Home > Government Relations > President Obama Signs Landmark Combating Autism Act

President Obama Signs Landmark Combating Autism Act

We are thrilled to announce that President Obama has signed legislation renewing the landmark Combating Autism Act for another three years, assuring continued federal support for critical autism research, services and treatment. Autism Speaks Co-founders Suzanne and Bob Wright, and Board Member Billy Mann and his wife Gena with son Jasper, today joined the President at the White House for an official ceremony that sends a message of hope to the millions of families and individuals affected by autism.

The Combating Autism Reauthorization Act (CARA) — sponsored by Rep. Chris Smith (R-NJ) and Rep. Mike Doyle (D-PA) in the House of Representatives and Sen. Robert Menendez (D-NJ) and Sen. Mike Enzi (R-WY) in the Senate — would not have passed without the tireless efforts of advocates throughout the autism community. Across the nation, countless families and individuals united in a single voice and petitioned Washington to pass this vital legislation. Thanks to their efforts, the message was heard loud and clear: CARA passed unanimously in both the House and Senate despite an uncertain fiscal environment.

The new law continues the federal government’s commitment to autism research, services and treatment at current levels, authorizing $693 million over the next three years. The original act provided nearly $945 million over five years. Since its passage in 2006, significant advances have been made in determining potential causes for autism as well as promising new early intervention behavioral treatments. By signing CARA into law, President Obama has ensured the federal government’s commitment to autism so that crucial research can continue unimpeded for the next three years.

Autism Speaks salutes our lawmakers for listening, and responding, to the 1.5 million families across the nation who live with autism every day. To learn more about CARA, visit www.autismvotes.org/cara. To thank President Obama and your member of Congress and Senators for their support, please visit www.autismvotes.org/ThankPresidentObama.

Watch remarks by Autism Speaks Co-founders Suzanne and Bob Wright below.

  1. G. M. Koren
    September 30, 2011 at 3:36 pm

    Who can we get to raise the end of treatment age from 3 years old to maybe 5 years old? I am not willing to place my severely autistic child in school at age 3.

    Thank you.
    G. M. Koren
    Weston, Florida

    • September 30, 2011 at 8:40 pm

      I don’t blame you – I placed my “high-functioning” autistic son in school at 3 to continue services (for 3 weeks before I pulled him out) and almost 2 years later we’re still dealing with the damage inflicted on him by people who had no idea what they were doing and should never have had access to any child, especially autistic. If your gut tells you to keep him home, keep him home. We are also in FL.

      • Cheryl
        October 10, 2011 at 8:05 pm

        I think that’s part of where the problem is … some of you live in Florida. My daughter lived there and my grandson attended schools from kindergarten thru 3rd grade, struggling all the way. They refused to hold him back until the state testing took place, so when she moved out of state to Ohio, she immediately held him back. California is also notably terrible for their schooling of Autistic kids and not wanting to get them to progress. Here in Ohio my Autistic (PDD) granddaughter was in preschool at age 3 and got WONDERFUL HELP. She’s now in 5th grade, partly in Special Ed classes and half her classes with typical kids. She pulls in A’s and B’s, with help in certain areas, of course. She is now high functioning and communicates beautifully and is more typical every day. Very social and becoming a typical preteen. The schooling makes all the difference in the world!!!!

    • October 1, 2011 at 8:10 am

      We had similar concerns with our son (now 13), but we believe there is a time connection with working with therapy and connections in the brain before they have been made. The earlier intervention the better in order to work with your child. Our son was diagnosed as severly autistic at age 2 and we have been blessed with early intervention in the home at age 2, and then school at age 3. By third grade, Cameron was in a regular classroom and then the next year without an aid. As he enters 8th grade, our son (along with his disability service dog, Werin) is doing great.

      • Jennifer Infurnari
        October 7, 2011 at 9:21 pm

        Can I ask you how you did this? Our son was diagnosed at age 3 and given ABA at a great school for only autism children until age 9. Our son has made much progress (thanks to God), but he is far from being in a “regular” classroom. Side note, we have had him on the GFCF diet since age 4. Any advice would be appreciated!
        God Bless.

      • E.J.
        October 10, 2011 at 5:25 am

        My son (now 6), was diagnose at age 4, and could not get right therapy for him. His school don’t want give him ABA at school, and outside therapies don’t want sever him. now he is in the regular classroom with 23 children and with an aid around him for 6 Hrs every day. He does not know any Litter and Number. How I can do for him.
        Please advice,

  2. terry williams
    September 30, 2011 at 3:38 pm

    This is the federal Governments way of “getting out cheap”…Well, at least a little help and responsibility coming from the Government is better than nothing….

    • Sheri friedlander
      October 3, 2011 at 12:41 pm

      How about getting insurance to cover some therapies….my husband and I pay privately for ABA (discrete trial), social skills training and biomedical therapies, all which help my son. We are not eligible for Act 62 because my husband is a small business owner. It’s great that there is more funding for research….but how about some funding to help get our kids better.

      • Norman
        October 7, 2011 at 1:02 am

        Right on about insurance companies: It is know by everyone that early intervention is critical to make any progress if there is hope for it. “an once of prevention is worth a pound for a cure”. Getting these children to function or be “mainstream” is worth it; for them as individuals and for society in $$ to care for them as adults.

      • Alicia M
        October 8, 2011 at 12:00 am

        We are going to have to make our voices louder than those of the insurance lobbyists to complete the process of forcing insurance agencies to cover medically necesary treatment. If parents don’t speak up often and loudly in the states not yet requiring this then it wont happen. If you want insurance coverage in your state You will need to fight for it. I an about to camp out on the capitol steps to get some attention here in MN. There are a lot of people fighting hard but it is frustrating to watch the legislation be defeated year after year.

      • kim smith
        October 8, 2011 at 11:04 am

        I agree with YOU!!!! You are right, our insurance does not cover the therapies, etc.

      • October 8, 2011 at 9:48 pm

        I agree, what’s up with all the research, most of us already know the causes of autism, we need to deal with the recovery of it now more importantly :)

      • Cheryl
        October 10, 2011 at 8:09 pm

        Here’s another shocker. You cannot obtain life insurance for kids with Autism. I don’t know if that might change as the child becomes an adult and don’t understand the reasoning for not allowing life insurance. I was just told this two weeks ago by my insurance agent who, by the way, has a son with Aspbergers, and cannot get life insurance for him.

  3. September 30, 2011 at 3:50 pm

    As the president of my own Autism Foundation…. THANK YOU!!! THANK YOU!! THANK YOU!!!

  4. Fauzia A. Rafique
    September 30, 2011 at 3:58 pm

    We are truly grateful. We are participating in this great endeavour to help humanity as a whole.

    It is a great and noble act on the part of the President__and we deeply appreciate it.

    Thank you once again, to the President ,Founders, and co-founders of this Movement!

    Fauzia A. Rafique

    • Linda Guarnieri
      September 30, 2011 at 11:54 pm

      My daughter has ASD, What help EXACTLY ,directly goes to autistic individuals ?Does ANY of this money go to besides educating general public? I am sick of hearing funraisers and gov money going to Autism speaks !!!!!! When I see NO classes, OR teaching tecniques ,tutors ect… the truth will come out.. WHO IS GETTING RICH OFF THE NAME OF AUTISTIC KIDS LIKE MINE ???!!!!! AND ACTUALLY HELPING WHO?

      • October 2, 2011 at 12:30 am

        Linda I’m with you on this!! We have just spent well over $100 just to get some dvds in hopes to teach our NOW non verbal daughter to communicate… unfortunately I have to SPEAK for my daughter cuz apparently NO ONE ELSE WILL

        What about services that are better for our younger than 3 children?? all we have in oklahoma is “sooner start” which is ok but I know there has to be better treatments for my 15 month old who just recently regressed, loosing all of the words it seems like she JUST gained over the past 3 months… THANK GOD this was passed, yet so much more needs to be done…

      • dave
        October 3, 2011 at 12:42 pm

        could not have said it better! Those who reaally need the help dont get it , while some scum bags get rich off the Title and there non profiit orgs.

      • Norman
        October 7, 2011 at 1:06 am

        Right on the Money (literally)!
        I’d like an accountability report on where the money is spent. Our family has not seen any improvement in services, actually we’ve seen less help for insurance companies. SHOW ME THE MONEY. Where can I submit my receipts for ABA, speech and OT therapies to collect from this fund??!!

      • Johanna
        October 7, 2011 at 6:55 pm

        I Totally agree. Let’s do less research on a “cure” and help people living with autism and their families NOW because we ALL damn sure could use ALL the help we can get and Autism speaks does NOT provide help to local “buget poor” autism associations. Do you know all autism speaks administration get their tax exempt 6 figure salaries. There are 100′s of things I can think of they can help us with and our kids. They are a joke–yes that’s right. I hate autism speaks.

      • Cheryl
        October 10, 2011 at 8:19 pm

        To Shonda: —- The damage may be done, but I would consider holding off or not continuing vaccinations for your child. If she just suddenly stopped progressing, think about when she was given a MMR shot, which is right around that age. My granddaughter had TERRIBLE reactions to her shots, but we were clueless. She seemed to be progressing pretty normally until after the MMR shots, and it’s what I’ve heard from so many parents in the disabled community. After much research we’ve learned there are many vaccinations that can cause lifelong neurological disorders, especially in a family that may have a predisposition to something when there is a catalyst like the chemicals in a shot. Where we live and the amount of pollution and heavy metals is probably another factor. It’s all CUMULATIVE.

        I don’t know what kind of help the Autism Society might give, but you might check to see what resources will help with things to help with speech, etc. Your local school system (with a recommendation from the pediatrician) will pick up the ball and help start schooling your child, and give speech therapy, occupational therapy, etc.

  5. Melodie Gingras
    September 30, 2011 at 4:23 pm

    President Obama is finally listening…so I just want to say thank you from an grandma of an autistic grandson….who I love so very much!

  6. Eva
    September 30, 2011 at 4:45 pm

    This is wonderful news! Congratulations! Wish it could be like this in other countries in the world….

  7. Cathy
    September 30, 2011 at 6:31 pm

    Thank you!!

  8. September 30, 2011 at 7:15 pm

    Hi5! POTUS Obama. The KBJ Cosse’ Family is grateful for CARA funding. Kudos to Congress! Applauses to Autism Speaks & Autism Votes and Autism U, too. Thanks to all the Autism Spectrum Supporters. :-)

  9. September 30, 2011 at 7:28 pm

    I’m very happy about this we need all the help we can get.

  10. karemlee
    September 30, 2011 at 8:48 pm

    We really have to be grateful for the resources for treatment and research we have available in our country and the notable progress that early intervention services can result in our children under the spectrum. Despite who is governing, this is a triumph for our children. There are countries where children with ASD or others even more complex conditions never have the chance to get any treatment.

    • Johanna
      October 7, 2011 at 7:00 pm

      accually, that is INCORRECT. Other countries DO help much more than this country. That is only what our govt. would like you to believe is that the US is the best. Okay well what is there available for our kids? There are many things BUT BUT we families need to pay for them out of pocket. Who can do that? the stress of having a person with ASD is enough then add all the financial burdens and it’s overwelming. Where are the grants that help pay for the tests, holistic dr’s, and natural remedies that families need? not to mention most of us have either NO insurance or under insured. What are you going to do with that $ autism speaks? I think they will be filling their pockets with money that is tax exempt.

  11. Adam Vogel
    September 30, 2011 at 11:22 pm

    It’s good to see them pass CARA. However, we need to provide job opportunities for adults with autism, like myself. I hope Wright family or any of the other few million American families affected by autism, will not have as much difficulty in finding employment in future years. It’s just such a tough job market for anyone, let alone how much tougher it is for people with disabilities.

    • Alicia M
      October 8, 2011 at 12:05 am

      Adam,
      What type of programming would help you with job accesability? I am asking because I am working with representetives of our state government on improving programing for those on the spectrum and this is an issue under discusion. I would love your input.

      Thank you,
      Alicia

  12. Ashika Shrestha
    September 30, 2011 at 11:29 pm

    I hope this act would also minimize the waiting period for the waiver programs and also focus on supporting programs for adults with autism.

  13. Dina
    October 1, 2011 at 1:27 am

    Thank God!! For small miracles.

  14. Shawna Armstrong
    October 1, 2011 at 2:58 am

    Thank You President Obama….. you”re awesome!!!

  15. Katie Wright
    October 1, 2011 at 10:12 am

    Congratulations Mom and Dad!!!!!!
    You did not take no for an answer and walk away because it was hard or uncomfortable. Nothing really good in life comes easily.
    It is a lesson for all in our community.
    Stop worrying about what others think and do what you feel is right.
    Christian would say thank you if he could. But I know he loves you both very much

  16. October 1, 2011 at 10:39 am

    Thank You!!

    Sincerely,
    The Wallace Family<3

  17. October 1, 2011 at 12:13 pm

    With God, all things are possible. I’m prasing Jesus for this law!

  18. taira mcafee
    October 1, 2011 at 4:30 pm

    THANK GOD, FOR THE CHANGES THAT COME TO HELP ALL AMERICANS, I AM A SPECIAL EDUCATION TEACHER AND AN ADVOCATE FOR PARENTS OF CHILDREN WITH AUTISM,I ATTENDED THE 2010 OAR ORGANIZATION FOR AUTISM RESEARCH IN ARLINGTON,VA.AND I THOUGHT THAT WAS TOPS BUT NO PRESIDENT OBAMA SIGNING THIS ACT, IS BIGGER THAT BIG FOR AUTISM THANKS AGAIN TMCAFEE CLARKSVLLE TN.

  19. October 2, 2011 at 9:23 am

    Thank you all for keeping Autism Speaks alive.

  20. October 3, 2011 at 8:40 pm

    i am so glad for this bill to get passed. i asked my representative in florida to have this passed in 2005. as my daughter is 22 now and we could not get proper help for her. there needs to be also more guidelines for people to be teachers for autistic children. as i experienced many difficulties with people understanding her. it was like she was at a preschool but not really being taught. she is non-verbal which makes it very difficult to tell if anything went wrong at times. i want to let all know about A.I.T. we need to try this as it has help many of people through the years to speak. amazing difference from non-verbal to very verbal. been around for years but not been approved by the government. make it part of everyday therapy for all. thank you again!

    • October 8, 2011 at 9:50 pm

      What is A.I.T?

      • Vanessa
        October 9, 2011 at 10:18 pm

        Auditory Integration Training, I read about Berard method

  21. Frances
    October 7, 2011 at 6:43 pm

    Money and research is the answer. Curtis is now 30 years old been dealing with this for 27 years. Hope and early intervention

  22. Kristine
    October 7, 2011 at 7:16 pm

    This may seem odd to some, but I am a parent of a boy blessed with Autism, yes I said Blessed. Why are parents always looking for a cure? Why are they not accepting the child for who they are. They portray to the child and the world that something is “wrong” with them! Accept what God has given you, adjust and adapt and move on. Honestly, if someone gave me a pill today to “cure” my son, I would refuse it. Who am I to change what God has given me? I accept the blessing I was dealt, accept him for who he is unconditionally.If this is changed, it would not be the child I fell in love with…he would be just another so called “normal” person that people would adapt to…lets get real people! These are our children….no money or research is going to change that fact, not in our lifetime!

  23. Kristine
    October 7, 2011 at 7:25 pm

    This does not mean that I would not help make my son as independent as possible. It means I would never “buy” into any government funded research plan as I dont feel it is up to our government to fund our children,nor try to “fix” them. I am not looking for any handouts. I am the one that brought him into this world, for better or worse. I am the sole person to deal with him and everything that that entails. It is not up to our government to handle these issues.

  24. millie porter
    October 7, 2011 at 7:34 pm

    Thank You President Obama, for continueing to fund CARA, for autistic children. I’m a grandma of an autistic child, and would like nothing more than to see my grandson someday, be a part of the main stream, with his disability barely noticeable. However, agree with others, that we need to see the results from Autism Speaks. There are a lot of parents out there still waiting for help.

  25. deedee
    October 7, 2011 at 7:40 pm

    to all of you who have detected autism young and love telling people to do so stfu! not all of these children are the same duh! although we have tried desperately to help our son it is still very difficult for him to communicate. I am just so tired of hearing all these people saying how gooood their children are doing. Do they play with other children with great success? If so they were probably never autistic to begin with! Don’t you realize how bad you make all of these mother’s feel (like they are not doing enough)!!!!!!

  26. debbie
    October 7, 2011 at 7:49 pm

    i wish they would of passed it sooner my son had autism and epilepsy and passed away at 19 years old in school 9 months ago we miss him dearly he was our only child

    • Matthew
      October 10, 2011 at 1:04 am

      Debbie,
      My heart bleeds for you. We all have such difficult lives trying to help our children. Reading your note reminds me to be grateful and not to complain about my circumstances. I will say a prayer for you when I put my head down this evening. I hope that you have family and friends to support you.

      Sincerely,
      Matthew
      New York

  27. October 7, 2011 at 7:59 pm

    Anything and everything we can do for our children is wonderful.
    It would be wonderful to have a WIKI web site where parents can share successful histories. I am sure that will be unvaluable to the whole community.
    Imposible to say THANKS enough to people that care for our children.
    If there is already one, please, let me know. I have a nephew with autism.
    Thanks very much.
    sramirez3@austin.rr.com

  28. SF
    October 7, 2011 at 9:54 pm

    I am on the fence. As a mother of a child who is autistic and who as well has ocd, asthma and allergies plus adhd. I truly believe that it should be required by law to become a teacher to know and understand how to deal with autistic children.

    My little boy could not function in his classroom in kindergarten. I had problems with this teacher all year long. Upon the last day, she informed me that she really was not educated in the area of autism, but sadly admitted she needed more training. In first grade, my little boy was hanging on the bathroom door because the noise of the flushing toilets was too loud. He was sent to the office. Upon one time, this first grade teacher gave my child apple juice in which he was allergic to and it was noted at the nurses station. I could not get the school to help me, I had to go outside for testing and when I finally had those results in my hand, the school refused those testing results. I finally had to remove my child because he could no longer handle being inside a normal classroom and even then I was threatened with having to face courts for removing of my child. I had to hire a private attorney and then bring forth a law suit to the school all so my son could have an IEP in place.

    My little guy has been put through the ringer, I have as well.. It’s crazy that I see no pamphlets concerning autism in the doctors office waiting room, hospitals, libraries, grocery stores, movie theaters,.There is nothing available in the schools. Nothing at the local libraries of the warning signs of autism. I have had to do all the research on my own, find materials, books, therapy sessions, screen for the health insurance.. Everything has been a huge mountain to climb and I don’t recall anyone along the way including the 14 doctors I took my son too that actually did a pre-screening concerning autism. I think this places so much more stress on every single parent who has an autism child. It’s uncalled for.. I don’t know if someone is getting money in the pocket, but when I have been dealing with this for almost 7 years now.. it’s unreal from state to state the lack of support in the autism area vs a new bill or funding where I don’t personally see how this money is being used. How sad for so many new diagnosed children and adults.

  29. Sabrina Fonoimoana
    October 7, 2011 at 10:02 pm

    Thankgoodness, that is good news. You’d truly have to be a parent of one of those amazing autistic kids to understand the gratitude that burns in our hearts. I have 2 boys with autism and feel happy to know that there are great researches and help being offered in this great country! God bless!

  30. Argelia kohnson
    October 8, 2011 at 2:13 am

    Way it is taking so long for people that study this to know that it’s the shots loaded with mercury that is affecting thease kids.the reason that two are more kids of a family is age Ted is because blood line are more suseptsblevto it than others.There I’d no dougt in my mine that this is a fact .but we ate in a society build and drugs and the money it generate,

  31. Liz Godman
    October 8, 2011 at 9:25 am

    I have seen NOTHING from all this money raised, except praise for some couples.
    I have seen no difference and especially in Nevada, the classes and wrong aproach has done more damage. these kids have fits because they cannot communicate. but are treated like retarded children and most are highly functioning. they have no social skills and the teachers so far don’t have a clue how to teach them. my 9 yr old grandson still cannot read or write, but is considered high functioning and very smart and speaks well. He cannot however, explain his anger or distress except by breaking things. and he says “who believes an autistic kid”. the Nv schools don’t have a clue how to teach these children for them to fit into the society. and if they act silly or distruptive, they are arrested and then dropped off at 4 am, iin the middle of nowhere with a mental capacity of an 8 yr old. in the dark. no money, no phone. and he was 23,

  32. October 8, 2011 at 10:23 am

    Within a week we wil be mailing a letter to those that appeared in the ‘Decoding Autism’ video that appeared here in Michigan on PBS, Sept. 19, 2011.

    We think we have found a physical connection to the cause of arthritis. 17,400 shock loads traveling through the baby riding in one of todays stiff suspension vehicles.

    You can read our information in Module 1 (Look for the greem rectangular box) at miketomich.com

    Questions? miketomich@yahoo.com

  33. October 8, 2011 at 10:24 am

    Cause of autism not arthritis. Though we found both…my posting was about autism.

  34. October 8, 2011 at 11:33 am

    Thank you Autism Speaks for being a spokesperson for our kids.

  35. ROBIN
    October 8, 2011 at 3:09 pm

    Linda I’m with you!! So many fund raisers ,gov money to Autism speaks,but the children/young adults ,and their caregivers dont seem to see a cent.. Some states offer PUNS Homebase program ,which is a great idea for parents/care givers that want to care for their loved ones at home and get them services..But the gov has it listed for all families with developmentally disabled children yet you cant get it and you dont move up the list unless there is abuse or homelessness reported then u can move to top of list.. living on 500.00-700.00 a month income still doesnt qualify you…WHAT IS WRONG WITH THIS,WHEN EVERYONE IS SUPPOSE TO QUALIFY. IT IS ALL GOV…. TALK…..

  36. October 8, 2011 at 4:09 pm

    This is really a GREAT thing that has been done; I am a parent of autistic twin girls, and this will help in their future. Thank you Mr. President, and all involved….especially, Autism Speaks.

  37. The Mallory's
    October 8, 2011 at 6:29 pm

    Thanks to the Wright family and all involved in this victory for more awareness and support for our children and adults living with autism. I applaud you and look forward to more progress in the future.

    My brilliant 9yr old is high-functioning autistic…..his school has no clue how to teach him….I teach him at home from materials I purchased from our local teacher store….what a shame….teachers that specialize in autistic students would be a great step toward that progress.

    Thanks, again!

    The Mallory’s

  38. October 8, 2011 at 9:49 pm

    dave :could not have said it better! Those who reaally need the help dont get it , while some scum bags get rich off the Title and there non profiit orgs.

    I agree brother, hang in there and try to do something positive to help :)

  39. Estella ganuza
    October 9, 2011 at 1:44 am

    Thank You, The best news I have ever received!!!

  40. October 9, 2011 at 6:03 am

    hope… the other country. entire the world.. will do the samething… ammiiin

  41. Jewel
    October 11, 2011 at 9:41 am

    My son is now 24 and I really had no help in education or treatment. I took it upon myself to learn everything that I possibly could about autism and I came up with my own methods to teach him. I praise God everyday that my techniques have been somewhat successful and at age 12 he started to speak again. (He spoke up until his second round of the measle vaccine.) It is great to see that everyone is now so concerned about people affected with autism. My quetion is, what do you do now that the child is grown? Everyone is focusing on the younger children not realizing that they will grow up.

    • Liz Godman
      October 11, 2011 at 12:00 pm

      yes, my grandson is 24, has the understanding of an 8 yr old. works at a disabled workshop and folds boxes, makes 3 cents an hour. can’t live alone, was told “wairting list” for group home. is usually calm, but when he can’t explain something he has an outrages.
      pounds on glass of starbucks cause his mom was in there and is yelling, They call police and he is arrested. people in starbucks said he hit his mother, how? thru the glass? he was just being a silly 8 yr old, but in an 23 yr old body. he was arrested. and is on probabtion for 6 months. spent night sitting handcuffed in a chair and then (by chance his mother called to see when she can pick him up ) after we paid 500 bail. and they said at 4 AM in some godforsaken place. if she had not called? no money, lost, crying, at 4 AM, cold, that’s how the autitic and any mentally disabled people are treated in NV. Yeah, what happens when he’s 30 and 35 a etc. we don’t have anywhere he can go.? DOES THE AUTISTM SPEAKS EVEN THINK ABOUT THE ADULT DISABLED? NO, IT’S ABOUT SENDING MILLIONS TO FIND OUT WHY THEY GOT IT, FORGET THE ONES WHO HAVE IT, NOTHING FOR THEN , THEY END UP ON THE STREET WITH A SHOPPING BASKET OR WHERE? BUT DON’T BLAME THE “SHOTS” BECAUSE IT WILL COST THE BIG PHARMA TOO MUCH MONEY TO BE SUED, AND WHAT’ THE POINT? THE DAMAGE IS DONE. PEOPLES LIVES HAVE BEEN RUINED.

  42. Maria
    October 11, 2011 at 4:31 pm

    My husband and I are responsible for taking care of an autistic 6 year old granddaughter. She has been diagnosed with Asperger’s syndrome since she was 3 yrs. old. We bring her for her speech/behavioral therapy every week and she goes to a good school devoted to helping kids with similar needs. My only concern is that I get harassed here at work every time I take off to bring her to her therapy sessions. Can I be protected from this?

    • Sharon
      October 12, 2011 at 2:36 pm

      Check out ADA. It covers caregivers of those with a disability. You should have protection under this law from losing your position, though you may have to take leave without pay…not sure of this…but a place to start.

  43. Geoffrey n Donaldson jr
    October 11, 2011 at 8:51 pm

    I am a brother of a high functioning autistic child. We live in IL and when my older brother who is now 26 living at home. there are group homes out here in IL where they have people designated for driving them taking them to work if they have work and finding work for them if they want to work. The only thing we dont like is that they want control over his finaces (his checking account).We know he dose not need help with his finaces. The way we worked things out in my family with my older brotehr is there are insence 2 set of rules one for him since he cant comprehand everthing teh way a normal person can, and one for me and my little brother since we dont need those kind of rules. When he was younger he was diagnosed with every type of disoreder(ex: ADD, ADHD, Bipoler,ext…..). The way we worked out his tantrums is old school disiplin. If he got out of line my father would pin him untill he calmed down or when my father would need to calm him down the police were called and was told that my parents were abusing my borther but when they got there they asked what was wrong parents told them and said have a nice day. There was so much help that could have been given to him back when he was 14 or 15 but they misdiagnosed him with the other disorders. its nice to see that there is something being done about this issue and as a family we also try when we can and when my nrother is ok with it we voulnteer with the charter in Chicago IL.

  44. October 14, 2011 at 1:17 pm

    Funding for treatment is great. However, these kids do grow up to be teens and adults. I am the founder of the only grassroots autism Foundation in the state of Connecticut called Ryan Woods Autism Foundation. We provide an after-school program that focus on socialization, life skills, building relationships that could last a life time just to name a few. Independence is the key once they turn 10 years and my program was exempt by the Department of Public Health in Connecticut because of the age of children we serve (13 years and above) I completed an application for a grant from the Department of Education that was denied because they had to fund 22 high schools. We need to start to think outside of the box and understand that our educators are there to handle academia and are having a hard enough time doing this. What happens when a 13 year old cannot tie his shoe strings, hold a fork, introduce himself / herself (basic life skills and socialization). We keep them off the street, see that they are fed a nutritional snack or mini-meal; safe from the streets and gangs particularly because of their disabilities. President Obama, USofA — listen — we are 1 in 71 students in CT affected by this disability that is larger than Pediatric Cancer, AIDS and Diabetes. Help programs like mine to stay afloat so that we can mirror them all over the state of Connecticut and all other states. Autism is growing, it is not going away.

  45. October 16, 2011 at 1:40 am

    The CARA Act — i am also the founder of a grass roots organiaation in CT called Freinds of Autistic People . We are now over 10 eas in existence and pioneers ing advocationg services for the gwon child/ acult with atusim. The CARA Act is a great success for one aspect of the autism universe – more omney to do reserach – But CARA lacks in one respect woefully – what was built into this reauthoriataion act to hlel our children in their lives with autism continue learn meaning ful skills after school ends and obuild a life with purpose, work, jocy and dignity.

    What supports have been built in CARA for the adult child to make life more livable , to provide , research interventions,supports, programs that will help them progress towasd a life with indepencdence, safe housing, insurance when we parents are no longer able to help.
    Our daughter who is struggling with nonvverbal autism and way over 21 years old is in danger of being just babysat and even molested day after day as she lives in a state where the residentila or day programs for those work in the filed of Developmental Disatiblity do not require any formal trainign in atuism nor any atusm programs.

    Dear Suzanne & Bob Wright, Thank yoi for h raising awareness and trying to find a cure but please direct some of the millions appropriated by the Govermentmtn or donated by corparate or private donors , even by parents struggling to keep their heads above water, help find a cure for living a life with purpose NOW for the child who has matured into adulthood and whose parents are getting tired and old…..

  46. Rebecca
    December 12, 2011 at 8:12 pm

    My son is going through the testing for autism right now. He’s being genetically tested, and is on the waiting list to go to Ryley Children’s Hospital Autism Center in IN. The schools gave him a diagnosis of developmental delay even though he was on the spectrum. Is this good since the diagnosis falls off his record at kindergarten? or is it bad since the medical community think it is definitely Autism? They said they’d revisit it at age 5. I asked what if the medical community decided for sure on Autism Spectrum disorder? They said they only had to consider it, and did not have to add that diagnosis to his IEP. Is that correct? Also there are some transportation issues over them not wanting to pick him up from his baby sitters house. Are they allowed to refuse transportation in special needs for the Pre-k intervention program with special needs children? They did offer transportation but from my house, when we won’t be there. Anyways my son only has about 25 words as a 3 year old, and has sensory issues as well. Any advice would be great since this is new for my husband and I. Thanks lots.

    • December 20, 2011 at 9:13 pm

      To Rebecca. I had that same problem with the school and transportation as well as the IEP. Yes, they do have to add the diagnosis of Autism if you have documentation that says he is suspected/or has Austism. That is important. You tell the Principle of that school that you want a hearing on this matter now and they probably will just add this instead of going through the hearing. In any case, do not accept no as you have a right to have what ever you feel is important be added to your child’s IEP. The only reason a person might refuse is they do not know the law and/or they do not want to honor what they must do by law if the child is Austictic and it is in his/her IEP. You must be strong and stand up for the rights of your child because the system does not make it easy for us. They make it darn hard to get help! Good luck and God Bless.
      To others who have talked about the adult child, I too, agree more help with the adult with Autism would be quite helpful so we do not have to worry about them and how they will be cared for it something happens to us, the parent, and most times, the caregiver too. I thank everyone for their comments as it has helped me with my thoughts and what I go through with my son who is almost 22 now.

      • Rebecca
        December 25, 2011 at 11:50 pm

        Thank you Bellarose for the response. My son has been referred to a neurologist, and I am pushing for him to be seen by Ryley. Were still on the waiting list for that location. Thanks you much as to the advice about the Autism diagnosis and the schools. Thanks again. ;)

  47. December 20, 2011 at 8:43 pm

    To Rebecca. I had that same problem with the school and transportation as well as the IEP. Yes, they do have to add the diagnosis of Autism if you have documentation that says he is suspected/or has Austism. That is important. You tell the Principle of that school that you want a hearing on this matter now and they probably will just add this instead of going through the hearing. In any case, do not accept no as you have a right to have what ever you feel is important be added to your child’s IEP. The only reason a person might refuse is they do not know the law and/or they do not want to honor what they must do by law if the child is Austictic and it is in his/her IEP. You must be strong and stand up for the rights of your child because the system does not make it easy for us. They make it darn hard to get help! Good luck and God Bless.
    To others who have talked about the adult child, I too, agree more help with the adult with Autism would be quite helpful so we do not have to worry about them and how they will be cared for it something happens to us, the parent, and most times, the caregiver too. I thank everyone for their comments as it has helped me with my thoughts and what I go through with my son who is almost 22 now.

  1. December 14, 2011 at 7:37 pm
  2. December 19, 2011 at 6:16 am
  3. March 5, 2012 at 8:02 pm

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