doesn't anyone get it? Help Please. I work in the public school system and I feel like I am on a crusade by myself..Caleb is not alone, we have several children all diagnoised on the spectrum!!!! Isn't there some one out there who can help us up north?

    April 3, 2008 at 12:42 | Report abuse | Reply
  2. suzann

    Hi...

    I have twin boys with autism..they will be 18 in a couple of days.
    We have the same worries as you do with Emma. Friends, being accepted for whom they are, what will happen to my boys in our old age etc...

    It is a struggle for every parent with a child with autism.
    I just try to live new everyday...laugh Alot because if you don't laugh you will end up crying. Be thankful.

    Suzann

    April 3, 2008 at 13:06 | Report abuse | Reply
  3. Flagstaff Native American MOM

    When my son was born by motherly instinct I knew there was something that was going to be different about my seventh child. I want my world to surround him more than anything. After birth I held him in my arms and I told him in my loving but strong and sincere heart "be strong, I love you." My voice calmed his cry. As soon as the nurses took him my only thought was I need to tell him more and I want to talk to him with the holy people and the great father sky. My newborn at 5lbs. 1.5oz. At first I refused the first injection, but accepted, and that was the last I heard my baby cry.
    I never heard of Autism nor did I have the faintest clue as to what I would face as a mother. But, I did notice a difference from my other children. If I had not been blessed with other beyond average children, and had this experience as a first, "my new born baby would have been the best baby, good baby, no colic, just unbelievably observant."
    Finally, he's in my arms. Days of his life went by and I told him often that he needs to make noise and he needs to cry for now until he can speak or make sounds like talking voices do. The only hope I had at his times as a new born was to follow my culture in touching him, messaging him, singing to him, swadling him in his security blankets, constantly interacting with him and teaching & telling him about the world, earth, people and his family. Much of it was to show strength as a baby–looking around, watching, and just learn about what is happening.
    Soon, about 10 month's his first words "cup" and pointing to the kitchen sink. I stated to him, "you want water?" and the response was giggling and clapping, ' FOR THE FIRST TIME!" I cried and laughed, we rewarded each other, and that was when I got my first hug. I thought my other children's accomplishments were great, but this took all 'encore's' from the world. Later, at 3 or close to four my child was speaking or gibberish words, which later turned out to be spanish. "WHAT?" "Spanish?" But, we're Native American Indians. At the later 4 years it was a mixture of Spanish, Dine', and English–and making sentences here and there. At times when swinging, activity, or out of the blue. It was a wonder of confusion, but as MOM, I loved my child for this uniqueness. "IT WAS SUCCESS!" This kid is intellegent after all!
    My worst night mare was when headstart began. All the other children were professional speakers, I didn't mind I taught him alot over the five years, and the only thing I had in mind was–social groups, "yes!". Well, after getting beat up by other bullies, and my child couldn't speak out and didn't know how to tell what happened, yet alone in the Autistic world to hurry and speak all three languages at once. The turn out 'we always got the blame.' Later, bruises on the cheeks, legs, and a deep laceration kept getting reported. Nothing ever was done, these ignorant non-certified teachers focused on baby sitting not education or re-directing. Soon, I pulled him and began to continue to teach my child at home again. he blossomed even more, and I kept researching the internet for "types of disabilities". Finally, I thought to myself that I wasn't finding anything that fits this unique child and this time I typed in 'the latest un-named disability', lowing behold, "AUTISM."
    I couldn't stay away from my computer. I read everything over and over. I observed and was ecstatic to know that I was elected to reach out to my own child. And? "I did it!"
    I am fully aware and kept up with the update of Autism. I remained anonymous–why? Because Headstart showed me how little people are pushed around and set aside and often they get shut out of the environment even more. So, it was a trust issue. No one knew my child but me! Finally, in 2008 I met up with a trusting teacher, a trusting school psychologist, and it was the big test analysis–diagnosis? "Autism", to me, no gig deal I knew it, now its just lets get some more resources and allow the "experts" help.
    So much for that! After all ll the years I worked with my child he began to regress at school. It was as if my child was in 'quick dry sand and was getting burried by the movement around the Autistic world'. I took all measures–resigned from my "new first job" since I don't remember, and began my first fight with the school system and began to re-teach at home–PROGRESS and SUCCESS again! To NO surprise he advanced even more.
    There's more, and I left out alot of other issues that led me to silently research this Autism a bit more. I have been yelled at and asked how many years of experience have I had with Autism, and that I never been with Autistic kids, or that I am NOT an educator–. Ignored it all, and focused on what I was doing for the community, working with Autistic children. In my mind, who better than me. I've seen writings from the majority to the parents stating that their child was not capable of learning with the groups of the "norm" and watched parents advocate for their child and quietly I knew what i would be up against in the future with my own child.
    But, for now I will leave you all with this basic experience with Autism. I want to reach out more, I want to help research because these kids and some now adults are "absolutely phenominal!"

    April 3, 2008 at 13:18 | Report abuse | Reply
  4. Victoria Brown

    My husband was diagnosed with Asperger's at the age of 57. He doesn't want to deal with it in any way.

    He cannot make eye contact. He can't empathize with anyone or show compassion. Physical affection makes him uncomfortable. If I hug him his arms hang at his sides or barely touch me. He's never hugged our kids or grandchild. He told me that the fact that he married me showed he loved me and I should be content with that. He didn't need to say "I love you".

    He's an engineer and is very good at his job. He works long hours, especially after most people have left. He admits that he doesn't like people. He doesn't know what to say to anyone. His social skills are worse than our granddaughter's.

    He doesn't grasp concepts. When we watch a movie, he asks questions non-stop. When the movie is over, he has no idea what it was about or what happened. Stupid comedies are the only exception. He thinks The Three Amigos is Oscar caliber.

    We've been married for 38 years. When we found out he had Asperger's it didn't change anything but it did explain a lot. When he does something or doesn't do something, I know it's Asperger's at work. I did a lot of research and at his age, very little can be done. But, he could learn ways to behave that are closer to the norm.

    As I said in the beginning, he won't even talk about it so he'll always be the way he is. I'm the one who has to change my way of thinking and my expectations. Most of the time, I can do this. Other times, I'm dealing with health issues and don't have the energy to make this marriage work.

    He said he doesn't like being around me when I'm not happy. When I'm unhappy, he's unhappy. Not from sympathy but because my emotions become his. I have Chronic Fatigue Syndrome and breast cancer plus a lot of orthopedic issues. I need him to lean on but if I tried, he'd keel over.

    I was glad to see that a man with Asperger's responded. You rarely hear about Asperger's in adults in any type of medical reporting. There are a lot of them out there both male and female and a lot of spouses trying to get through the day. I dread weekends. I love my husband and he is a good person but what I want he is incapable of giving me.

    Thanks for providing a place to read and write about this.

    April 3, 2008 at 13:37 | Report abuse | Reply
  5. Donna R.

    Dear Mr. Riley,
    Reading your story the part about what will happen to Emma if you can't take care of her anymore caught my eyes. I have 2 girls ages 9 and 10yrs. who is also autistic and was diagnosed at the age of 2 and 3yrs old. We were also thinking the same thing that you thought for the longest time but didnt know what to do. Then one year when we were doing the Walk for Autism, We met Kirk Barth from New England Financial. Working with him we got insurance for our 2 girls. They can now be taken care of even if we're gone till the age of 100. There's lots more things you can ask Mr. Barth about. You can e-mail him at kbarth@hawaii.nef.com. Good Luck .

    April 3, 2008 at 14:39 | Report abuse | Reply
  6. phil riley

    It has been a revelation reading your comments. Gordon-you expressed yourself well and gave me insight into the life of an adult with Asperger's I hadn't had before. Jeannette-I feel your dilemma. We have thought to move at some point to a rural area with a close-knit community. But you can struggle to find the right services and schools. You're blessed to have a good teacher for your daughter, though. I think parents seeking services in rural areas is a good story idea and I will pass it on. Carolyn & Meg-thank you for your great support. We love you and wish we could see you. Dawn-I can't speak specifically about your case, but I do know from experience there are law firms out there that take the cases of special needs students who are not getting appropriate educations. And many of those do pro bono work. I assume if the school is in Belmont, you live in the Boston area, and you would have more chances to find a suitable firm than if you lived in a rural area (back to the urban-rural inequality). You just need to make some calls. Don't give up and don't let your son give up.

    April 3, 2008 at 15:06 | Report abuse | Reply
  7. Betty

    Homeopathic remedies will immunized as effectively as the drugs without the side effects. They just take longer but I'm sure many parents would want to know about them. It's too bad your TV program and this website has not looked into this alternative.

    April 3, 2008 at 17:22 | Report abuse | Reply
  8. kirsten bilodeau

    Phil, thanks so much for "going public" with your family's story. I felt compelled to watch all day yesterday, but at the same time, it left me exhausted. I'm sure everyone reading knows this feeling.

    Our younger daughter, Zoe is 2 1/2. She was dx'd with ASD, high-functioning last spring. I just want to share a quick story that hopefully you'll get a chuckle out of. She's been in speech therapy for a year now, and will occasionally say a random word, but then it disappears for weeks, or months, or not to be heard again.

    We were driving our older daughter, Andi to swim team practice a few weeks ago.

    Andi was asking us how to send a card to someone who was sick at our church, and I said, "we'll send it to his house". Zoe said "house", and actually pointed to a house. Andi said, "Mom did you hear her?" I said, "I know, I can't believe it, I've been trying to get her to ask for her binky for 6 mths!" Then Zoe said "binky". Andi was like, "what else can we get her to say?" We both started looking out the window. Andi said, "Zoe, can you say "sky"? Sure enough, Zoe did.

    Andi said, "Zoe can you say tree?" Zoe looked at her, and in her very flat little voice said, "No". And that was it. She hasn't said any of those words again, naturally. But it's these little glimpses of hope, lucidity, and maybe even humor that help us get through the day. Thanks again for helping promote knowledge about autism.

    April 3, 2008 at 19:50 | Report abuse | Reply
  9. Cat

    I find all of your comments very helpfull. Some give me encouragement some, teach me to be careful. I wish we could do more. I wish every child with autism could have the same attention, the same care, could be given the same chance. I know they would still be different, but they all deserve the same and defenitelly much more than the society is giving them these days.
    I also would like to ask for some opinions. I am really interested to learn about any parents that have been attachment parenting their children with autism.
    I have been practicing attachment parenting and I find it ,especially
    now, after my son's diagnosis, very thriving. I am just trying to keep
    a balance now between my parenting style and some of the approaches to autism. Like the ABA theraphy for example. I think my son will benefit both, but I am still searching for a confortable balance between the two.
    I wish you all strength and love and withdom!
    Thanks

    April 4, 2008 at 00:56 | Report abuse | Reply
  10. phil riley

    I have not been able to get Genie's story out of my mind. Her 29-year-old daughter pleading with her "Don't get old," as the daughter is left at a group home. I know Donna left a suggestion about filling the financial gap for a special needs child's future, and that's very important, but what about the emotional gap? After doing so much for an autistic child, but being unable to prepare him for independent living, how does a couple feel when they drive away from a group home? Or what does a surviving spouse say to an autisic son or daughter about why Mom or Dad won't be around any more? Tough, very tough.
    Andre's comment reminds me that as important as it is for the media to bring awareness, parents must be proactive. Please get your son "officially" diagnosed. I don't know what it's like in South Africa, but that diagnosis opens the door to services in most countries.
    Norma, I am with you on focusing on a child's strengths. We do that. Victoria-Thank you for bring so open and so specific about the struggles your husband and you are going through. I hope your words will help others dealing with spectrum diagnoses as adults. What do you do when you know a loved one would benefit from joining a support group, as an example, but he or she won't talk to you, let alone to strangers? Cyndee, I hear your outrage. As I wrote earlier, I'm going to push for us to do a story on services gaps in small towns.
    Suzann-you're absolutely right, you have to laugh sometimes, no matter how bleak things get. On the topic of struggling toward success, the stories of Valery, VBruce, Vicki and Flagstaff Mom are so compelling. My favorite stories are the "glimpses" that Kirsten wrote about. The moments that seem minor to typical families, but shoot down like lightning bolts to families like us. Emma loves doing math, and she's a whiz at it. But I remember a few years back when she was struggling to do simple addition. And she just wasn't getting it. I was writing out the numbers and using models and trying different ways to get through. And, all of a sudden, she grabbed the pencil from me, took the paper and did all the problems perfectly. SHE GOT IT! Emma was beaming and I was screaming. Conor ran downstairs, not knowing what was happening, and he joined in our joy. And when I heard my wife's car, I ran outside yelling and at first scared the heck out of her, too, and dragged her inside to witness. What a time we had! I wish all of you some breakthroughs. Let me know of them.

    April 4, 2008 at 10:41 | Report abuse | Reply
  11. joelle

    Hi Phil
    May I ask you what are the interests of Emma(Hobbies,Sports..) and what are those of her camrades?
    Also,I am making a "study" about autism(haven't tell you that my nefew is autistic,he is 13y.old and started high school last Sep.We've been VERY CLOSE between his age of 1 to 6y.I was his "nanny".His autism started at 2 and an half.)
    I would like to know if your wife had a stressed pregnancy,a bad delivery and a c-section.That happened to my sister.

    April 5, 2008 at 08:42 | Report abuse | Reply
  12. tara

    For the past 6 months, we have been helping our 8 y.o. daughter to recover from autism. The first step we took was to find a DAN! (Defeat Autism Now) Doctor. These doctors go to DAN! conferences and learn about biomedical treatments to help children with autism. Olivia has been tested for food allergies/sensitivities, yeast overgrowth, nutritional deficiencies, and toxins. We were shocked by the results! She is allergic to gluten which is found in wheat, oats, rye, barley, as well as a few other grains. Many, many, many, foods have hidden sources of gluten! I have become a detective in reading labels. Casein, which is found in dairy, is another food protein which she must now avoid, along with soy because it is very similar to casein. And the one food that I never would have thought that she'd be allergic to is PEANUTS! She had eaten peanut butter and jelly sandwiches almost every day of her life. That is probably why she developed a sensitivity to it. I did not believe that she had food allergies until I saw the results of the test. An IGG test shows the foods that your child may be sensitive to and what should be avoided. We never noticed an allergic reaction after she ate something. The difference between a food allergy and a food sensitivity is that a sensitivity is not immediate, but delayed. The reaction can be from 1 to 3 days later and results in behavior problems. One problem may be that some sights and sounds are unbearable to them at times, but can be tolerated when they are on a strict diet. Other problems may be aggression, hyperactivity, uncontrollable laughter or crying, stimming. Lots of children with autism benefit from a Gluten Free/Casein Free diet. Many foods even list on their label GLUTEN FREE. If you are interested in learning more, there are lots of different Gluten Free websites, products, recipes, and books out there. All kinds of alternatives that they can eat, so please don't feel too bad for them. Olivia still enjoys pancakes, waffles, pizza, rolls, cheese, yogurt, milk, chocolate chips, and especially ice cream. It is better that they avoid the foods that give them problems so that they can feel better both inside and out. A great website to learn more about this special diet and other ways to help children with autism is http://www.talkaboutcuringautism.org.

    Olivia also had very high yeast overgrowth in her body. Antibiotics, carbohydrates, and sugar can all contribute to the amount of yeast in your body. Olivia had lived on carbs and fruit; two things that yeast thrives on. All the antibiotics that she took as a baby and toddler with frequent colds helped to kill the bad bacteria but also the good bacteria. Then that allowed her body's yeast to overgrow. She has been on antifungals to kill the yeast, now eats a more balanced diet with meat and vegetables, and takes a probiotic to put the good bacteria back into her body which helps her to fight off colds.

    Supplements are also part of her life now. Many children with autism are deficient in certain nutrients. Partly because their bodies can't absorb these nutrients and partly because they are picky eaters, avoiding foods that have a different texture or funny smell to them. Once you start replacing the vitamins and minerals that they lack, foods taste better to them, their immune system is healthier, and their brain functions better. Olivia now eats almost anything we put in front of her. She has only had one cold all winter. And her teachers say that she is more focused at school, making her able to better learn new things. She used to be way behind in Reading and Math, but now her vocabulary is close to that of other typical 2nd graders and she can even read some 3rd grade books. Her receptive language has greatly improved. She understands most anything that we ask her to do and does it. Her expressive language is coming along. She is trying, but you can tell that she still tries hard to search her brain to find the words that she wants to use. Next week we will find out the results of her toxin test. If she has a buildup of toxins in her body that she can't excrete like most people, she will need to start detox. That along with the Methyl-B12 shots that she is currently taking, will hopefully help her to find the words that she so frequently has trouble finding.

    If your head is spinning from all this information, well ours were too, six months ago. We have a much better grasp on it now. The reason I'm telling everyone is because there are ways to help children with autism. Keys to unlock what causes autism. A way for them to recover. We first started this quest after I read Jenny McCarthy's book Louder Than Words, A Mother's Journey in Healing Autism. Jenny McCarthy is a famous actress whose son Evan was diagnosed with autism in 2005. After doing tons of research on the computer, she found websites about helping children recover from autism. She applied the information that she found, talked with the best autism specialists, and documented the process that helped Evan to recover from autism. Now parents have the steps to take to help their children. The most frustrating thing before was not knowing where to go, what to do, what information to believe. With Jenny's celebrity status, she has been on many talk shows, has told her son's story, and has shown the videos to prove that Evan was autistic and now has recovered from autism. You can find out more about Jenny and her book on the TACA website listed above. She is now a spokesperson for TACA (Talk About Curing Autism). Both Jenny and her boyfriend actor Jim Carrey are speaking out about Evan's recovery from autism and trying to help other autistic families to have HOPE!

    I want to be able to help other families who feel that they are stuck and have no where to go and nothing that they can do. There is a lot that they can do. All they need is HOPE!

    Olivia goes to a public school in rural Maryland where she is in a small classroom with other kids who have autism. I also know that Delaware has great public schools for kids with autism.

    I also want to urge families to try church. My church started a nursery for kids during the church service and Olivia watches videos while we listen to the sermon. She stays for some of the singing and then goes to the back room to play, color, etc. after awhile. An adult or teenager always goes along to supervise. Olivia loves music. She often asks me to sing church songs to her at bedtime or to calm her when she's upset. I don't know how much she understands about God and Jesus, but she likes going to church. I also make sure that she wears comfortable clothes and not scratchy dresses and tight shoes that can annoy her. My church is very casual and family oriented and I know that Olivia feels loved when she's there.

    April 8, 2008 at 00:29 | Report abuse | Reply
  13. Sara Lee

    This comment is not directly to the article Emma's Autism. I watched CNN's piece about Autism (I am not sure what it was exactly called), and I have to say that Autism doesn't seem to me like a hard thing to fight. I am not exactly aware of all the symptoms or the causes of Autism, however, I feel that a mild case of Autism can be easily cured. If there is a medical difficulty resulting in the symptoms of Autism, that is unfortunate and I give my blessing to the families. However, as I was reading some comments, it's really disappointing to me that some parents just state that after watching the CNN piece that they are convinced that their children have the symptoms, and therefore they have Autism. Why would you convince yourself that?

    The symptoms of Autism are: have extreme difficulty developing normal relationships with others. They tend not to share in the interests their peers have. In many cases these children are not able to interpret non-verbal cues of communication like facial expressions. Most people with autism have some impairment in language and many never speak at all.
    How are these a disease? Parents should not have their children stop communicating with others because they state that their children have "autism." Parents should encourage their children to build relationships with others. Anyone can learn to build relationships, that is the part of growing up as a person. Also, people say Autism usually comes around at age three. How do you know that your child has communication issues at such a young age? That's when they just begin communicating, and some are shy than others. This is not a disease or a disorder.

    So I urge parents to not settle for their child having "autism." Instead, work at it because I think it can easily be fixed. While your child grows up, encourage them to communicate with others. Parents should always communicate with their children. What really disappoints me is when I hear parents keep their children away from the public because they have Autism. Also, it worries me when parents say that they feel bad for their children's mental state. It seem that that one word "autism" just gives up all hope. No, it does not. I do not think Autism is any type of disorder or disease.

    I hate doctors who tell us that children can not help how they behave because they are autistic! First of all, it's called building their personality, self- esteem, and mind while they are growing up. Secondly, it's never too late to help someone build self-esteem. Thirdly, what gives them the right to label a person as having a disease because they are less communicative than others? Discipline your kids and teach them to grow.

    April 8, 2008 at 03:29 | Report abuse | Reply
  14. joey

    Paul,

    Thank you for sharing. Your entire story resonates. Our children are much younger, but I share the same concerns, including those for my "typical" son. Are we spending enough time with him? Will he feel his brother is a burden or a gift to treasure when we are no longer here to look out for them? We only hope that cultivating that love for one another will be enough when we are gone.

    Oh, and Conor for President! To have a world full of people who learn that important message...

    “You learn to serve others and not just yourself.”

    April 8, 2008 at 09:24 | Report abuse | Reply
  15. nicole

    My comment is directed towards autism (specifically the ignorant comments and perspectives being voiced by mccarthy and mccain). HELLO, has anyone thought about the possibility that since this is a developmental disorder its potentially caused by either (A) the use of fertility drugs or (B) babies being created from eggs that have been rotting away in the ovaries for 50 years combined with fertility drugs. If these ovum would under normal circumstances not become fertilized, perhaps older women should realize they will be creating trouble for their offspring, and not be seduced by the lure of fertility drugs. It is odd that people like jenny wouldn't look at what she did to cause this disorder to develop. Honestly, if it were as simple and as causative as vaccination we would all be autistic. SERIOUSLY PEOPLE NEED TO START TO LOOK AT FERTILITY DRUGS AND MOTHERS HAVING BABIES OVER THE AGE OF 35 (AFTER THAT IF YOUR NOT NATURALLY FERTILE, YOUR BEAT)

    April 8, 2008 at 14:19 | Report abuse | Reply
  16. joelle

    To Sara Lee WELL SEEN
    PS: what helped Jenny's son is that Jenny felt better with Jim Carey.When a mother feels good ,her child feels good too.

    April 9, 2008 at 04:57 | Report abuse | Reply
  17. tara

    Some people have no clue about autism. I was 26 when I had my daughter. No one ever noticed the obvious signs that she had as a baby that were signs of autism. No eye contact, not pointing to things, not responding to her name. I never had fertility drugs, as I and all the other autistic moms that I know who were in their 20's when they had their autistic children did. In light of the Poling Vaccine Injury case, vaccinations along with a mitochondrial disorder (problem with cells being able to process proteins and therefore absorb nutrients) that many kids with autism have can be the cause of autism. Putting a ton of vaccines into our babies who have an immature immune system is hurting many of our children, not all of them. Why can't we wait until our kids are 3 or 4 to vaccinate them or give them 1 shot at a time instead of pumping them full of vaccines when they are BABIES! As Jenny pointed out, 15-20 years ago there were 10 vaccines, now that has increased to 30+! Kids with autism have all kinds of underlying problems, such as sensitivities to certain proteins in foods like wheat and dairy, (my daughter also has a huge sensitivity to peanuts), yeast overgrowth in their bodies, toxic metals being stuck in their bodies, etc. I have seen her test results and I wouldn't have believed it otherwise. Jenny and other parents are helping their children to RECOVER from autism everyday b/c they have tested them and are taking the necessary steps to help them get better. That may include putting them on a strict diet, giving them supplements, getting rid of their yeast and toxins. I am seeing it happen before my own eyes! Her teachers, school staff, family, and friends are all noticing changes in her behavior and ability to communicate. There is a whole bunch of people trying to Defeat Autism Now! There are doctors and parents being educated in these biomedical treatments of autism and sharing this information at DAN conferences. It is hard work and can be expensive but kids are RECOVERING. To find out more, visit http://www.talkaboutcuringautism.org. The TACA website is full of information about the GFCF Diet and finding a DAN doctor and other things that parents can do.
    I urge parents to go to this website, find a DAN doctor who are experts in treating autism, and think about the foods and medications and vaccines that are going into your child's body. We are not a healthy society and all the things that are going into our children did not go into our bodies 15, 20, 30 years ago.
    And if you don't know anything about autism, find out more before you spout your mouth off saying offensive things about a subject that you haven't researched! It has nothing to do with fertility drugs, older women, socioeconomic status, drugs or anything else to do with the mother. So don't go blaming moms! Read Jenny's book, "Louder Than Words". It will open your eyes to what she went through and how she became determined to help her son DEFEAT AUTISM!

    April 9, 2008 at 10:58 | Report abuse | Reply
  18. Dianne

    My son who is 14 also has autism. We are having a terrible time with the schools. They call the police when he has a meltdown and then the police taser him multiple times. The most recent incident two weeks ago caused him to be rushed to the hospital because he couldn't breathe. I am so scared that they will kill him after this incident. I don't know what to do.

    April 9, 2008 at 15:49 | Report abuse | Reply
  19. nancy

    Phil,

    What a beautiful girl Emma is! Now for my advice...please watch the web-seminar tomorrow at noon by the boy (now a man) whose parents started Son-Rise...go to autismtreatmentcenter.org please! The most change will be for you and your wife but it will change your life and Emma's too! Most of all it will restore your hope. I did not read where you live but I have two more suggestions. Public school is great if you are getting the support and understanding you need for Emma – if not, I urge you to investigate full-time programs specifically for ASD kids (I'm not a big ABA person but at least they understand our kids) or a private school for autistic children (hard to get into but often worth it). Even more important – please take Emma to a DAN (defeat autism now) doctor (NOT A REGULAR PEDIATRICIAN). There are so many biomedical treatments that can help with the self-injury and sensory overload. also, take a good look at emma's diet...is she eating only organic, chemical-free foods? can you try the dairy-free & gluten-free diet? can you limit her sugar & carb intake? these suggestions are good for any age person – there is so much support out there to help you navigate the nutritional/bio-med approad to ASD.
    My son was diagnosed at a little past 2...we have tried everything except swimming with the dolphins...most things have worked to some extent, a few things have not...nothing has been a magic bullet but now, at 7.5 years old (and for the last few years), my son can go anywhere and do anything and is verbal (but not conversational, yet). He loves going to all his favorite playgrounds in Manhattan, and is mostly a regular boy. He still flaps and noises and I wonder and pray every day who and what will be there for him when he gets older. But help is still on the way. and the son-rise program is a miracle! Best of luck!

    April 9, 2008 at 19:36 | Report abuse | Reply
  20. joelle

    Keep Emma in public school,Phil,she needs contact with "normal" kids.Do you have contacts with the parents of the school?

    April 11, 2008 at 04:25 | Report abuse | Reply
  21. joelle

    hi phil
    what is good for autistic children is equitation,horsemanship.

    April 13, 2008 at 04:23 | Report abuse | Reply
  22. phil riley

    I agree, Joelle, that horse riding can be great therapy for kids with special needs. When she was younger, Emma was in such a program. But after a time, we felt her progress had leveled and we wanted to try her in other activities. Our first choice as far as education is concerned would be public school, the contact with typical kids being very important. We're hoping in our IEP this spring to set up a good classroom situation for Emma for the fall. Best of luck with your study. My wife had a nornal preganancy and delivery with Emma. Emma's hobbies include computer games; outdoor, physical activities (though not organzied sports), watching videos. Like many autistic kids, she loves water, whether going to the beach, the pool or a small creek.
    Nancy-thanks for your suggestion about Son-Rise. I have read about the program and I will check out the online seminar. I wish for continuing advances for your son.
    Dianne-Your son's plight appears to be a tragic one. I cannot comment on the specifics of the case, but generally speaking, I feel an advocate can help parents in their dealings with schools, especially in heading off potentially explosive situations.
    Tara- thank you for sharing your family's journey with your daughter. She sounds like she's making great progress.
    And Joey-I think you're on the right track. Keep developing that love between your boys and they will only grow closer.

    April 14, 2008 at 10:56 | Report abuse | Reply
  23. Terry Baradine, Georgia

    Dear Phil

    We have a problem in Georgia with schools criminalizing the kids with Autism. Please see this story:

    http://www.tiftongazette.com/archivesearch/local_story_088221520.html

    This is an 8 year old autistic charged. Because kids are misunderstood at the school level, the schools are finding every whcih way not to educate them. We have a very big problem with this in Georgia.

    Also, many Autistic children have medical problems and we have zero understanding from Georgia Public Schools. When the kids have to be taken out of school because of medical issues, then often the families are getting charged with truancy because of our Compulsory Attendance Laws. We had one mom arrested for truancy when her child had to be kept out of school for medical reasons–Houston County, Georgia. This is one of many stories that parents ahve to put up with all the while fighting the constant misperceptions that the school establishment has about these kids. Parents are meeting resistance in educating children with Autism. They are told their kids are 'uneducable' or 'untrainable' when we all know given the right tools, the right timing the right interventions, these kids can learn and be productive.

    Here is the Betsy Loiacono Story:
    http://www.associatedcontent.com/article/253099/mother_of_autistic_child_arrested_for.html

    April 14, 2008 at 20:46 | Report abuse | Reply
  24. joelle

    Thanks Phil.

    April 15, 2008 at 04:04 | Report abuse | Reply
  25. Vicky

    I commend the family unit that at times maybe very trying for you and your child. having worked with mental challenged, autistic, and haveing a mentally impaired brother. Educatable to the age of 6 as they classify.
    I learned many things from these human beings. Beyond the response of vibration and how it so seems to effect them. In either a postiive way or negative. A suggestion to those who may not understand the concept of the brain and how they need to control thier world.
    A movie years ago, of genius within a child, may shine a light that they have not seen. It was called The House of Cards. Its a good movie of belief, and the idea that they have all they links we do within our brain. Its merely how they get to the next bridge of thought.
    Sometimes they get stuck on the bridge.
    Thank you for being whom you are.

    April 15, 2008 at 10:47 | Report abuse | Reply
  26. Arlene Salas

    I know what your feeling. I to have a 5 year old son who is diagnosed with autism and I ask myself the same question about the future. I also wonder how will it be for him in school, right now he is in headstart and it is only a half day class. When he goes to kinder is what worries me. I want to be with him in school to help him adjust and feel comfortable but the school will not allow it.. Here on the small island (Guam- Territory of the United States), we do not have much to help us out with autistic children. The numbers are growing here and it scares me. My son is doing well though, he can finally speak and tell us what he wants but it a long journey ahead of us. I am happy that I am not alone in this fight and I pray that one day there will be a cure so that we can have our kids back and letting us know how they feel and what they want.. Thank you for reading, I just needed to let this out..

    Arlene
    Guam-USA

    April 15, 2008 at 20:46 | Report abuse | Reply
  27. joelle

    Phil,may I ask you one more question.Did Emma sleep well between her age of 0 to 2 ? My nefew didn't.

    April 18, 2008 at 08:02 | Report abuse | Reply
  28. phil riley

    Hi Joelle-Emma had typical sleep behavior for the first two years of her life. As she got older, she developed more irregular sleep patterns, and, still today, she will wake up in the middle of the night and not go back to sleep at least once a week. She'll stay in her room and play so she doesn't need the overnight monitoring she needed when she was younger. Still, we feel sorry when she has to approach a new day (especially a school day) with insufficient sleep. I know sleep issues are a concern for many families strugling with autism.

    April 21, 2008 at 11:01 | Report abuse | Reply
  29. joelle

    Hi Phil-Thanks again for your answer.
    About church,I would like to mention you a web site of a friend of mine.His name is Donnie Sumner.Hope you will enjoy it (in family?).
    About horse riding,could it be a sport to do for Emma,individual but in contact with other kids aside the school.
    Have a nice day.

    April 23, 2008 at 08:51 | Report abuse | Reply
  30. Dawn

    Thanks for sharing your story. My 7 year old daughter seems very much like your daughter. She only attends school for 2 hours a day. We barely leave the house to even go to a park. I have 3 other children, 2 of whom have Asperger's syndrome. We have the same worries about the future. What happens if were no longer able to take care of her? Will her siblings take over? Our other worry IS the emotional state of her brothers and sister. My daughter tantrums a lot and sometimes hits and spits. Her younger sister is Neuro Typical and seems to understand and just comes to mommy instead of fighting with her. My boys who have Asperger's have a harder time and see it as her being mean. Although, we try to divide time between the four of them my daughter with Autism always seems to be the center of attention and the cause for their lack of fun and the reason they can't do all the things their friends had done. (going to the zoo, park, pool, etc.) We do occasionally take them places without their sister but we are always overwhelmed with guilt over leaving her out of the fun. She knows when she's left behind too, because after we all come home she had spent most of the day crying and continues to do so until she falls asleep that night.

    Sorry I just had to vent. I really got tired of seeing all of the stories about Autism on CNN being stories about Savants and giving the public the wrong idea about MOST kids with Autism. This is the other side.

    May 7, 2008 at 13:52 | Report abuse | Reply
  31. joelle

    Dawn-you say that 2 of your other children have Asperger's syndrome,does it mean they have communication problems too!
    I have tears in my eyes when I read that your daughter is sad not sharing fun with family.I wish I could help you.

    May 8, 2008 at 08:40 | Report abuse | Reply
  32. joelle

    Hi Phil,how is Emma doing?

    May 27, 2008 at 09:01 | Report abuse | Reply
  33. Diana

    People complain about the schools not having appropriate education for autistic students but they seem to forget that the diagnosis of autism doesn't come easily in many cases and the condition was not recognized as a medical condition until 20-30 years ago. How can you expect the education community to come up with a treatment quickly when the medical and scientific communities are debating about what should be included within the autism spectrum? I work with the teachers of autistic students and I see them spend their own money to get the best training available only to have the student's parents berate them for not using the LOVAAS method, the HALO method or whatever method the most recent Hollywood interview has touted. Naturally, these are also very expensive methods to get trained in but I never hear the parents or their lawyers offer to provide finances for this training. With this lack of understanding on the part of the parents and the underlying threat of a lawsuit if the parents don't get what they want immediately, it is not surprising that teachers and teaching assistants often leave the autistic classroom for the general education classroom after a few years. These teachers and their assistants are often treated as if they are glorified babysitters or servants. At times, I have felt that the parents of these students should have to help in the classroom on a weekly basis to experience the challenge of trying handle 9 non-verbal, diapered 1st and 2nd graders who bite others and throw things with only two adults in the classroom.

    May 30, 2008 at 22:35 | Report abuse | Reply
  34. joelle

    If, at the age of 2/3 y.old,when "diagnostic is made",the child is kept in typical gardenschool,with knowledges of the problem(parents and teachers),there would NEVER be severe autistic chidren or autistic adults.

    June 3, 2008 at 09:11 | Report abuse | Reply
  35. Laurie

    My 10 year old son has aspergers syndrome. I am a teacher and have to work so I could not get him from the bus. The day before the last day of school, someone told me that kids were hitting my son. He wen through the entire school year suffering in silence. He is in a normal classroom with no special help, and usually he did very well. But he could not tell me about the abuse because he was unable to speak when he thouoght about it. I have never been so angry and heart broken in my life. God only knows how a person who can't speak up when someone does something bad to him is going to survive in this world. I wish I could hire him a body guard. I can't believe the lady took a year to tell me. I got all the kids suspended, but nothing will restore my son's dignity. Even when he knew I knew he would not speak about it, so it was hard to get a "conviction", it was all based on hearsay. Autism sucks!!@!!

    June 11, 2008 at 06:23 | Report abuse | Reply
  36. joelle

    Hi Laurie-Your son will not speak to you about suffering because he doesn't want you to worry or to have pain for him .That is part of autism.Autistic children have empathy.(wish I could help).

    June 14, 2008 at 08:33 | Report abuse | Reply
  37. Loreto

    Hi Phil,

    I wrote fron Argentina, my son Dinko (12 years old) is autist, he can speak, but is impossible for him read or write. I believe that your fear is common for all parents "who care for my children when I no longer this here", is cruel to give this responsibility to our other children (me are two, olders Dinko), because do deserve a life free to problems.I believe that our work is to teach them the best people possible, strongs and prepare as best they can for self-sufficiency, and and expect them to always have people who love them. If we are strong they are stong,

    July 22, 2008 at 08:37 | Report abuse | Reply
  38. Jackie Bloomfield

    Has anyone heard of the expensive and dangerous method of chelation therapy for autism? Well it does help dislodge some of the possible toxic culprits like mercury and other toxins that may encourage the disease in those sensitive but it does not take it out of the body. It merely displaces it to another part of the body. Who knows what that could do later. It is expensive and dangerous and not as effective as a product called Natural Cellular Defense that is safe with a patented method to clean out zeolite in a slightly acidic solution that is stable and pure. Many immitators have tried to jump on board of this revolution but are failing so far. Recognized by FDA with graf status for safety and purity it is non toxic. Many Autisic kids are getting results with the metals trapped in the zeolite cage and leaving the body through urination for good. See websites for more info: sharethecause.com/globalheath and healthytogo.com. Also view mywaiora.com/709134.

    August 6, 2008 at 16:17 | Report abuse | Reply
  39. Blanca Acosta

    I have two little silent angels..no they are not twins. Although they weren't diagonsed with Autism, they were diagnosed with Retts Syndrome, it's within the same spectrum. Please log on to IRSF for more information. Your typical Retts Syndrome girl is on a wheel chair. Right when I found out what they had, I decided to pump my girls with lots of vitamins and calcium magnesium (helps to calm them the down, if they are hyper), gave them lots of physical therapy, and I did a glueten free diet for 6 months when they were young. They are now 16 and 14 years old and they both walk. We take them everywhere, camping, swimming, movies, and theme parks. I have two boys 18 and 12 and they are also a blessing in my life. They love the girls and are very proud to have them as their sisters. God intrusted me with two little angels and they completely changed my life, but for the better. We all have worries and battles everyday, for me is double. I have learned to accepted and believe it or not, I love to take care of them. Yes, I would love to hear them talk. I hear them talk in my dreams. In my dreams, they tell me that they understand everything I say. Of course, I believe that is so true. They speak to me with their eyes. I pray that God gives all of you comfort and peace of mind. That you embrace this child as a gift from God and thay you learned from them. Remember, is okay to take a break from our children, just as we do from our so called "normal" children. I am very proud of my girls, Alex and Amanda. Praying helps me to deal with the challenges that our angels bring to our lives. I pray that one day SOON we find a cure for our children.

    Blanca

    August 19, 2008 at 02:24 | Report abuse | Reply
  40. joelle

    Hi Phil
    How is Emma doing?at school?(church,restaurant..?)

    September 7, 2008 at 04:26 | Report abuse | Reply
  41. Rachel

    oh my goodness, my heart goes out to this family, for i am a very big representitive on the autistic community. i believe in them, and my heart goes out to all of them. if i won the lottery, you can bet i would give it to the autistic. ive been this way my whole life. i hope you guys are at least happy, take pride in your daughter, she could change the world and she is a beautiful person. you and your family will go far!

    February 3, 2009 at 11:33 | Report abuse | Reply
  42. Dee

    I have a 24 year old son who is autistic. He graduated at 21, and there is nothing available after they graduate. We tried one place and they had no idea how to handle an autistic person. We checked out two other place's, but between being dirty and in industrial area's they where not acceptable for a day program. My son is at home and we are looking for a day program. People don't realize that after the public school system,
    there is nothing out there for them. You know your children will grow up and there is nothing available for them later on. I 'm saying this to you so you are able to prepare many year's in advance and be ready. I know that most of your children are young right know but before you know it they will grow up and you will understand what I'm talking about. I think society has to do something now for these children before they grow up and have something available for them as adults
    because the alarming rate of autism is growing and they will be adult's someday. As far as my son, he was 3 month's old and got his vaccination and got a high fever and never was the same. If I had known I would have waited until he was much older. His fever was so high that he got a medical for the rest of them.

    February 4, 2009 at 12:34 | Report abuse | Reply
  43. california grandma

    my grandson is 6 years old, and was diagnosed with autism/ASD 2 years ago.
    he was also diagnosed with type 1 diabetes at age 14 months.
    it's been very challenging – autism as well as diabetes.
    we learned to watch his body language and tested him religiously in order to keep his blood sugar level.
    i watch him now, when i tell him it;s time for a shot – he lifts his shirt up, and says: ok grandma, ready for my shot.
    but it took a long time to get there, and i had to keep telling him that this (insulin) was 'important'. when he wants something special, like chocolate cake, i tell him he will need insulin to 'cover' it, and he agrees with me that chocolate cake and a little insulin is ok.
    he says : my name is Isaiah
    he counts to 50
    he loves birds, and carries different colored straws around to symbolize the birds he loves: blue ones are blue parrots, orange ones are flamingos...
    and he can name almost every bird known to man.
    recently, he learned the meaning of "i love you" and must have told me 100 times that first day that he loved me. he;d ocme into the kitchen, put his hands on his hips and say "grandma, i love you" and blow me a kiss and then he;s off to watch his favorite movie.
    ever since he's been born, we've spent a lot of time together. when he was diangosed with diabetes, i learned how to deal with it and took him overnights to give my daughter a break.
    we have lunch every saturday, and if i have not called him by 10:30am, he'll be on the phone with his mom asking me where i am.
    it wasn;t always like this.
    he was the screaming, flailing, frustrated child all parents and family of autistic kids have dealt with.
    we finally got him into a great school, he's thriving.
    at the same time, i got him into a pool when he was 6 months, and we've kept swimming every summer to the point he could float and enjoy it – and was ready for real swimming lessons last summer.
    he still wears a diaper.
    he only eats chicken nuggets, carrot juice, capri suns, french fries, strawberry bars from trader joes and sometimes pizza and jelly sandwiches. he doesn't know that some of the treats i give him are actually health foods, packed with vitamins.
    i honor his sense of order and routine, but i also intentionally mix it up – and most of the time he allows himself to see the humor in what i am doing and plays along with me. the times when mixing it up are not the best for him, i ask him what he would prefer, and he usually tells me to go back to something familiar. and i do, but we try the new thing again the next time i see him.
    he tells me jokes, and remembers how to get to my house from anywhere in the town we live in, by telling me to turn right, left, or to go forward.
    i could keep going here, but it;s nice to have this blog, i will keep reading and keep in touch and turn my daughter on to this blog as well.

    April 2, 2009 at 17:52 | Report abuse | Reply
  44. LorettaDee Latham

    I am Grandma Dee. I have two "typical" gandchildren and one, very autistic grandson named Alex. Alex is a beautiful 7-year-old boy who lives with me, Grandpa, and most special of all, his Daddy. Alex does not use words to communicate, is still in pull ups. Even so he has came a very long way. Instead of waking up at 3:00 am and going full blast, with the help of his medicine he can now sleep. He is making progress using a picture exchange communication book to communicate. He still has awful melt downs but now they are very selective and mostly limited to not being able to go outside. He goes to winter and summer school in an Autism classroom. I don't think that Jenny McCarthy or any other star can help us unlock why this happens or when it does happen how we can help these children. I strongly believe the answer lies in working with the older children with autism that can communicate to help us understanding our autistic children. This is spring break, Alex is out of school, I am off work and we are going to try for the bazillionth time to potty train! Enjoyed your posting. Very true, without all the drama. Thank you

    April 4, 2009 at 07:38 | Report abuse | Reply
  45. Bonnie Giordano

    My eight year old grand-daughter was diagnosed with autism at eighteen months old. It was IMMEDIATELY after having the MMR shot! She now has seizures and yeast infections. The videos of her prior to the shot shows an animated, responsive child. That child was taken AWAY. She cannot read, write or tell you what she is afraid of when she cries for no apparent reason. Her identical twin is fine!!! If there wasn't for the greed of the pharmaceutical companies and the government perhaps there would be a drop in this epidemic. The doctors denied, at first, that there was anything wrong with her. It was our own perseverance through a family friend doing an evaluation that we learned the TRUTH. You MUST be your child's advocate.

    April 11, 2009 at 21:50 | Report abuse | Reply
  46. Stephanie Ward

    This is for Bonnie, about the yeast infections. You need to reduce the amount of sugar and simple carbs that your grandaughter consumes, and replace those with more fruits, veggies, whole grains and plain yogurt. It's not easy to change the diet of a person with ASD, but it can be done. Sugar feeds the yeast, so reduce the sugar! Yogurt helps restore the balance.

    April 20, 2009 at 10:11 | Report abuse | Reply
  47. Cindy Golden

    I so feel for parents of children on the spectrum. I work with those students but it is only 8 hours a day. The children have such complex needs that our parents need support because their emotional, physical, financial and marital situations are stressed.
    Cindy
    http://www.omacconsulting.blogspot.com

    September 22, 2009 at 23:36 | Report abuse | Reply
  48. April

    It really should be compulsory to try a gluten, casein and salicylate free diet for any ASD kid/ adult. Did you try this for Emma?

    November 8, 2009 at 23:21 | Report abuse | Reply
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