Welcome to the Easter Seals and Autism blog

It seems that every day I learn about another family who is living with a family member with autism or about a family with a child recently diagnosed with autism. Many people are now referring to autism as an epidemic. Based on the recent report from the Centers for Disease Control and Prevention about the incidence of autism in America, it’s difficult to argue the point.

Behind the numbers, there are very real challenges for the people diagnosed with autism and for their families. How do they begin to make sense of this diagnosis when there is currently no known cause or cure? That’s where Easter Seals comes in.

For nearly 90 years, Easter Seals has been responding to issues that affect individuals and their families. The same is true about autism. We are launching this blog and Web site because Easter Seals is one of the nation’s leading providers of services and support for children and adults living with autism and their families. We’re unique because we’re working internationally to deliver personalized treatment and service for people with autism — today.

With the creation of this blog, I’m asking members of the Easter Seals family — individuals and families living with autism, autism experts, service providers, and many others — to contribute to the blog discussion about services and treatment options that are helping people with autism right now.

And I ask you to help us understand the challenges you’re facing and how we can work together to change the lives of people living with autism.

There will be more to come — be sure to subscribe to our blog and spread the word. This April is National Autism Awareness Month. Help us let people know that Easter Seals is here to help right now in communities across the country.

Read Jim Williams’ bio


 

Comments may not reflect Easterseals' policies or positions.


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  1. Sydney Palese Says:

    Thank you, Eileen! We appreciate your feedback.

    Sincerely,
    Sydney


  2. Eileen K Says:

    I have been reading this Easter Seals blog–for the first time– for over an hour, finding its entries informative and encouraging. Thank you for taking such care to bring these facts and personal stories to the public.

    Best of luck moving ahead,

    Eileen K


  3. John Best Jr Says:

    Who is this Lori Robb that you allow her to call what I say inaccurate without allowing me to post a reply? Is she the Grand Wizard of autism or something?
    Everything I said is 100% accurate and I can easily back it up.


  4. Darlene Jones Says:

    My 5-year-old grandson has Autism and has lived with my husband and me since birth. Last year, after confronting the fact that no one really understood the day-to-day struggles involved, I wrote a book that chronicles our journey to understand his world and to bring him into our world. The book is “To See the World Through Cody’s Eyes” and is available for purchase online. My website http://www.freewebs.com/codyseyes2006 was originally meant to promote the book, but I have recently expanded it to attempt a connection between families, friends and the community to ease the burden of the children and their families. Information on the book is on the site as well as specific information on my grandson and his continued struggle. Please visit and make any suggestions you feel would be of help.


  5. Julie Says:

    Dear Easter Seals,

    This blog is a nice idea. Now, can you start splitting it into topics — make an “Alternative Treatments” — so people who don’t want to argue about it any more can go on to something else?

    THANK YOU!


  6. Lori Robb Says:

    John, as I stated before it would be a tragedy for this site to be used as an arguing ground for treatment options. You have your opinions and I believe are geniunely looking for a cure as are many other groups. They have their own forums. This forum should be a place where people can come to of course ask for help but also find a social outlet which is so very lacking in older and even younger people with autism. I do not want to argue with you but autism has been around long before the 1930’s and the start of mandatory vaccinations for children. The first written citation of autism was in 1799 by a French doctor named JMG Itard. Another citation was in 1919 by Lightner Witmer who wrote about a 2 year old boy with autism. It was not called autism then, not until Kanner coined the name in the 1940’s. Why is there an increase today? I don’t know and neither do others. Vaccinations are only one theory and have not been proven to be the cause. DAN is working hard, I know, but there is no absolute proven cause for autism. I hope and pray they do find one. But for now my focus is on my son and his quality of life–not a cure. And yes he was tested for fragile x and he does not have it. We went through years of different therapies and testings until finally I just said enough! The poor boy was not going to be a human guinea pig anymore. Thanks for your input and keep doing what you are doing. I just wanted to set the record straight as you are not giving completely accurate information.


  7. John Best Says:

    Lori, Have you tested for fragile X or other genetic causes of autism? Have you tested for mercury with a hair test or pophyrins?
    There are lots of people who’ve dealt with autism longer than my ten years. The information they had available until 1999 only told them that there was no known cause or cure for autism. Now, that has changed. We know that autism originated in 1931 when thimerosal was first used in vaccines. All of that “knowledge” that was gained prior to 1999 is now obsolete and can be discarded. We know how to help autistm sufferers with biomedical intervention because we know what the cause is.
    I know people who have accepted this knowledge and helped their adult children to speak for the first time. I am not beating anyone up and I’m really sorry you feel that way. I am only trying to educate those who rely on the people who caused the epidemic (doctors) for their information. Most doctors will never admit the truth about autism because they never bothered to check how much mercury they were giving to infants before it was too late. Thankfully, we have a few hundred doctors working with Defeat Autism Now (DAN) who are helping our children instead of covering up a huge case of malpractice. Please look at http://www.generationrescue.org . Don’t just take my word for all of this. I only want to everyone learn the truth.


  8. Lori Robb Says:

    Also I wanted to congratulate Susan Pieples said about autism. She, like me, understands, this fight. To John Best and his saying” I see any acceptance of Autism as accepting defeat.” That is not a productive thing for you to say to people who have walked this road much longer than you. I come here to find support not to have someone else “beat me up” because I accept what is. You do what you must do. We do what we must do. Again thank you Easter Seals.


  9. Lori Robb Says:

    I posted some comments on “the big tent” blog. Many of you that have posted here have young children with autism. I congratulate you on finding out what worked for your children to get them healthy. However, please understand that a few of us have been “doing this” longer and have been “fighting the fight” much longer. My son is 17 almost 18 and was diagnosed at age 3. I am convinced his autism has nothing to do with vaccines. In the beginning I wanted it to have something to do with it.Then I could at the least have a “cure” or an answer. But there was no correlation to the vaccines and my son’s autism. This issue has been here a long, long time. Long before “chelation”. But you see, my son NEVER started speaking and then stopped. HE NEVER digressed. His autism had no correlation with the vaccines at all. I’m not saying yours didn’t. They obviously did. But understand that not all children and adults with autism had their autism “caused ” by vaccinations. There is no evidence to that. Autism has been around much longer than vaccines. To that there is historical fact.

    Please understand this is not an “angry ” post like another member said. I just want the record to be straight. Misinformation gives false hope and misleads people down the wrong road. There is no cure for autism. If however, chelation helps some children, then by all means use it. Their autism was most likely caused by the vaccines. My my son’s and others were not caused by vaccines.

    My son is almost 18 and his issues no longer focus on a “cure”. They focus on living skills and job skills and that’s why I applaud Easter Seals for taking up this cause. Please don’t make this a site for arguing treatments. Make this a site for seeking options. Thank you .


  10. April Says:

    John, Thank you so much for your response. Good Luck and God Bless you for helping your son. April 🙂


  11. John Best Says:

    April, Go to http://www.generationrescue.org and find a Rescue Angel in your area who can advise you. You can also check the Yahoo group Autism-Mercury and learn about Andy Cutler’s protocol for detoxifying children of mercury.
    Don’t listen to anyone who wants to use EDTA as a chelator. The only thing that’s essential for chelation is Alpha Lipoic Acid and supplements.


  12. shanna Says:

    I totally agree with Valerie Morrows comments about recreation and entertainment for older teens. I would love to get valeries email to talk with her to see how she is helping her son in this area or how anyone is dealing with this area. My younger teenage son (not autistic) goes on group outings with friends all the time so my older son is obviously jelous and wants his own group of friends. How does someone start or find a social group for autistic teenagers or young adults? Thanks Valerie I am glad to hear my son is not the only lonely autistic around. Shanna shannaatchley@yahoo.com


  13. April Says:

    Hi John Best,
    My 3 year old son has been diagnosed as developmentally delayed, but has several traits of autism. My husband and I working with him exstensively, to include speech and language therapy. I am convinced that his vaccinations had something to do with his disorder. I am desparate with finding a cure for him. Is it possible for you to share what chelation therapy consists of, (i.e. is it safe, what medical doctor you took your son to, how many treatments needed, and did you see immediate results). I just can’t let this horrible disorder take over my son’s life. Thanks you so much!!!!


  14. heather Says:

    my son is 4 and is autistic. he was never developmentally on target and i always knew that there was something “different” with him. i started the early intervention program at 15mos with him and it helped some. we got a formal asd diagnosis when he turned 3yo. he does speak but is still not developmentally on target. he has been worked with since 15mos doing floortime therapy and it really has helped to open him up some to the outside world. i think that what easterseals is doing is wonderful. so many families dont know where to turn, and it is really hard raising my son, i raise him basically with no help from his father and it is great to know that there is somewhere to turn!!


  15. Mary C. Says:

    Thank you for your response on line item 30.

    I will contact you.


  16. John Best Says:

    My son was a normal, happy, attentive baby. Mercury turned him into a zombie until chelation began to give him his life back. I will never settle for simply improving symptoms. I see any acceptance of autism as accepting defeat. I’m fighting for my kid with everything I have until I give him back the normal existence he was born with. No person should go through life disabled by mercury from vaccines. Children are being cured completely and until we cure them all, we are not looking out for their best interests.


  17. John Cocciolone Says:

    For those of you looking for service in Michigan, write me. I will put you in touch with the right people here at our affiliate.

    As for the School in the Grand Rapids, MI area… I am very interested. Get in touch with me and let’s see what can be done !!!

    John
    President of ES-Michigan


  18. Charles Deering Says:

    This site is a most welcome resource for the autism community. I learned of it minutes after launching a new site (www.sultasto.com/andrewmichael) about the musical, “Andrew Michael.” It’s about a family’s challenges with autism. The occasion for the new site is our church’s response to Autism Awareness Month.

    –Charles


  19. Michelle Says:

    Susan,

    I am not looking to cure my boys of autism. I am recovering them from the vaccine injury that was done to them.

    So far with all the chelation and biomedical therapies we have done, they have become so much healthier.

    As all the metals and viruses and bacteria have been coming out of their bodies, their bodies have once again become healthier. They aren’t having the GI problems they did when they regressed from the vaccines, their neurotransmitters are in balance, their CBCs are now within range, the thyroid gland and adrenal glands are functioning as they should, etc…Autism is an outdated term, the updated term is vaccine injury.

    Please don’t feel that this is an angry post (it’s hard to know the tone in an e-mail), it isn’t. I simply want to let you know that parents aren’t trying to cure their kids, and change them. We are trying to get our kids healthy again, like they were before the vaccines injured them. You may not be aware of all the medical conditions our kids have from the vaccines.

    Once you get the toxins out, the body does start to heal itself.

    HTH,

    Michelle


  20. Susan Pieples Says:

    I would like to make a comment as a daughter of someone with autism and a parent of a twenty year old who has Asperger’s Snydrome. There are many, many good reasons not to want a cure. Many adults with autism are living lives they are happy with, even when we as parents are disappointed. As a community, I wish we would be more mindful that there are gifts that come with autism that should not be allowed to be “cured”. I want for my son to be less anxious, more comfortable, fully employed and completely accepted for who he is. One of his favorite t-shirts says “people like you are the reason people like me need medication.” I really really appreciate all that Easterseals is doing for autism and I look forward to working closely with our local Easterseals in Indiana, but I am not comfortable with the slogan “until there is a cure…there is easterseals.” My son isn’t his autism, it is just one feature that complicates who he is and how we relate to him. Maybe it is we who are disabled.
    Thank you so much, Easterseals for joining this community in our search for services, support and understanding.


  21. Pamela Azar Says:

    Hi. I have a 9 year old with Asperger Syndrome. He was passed along by our school system when he was red flagged by the Child Outreach program.He was passed along because he can pass tests. 4 eyars later he is falling apart. I have more doctors than I can count..the school fights me on everything. Lawyers are involved…the battle goes on..the scariest thing is that the Head of Student Services is the head of our schools Human Resource department and was appointed Superintendent as well effective in June. Why is this scary? I work as a teacher in the same school district. I am fighting hard for my son. I hope I don;t lose my job. I am getting sick over this yet I must persevere. I am sad because I have worked hard to build my teaching record and now I feel shunned by some of the people that have worked with me for years. Now I am that “crazy mother”. As many that are reading this of course we the parents are at fault according to the school’s that are clueless in how to teach children with Asperger’s. Thank you for listening. It helps to express my self. Thank you easter Seals for joining the Autism battle.


  22. Michelle Says:

    Hi Sheila,

    Which state do you live in? I believe all but 2 states allow for vaccine exemptions. There are medical exemptions that an MD has to sign, there is a philisophical exemption (not many states offer these), and there is the religious exemption (this is based on your personal religious belief, not your religion per se).

    For all 3 of my kids I wrote a religious exemption when they started kindergarten because there was just no way any of them were going to get boosters.

    There is a Yahoo group called chelating kids 2. If you go there and join, you post which state you are in and there is bound to be someone from your state that can help you with this.

    HTH, and take care,

    Michelle


  23. Ellen Harrington-Kane Says:

    To find a behavior analyst in your community, you can go to the Behavior Analyst Certification Board at http://www.bacb.com. At this site you can search for a board certified behavior analyst and get their contact information. They list all certified BCBA’s in the country.


  24. Gianna Tripodi-Bhise Says:

    Wendy, Sheila, Holly and others, I found a great online resource called AutismLink.org that helps you to locate services and providers in your state. It also has a lot of other great information.


  25. Terry Says:

    I am so glad. My son is 8 and is autistic and I dont know where to turn at times for help. It is great to know that you are there.


  26. Ellen Harrington-Kane Says:

    For those of you looking for services in your community, please be sure to check the Easter Seals national website at http://www.easterseals.com. Here, you can enter your zip code and get connected to the Easter Seals serving your area.

    Easter Seals Michigan has an innovative program available in many parts of the state for children with autism, call the P.L.A.Y. Project. It is based on the DIR/Floortime model by Stanley Greenspan, MD. Their website is
    http://www.mi.easterseals.com.


  27. Sheila Says:

    One other thing…what about the shots? Our oldest (6 years old) only had one round of MMR and needs another but I never got it because his problems started to show. My younger son never had the MMR – and is “normal”. He will be going into Kindergarten next year and I don’t want him to have the shots. I have taken him to two doctors and neither agree with me. I’m sure they think I’m crazy. We just need that little blue form filled out so he can go to school. What do other parents do to get around this shot?


  28. Sheila Says:

    I am also fighting my son’s school for special services. His diagnosis is something like “unspecified pervasive developmental delay”. He scores above average academically, but has a hard time relating to other children in his Kindergarten class. When the teacher complains to us about his behavior, we reply that maybe we should apply for special services again. She then backs-off and says he is above average in testing. This dance has been going on all year this year. That’s nice that he’s smart, but we would prefer average intelligence and normal social skills. We know he isn’t normal…he drives us crazy at home some days. One example of his quirky behavior is: The teacher wrote an e-mail saying Alex knocked the snack out of another child’s hand at school. When I asked him about it, he was upset and couldn’t understand why he was in trouble. He said he was just trying to “take the snack away” from the little girl because he didn’t like what we gave him for snack. He kept insisting that knocking the snack on the floor was just an accident and he shouldn’t be in trouble for it. He just doesn’t “get it”. He is in trouble in school and doesn’t understand why. The other children are saying, “he’s bad”. He understands that they don’t want to be his friend, he just doesn’t know why. It’s heartbreaking. I’m looking for something (someone) to help me with getting special services at school. We live in Spotsylvania County, Virginia. Any advice??


  29. Dave Says:

    It’s awesome to know that Easter Seals is taking an active role in the fight against Autism. Some of the posts here seek additional information concerning the disease. If it’s appropriate to list these sites:

    http://www.autism-resources.com/links/index.html has an extensive list of Autism related material and links to other sites of information.

    http://www.disabilityhelpsite.com/impairment.htm also has information relevant to this impairment.

    Keep up the fight Jim


  30. Holly Says:

    Does the Easter Seals in KCMO have anything specifically for Autism?


  31. Holly Says:

    I am trying to find a Board Cerified ABA that is willing to take on my family. If anyone knows of anyone please let me know.
    Thank you


  32. Mary C. Says:

    Elaine – You may want to look at a few websites, I’ve listed below. Remember there are several components of the causes of Autism according to the research at Yale etc. Some children may be predisposed to not flushing out metals in their body as well as the typical person. There is a genetic component to ASD’s that is being researched every day. UCLA has a research center for Autism, as does the University of Michigan and many others world wide. The best thing to do is have everyone you know e-mail or call their congress people with your concerns and join a advocacy group to support autism education.

    There is a group entitled Moms against mercury if your friend is interested in their information. They also have a website. Autism Speaks has combined with other groups and have made an impact within the autism community and their website is filled with information.

    http://www.cdc.gov/ncbddd/autism/index.htm

    http://childnett.tv/

    http://www.autismspeaks.org/supportlegislation/index.php


  33. Elaine Gauck Says:

    What is being done to investigate the link between autism and the MMR vaccine?????
    I have a friend that videotaped her “normal” child until he got the MMR vaccine, after which he became autistic.
    The coverup to avoid lawsuits is demonic.
    AN OUNCE OF PREVENTION IS WORTH A POUND OF CURE.


  34. Elaine Gauck Says:

    How far have you come in investigating the link between the MMR vaccine and autism????
    I have a friend whose child was videotaped as totally normal until he got the MMR vaccine. Then suddenly he was autistic.
    The coverup to avoid lawsuits is horrendous.
    ONE OUNCE OF PREVENTION IS WORTH A POUND OF CURE.


  35. Mary C. Says:

    Wendy, re: your four your old son in Michigan. I have a 4 and 1/2 year old son too. I have done the research regarding facilities and people that provide education for ASD’s. The few places in the Grand Rapids area that offer services are profit based and very expensive. (not including Easter Seals of course) I suggest you “choose” the school your child attends in Kindergarten and beyond. I myself will be sending my son to a nearby public school that is more experienced in educating students who have a spectrum disorder. The public school district I reside in did not meet my expectations during a personal meeting I had with their so called “director” of special education, therefore I chose a better qualified school. Advocating for your son may be the most difficult thing you do, but it is the most important. Remember, you have the choice as to what school he attends. Additionally, my son benefitted from the sensory group that is offered through Easter Seals. It is a six week program held once a week.

    The dead end syndrome you described is very real and painful for parents like us. The “early on” program for children 0 – 3 is helpful, but once the child is three and he passes their tests with flying colors they no longer want to provide education for the child. At this point he has to wait until he is in a classroom where the behavior is interupting the class and then possibly he will be given OT or some therapy in a resource class for an hour or two.

    I believe Grand Rapids has a real demand for a school that is geared towards students with ASD’s. I have seen charter schools in other states that are geared towards children with special needs and their social and behavioral skills.

    There are seminars you can attend occasionally for a fee that can help provide information for parenting ASD related behaviors. The Gray Center has a website and newsletter that may provide that information as it comes. If you’re in the Detroit area they a school called Kaufman Children’s Center in West Bloomfield. They may be a good resource for you. Kalamazoo has an Aspergers group and Western Michigan offers ABA therapy for ASD children. Hope this helps. Additionally, if any educators or professionals plan to build a school for autism related disorders in the Grand Rapids Michigan area I know of a builder or two that will donate their labor and expertise.


  36. Michelle Says:

    I have to agree with John. Getting the mercury out helps children recover. But we can’t forget about the tons of aluminum that are in vaccines as well. And the formaldehyde, antifreeze, monkey cells, aborted human fetal tissue, viruses, bacteria, msg etc…

    Vaccines are loaded with toxins, and have never been proven to give immunity. If you read the vaccine inserts you will be sickened to see what has been injected into our children. These ingredients can only do harm to our bodies, especially such young infants who are still developing.

    By the way, I am the Mom of 2 boys who regressed into autism after receiving vaccines. They were considered severely autistic, now after biomedical/chelation they are no longer considered autistic. Their bodies are still healing from all the damage that the vaccines have done to them, but I am very hopeful that they will be able to live on their own and take care of themselves when they are older.

    Sincerely,

    Michelle


  37. Wendy Says:

    I have a 4 1/2 year old son with autism. I’m looking for some help in Michigan. Everywhere I try is a dead end.


  38. Valerie Morrow Says:

    For so many years, my son who is 19 and is a high functioning autistic, had nowhere to go for recreation and entertainment. I am hoping that now that Easter Seals has embraced autism there will be a greater sense of community and inclusion for the wonderful autistic individuals who so deserve to have fun just like everyone else!


  39. Tina Buratti Says:

    Thank you Easter Seals. I have a 6-year-old son with autism. I need help and never know where to turn. Maybe now I can call on you for some help.


  40. Brenda Zumo Says:

    When I called Easter Seals a couple of years ago, they told me that services were only available for up to 5 years of age,unless they needed feeding help, has this changed in Montgomery? My child is 8 years old and I would like to know what Easter Seals in Montgomery Alabama offers for her?


  41. John Best Says:

    Mary, There is no single treatment that works for all autistic children. Chelation is curing some children completely, not just ameliorating symptoms.


  42. Liz Sidener Says:

    Thank you so much for this special blog. I belong to a Special Needs Children’s Mom’s Group that meets monthly for a Mom’s Night Out. My daughter was born with a rare chromosome disorder and severe disabilities but I did not know much about Autism until I joined the Mom’s Group. Most of the Moms have children with one form or another of Autism. I am learning more and more about this disorder and also what families go through to get services for their children through the School Districts in our area. It can be very hard on families to take care of and understand a child with Autism and I truly wish that services were more widely available and not such a challenge to receive. It seems that due to the wide spectrum of Autism that it can be hard to “prove” that your child needs help. My dream is that this becomes easier and easier for parents and children. Being a Mom to a special needs child, I know that our lives can be hard enough without this added challenge. I look forward to learning more this month about Autism.


  43. Gianna Tripodi-Bhise Says:

    As a fomer employee of Easter Seals, and now the mother of a 3 year old son with Autism, I am so encouraged to see Easter Seals taking such a leading role in helping children and families living with Autism. It was Easter Seals in Southeastern PA (where I used to work) that couseled us to take our son to a pediatric neurologist once we feared Autism was a possibility. And, after diagnosis, it was Easter Seals here in MO (where I now live) that helped us to find the appropriate services for my son. In the past year, our son has made great strides with ABA therapy. We have mety many other families who have had similar results with this therapy.


  44. Mary Helsel Says:

    IN regards to the comment by John Best, Chelation therapy has not been found effective in all children with Autism. It is also not considered a “cure” but rather a treatment for symptoms.


  45. Marcie Says:

    My son is is severely, multiply disabled. One of his disablites is Autism. Thank you Easter Seals for becoming involved.


  46. John Best Says:

    Jim, I believe Easter Seals has their heart in the right place but there is treatment available now that is curing autism. Chelation is curing children now. For some strange reason, Easter Seals does not seem to accept this.
    Removing the mercury that caused the autism is a child’s best chance of having a normal life.


  47. Warren Johnson Says:

    Jim,

    Your interactive web blog, newsletter, Autism Awarness reminder and personal story is amazing! I have not seen this level of personal interaction by any other non-profit.

    Keep up the good work!!

    Warren D. Johnson


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