Thursday, December 28, 2006
The impact of autism
All this week, we have been talking about autism. We have touched on some remarkable research where doctors are able to peer into the brain of an autistic child, using advanced MRI scanning techniques. While they still don't know what precisely causes autism, they are able to compare the brains of autistic children with those who don't have autism.

We have also seen the burden autism takes on an entire family. I was stunned to learn the divorce rate among parents of autistic children is 80 percent.

We have also touched on the impact early intervention could have on a child. Start treating autism before age 5, even better before 2. It can help alleviate some of the biggest barriers of autism. I was heartbroken as I heard tearful parents worry about who would take care of their autistic children when they were gone.

One of our viewers, Jerry, wrote in to tell of his 27-year-old-son. "It took 22 years to get a solid diagnosis," he wrote, and "what we need now is help in managing an adult child with this condition." Jerry went on to remind us that like most children, his son is very intelligent, even graduating from college. It is the lack of social skills though, along with the lack of resources for adults, that has left his son jobless.

Jerry raises an important issue and something we don't touch on enough. It is something that will become more important as a generation of autistic children grow up. How should society take care of autistic adults? We are so used to thinking of autism as associated with children, but eventually those children grow up. Employers may be hesitant to hire an adult with diminished social skills, and society may be unwilling to incur the additional costs of paying for them if they don't work.

The other issue that we have to touch on is the cause of autism in the first place. There have been no definitive links between autism and mercury preservatives in vaccines, but still many parents remain unconvinced. What are your thoughts?
My personal and professoinal experience with autism:
Schools should play a bigger role in diagnosis and treating autism. It ought to be covered under FAPE.
The costs of diagnosing are small for schools. Schools also have the resources to provide effective treatment.
Effective treatments exist for many forms of autism, perhaps the vast majority.
Behavioral Therapy. The government should provide mor funding to schools to train professionals. I worked and run a WARD in a psychiatric hospital using behavioral therapy. The differences were HUGE.
parents, teachers and children should learn and use behavioral therapy consistently from the earliest possible date.
Schools should provide at least 1 hour training in proper behavior, not just for autistic children, but all children. Improper school behavior is the most significant learning wall. Children can learn math, science, reading from DVDs, games, internet, etc. Social skills can only be learned through interactions.
Nutrition is very important; many children unfortunately eat poorly. See essentialfats.com. Get children to eat adequate amounts of esesntial fats and key nutrients, and be slim.
Counties should provide week-end opportunities for children with disabilities. Special areas where they can play under supervision. Charge a small fee to parents.
TV shows should explain the problems and solutions. Educational children's programs should deal more with appropriate behavior, restrain, etc. and less with singing. So many songs are pretty bad, like Londong bridge about the plague and dead bodies.
My Son AJ is Autistic, he's 14. I'm also divorced and starting to think about the future for him. I do believe that mercury preservatives in vaccines are linked to his condition, look at the Autism rate in Amish children from the same age group, the Amish don't get vaccinated, ie a control group. The numbers speek for themselves! At least I don't have to worry about my son getting drafted and dying in some far away place for GWB!
We have a son who was diagnosed 8 years ago with mild autism, when he was 3. We enrolled him in an autistic Pre-K class that year through our school system (we lived in Tallahassee at the time), and the teachers there worked miracles! Early intervention really makes a difference--our son is now mainstreamed, no one seems to be aware he is autistic, and he played little league and has lots of friends. All those years ago, we never even thought he would learn how to read, let alone interact and have a normal life. He still has some problems, but they are minor and easily handled with some creativity--he still hand-flaps when he's agitated, he doesn't enjoy crowds or being touched too much, and he has some problems with abstract language. He at times still exhibits a flatness in his voice and facial expressions, and his diet is a constant issue because of his aversion to more than a small variety of foods. But overall, he is a happy, healthy, sweet, intelligent, and lovely little boy--and I firmly believe it was because of early intervention! I thank God for those teachers, and that we were lucky enough to live in a school district that had those resources. If we had lived in our current school district, there would have been nothing for him at all. Organizations in local areas without those resources need to talk to their school boards--loudly! Write, call, or email your state representatives, your school boards, your city councilpeople. Our children can be helped.
As a parent of a 5 year old on the Autism Spectrum, I can confirm that early intervention is crucial, not just for the individual, but also giving the whole family a sense of understanding, and some relief � like we are actually taking action to help improve the prospects of the next generation.
There is research to support that intervention can be successful in older individuals too, but I see the hopelessness and exhaustion in the faces of the parents I meet and I feel that action needs to be taken immediately to ensure that their children�s miss understood brilliance is not overlooked, or worse.
If the growth of incidence of Autism and related conditions are even close to accurate, we can look forward to a generation where the most brilliant individuals struggle with the day-to-day activities.
The workplace and our social environment has to do more to support and accept every individual on the Autism Spectrum, because each of us have so much to offer, and it would be a crime not to take advantage of this �new intelligence�.
What we face as a nation and perhaps as a race is within each and every one of us. We have a choice to act or discriminate.
My daughter wasn't diagnosed until the age of 5. Her first diagnosis was mental retardation, and it was suggested that I place her in a home. I wasn't satisfied with the diagnosis, and sought second, third, and fourth opinions. I am thankful to this day that I didn't stop. Around the time she received her MMR immunization at 15 months, within two weeks she was hospitalized with croup, asthma, and pneumonia. Soon after that is when things came to an abrupt halt. She stopped talking, and refused to let any disruption in routine take place. I was the center of her world, and she wouldn't let go. Many days I would be unable to go to work, due to her "meltdowns." I think it is an interesting, and perplexing coincidence with the immunization, hospitalization, and the beginnings of her autism symptoms all about the same time. She is a high functioning, beautiful child who has been reading since she was three. She excels on certain levels, but is lagging behind socially. As a parent, you want to know the cause of your child's frustrations and battles. You seek answers to their problems and want to make things better. Everyday is a new challenge...but she is a joy, a treasure and a beauty. But you can't help but wonder if something you did for your child to protect her (immunizations) didn't cause her harm in the end.
There is scientific research showing a link between mercury and autism. Our government refuses to acknowledge it as this admittance would cause a castastrophe in the United States and wreck havoc on relationsships we have established with foreign governments who have been provided vaccines that include the mercury preservative by the United States. As we see autism rates decrease in the next five years as children are no longer receiving mercury in most vaccines (except for the flu shot), the truth will prevail and our government will have lost the faith of its citizens. Until that happens, our 1 in every 166 children who develop autism and their families will continue to pay the price.
I was very pleased with your investigation on children with autism.I have taught children with this condition and I remember hugging a student for doing such a great job and she pushed me very hard.I had alot of reading to do.I am working on an investigation on how autism affects students in the high school level.Your investigation helped me quite a bit.I enjoy your investigations especially the one on geniuses; the family tells me that I am addicted to CNN.Have a wonderful holiday and continue with your great work.Yvonne Bonilla, San Juan, Puerto Rico.
Autism was once something I feared for my twin boys. They were born at 34 weeks of gestation and as a mother you feel if anything is wrong with your child that you are the one responsible. You think things like �did I not take enough vitamins, or get enough rest during the pregnancy, did I not eat the right foods or did I do anything that could have made development of my child take a turn for the worst?� All thoughs awful things float though your head when you�re a mother. It was interesting to hear in one of your television reports Dr. Gupta that researchers are finding that autism can be cause by the child's surroundings. Well I had my twin boys tested for autism and I was told they didn�t have it, they were just speech delayed because of twin talk, which is something many children of a multiple birth pregnancies go though�but the fear that runs in a parents minds when their child could be considered to have autism is freighting.
I have been a pediatric nurse for 24 years, and while there has been an increase in the incidence of autism, I cannot attribute it to vaccines, most of which have had the mercury removed, and the fact that autism existed before there were vaccines. I think many babies are oxygen-deprived during the prenatal or birthing process, and perhaps a genetic predisposition leads to developmental problems. My youngest child had apraxia and PDD (pervasive developmental disorder), and my husband's brother has an autistic child. Both experienced anoxia during delivery. It is very hard to get treatment before the age of 2 when most doctors won't diagnose a child with autism until age 3, and then services can begin. Most insurance companies won't pay for speech, physical therapy or occupational therapy for these children, leaving their parents with few treatment options. It is heartbreaking and frustrating. Meanwhile, one out of every 166 children is diagnosed with this probem.
My brother was diagnosed at 4, then it was mild autism, now aspergers. my parents started early intervention straight away, with forming therapy groups and were 24 hrs working to help my brother Josh . Unfortunatly today we see no streched results, as my mum said who left the family to travel monthly to feuerstien with him, and my dad who spent 00000,0000 of $'s- "if only we spent more time on our daily lives and marriage, Josh would have grown in a family way!" sometimes parents go too out the way, were as for these children a solid home and more outside help, is sometimes worth more!
Rachel
Twice over the last year or so, I've been told by 'experts' in the field of autism that one possible cause of some autism could be trauma. This would explain my grandson's symtoms that came on at five--he'd been social, affectionate, with few behavioral incidents until he was physically and sexually abused by his bio-mother and physically abused by her boyfriend. Weeks after his fifth birthday, he and his younger brothers were removed from the mother, who had had custody of the boys every other week, and placed with their father (my son) in my home. His behaviors and social skills went down rapidly. By first grade, he was placed in a special class and was admitted for one week to a child and adolescent crisis stablazation unit. (Where I am a counselor, but not on that unit while he was there, of course.) The autism evaluation began there and I felt 'why didn't I think of that?' But it was so late, unless that trauma business is one cause. If it is, do you--or your experts-think that the trauma-induced cases could be reversed? Meanwhile, we are working with a large group of specialists, using behavioral modification where it will work, continuing meds and psychiatrist appointments, and finding appropriate ways to socialize him more. (Excuse my spelling; since July 06, I've had several 'stroke-like' episodes and the excellent spelling I'd achieved in college disappeared and now I spell like I did in primary and early secondary school) (My son & his family live in Toledo, OH. I moved 'back home' d/t my health.)
I have a lot of respect for Dr. Gupta but like many other people, he struck a nerve with me during his article on Autism. Almost every on refers to a child with autism as an "Autistic Child". As a parent of a child with autism this bothers me. It is as if that is all the child is about. You don't refer to a child that has cancer as a "Cancerious Child". I do however appreciate all of the work that Dr. Gupta is doing to promote autism awareness.
I have a 21-year-old son with autism. He is verbal and high-functioning, but the autism impairs his social skills and ability to communicate what he knows. He has been turned down by colleges, even though he tests in the normal range of IQ.

There are very few services and supports for young adults with autism. I believe this is because until recently, little was known about the condition and fewer children were diagnosed. Now categorized by some as an "epidemic", the situation is changing. That is wonderful, especially for younger children. I hope that society catches up with us, and that more services will be avaiable for adults with autism.

Until my son was in school, there was support and services for him. Now, there are very few programs and outlets available. There are few places we can even hope to enroll him to further his education. And, very few employers will even consider giving people with autism a chance at employment. It's hard to tell your son that he can't do what he wants to do, even though he has the will and ability to achieve his goal. It's heart-breaking to tell your child that he has to do something that others tell him to do because that's the only option.

I cry when I think of his potential and that there isn't a way to demonstrate that, help him grow, be happy and productive.

I believe that genetics do play a role in the development of autism. I also believe there are environmental triggers. In my case, I am convinced that trigger was taxoplasmosis. I was diagnosed with it in my second trimester. Even though I didn't know anything about toxoplasmosis, my maternal gut told me that it would have a long-lasting impact on my child. I believe it did. That impact, I believe, is autism.
regarding early intervention, i agree it is never too early to get help. my nephew was diagnosed with autism aroung the age of 30 months and he just turned 5 years old. he is now talking, interacting with the world and a darling little boy.
Thank you Dr. Gupta for giving equal time in your coverage of autism to the particular concerns of teens and adults. Too often we hear only stories of early intervention- and never enough about the lifelong commitment that families make to the care of their loved ones with this terrible disorder. As the parent of a 15 year old beautiful young man, I am cognizant that despite EVERY intervention (starting at age 2) my son will never be an independent person. More attention needs to be paid to the lifelong fiscal and medical needs of these dependent citizens. Again, sincere thanks for bringing this more sobering view out into the open.
My son exhibited his first "febrile" seizure within hours of his 6 month DTP vaccination. Long story, but... he was diagnosed with Pervasive Development Disorder at age 10. PDD is a highly functional level of autism.

He is now 23 and definitely socially inept. He may complete college, but he may not. In either case, I am convinced that he may be successful at interviewing, and may actually be hired. However, it is impossible that he will keep a job. The future for this bright young man is dim.

His seizures continue. It is difficult to convince him to take his meds, despite so many incidents of falling during seizures, hitting either his head or dislocating his shoulder. His emergency room bills are astronomical!

We need a safety net for these adults. Please bring on universal health care!!! I worry what will happen when he ages out of my medical coverage, with his medications costing over $500 per month. My guess is that he will defer purchasing them. The social costs of him becoming indigent are far greater than the costs of universally supporting those like him.
I'm the mother of a 3 year old boy who is Autistic. We started treatment when he lost language and social skills around 20 months. He is in a private school and has Speech,OT and we will start ABA in Janauary. His current school and therapy cost us $3k a month. The average cost of raising an autistic child is $40k a year. I'm fighting for his live ans well as my marriage every day! The stress of trying to provide quality time needed for my son and his sibling. Going out into the world to work 40-60 hrs a week, to provide the treatment needed, not to mention taking him to all of his appointments. This can take a toll on any parents and their marriage. But this is my child and like most parents I would go to the end of the earth for him! I do believe that we are seeing a rise in numbers, because of our environment...what that is in our envrionment...I'm not sure. Thank you for doing the special and bringing more awarenes to our world.
I have a six year old son whom was diagnosed with autism prior to my deployment to Afghanistan in 2004. Prior to this time my wife and myself noticed him experiencing difficulties in communication. We wondered how did this happen. After reading on the subject, we quickly went back to a point when he was a year old and experiencing ear infections. Later found out about mercury and the issues. If there are no known links with mercury, then how is autism caused???This has caused a strain on our family and know that the government needs to place more efforts in this disease. Only a handful of states even have intervention and facilities available. My family is spending alot out of pocket and insurances are not covering treatment for this disease. As a reader posted earlier, these children grow up. We know how normal individuals have issues in the workplace, what about the austistic children??
I am the mother of a 3.5 year old who has received services through the Birth To Three Program and has now moved on to the public school (pre-k)placement. He falls into a category that doesn't make a diagnosis clear. He shows some autistic tendencies, but not others. He is aware, engaged and happy. The only clear diagnosis we have received is Apraxia, which is actually changing daily it seems. The diagnosis of PDD-NOS came as a shock to us because he was so loving and involved with us and his brother. He did have a lot of little "quirks" that we thought were just something he would outgrow eventually. He is a lovely, beautiful child and we all just adore him.

I would like to encourage parents who have any questions about their childs development or is worried about something to call and have an evaluation done. The Birth To Three Program is available for any child, and is a wonderful resource. They come to your home, it's free and if they find your child is eligible for services they provide it all and in your home so you can fully participate. It is really a great service. After the child turns three though, there is a question of eligibility and the process seems to start all over again. It is a challenge, but well worth the work. Our son has made huge changes just in the short amount of time he has been working with therapists. It is absolutely amazing to see it, and yet my husband and I are working full time to pay for it all. People should also check into private programs, we found one in our community and although it is expensive they give scholarships and have lots of private donations that help the families with costs.

Finally, I just want to say thank you to the people who work so hard with all of our kids... the teachers, therapists, doctors and caregivers. They are some of the most amazing people I have ever had the priviledge to work with. Thank you all.
I have been an ABA therapist working with children with autism and just want to make sure parents understand that while it is never too early to begin treatment, it is never too late to implement behavioral, physical, occupational and speech therapies. The field is currently adjusting to care for older persons with autism, but don�t take no for an answer for services during this adjustment period.
-d
I have worked with children with Autism for the past 5 years in a residential year-round camp for children with special needs. Watching your reports has braught up issued that I had discovered through my interactions with the children and their families. They also reinforced my desire to provide families with the tools to work with their child at home. I am moving to New York City this year and am desperately looking to pursue a career in that specific field. Do you have any advice on where to look for such an opportunity? I have a Bachelor degree in Psych and an extensive amount of direct experince working wih children with Autism and using ABA techniques. however, Early Intervention programs and schools are asking for all sorts of degrees and certifications to work with their kids. If the need for more experienced and dedicated people to work with kids and parents is out there, why is it so difficult to get in??? I would love to hear your answers.

Thanx for the great work and happy holidays!
I don't know much about autism except for the Documentary, Autism is a World. In many cases, society is too judgemental when it comes to interpreting what people think of others who do not seem normal. If I did not see the documentary, and walk on the streets and saw a person holding two spoons, hanging out at sink with running water I would think the person is crazy. Now I know different, and I would incourage care givers, and persons that do have Autism, to continue to educate everyone because this is a big world and we should all except people with what they do and dont have period.
Throughout high school I babysat 2 sisters, the older one had Autism and the younger one didn�t. The greatest challenge that I witnessed the family face was getting the younger one to understand what her elder sister, Abby, was going through and why. Just a week ago, I came back home from college and saw the girls. I asked them what they got for Christmas and the younger one said she got children�s books on Autism and that she really liked them. I think that that is a great way to get children to understand and become aware of what Autism is, but I wonder what else might help to increase the awareness for siblings and even classmates of children with Autism.
I have a 10 year old son who has autism and I'm so glad to see the increased coverage of the struggles of autism for both the individual and the families. He was first diagnosed at about age 3 and a half and I felt like I was the only person dealing with this disease. As he grows older, I find that the options are shrinking and I feel like all of the efforts for autism are focused on early intervention and the very young. I worry about what the future holds for my son and how I'm going to afford treatment and therapy in the coming years. I'm hopeful that the Combating Autism Bill that just passed will make a big difference in our understanding of how autism makes our kids different and what we can do to help them. I just pray that the government starts to realize how this epidemic affects families across America and how much help is needed to really further the growth of our children who will soon become adults with autism. I can't afford to try every therapy I read about, regardless of how promising they sound and that is incredibly frustrating. It makes me feel like I might be missing out on something that might make a big difference in my child's everyday life. Still, I thank the media sources that are finally making autism an issue that widespread America has now heard of. If the average American can get a general understanding of the struggles our families deal with, maybe they can be less judgemental when they see us in public. Please keep up your reporting and raising awareness about autism....it is the key to influencing our government and society so that one day we can find a cause (or causes) and, if possible, a cure!
I am the father of a 22 year old son who has Autism, PDD, and OCD. Our son developed and hit all the "Mile" stones through the age of 2. At that time he was mistakenly given two MRR shots within a one month period. Within weeks of the 2nd shot we started noticing that he was losing his ability to speak and was have mild seizures.

It took a long two years of testing before we were presented with the diagnosis of Autism. Some of the advice we received was as severe as " put him in an institution and forget about him, as he will never be able to acknowledge you or show you any affection". After the diagnosis from a well respected children's hospital, we were given no suggestions for assistance or any course of action for treatment. We were given a diagnosis, which was heatedly debated amongst the many doctors, and released from their "care".

Our son has never regained his speech and is considered mild to severe along the Autism spectrum.

It has been a most difficult time trying to obtain services for our son. In the late 80's and early 90's there was little help available. We were also not near relatives so we were very dependent on ourselves. We spent a small fortune investigating possible treatments and never received any assistance from our insurance company. Even when our son had a broken bone the insurance company didn't want to pay as they tried to attribute it to his Autism.

As for the general public, we encountered some interesting remarks. We decided that we would not isolate our son and took him everywhere with us. Usually his behavior would solicit comments about what bad parents we must be and how did we allow our child to be so unruly. I tell people that we have been asked to leave some of the finest places around ( Never once were we ever asked what the issue was, but just asked to leave).

We also learn what it was like to become isolated, as friends did not want to be around you or would ask that you not bring your son. Our take was always if our son was welcome then we weren't either.

Andy is our first born. We debated about having any additional children. We decided that we would. We now have three great sons. Our 2nd & 3rd chid were not given their vacinations as prescribed. Our 2nd son was given his on a much delayed schedule and never in combination. Our 3rd son was not given vacinatios as we noticed some possibile issues with his development at the age of approx. 20 months. At that time we had been fortunate to meet up with aDoctor from the Chicago area who tested our son with Autism for allergies and tested his digestive system. It was determined that our son digestive system was totally messed up. Also, he was allergic to "gluten" and "Caesen". We immediately put Andy on a gluten & caesen free diet along with numerous natural suppliments to help his digestive system. At the same time we also put our youngest son on that same diet. Remarkably, within two weeks we noticed significant changes in our youngest son and within one months we noticed subtle positive changes in our son with Autism. This was in late 1998 and our son with Autism remains on this diet. We continue to see postive changes especially in his receptive skills and his behavior. Our youngest son is now off the diet and shows no autistic tendencies.

My wife and I have beaten the odds as we will be celbrating our 26 wedding anniversary in 2007. As difficult as it has been and as scary as what the future will bring as far as care for our son, this experience has changed me, for the better, and we have been able to offer support to families who are dealing with this most difficult issue. Our son with Autism, Andy, has proved the individual who told us to basically lock him up and forget him to be a very ignorant individual. For Andy is extremely caring and loving, and I can not imagine my life without him.

I continue to pray that a cause and cure are found. I also pray that the Medical Professional and Government Officials would open their hearts, eyes and ears to the many parents and consider taking some precautionary measures now rather than risk the possibility that another child and family are forced to deal with Autism.
I also appreciate the effort of individuals who are trying to bring Autism and its difficulties to the forefront.
There are already businesses which hire people with limited social skills.We just call them rude. There are many jobs that can better be done by an autistic person and we should find positions that best suit the unique skills of an autistic person.
I am in an exact situation that these parents are. I have a disabled child with severe epilepsy and new this from 1 � years. Something this radical although I may understand partially why they may want to do this I do not think enough thought has gone into their decision.

I really think this decision leans more on being selfish rather then rationally weighing the pro�s and con�s

Surgery all has risks during and after. These risks do include death and complications both immediate and future due to the actions they take. To do this simply to care for the child????

They can get assistance to help them care. They can also obtain machines and devices as well to help. More important is that in some states (NY) they provide a huge amount of assistance and last that if they are not capable of caring after 18 and I think 19 in some states the Government will provide the assistance and help.

Although I understand the intentions of the Parents I do not think they have had the proper information or guidance with this decision. In addition I question what the Doctor�s knowledge of these situations was as I have experienced many doctors simply do not understand everything there is to help in raising disabled children.

Please do realize that we fully understand that caring for a disabled child changes your life and the things you are capable of doing. However, having a child disabled or not is a life time responsibility and all children change parents lives in different ways as to what we can do and can not do.
Which states cover the therapy (speech, physical, etc.) needed to help a child with autism and/or apraxia?
i want to thank you for your interview of amanda baggs , wonderful. iam a mother of a 25 year old with autism who uses facilitated communication. many large groups have been using the method for over a decade and are now independent and communicating as amanda is but usually typing with one finger. these large groups to name a few are the whittier school district. syracuse university area, midway training center in minn. and my friends daughter jessica kremmen who is severely autistic but communicating amazing things independently for about fifteen years. It is wonderful that amanda has broken thru and made so public what has been known by so many for so long. many groups that have refused to even visit anyone autistic who are typing independently have gone to unbelievable lengths to cover this up. as my son has typed" I understand why people think I am mentally retarded but dont understand them wanting me to be.' Thanks again for the respect you showed amanda and your interview has answered my prayers that people will finally begin to have some understanding of the extensive capabilities of those with autism/
My youngest brother will be 24 this June and facing a psychiatric comorbidity as an autistic individual. I believe Autism is a public health issue and awareness of the needs of all individuals with autism MUST be a priority.
Financial support for individualized educational programs with active participation of caregivers will relief the cost of this lifelong condition.
In my brothers case, after six days of hospitalization due to fever of unknown origen, his delayed language development was attributed by the pediatrician to his upbringing in a bilingual household, despite the fact of having two older siblings. It is unbearable to hear of parents still facing the uncertainty of a diagnosis today.
We still remember how we followed him when he became withdrawn, staring at his stereotypic movements, curious to know what he saw as he glanced into the sky, but he never answered. Years have passed and he is now Uncle Danny and his nephews also stare and ask questions, for which there are still no answers.
Dear Dr. Gupta,
I've been looking around on the internet, and so far quite a few authors are claiming that the divorce rates for parents of autistic children is about 75-80%, much like your recent entry. I would really like to know where this statistic came from, which study or anything that can help me validate this statistic. Thank you.
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