 |
|
|
|
|
April 1st, 2008
08:37 AM ET
Navigating Emma's autismBy Phil Riley 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. 
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." Editor's Note: Medical news is a popular but sensitive subject rooted in science. We receive many comments on this blog each day; not all are posted. Our hope is that much will be learned from the sharing of useful information and personal experiences based on the medical and health topics of the blog. We encourage you to focus your comments on those medical and health topics and we appreciate your input. Thank you for your participation. |
  About this blog
Get a behind-the-scenes look at the latest stories from CNN Chief Medical Correspondent, Dr. Sanjay Gupta, Senior Medical Correspondent Elizabeth Cohen and the CNN Medical Unit producers. They'll share news and views on health and medical trends - info that will help you take better care of yourself and the people you love.
 |
|
|
|
Is Emma going to a regular school?There is always a reason when an autistic child gets upset or FRUSTATED,and it "blames" itself.Go to church (or to restaurant)beeing confident and no stressed and telling your daughter what it is for.Hope it is understandable...I am from Belgium.Your daugther needs friends coming to your home.
Hi Phil,
Tom K here in WPB. Happened to have cnn on this morning and they mentioned your blog. Just last weekend I did a 3-hour telethon for autism... brought in 250k ... those wealthy palm beachers came through. Tell your wife I said hi. Next time your family is down here, give a call.
Your story sounds so familiar.... I have a 7 years old non verbal autistic daughter. There is always the stress that she cannot tell me exactly what happened or what she feels.... Her nine years old sister is a blessing. The last time she went to the movies, we had to leve earlier because she cuold not tolerate the movie. The tantruming was on and off for hours. At some point I was crying, my daughter asked me why, so I told her " I whish so badly your sister was not Autistic and cuold enjoy movies and kids' stuff like you"and her answer was:
"It does not matter, mommy, she is fine the way she is, and we love her a lot"
Emma does attend a public school, and has an aide in the classroom. She has shown progress outside of school in having less sensitivity to certain places and activities. She freely goes to the grocery store now and likes to swim in an indoor pool at the YMCA, when she previously would only swim outside. She would not be able to sit still through a dinner or church at this point. But as far as Emma having more social contact, you are right. She needs more of that.
Phil,
I can very much relate to your comments and life in general. I have a 3 year old son who is a twin that is on the spectrum. I cry mostly when there is a program on TV, I go to an IEP meeting and generally faced with the realization of it all. The families faced with this need to support one another and therefore we are all supporting you in this journey. I am so very appreciative of CNN for acknowledging a whole day for the awareness of Autism. Even though I will have my box of kleenex next to me, I will be watching tomorrow hoping to learn a little more about how I can help my son.
Hi, your story is to familiar.... we have a 9 yr. boy, Conor. Typical development, regresion started at 18 months and got a diagnosise at 22 months. Advise from one profesional was...... except the fact that you might have to institutionalize your son.
Sorry, not an opption.
Our biggest chalenge now is education and the future of our son. We have done every thing we can on our own up until this point in his life and now we need to intrust our child(children) with an educatioal system that has no idea how to handle children with ASD and all related develomental disorders.
My quest now is to set up scholorships for ASD children to give them an appropriate education. I would not be able to live with my self if did not give my son all the tools that he might need to reach his full potential, what ever that might be.
Keep fighting the fight and never stop loving your kids or your spouse.
Peace, Tony
My daughter Willow never had dairy until right after her second birthday when my son was born. She was a delightful, verbal, affectionate and engaging child. We had no food allergies in the family and no reason to worry. She just hadn't had it up to that point because I nursed for a really long time and just didn't really think the breast milk of another species was the right food for her. When my son was born, my husband and family started to take her out for pizza and ice cream and give Willow her own special time. I decided to lighten up and go along with the idea. Within two weeks she seemed to come unglued – meltdown after meltdown. Inconsolable fits became the norm. Everyone who previously thought she had been a dream now said she was spoiled and suffering from acute sibling rivalry. I was quick to defend her and remind them that it wasn't always so, but was equally confused and wracked with self doubt. When my son was seven months old he had a life threatening reaction to dairy, ambulance and all. We immediately had him tested and found out he has a plethora of severe food allergies. This made me think of Willow with the dairy. We had her tested and she came up completely negative for any food allergies. I must have asked several doctors dozens of times if the behavioral stuff was dairy related and was always told "no way".
Things got worse and worse over the next two years. She was diagnosed with ADHD. Her eyes would roll independently of one another like a drunk person. She could not make or maintain eye contact. She was itchy from head to toe all the time. She suffered from horrible gas pains. She would not hug anyone or be hugged. She became aggressive and lost all sense of compassion for others and accountability. We were losing her. She would hold her and roll on the floor screaming for 5-6 hours at a time. I was pregnant with my third at this point. Part of what I wanted most out of that pregnancy was to share it with Willow who would have been the right age to really get into the whole miracle of the pregnancy thing. Instead I couldn't go near her because she would always be in a rage over something and often tried to kick me in the stomach. We thought we lost her. Our child was there in our home but was gone. It was devastating. I was aware that, more and more, the only thing she would eat was food made up of dairy. Eventually she would consume nothing but milk and would drink it with the fervor of a drug addict. Doctors kept saying that wasn't the answer and had no others. Finally I said to hell with all of them, and took her off dairy completely. In two days, TWO DAYS, she was back. It was like she woke up from a bad dream. It was like something out of a movie I would have scornfully mocked for being unrealistic and corny. The miracle was, it wasn't a movie. It was real and my Willow was back. ALL of the symptoms subsided over the first week. She went through a terrible chemical withdrawal and would wake up in the night screaming and crying for a drink of milk. My husband and I kept waiting for the other shoe to drop but it didn't. She was four and a half then. She is in second grade now and sees a developmental pediatrician now for subtle ADD and possible equally subtle visual processing. In addition, He confirmed for us that she does in fact, have a type of dairy induced autism. He also said that most doctors won't commit to such a diagnosis because there is very little scientific date to support it – mainly because no one out there is all the interested in collecting that data. He also said that he has heard this same story innumerable times in his career. He told me that Willow's acute level of sensitivity to dairy is not that uncommon, definitely exists, and goes misdiagnosed all the time. After all there really is no money to be made on this simple cure.
We have since met many families who have been through the same thing and are equally frustrated by the lack of support in the medical community. I am not saying that removing dairy from the diet will the panacea for all cases of autism. It may not change a thing but it only took us two days to know for sure that dairy was the offending substance. It is worth a try. Dairy was a life changing neurotoxin to our daughter. She was gone, we took her off, and she came back. It is worth a try. Good luck to all of you. Follow your gut instincts and never take anything anyone tells you as absolute when seeking a cure.
Phil –
Please continue getting the message out there...
Our son, Markus, is 4 and struggles with tantrums (among other quirky behaviors and few communciation skills). While the journey is long, we have learned to appreciate the lessons. Wife and I are writing to you from Mexico where we are traveling (Markus is at home with loving grandparents). The toll that the condition takes on your marriage and own personal/professional aspirations is incredible...and a trip for Mommy and Daddy is a welcomed, and needed, respite.
We are not escaping (we miss him so much), we are re-energizing our reserves. Being there for my wife is as much a part of what I am learning from this situation, as the intensive therapies that are reaching our son. My empathy and appreciation for you, as parent, is immense.
Continue the fight.
-eric
Hi, my 6yr old son JJ was diagnosed with Autism when he was 3-4 yrs old. The road is not easy but we believe worth wild. I strongly suggest that you go to church and restaurants. We go to church 3 times a week and eat out regularly. At first JJ, would scream and have other outburst at church until he got use to going. Our fellow believers, also made it easy for us as parents and the entire family to feel welcomed and comfortable. They would reach out to JJ and he is at the point today that he demonstrates affection to some of them. We started to eating out with him, by going to McDonald's or Burger King. We then eat at other restaurants when we knew they weren't crowded. Today, we can practically go anywhere and eat. He even says: Let's go eat. To us this is a huge accomplishment. As far as your other child, we too have an older child, Xavier his 8. It's very hard to be balanced as parents, but always reassure your son that you love him and whenever possible spend alone time with him. My husband and I make it a point to spend time with Xavier and we even do Mommy (Daddy) and Xavier day. On this day, we do whatever Xavier wants to do. This make him feel special. Also, having the children play and work together gives us as parents a break but also helps them build on their relationship. I can't even count how many things JJ has learned from Xavier. My husband and I feel that it's not easy having a family and it's harder having a child with special needs but we would not have it any other ways. It has helped us as individual and as a family in so many ways. Take care and stay focus. Wishing you and your family well.
I have an 18 yr. old son with autism. Until this past school year he was a kind and gentle boy but then he started to have fits of temper that took no time to get to a very destructive level of breaking things and pushing people. After trying to modify his school schedule (which worked sometimes) I found a homeopathic remedy that was specifically designed for children with ASD . It was a miracle. From the very first day of using it the destructive outbursts stopped and he is is old self again. It is from Natural Creations and is called Focus CP. It worked so well we actually took him on a plane for a vacation to Arizona just this month. He was wonderful the whole time even when our plane got delayed an hour. Also for young children- when Sean was 2-3 yrs. old he would not go to sleep at night and/or would wake up in the middle of the night for 1-3 hrs. At that time I found and aromatherapy bath for hyperactive children that had various essential oils and other minerals. It is non-toxic and bio-degradable. It it called Aromasaurus rex and is put out by Abracadabra in California. From the first bath he fell right to sleep when put to bed within 1hr. of the bath and he stayed asleep. I did this every night for a year till eventually he did not need a bath every night. All this when he was 4 yrs. old. Every since bedtime has not been a problem. I hope others may be able to benifit from what we have experienced. I welcome any questions.
Thank all of you for your relating your experiences, suggestions and expressions of faith. Tom-it was terrific to hear from you. Say hi to everybody down there.Elena-your older daughter is wise beyond her years and I'm certain will continue to be a great support for her sibling and you. Lori-thank you for watching. I'm very glad the network has given us extended time on this project. I wrote lead-ins and teases to seven autism stories yesterday and by the end, I, too, was reaching for the Kleenex. Tony-it is tragic that a professional would give you such advice. I am so happy you listened to your heart instead. My prayers are with you for your quest. Eric-it's terrific to hear that you and your wife are getting away. You really need that to recharge and be fully there for Markus when you return. I was shocked to learn today that my colleague, John Dear, whose blog you can also read on this site, has not been out on a date with his wife in 5 years. We're gonna have to do something about that. Madeline-I love the idea about having a sibling's special day, and I agree that kids with special needs learn as much from siblings as they do from parents, teachers and thearpists. Vicki-Thank you for passing on your remedies. Hopefully they will help others.
To all of you, I'll just repeat what the late Jim Valvano said about the fight against cancer: "Don't give up, don't ever give up."
Phil.... "You learn to serve others and not just yourself."
What an incredible impact that statement has that your son Conor made. And what insight he has gained into truling loving someone!
I am a single mother of 4 children, all differently-abled, my youngest – a son – with autism. My 16-year old daughter, invited to speak at a public luncheon on life with an autistic sibling, spoke not about our struggles with her brother when he would bang his head into the wall and leave holes, nor about how frustrating, crippling, or tiring living with a severely autistic child is as chaos reigns even on the best of days, but about how her life has been changed for the better by living with and loving her brother. How every small positive step in communication or behavior is a victory for him – and us. How courageous he is for simply getting up in the morning in a world he doesn't understand and his senses won't allow him easy integration into, and how he has taught her so very much in the few short years he's been with us.
I'm not sure about you, but I am grateful that I was blessed not only with my son, but with my teenager who reminds me, when I am at my lowest ebb, just how truly blessed I am to have the children I do... all of them.
As a father of a 2-year old daughter with autism, I have to say thank you to CNN for all of the coverage of Autism that I've seen already these last few days. April is Autism Awareness month...let's keep the momentum building and keep increasing awareness! My daughter was diagnosed just a few months ago, so the reality of what she is facing has only started to settle in. We've seen a lot of ups and downs – from the joy of a new word being learned to the heartbreak when you find out that your insurance will only cover 30 speech therapy visits and occupational therapy visits each year, not to mention the denial of coverage for ABA therapy altogether. So kudos to you, Mr. Riley, and kudos to CNN for keeping the spotlight on autism! Thank you.
Dear Phil and others,
As one can see from this blog, autism is a very diverse problem—the disease itself is a spectrum disorder, with a wide variety of symptoms, and it affects families in many different ways. I am very excited that CNN is doing an entire day-long special about autism tomorrow.
However, there is an ethical issue in the news industry and the media in general that I would like to call attention to. This is the very narrow, limited way that the media portrays such a diverse disorder. For example, it seems that most of the autistic people that are shown in the news and in the movies are very high-functioning (like in the movie Rain Man). I don’t think I have ever seen a nonverbal autistic person in the media or others that are very low-functioning.
Also, the kinds of stories we see about autism seems very restricted. For instance, I have noticed that most news stories are about the vaccine debate and how hard it is to diagnose autism. There are many other complex issues about autism—such as strains on families, hardships in education, and other medical/behavioral problems—that are rarely, or never, addressed.
This issue is an ethical one because it limits the way our society views autism.
Maybe the reason why we see a narrow view of autism in the media is related to news values. Obviously, the vaccine debate makes a good news story because it has the element of “conflict”. For television news, it is probably a lot more visually appealing to show someone very high-functioning than an autistic person who can’t talk.
Despite news values, autism should be portrayed as the diverse spectrum disorder that it is. The media (and CNN in particular) should take action to show the different forms of autism and the many issues that surround it. Also, parents and other family members should write to media-makers to help them understand the complexities of autism.
I have a nonverbal autistic brother. He is one year younger than me and lives in a group home.
Thank you for saying that Brittany- I agree with you 100%. My child is low-functioing. He is 7 and completely nonverbal. I blog at autismspot.com about life with a child like mine.
I dont agree with Brittney, the only autistic people they show in the media are the ones where language is delayed. What about the rest of us? Both my son and I have high functioning aspergers syndrome , we suffer severe social anxiety panic disorder he has Touretts syndrome, epilepsy and opoistional defiant disorder, I have auditory learning disorder right and left temporal epilepsy, right hemisphere brain damage, we both have adhd-c. Wow what a deck of cards huh! The media portrays us as successful and doing so much better than the "low functioning end of autism". Untrue I live off of S.S. disability most of the time we dont have enough food, ever day is a battle to fight with a world that is irrational, lacks logic. There are a hundred if not more organizations who receive money for the education of neurotypical individuals, researchers. There is nothing for those who suffer. My son is lactose intolerent medicaid does not pay for the pills. He refuses to change his diet it is part of his rigity just like "autism". He just learned to ride a bike, he is clumsy, says inappropriate things, cant communicate with others unless it is a topic of intrest to him. He is also brillant creative has the ability to learn at a lightening speed, wont do his homework, gets punished everyday at school. .This world that "WE THE AUTISTIC INCLUDING ASPERGERS IS VERY DIFFICULT TO LIVE IN" The hypocrisy, mind games, hoops that people make you jump through so that you are demoralized. I dont understand this world it is not my world, in my world, you treat people decently humanely. It is a sad observation on society when charieties are set up to help those who do not have the disorder. Where is the logic in that?
Hi Tim, i know what you are going throughi have a grandson with autism. his name is micheal he is 5 with big pretty brown eyes and a great big beautiful smile. he also can not talk. he has lean more since he has been in school this year.he is in a small special education class.he is the only one in his class that has autism and can not talk he is also not potty trained he is scared of the toliet.i wish we had a school her for autisic children someone who would understand micheal needs more and would know more about how to teach him and tell us how to teach him. we try to teach him but dont if we teach him the right way that he understand.the number of children with autism is growing and growing. and it hurts very bad. something is causing this becasue to many children are getting autism.i do not believe it is a gene either. i hope they find out soon.god bless us all
Hi Phil
Thanks for having letting me know a little bit more about Emma.Yes it could be too long for her at the church(or dinner) but you can try to make it by telling her when she needs to go out she just have to tell you...hope you understand what I'm trying to say.Have a nice day!
Have any of the commenters every investigated the product, IMMUNOCAL? It is a glutathione precursor that is the subject of an autism clinical study now at UT Southwestern. Worth the time to research. Lots of great results have been reported.
On World Autism Day, I wanted to share these links to documentaries about my son and our family. Autism is such a HUGE issue for siblings as well, and my oldest son (18) has written a profound poem about when his youngest brother had to live in an institution for four months.
Please click on the links below to see our story, and know that I'M GOING TO FIGHT UNTIL MY LAST BREATH FOR OUR CHILDREN, FOLKS!! Hang in there, and when you think you can't last another moment, just focus on taking your next breath......believe me, I know - and I understand.
TVOntario documentary
http://www.tvo.org/cfmx/tvoorg/tvoparents/ index.cfm?page_id=145&action=article&article_title_url=TheEarlyDaysofAutismMeetParentsLikeYou&article_id=3341
TVOntario documentary and sibling's poem
http://www.tvo.org/cfmx/tvoorg/tvoparents/index.cfm?page_id=145&action=theme&theme_title_url=SpecialKids&theme_id=42§ion_id=2
'We're Not Going Anywhere' documentary
http://www.youtube.com/watch?v=YqRM5OGnHIQ
Autism Blog Spot
http://soaringhorse.blogspot.com
The Best to You and Yours! Hang tough!
Susan Fentie, RN
Co-Founder
Ontario Autism Coalition
Two comments: 1) I hear much about genetics being a major identified factor related to autism. This seems like a red herring. Has the gene pool changed that dramatically in the past generation as has the number of autism cases? Extremely doubtful. Granted maybe in the distant future gene therapy may lead to a possible cure. 2) But in the mean time it is hoped that the lion's share of research monies will be applied to finding the enviromental triggers. They might start with looking at the Amish. It is known that their children suffer far less than the 1/150 rate of incidence common among the general population. What enviromental factors do they lack which keep their children from being "triggered" for autsim.
From what you write Emma seems to have made a lot of progress and I am sure she will continue to do so, people on the Autistic spectrum have a tremendous desire to achieve. I hope that your and your wife can stay strong and continue to give Emma and each other the needed support. I have Asperger's and found school to be soul destroying. I needed to learn in a different way. However that has not stopped me from becoming a sucess in the mainstream world and I do wish I could 'come out Aspergers' to my employer. I dare not for fear of misunderstandings. I wish that when Emma reaches my age the world will be a better and more accepting place for people with Autism.
Phil,
Keep fighting the fight for Emma. As exhausted as you are your wife (and Son) might be, you're going to be her best advocate ever..... As parents, there is nothing we wouldn't do for our children.
I have a 6 year old boy with Autism named Max. The crazy thing about all these stories is that all of our ASD children are so different, although there is a common disability. Max's issues are mainly his hyperactivity, EXCESSIVE stimming, and lack of social know-how. In the end, like his ASD peers, it is difficult for Max to be mainstreamed. Luckily for us though, Max is generally a "happy go lucky" child. What I find with Max, unlike his typical peers, is that Max needs to be taught everything. However, once taught, he can do almost anything. My wife and I will not stop giving Max all we can because we know he's so capable of achieving. I know that Max will have life long limitations, and I have come to peace with Max's limitations, but Max still shocks me from time to time. Shocks me in a good way when he does something I didn't think he'd ever do.
My only advice I'd give you since your case is as unique as Max's case is, is to not ever give up on Emma. Bring her to church (I'd expect your church family will be accepting), bring her to restaurants, etc. Emma will eventually learn how to be socially appropriate in these places. It may take some time, but she's going to shock you one day when she understands. If long sit down dining is difficult, start off slowly at a fast food restaurant so that you can be there for 5 minutes, and build on that. Also, we often find that we spend time with other families with ASD children. These families are great to be with because they "get it". This way, when Emma has a tantrum, there will be no ackward looks, questions, etc. They'll do the best thing possible for Emma by ignoring the behavior.
I hope my advice helps in some way. As long as tomorrow gets better than today, you'll know you're on the right track.
Enjoy,
Adam
It is so heartbreaking. I hope products like http://bibadee.com/ continue to make a difference in these kids lives through playdates.
The Floortime Approach (Stanley Greenspan) is really making a difference in many of these kids' lives...and it's something you can do by yourself without a therapist if money is an issue.
I share the same issues with my daughter, she was diagnosed with Autism in 2003, and is also a twin. On top of the Autism, she suffers also with epilepsy. I'm searching for hep from anyone who can help me figure the best plan for my daughter.
Some comments paralleling another article here about a CNN producer who also learned late about Asperger's.
I'm 48, and learned about 7 years ago that I have Asperger's. It's isn't a complete explanation, but this seems typical in anything on the spectrum. There are many symptoms that are in the vicinity, and which set any of us gets seems to be somewhat random. Researching Asperger's, there are characteristics which aren't explained. It is likely that I am Savant as well. For the most part the symptoms I have are not severe, but the place they have the most impact is anything having to do with selling. I cannot sell myself into a job, and I cannot sell myself into a relationship. Perhaps Autism is partly to credit, but I am very seldom lonely. I always have lots of things to do. But being alone is almost constant.
It seems that my life has been driven down Materials Science and Engineering, anything and everything related to that field. Even things which may not seem like materials, such as cooking. I started cooking at age 5. I am willing to attempt anything I see on the FoodTV network, and it will usually work out. I am able to grasp all kinds of things related to the physics and chemistry of materials. I recognize that either from a pure chemistry or pure physics point of view, there are problems I do not see and would rather someone else deal with. I am capable of making use of their results in trying to produce materials that engineers use to make "stuff".
What is kind of strange, is that most people employed in this field, are much more specialized than I am. It doesn't matter to me that something is a steel, or not steel, or a ceramic, or a polymer. I grasp them all.
Diagnosis is no help that I can see, in an adult, it is only confirmation. The problems you've been experiencing are not a statistical fluke, there is a real reason for them.
I can agree with having a sense of humour, but I describe it as persistent. In me, it is almost always close to the surface. It also tends to be a bit strange. I've spent so much of my life involved in math and science, that I find lots of things in math and science amusing.
I don't form images in my head. Remembering people is baffling. I cannot describe people to save my life, but somehow I can recognize their image most of the time if I see it. If you change the surroundings the person is in, I may not recognize them. I can sort of feel equations. Being in engineering, this is useful. I see two emotions in people, happy (upwards parabola) and not happy (everything else). However, how I interpret not-happy tends to change from person to person. One person I asked about this, always appeared to be angry as the not-happy emotion. She said that she was seldom angry. I guess I just confuse things that are "not happy". I navigate by landmarks, and in drawing maps, something I am good at, I will list landmarks. But I don't see the image at any time.
Eye contact is supposed to be a problem, I've never run across any reference to light intensity. In my case, it fluctuates and is dependent on light intensity. In a brightly lit room, eye contact is hard. Lower light levels make eye contact easier. In any given environment, I can force myself to maintain eye contact longer, but at some point I still have to look away.
I don't know if my senses are any better. Too much time in chemistry labs has damaged my ability to smell. As a youngster, I had above 20/20 vision. By grade 10, I needed glasses. At times, I can feel if electricity is flowing in some object. As a youngster, I preferred very bland food. These days I have a pretty high tolerance for garlic, chilis, ginger and many other spices. I am not crazy about licorice.
Although I am very capable, finding employment has been a terrible problem. I could very easily be among the best materials engineer/scientistist's in the world, but instead I have been unable to impress anyone in my field of expertice that I am actually worth having around. I have always known that I am capable of making a great deal of money for a potential employer, but I have no way to find work.
To me, current efforts in helping people on the spectrum (and other
learning disabled people) find employment look to be functionally like, "If we give you some money, will you hire this learning disabled person?". For 4 extended periods in my adult life, I have been involved in studying the employment process. I never knew how I got drawn into this, or why I had problems, until this last time. I am a terrific scientist and know lots of math. The problems the learning disabled have in finding employment are not some side effect of being learning disabled! We just happen to be more sensitive to problems endemic to the entire employment process. Fixing the problems for us, makes the system better for everyone.
What can a very good engineer/scientist come up with studying employment for 6 months? The advice about selling yourself to someone who has special training (HR) may be accurate, but it actually makes problems worse. The employer does not want the best salesperson who knows something about X, they want the best person who knows X. Experience can be acquired by purely cognitive means: people on the spectrum often spend more time in heavy cognition than others. Experience cannot be measured by a duration of exposure to an environment. Job applications (resumes and CVs) are semi-quantitative at best. In general, there is no quantitative data in a job application. We need to reduce the importance of the job interview. There is entirely too much opportunity to practice discrimination of all kinds in a job interview. Testing of qualifications and various industrial psychological measures is a way to introduce more quantitative data into the quest to rank applicants in the employment process.
Maintaining optimism has been a struggle. Although I technically do not come from a single parent family, functionally it has been the same. My Mom has been a saint! I wish I could do more to thank her.
My prayers are with all the parents on this blog. I ran across this video with another parent who has successfully treated his son from autism. Hope this helps.
http://www.youtube.com/watch?v=e7Hhgaf3Co0
This looks like a promising therapy! http://youtube.com/watch?v=yXwScWrYBUU
This focus on Autism is really incredible. I find interacting and sharing experiences with other parents on a regular basis really helpful. We can all learn from each other. One place that I go online to find other people like me dealing with Autism is Trusera: http://www.trusera.com/collections/Autism
My 10-year old daughter has autism too. Her younger sister has a disabiliity completely different from hers that makes her medically fragile as well as extremely delayed. There is never enough time, energy, or resources. We live in a small rural community that does the best it can to help us. My husband's and my marriage is not about us at all as we have no time for each other. We love our children.
I'm glad all the organizations are out there to search for a cure, and the therapies that are being developed sound good. But they mostly aren't in rural areas and the urban programs aren't accessible for lower income families in rural areas. My school district does the best it can and we have been very blessed in the special education teacher at our elementary school, who loves our children and does everything she can and learns all the time how to help our daughter with autism, who has made a lot of progress with her help.
I wish one of these foundations would specifically target helping rural school districts with children with autism in getting extra equipment and resources. I can't travel the distances required to get my daughter the extra services that might make the difference. The needs and requirements of my other daughter make that impossible. I can't get her everything she needs either.
The most distressing thing someone ever told me was that I would have to move in order to get services. It's bad enough to be told there are no services in my area without being told everything my daughter has ever known is worth nothing to her well-being. I'm glad people with money can do all these special things, but we can't.
My prayers are with all those who live with autism, and those who know both the blessings and the difficulties that come with caring for a child with autism.
Dear CNN,
Your dedication of the hour 12 noon to 1 PM (EDT) to the enlightenment of the public regarding Autism is the most outstanding piece I have ever seen on Television. BRAVO to all those in your company who had a hand in this fabulous presentation.
THANK YOU so very, very much!
Tom Paul
Just finished writing on CNN's Newsroom AM show, and feeling gratified in helping to bring so many stories of inspiring people to a wide audience. In addition to the pieces we ran, our guest bookings crew did a super job bringing in people like Suzanne Wright from Autism Speaks and Doctor Roy Sanders from the Marcus Institute (he's treated Emma). His message of parent empowerment is a great one to hear. Being a parent of an autistic child and having had his own disagreements with his son's pediatrician lends so much weight to his idea that parents usually know what's better for kids than professionals do. Also, the sweet story of autistic film director Taylor Cross and his mom Keri Cross. When her dreams of his life died, his were born and continue to develop. A loving family.
Thank you again for all your responses.. Marnie-I do fell blessed by both of my children as you do by your four. Thank you for sharing what your 16-year-old said. Dave–We appreciate you watching. Keep us on throughout the month of April and beyond. I'm sitting next to the head of our medical unit, and she says we'll be doing more stories thoughout Autism Awareness Month and beyond. As far as Newsroom AM , I know we'll have new stories on autism tomorrow and Friday and Sanjay's House Call Saturday and Sunday morning is debuting a piece. Brittany-your critcism about media coverage has valid points. I agree that too much focus on vaccines takes away from other important issues.As a parent of a child with serious speech delays, I also feel we need to do stories on more than just higher-functioning kids. I'm watching our noon (et) special now and I think we are focusing on more kids of all ranges of the spectrum. Dawn-I also understand your criticism about the media simplification of higher-functioning people somehow having it "easier" than others on the spectrum. I will pass on your concerns to our medical unit. You and your son are very courageous. Cynthia-we have some autism links on our cnn.com autism page of various institutes that may have information about special needs schools. We all know that finding the right school is a challenge.
Joelle-I understand what you said and that is a good tip. Karen-I have not heard of that particular product. Susan-thanks for sharing your link and your words of support. Horace-Two very good points I wil pass on here. DJ-your few words touched me deeply. We have a blog on this site from an employee who wishes to go anonymous (if you do a search for "alien" you may be able to find it-that is how she titled it) who has Asperger's and has some of the same concerns you do. I just spoke with the medical unit head and this "coming out" issue could turn into a story for us. Thank you for being expressing yourself. Adam: That is great advice. We'll work on it.
My sister is now 51 and still struggles with autism,she depends on her family which is my other sister and myself for support. We are from the caribbean where autism is not treated but is known as having a disability .My mom who was her problem solver has since past .
I always remember my mom complained about the vaccine which caused my sister's autism. At that time it was not known as autism, but referred to as being retarded.
I believe that there is really a link to vaccine causing autism. My sister was 2 when my mom notice the changes days after her shot. I hope that some day we in the caribbean will recognize the disease and like the U.S
will set aside that day as world autism day. Cnn has provided me with much information about the disease which will help both my sister and myself in the future.Thank you CNN.
my prayers are with you..my grandson Dominic is turning 8 on April 7..he is Autistic...and aince the day he was diagnostic with autism almost five and half years ago...my daughter a school teacher start her fight against autism...she read and research everything about autism...she look for help and thanks God after his doctor tell us that he never can talk...now he talk he is and look like normal kid...my daughter quit her job to dedicate 24/7 to Dominic...his sister is 10 years old....and she too help alot with her brother...The only problem Dominic ishaving his behavior and until today trying different medication went he want somthing he destroy anithing is his way ...he allready break 8 television different size....Dominic is at special school..doing great he is very smart....he read ,write, draw, search the web incredible he goes to searching different countrys...well is amaizing...but his behavior is incontrolable....and my daughter has 3 nervous breakdown...she is a single mother and i admire her for her patience and super love....i dont know what medicine he can take to control his behavior...he is taking respidol....and he is overweight...because he dont stop eating..all he want is Mac Donalds....Burger King...after dinner and if his mom said no...he start trowing and destroying ...this an every single battle with Dominic he is very strong....and my dauhter is afraid for me because he can push me easy...i love him so much and I know how hard is this for you my daughter and all the parents of austistic kids...but they are here for a reason ...and my God Bless you all for your patience and love...keep the fight for the cure...
I've read all the stories, and my heart goes out to all the families that are dealing with this. I also have a two year old on the spectrum and I can relate to many of you, but apart from all the heartache I feel like I need to ask: What is being done to change the laws governing the developmental disability area? Our children are receiving therapy ( if the insurance is available!!) until they reach 21, but what is supposed to happen to them at that point?
We need to make our voices heard, so keep fighting and keep supporting each other.
Hi
My name is Maureen Kelly from the island of Aruba
My daughter has been diagnosed with Autism
She has been getting the CARD therapy, speech therapy and she is doing very well. I have cried a lot when she was being discriminated and here in Aruba autism is very rarely talked about. But now I feel that all has happened for a reaso. Today I am more patient , for sure I am more understanding for everyone( including families, co-workers etc). We are all not the same. And the best i liked today of the show when they were interviewing someone with autism and they asked him what he thinks of normal people and he replied:" what's normal anyway"?
I am happy to have been in this autism world. Would love to open a school here in Aruba with the right therapists etc. Take care you all..Maureen Kelly..Palm-Beach Aruba
Phil, your blog about Emma and the family is fabulous. You are doing so much to not only bring up and care for a beautiful, wonderfully happy child who we all love, but also to shed much needed light and attention on this mysterious condition that is affecting so many around the world. Thank you for all your efforts and hard work and most of all thank you and Margie for bringing such a wonderful child into the world.
Emma's aunt.
Phil I think it is great that you are able to do so much for your child. But like alot of parents are in a position of wealth thank heaven for Emma. I have been watching CNN all day, I have not seen one story or organization on to discuss helping those who dont have the funds. I am about to fight the school district in Massachusetts so my son can go to a school for chidlren with Aspergers sydrome. I want them to pay for it. I like my son have the same neurological disorders as I mentioned in a previous blog when meds had worn off and it was not written with to much logic 🙂 and was all over the place. I live off of $1989.00 dollars a month, any therapists in massachusettts only accept cash. After I pay bills, we have to go to foodpantries for food. I really think its critical that this side of autism be addressed, it is my inkling that most with autistic children are professionals and can afford to support a huge financial undertaking. I do not mean to lessen there loss and hard work. I am intrested about what you think, I want to send Ryan to pathways academy in Belmond mass its affilated with McClean Hospital and Harvard University. It costs 85k a year. Ryan has such difficulty in public school he comes home now and says he is depressed. 🙁
Sorry Dave correction Belmont mass 🙂
I have a daughter that is now 8 years old. In November 2006 she was in diapers, unable to speak, or even make eye contact with anyone or anything. She was in need of eyeglasses but unable to tolerate them on her face. At that time we found a clinic in Costa Rica that was willing to take the chance in treating her with Adult Stem Cells. She was the first child treated, and with great success. The first day that she got treated was the first night that she had ever slept through the night, and the last night that she ever wore diapers again. She has had two full treatments and continues to inprove. She is now in a regular private school in second grade. She is now able to read, write and even do math. She has complete eye contact and is able to carry on a conversation with anyone. her eye sight is now 20/20. Thank God we found our lost little girl.
Your daughter is beautiful. So is mine. Katie is 29 years old. We moved to NC because of that wonderful gift to parents of chidlren with autism, Eric Schopler and his TEACCH program at UNC. We were desperate as so many parents of older children are. We, meaning Katie too, got us through those so difficult adolescent years. She is verbal and funny and full of life but so autistic and will never be able to live without help, 24/7 love. And so as we aged and our own deaths became a reality (65 and 73) we had to do something. We founded a nonprofit ( web site aci-nc.org) that condensed our understanding of what a person with autism needed to live a life withour anxiety and fear. a lift in which happiness is possible. We found over 100 families who were is the same boat and now we sturggle to make this a reality for at least some adults with autism. Our daughter ran to our car as we left her at her group home for the first time. She said , Don't get old. What could we say. Shie is a beautiful spirit and how can we leave her in a world like this? Genie
Hello Phil,
I remember years ago before Emma was diagnosed...we were on the playground talking about the kids ...the doctor just kept telling you not to worry about Emma's lack of words....I told you the same thing. Then you looked at Emma and said "she's in her own world." Who knew how telling that observation would be. I'm so proud you are doing this awareness day so parents and friends and doctors will know more so children with autism can get an early diagnosis. You and your family are a treasure!
xo
meg
Wow. You have walked our walk. Our daughter is 15 and started having a hard time like your describing when she was about 10. Before that she was simply moderately to severely autistic but had been normalized to some degree through intensive in home ABA and preschool in a specialized classroom. She did well in kindergarten because of the intesive training but wasn't able to thrive past first grade. She wasn't able to deal with things. Then we figured out she was actually having auditory and visual hallucinations. It took quite a while to figure that out. LIke she was entering 4th grade when we figured it out. The first doctor to see it couldn't believe it..."My God she is hallucinating" the doctor said. So after years of refusing meds for her we had to try because she was becoming injurious to herself and then others if they tried to protect her from her hallucinations that were causing her to hurt herself. Those meds didn't work...for several years the med trials did not work. But we kept her at home anyway because she is part of us. We went through years of her hell with her instead of placing her in an institution. It was my husband, myself and a sister and brother who had the journey with her. It got to the point (after four years) that I felt like she was dying. She never had a spare minute away from her torment. It was constant hallucinating, or repetitive behavior. She was absolutely out of her mind. A doctor who had followed her well for the many years agreed to try one last thing...that was after all others had said it is time to give up. She has been on lithium and risperdal. Lithium controlled the hallucintions and risperdal has controlled the aggression. Also, while my daughter was having the extreme battle with psychosis she came to have an understanding about Jesus because all she could listen to was Christian radio. Any other station brought about violence due to the beat of the music and perhaps the lack of meaningful message. One day as she and my husband went on a drive to kill some time they drove by a chuch and our daughter said "look it Jesus house". He just said Amen. We love our daughter and accept the journey. She has taught the whole family a whole lot. We have been grateful that we have been sustained enough to have the grace to go through it all with her. You, my friend, keep up the good fight.
Take Care,
V Bruce
Thanks for sharing your story!
Be Aware, Show You Care.
Join my rainbow of friends...
Joanna K-V
http://www.AisForAutism.net
http://www.aisforautism.net/videos
I worked for a woman who had 3 boys. The oldest one, was what I think was autistic. He had a habit of rubbing spit on everything. He wanted everyone to hug him. The next oldest was on a strict diet to prevent him from becoming the same way. The youngest was OK. the woman told me that the oldest boy was OK for several years but slowly changed. The doctors said he had something wrong which prevented his systen from processing protien which burned his brain.
The first two boys had the problem which was the reason for the diet.
Perhaps it's something to consider.
Hi Phill , God bless your Angel,that is what I think our children are, becouse they are pure from our out side world,some times we think that it is bad but think longer and you realized that it may be a blessing. I hope my point of view can help some parents to easse their feelings, I was very ungry,depressed, frustrated and in denial after my son's diagnosis and always looking for some body to blame,I was so focus on my own feelings that I wasted my son's pressious time,but I think we all need to heal and little by little God showed to me the way to get to my son ,and it was accepting and loving him for what he is not for what I expected him to be,it was a process but I realized that praying every day for the people and the way to help my son was the key,and God sends his Angels every day to do so, in this way I can focus on my son's strengths and let the therapist to help him on his weak areas,then we can work as a team. Alex was diagnosed at 20 months of age with severe PDD (NOS) what when he turned 3 years old changed to very low funcionig Autism, after he regressed, he lost all his fine motor skill,so he was fisting like a newborn for about a year,he also lost all his verbal and socila skills, that means he needed one to one assistence all the time but all that is turning arround Alex is 6 years old and he is swimming,he rides his bike without training wheels and skates since he was 4, at 5 he started agressive skating (they skate in ramps) He's skate at parks like Brian Piccolo (Broward),Kona (Jacksonville), Treat (San Agusting)and Vasn (Orlando),all this are proffesional parks it is amazing I still can believe it, but it's real our kids are "very especial children" I want to encourage every parent who reads this note to work hard on your child strengths you'll be amazed! Our Alex still has verbal limitations,but the words are coming along,his reading , writing and math skills are at K level for general ed.Our son is being an inspiration to us and he teaches us every day about patiens,tolerance,understanding and courage because every time that we think how difficult is to be Autistic all the schedules and commands to follow, all the rules and the coartation to the expontaneous thiking and acting that he goes thrugh every day makes as to respect him more ,we are sure we could not do that every day. God bless you all
Norma and Alex
hello Phil, I had tought about something.If Emma can sent e-mails, she can do it to me,just to "talk"....Hope you understand..
Go to church sunday and make it as a "family day".Hope you understand(haha).God bless you and your family.
My son has not officially been diagnosed with autism yet – however after viewing so many cases on CNN I am quite convinced that our bundle of joy (2years 9months) displays 90% of the behavioural signs.
Unfortunately our marriage has not withheld pressures from constant hospital visits and the "expectation" of having a "normal" child.
Our son Jaydon is "my hero" – the best thing that has happened to me and my wife.
What a great feeling when I realised that I'm not alone in this unsure world of autism – I think it's fantastic that CNN has taken the initiative and brought so much information forward.
Thank you very much.
Andre van Tonder (South Africa)
I have read many people's reports about how school seem to be soul-destroying of children wiht ASD. I also have found this to be true. It seems the schools just want to get through the day. Also they want children to conform to the norm–so much for multiculturalism and diversity. I am an art teacher and not only have an autistic son but a niece as well and taught at an alternative school where many of the children (grades 7-12) had "slipped through the cracks" and hadn't acquired the skills of children their own age. Many of them could not cut with a scissors, could not draw a line using a ruler, suffered from many visual perception problems and yet they were not held to be special needs. In order for them to get the art credit they needed I had to adapt the district's art curriculum and get it approved. I did and have since been developing an adapted curriculum for autistic high schoolers. My own son has said he wants to be an artist. He creates things out of objects he finds at school and elsewhere. He has done this entirely on his own, which we find amazing as he is not copying anything he has seen. If there is anyone out there who is interested in this same topic I would be glad to hear from them. It is so important to capitalize on our children's strenghts and let them be seen by others. I am in the process of having an art show of Sean's works at his school. Students and teachers have seen him picking things up off the floor-now they can see there is a method to his "maddness".