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‘The Doctors Are In” – 03.01.12

March 1, 2012 Leave a comment

On Thursday March 1, Autism Speaks Head of Medical Research Joe Horrigan, MD, was joined by autism specialist, dentist José Polido, DDS. Here is the transcript.

2:59
We’ll be starting very shortly.Thank you so much for joining us. Joining Dr. Horrigan today will be guest hosts pediatric dentist José Polido, DDS, head of dentistry at Children’s Hospital Los Angeles, one of our Autism Treatment Network (ATN) centers. Dr. Polido helped develop our new ATN tool kit for dental professionals.Dr. Polido is joining our regular co-host, child psychiatrist Joe Horrigan, Autism Speaks assistant vice president, head of medical research. Our Chief Science Officer Geri Dawson is away today. She will be back for our next chat, April 5, along with guest host gastroenterologist and autism specialist Alessio Fasano, M.D., director of the Center for Celiac Research at the University of Maryland School of Medicine.

As always, we’ll be posting the transcript of today’s chat the Autism Speaks science blog here:http://blog.autismspeaks.org/category/science/.
3:01
Hi – this is Dr. Horrigan – thanks for joining us today
3:02
Hi, this is Dr. José Polido, I am a pediatric dentist, assistant professor at Children’s Hospital Los Angeles and USC, glad to be able to join you on this chat.
3:03
Comment From william

good afternoon
3:03
Comment From Winnie Schroeder

Hello
3:05
Advance question from Carolyn:My twin daughters both have asd diagnosis’s , at one of the girls mdt/ iep yesterday the “team” informed me that keeping her verification as Developmental delay would provide her with the best services versus utilizing her Aspergers diagnosis. Is this true? Also in her information they used the terminology ” autistic like behaviors indicating Aspergers.” instead of Aspergers diagnosis as they listed her diagnosis’s of generalized anxiety and phonological disorder, those were not rephrased ” like” anxiety or phonological. My daughter is 6 yrs old. How does early intervention factor in when the school chooses not to ” label” her with autism?
3:08
The doctors are typing furiously. …
3:09
Dear Carolyn: I would ask the Special Ed coodinator why they are averting the use of an autism diagnosis. There are hopefully good reasons for taking the approach that they have recommended. A lot of times the optimal approach , in terms of the actual diagnois used for an IEP, is idiosyncratic to the school system, and sometimes it is to optimize the actual class placement and array of services for the youngster. Either way, they need to provide a sound rationale for the diagnoses they have chosen to institute the IEP
3:10
Comment From Guest

My son is autistic. He is 3 years old. We are working with him on brushing his teeth… but he won’t spit out the tooth paste. Any suggestions? He also has a feeding tube and many GI problems, so we are concerned about him swallowing the tooth paste.
3:13
Hi, thanks for the question. Although fluoridated toothpaste can be particularly helpful in preventing dental caries, it is important to remember that the most important part of oral hygiene is the toothbrushing to remove plaque. You can try using very minimal amounts (smear) or various types of non-fluoridated toothpaste if you think the flavor will help you with brushing, but it is ok to skip the toothpaste altogether if you think it will cause more problems with GI if swallowed. The decision can be made together with your dentist depending on how at risk for getting dental cavities your child is.
3:14
Comment From Tash Gilbert

Is hurting your baby sibling constantly part of Autism or could that be something else? Also only 4 hours a night every night could that be a brain problem?
3:16
Dear Tash: Most likely there is something else going on. It is possible that your youngster with autism is trying to acheive something, such as shaping your own behavior, or trying to communicate (if he/she is nonverbal), through his/her agressive behavior. Either way, it is important to keep your youngest one safe, for sure, and that can be exhausting, I know. Also, there is no question that middle-of-the-night awakening can heighten a child’s irritability and diminish his/her threshold for aggression. This type of insomnia is quite common in autism and it often requires working with a sleep specialist if it is severe (e.g. 4 hours of sleep or less per night). The good news is that there are a range of behavioral approaches that could be helpful and there may also be a role for medicines to help with your child’s sleep continuity
3:19
Comment From Marsha

My grandson is 6 yrs old. Mildly autistic and has PDD, OCD, etc. School is working with us. However insurance is not. They do not believe he needs help. We’ve had him at a stress center, several doctors, etc. They are weaning him off his medicine as they think it is too strong. In the meantime, what are parents suppose to do when they are trying everything and we have to fight insurance companies to get this covered. We live in Indiana
3:21
Dear Marsha: This type of problem with insurance coverage is increasingly common, espcially with marginally adequate insurance policies. Your grandson’s parents should definitely contact HR at their employer to let them kno what is going on, and to ask them to intevene, if need be. Also, the insurance company should have a contact number that the physican can call to contest the insurance company’s decisions, and there is always the possibility of contacting the state insurance commisioner, as well, to make a formal complaint about the insurance company’s failure to provide ‘medically necessary’ coverage. You should always document the name of the individual at the insurace company who you spoke to, as well as the date and time.
3:22
Comment From deborah

my 4 year old autistc grandson will not brush his teeth or let me do it. up til 6 months ago he would allow me to do it. i was unable to take him to his regular dentist as she was on a protracted bed rest with her pregnancy. i took him to another dentist tat had been recommended by a friend and the experience so frightened him that nhe will not allow me to brush his teeth. i am currently using a toothbrushing PEC and sometimes he will allow me to touch his front teeth with a brush but that is all.any suggestions as to how i can get his teeth brushed.he gets flouride drops for his secondary teeth but has not had his last routine fluoride treament due to this experience. any suggestions?
3:25
Hi, many children with autism do not respond well to change in providers or routine. I would work in trying to create a routine at home and attempt to get him back to his old behavior, allowing you to brush his teeth. Meanwhile, consider a discussion with your dentist (when she returns or a colleague) about possible behavior management techniques, desensitization and sedation alternatives so that the procedures go smoother, since he might benefit from more frequent visits if you are not able to provide ideal home care. The Dental Toolkit will help you learn more about sedation alternatives. Also important is to control the diet, avoiding sugary foods or frequent snacks since you are not currently being able to clean the teeth. Patience and perseverance will be very important at this age so that you can get him back into good habits.
3:27
Comment From Mom of Autistic Son

Dr Joe, are we any closer to the cure and how is medical research going?
3:30
Dear Mom of Autistic Son – I wish I knew your name so I could answer your question poperly. I definitely feel like we are getting closer although we are not quite there such that I can use something like the word ‘cure’. We are incredibly busy here, in tems of our medical research efforts, and I am very hopeful. Much of the reserach work that we are either helping to fund, following closely, or initiating ourselves is leveraging the recent advaces in areas such as molecular biology, and genetics, and in some ways the collaborative work that we are doing with closely aligned organizations (such as those working with individuals affected by Fragile X, Angelman, and Rett) are synergizing our efforts, because there is ofetn a clear bridge between syndromic (eg. Fragile X) and non-syndromic developmental disorders (e.g. autism) (in plainer terms, there is a lot of shared biology, and we are definitely using the knowledge gained from this to our advantage, in terms of our current research). I also think tht the second half of 2012 will be partculary importnat in terms of the findings that will be announced in some ongoing clincial trials that will be relevant to you and i and everyone reading this. I will talk more about this in the upcoming months….
3:31
Comment From Ana

My son has aspbergers and I can not get him to brush his teeth cuase it gags him he says. He is 9 and needs to take care of his teeth! what can i do to make him realize just how important it is?
3:31
To work around gagging reflex, you might want to try different toothbrush types (smaller heads, softer bristles) and techniques so that you minimize the toothbrush going too far and causing the more severe gagging. Also, look for the time of day where he might be more relaxed and not very full on his stomach. It is OK to take your time and brush really well once a day without worrying about brushing perfectly after each meal, so long as you are controlling his diet to avoid sugary foods.
3:35
Comment From H Jul

Hello and thank you for this oppertunity. We have a 3 year old boy with autism and we are taking some beginning steps into biomedical treatment with a new doctor.Wanted to know if you have some recomendations or warnings recarding some of the known and common steps in these treatments? Thank you
3:36
Dear H Jul: this is Dr. Horrigan – the most important thing is to ask at each step of the way ‘what is the rationale?’ for the various diagnostic tests that might be recommended, especially if you have to pay out of pocket for them or for some of the customized treatments that might not be covered by insurance. I encourage parents to ask, “can you walk me through the quality of the evidence to support this approach?” and “what is it about my child that makes you think we need to do this test or take this supplement (as an example?” “What about my child’s presentation made you think of doing that, or recommending that?”
3:39
Comment From Valerie

My son is autistic and he is 8 almost 9 years old. He is an extremely picky eater and is very selective about what goes in his mouth. He will look, smell, feel and maybe lick something before he eats/drinks anything. He has gotten better in the past year and brushing his teeth has become less of a chore, he even started using an electric tooth brush yesterday which I think will help with his sensitivity (we struggle with hair cuts). Anyway, do you think that OT and dental care should go hand in hand in these cases? Is there a resource list of special dentists for my area (southern IN)?
3:41
Congratulations on the positive results with the electric toothbrush! We have worked closely with OT and other behavior specialists on oral health topics to maximize the improvement in behavior, including multiple desensitization visits to the dental clinic with the OT present, but most importantly, make sure that they are not utilizing sugary foods (gummy bears, etc) as positive reinforcement, which I have seen a little too often. I would refer you to the American Academy of Pediatric Dentists atwww.aapd.org to find additional resources in your area.
3:42
Comment From lissy

Do 17 year old with Autism and epilepsy need more sleep at night
3:43
Dear Lissy – this is Dr. Horrigan – the short answer is ‘yes’. Most adolescents need a lot more sleep than they normally get, and their sleep debt is often exacerbated by earlt starts on school days. Our schools here where i am now start at 7:40 AM, for example, which can be really challnging for all adolescents and their parents. Also, individuals with epilepsy, if they are still prone to having seizures, are definitely prone to having a diminished threshold to seize (e.g. to have more seizures) when they are fatigued or tired. So the these two things intersect with one another, in terms of risk. I would aim for at least 9 hours of sleep, at the very least, for my adolescent with epilepsy, with or without autism. We will talk more about this in an upcoming office hours, when I have a sleep specialist with me
3:46
Doctors furiously typing …
3:47
Comment From Kris

My son is 15 in 10th grade he is diagnosed with Aspbergers and Autisim.I did not know first that these were two separatediagnosis.He is on an IEP track and his test scores are about 9 years behind his current grade level.He functions at a much higher level though and I am wondering how to challenge the schools test scores and to see if he could get a GED to open up opportunities for himself
3:48
Dear Kris – this is Dr. Horrigan – the two diagnsoes are essentially the same thing. We probably need to talk about the specifics of your son’s IEP, but I would want to make sure that he has a range of approriate accomodations when being tested (e.g. untimed tests, verbal over written answers, testing in a carrel or a quiet place, etc). Generally speaking, most adolescents with Asperger’s, if that is the only valid diagnosis, can definitely get a GED and/or go on to post highschool education, whether it is based at a community college or at a 4-year college or university.
3:49
Comment From william

every time i take my 10 year old Autistic son to the Dentist, it takes 2-3 people to hold him down, while checking his teeth. we have yet to have a xray done to see if their is any inside issues that they cant see cuz he struggles. It was suggested it might be time to sedate him. but i’m not sure it is a good idea for a routine check up. Should i suggest a sedation next time so they can do a full check up without worrying about my son struggleing?
3:50
Dear William, I am going to assume that although your son needs additional personnel to go thorugh his dental visit, it is being done in a safe manner, so in general, I would not recommend heavy sedation or general anesthesia to take routine dental radiographs, unless the examination has showed some concerns that need to be addressed, i.e, dental caries, late eruption of permanent teeth, etc, where you would need to take x-rays and provide care. On the other hand if he is geeting too strong for a good examination, I would consider a full evaluation and treatment under general anesthesia so you can get a baseline and be more aware of any possible problems developing, while continuing to work on desensitization and improving his ability to withstand the routine dental procedures in the office. How often to consider general anesthesia will depend on the initial findings and his behavior on follow-up visits, but usually no more than every 2-3 years.
3:52
Comment From Gretchen

How can I get the ATN ToolKit for Dental Professionals? I think it is something that is needed at my office desperately.
3:53
It’s free for download.
3:54
Comment From Suzie

My son is 14 and mainstreamed and honor roll. However puberty has hit him hard. He likes girls but they don’t seem to like him because they say he is “weird”. How do I help him through this hard time in his life.
3:55
Dear Suzie – this is Dr. Horrigan. I read your question and it made me wonder if there is any professional in your community that has a reputation for doing good work with regard to providing ‘social coaching’ to adolescents- for example, an occupational therapist with an interest in young people with autism spectrum disorders. I also wondered about the avaiability of a mentor program through one of the local universities or colleges – (e.g. a college age male may be able to provide some useful advice and practical strategies to deal with the range of give-and-take converstaions and interactions that occur in any high school setting). I think that some of the Autism U chapters offer that type of mentoring
3:58
Comment From Gretchen

I have a duaghter with ADHD and a daughter with Aspergers and ADHD. I am a dental assistant. I try to help the office staff understand ASD Spectrums, but when a patient who suffers rom one of these issues is in the office, they are very critical and treat the patient like they have leporsy. How, as a professional and as a parent can I help them understand that this is a common disorder and that there will be a lot more patients presenting with these DX in the future? And how can I get them to react differently without causing a major battle. I work in a very cliquish office. i am the newest staff member. It is a military town in an area that is definitely not military friendly…..
3:59
The Dental Toolkit for dental professionals link above might be a way to start. A lot of communication can usually get fair minded professionals to engage in the discussion and find solutions. It might be that the solution will involve finding a good referral source in your community while considering how to best provide prevention guidance and other minor procedures in your own office. Educating them on the condition and how common it is will certainly help. Important to keep focused, objective and very professional in all interactions. That’s the hard work of being an advocate for your children and others with similar conditions.
4:00
Comment From Dee

My son is 7 and is diagnosed with PDD, up to 3 months ago, my son was only sleeping 3-4 hours of sleep at 1 1/2 – 2 hour intervals. Now he sleeps 6-7 hours and only occassionally wakes up 2 -3 times a night for only a few minutes. With his increase of sleep, he has become more hyper, a lot more short tempered and more aggressive. He doesn’t go to his specialist for another 2 months, are there any types of supliments that I can give him other than just trying to tire him out or trying to keep him calm?
4:01
Dear Dee – this is Dr. Horrigan – if I understand correctly what you have written, your son is sleeping for longer periods of time now, but his overall behavior is not as good. There are no over-the-counter supplements that come to mind immediately. Melatonin is usually only helpful with sleep onset, and it is genrally well tolerated. I am wondering if other rasons may account for your son’s behavior, above and beyond his sleep challenges. That said, your son may ultimately be a candidate for an alpha-2 agonist (guanfacine/Intuniv, or clonidien/Kapvay), to help with sleep continuity, but it is best to discuss this with the speciliast – even if you have to do it over the phone between now and when the next appointment is scheduled.
4:02
Apologies that we can’t get to all your questions. The doctors are trying to answer as many as possible.
4:06
Comment From Cora

My 16 year old son is a high functioning autistic, the schools could not challenge him and were not willing to work with him. While in school he was so stressed that they recommended a psychiatrist and meds. He is fine at home no problems just when attending school. So we took him out of school and have been homeschooling now for 2 years. Also while on his meds he gained weight and was sluggish and very mean tempered. He has been off his meds now for 2 years since the homeschooling began. My concern is that his weight has dropped now and he only weighs 105 but he is 5’6 is this normal?
4:06
Dear Cora – this is Dr. Horrigan – you are right in that 105 lbs is low, and I suspect that it might be related to his limited food choices (?) and/or not having great eating habits (similar to all adolescents). A dietician may need to be consulted. Also, you might want to look at supplementing his diet with protein shakes or protein bars (the prices at Walmart are pretty good). It was probably one of the medicines like risperidone or olanzapine that increased his appetite prviously, but if your son is feeling better now, it is best to avoid those
4:08
Comment From Valerie

When doing research how do you go about choosing people whom you use for studies etc? I am a stay at home mom and we are used to traveling is there a way to participate in research and or studies or how does this work ?
4:09
Hi, this is Dr. Polido, I have to sign off now. Thank you for the questions, I hope I was able to help. The most important thing I can leave you with is to encourage good communication with your dentist in regards to the various treatment options available. Early start in prevention and maintaining a healthy routine at home in regards to oral hygiene and diet will usually pay off in the long term. Best regards to all of you!
4:11
Valerie … answer coming from Dr. Joe …
4:11
Dear Valerie: this is Dr. Horrigan – I have to leave in a moment, but we have been talking here at Autism Speaks about better ways to let parents like yoursef know about what opportunties are present at any given moment, in terms of participating in reserach. One of the things that I do a few times a week is to look at www.clinicaltrials.gov, and I enter all of the various terms for autism into the search field, and then i look t the sites that are listed, so that i have a general sense of where the research is occuring, so i know what to say to parenst that live in a specific state or town …
4:11
Here’s a good link. PARTICIPATE IN RESEARCH:http://www.autismspeaks.org/science/participate-in-research
4:13
Dear families – this is Dr. Horrigan – thank you so much for writing in all of your questions. I am sorry that we weren’t able to get to them all today, but we will be back next month, so please attend that if you can find time in your schedules. Thanks again! take good care
4:14
On behalf of all of Autism Speaks. Thanks so much and please forgive us for not being able to get to all your questions. You can also send us questions in advance for the next chat. Our email issciencechat@autismspeaks.org.Please join us again on the first Thursday of next month – April 5th at 3 pm ET/noon PT. Dr. Dawson will be back along with guest host gastroenterologist and autism specialist Alessio Fasano, M.D., director of the Center for Celiac Research at the University of Maryland School of Medicine.
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Chicago’s ‘An Evening with the Stars’ Raises Over $150,000

March 1, 2012 Leave a comment

On Oscar Night, Sunday, February 26, 2012, Autism Speaks hosted An Evening with the Stars, a red carpet spectacular with the glamorous backdrop of the 84th Annual Academy Awards® broadcast, at the Hyatt Regency O’Hare, 9300 Bryn Mawr Avenue in Rosemont, Illinois.

An Evening with the Starsbrought the glitz and glamour of Hollywood to the Windy City, featuring red carpet arrivals, pre-show interviews broadcast live on the big screens and live and silent auctions with prizes ranging from dinner-theater packages to all-expense paid trips to Hollywood and New York City.

Guests were treated to a very special multi-media segment featuring milestones and accomplishments of individuals on the autism spectrum, with musical accompaniment provided by Chicago recording artist Andrew Salgado and Grammy Award winner, Jim Peterik.  Salgado and Peterik, who is best known for his work with the band, Survivor, and Ides of March, have been long-time supporters of Autism Speaks.

Steven Insoft, Autism Speaks’ Chicagoland Chapter board member and chief financial officer of Aviv REiT, served as Executive Producer of this year’s event. Insoft dedicates his involvement to his son, “For me, this is a very personal cause. My involvement is for my son and for my family, as well as for the tens of thousands of other Chicago area adults, children, families and caregivers who struggle with autism.”  Through the generous support of Aviv REIT, the Insoft Family, the Schlaack Family, FirstMerit Bank, Cathedral Rock, Bulley & Andrews, Maplewood Senior Living, the Village of Rosemont and others, the event welcomed more than 300 guests, raising over $150,000 to support Autism Speaks.

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In Their Own Words – Finding Autism Island

March 1, 2012 18 comments
Christine Passey is a wife, mother of two, social worker, and writer. She has been very involved in the autism community since her daughter was diagnosed in 2010. She is currently deeply involved in working to end autism insurance discrimination in Utah. She started her blogwww.thinkingovercoffee.com to work through her thoughts on mothering, autism and advocacy.

Photograph by Heather Sander Photography.

Imagine drifting in a boat, lost at sea.  You have absolutely no idea where you are and the sea is not kind.  There are constant storms and waves.  All the time there is fear.  Where am I?  How did I get here?  How can I find land?  Frequently you think of crazy desperate ideas that might “save you.”  But each time you are disappointed as you find you are paddling in circles.  You are powerless.  All you can do is sit in your boat feeling hopeless, frustrated, alone, confused, and like a failure.
This is how I felt before Skylynn was diagnosed with autism.  I had no idea what was going on, how to help her, and why she was the way she was.  I made desperate attempts time and time again to help her be “normal”.  Maybe this play idea or that strategy might help Skylynn catch up to her peers.  They never worked and I never knew why.  I figured I must be a failure of a mom.  Some days I would give up all together and sit Skylynn in front of Sesame Street and not try at all.  I was so lost, confused and depressed.
Now let us go back to our boat.  One day you see land in the distance.  You think you might be imagining things since you’ve been lost at sea for so long.  But you might as well try and get there, might as well see if it is land.  What do you have to loose right?  Then surprisingly it is land.  It is not the land you imagined.  In fact it looks almost nothing like what you expected.  But, in its own different way it is absolutely beautiful.  It is a difficult land.  Much more difficult then you ever thought it would be.  But it is still land.  You can set up camp and work at making a life for yourself.  A different life then you planned.  One that requires a lot more work then you ever thought possible.  But, it is a good land and you can create a good life on it.
This is how I felt when Skylynn was diagnosed with autism.  I had finally found land.  I had a place to stand, a place to start a life.  I finally understood what was going on.  I was relieved to find out that I was not the horrible broken mom I thought I was.  There were reasons all my desperate attempts to help my daughter become “normal” always failed.  They failed because my daughter wasn’t meant to be normal.  She was meant to be Skylynn; sweet, silly, beautiful, mischievous, unique, Skylynn.
It has been a long time since I was lost at sea.  I have had time to explore the devastating pit falls in this land, and I have felt the loneliness, despair, pain, and rejection that lie in them.  But I have also climbed to the amazing mountaintops of this land.  These highs are indescribably.  The joy, love, excitement, triumph, pride and bliss of these peaks can never truly be explained to someone who has not climbed them.  It is true that my land is very different from most of my friends’ lands.  But I would not change it for the world.  My land has taught me to love every small beautiful moment and to be patient through every difficult one.  It has taught me what true love is and who true friends are.  It has taught me I am stronger than I ever thought possible.  But most of all it has taught me that Skylynn was never lost.  Only I was.  It is a beautiful thing to live on the island of autism with her.  I love you my beautiful daughter.  Thank you for this place and giving me the chance to live on it with you.
*Interesting note.  I wrote over half of this within a few months of Skylynn’s diagnosis.  I couldn’t finish it because I was just beginning to explore “Autism Island”.  It has been really interested to go back and finish it now.  It is my true perspective at two very different times during this process.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
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Autism in the News – 03.01.12

March 1, 2012 Leave a comment

SPOTLIGHT: Teachers of autistic students use iPads (Glen Gllyn, Ill.)
Teachers of students with autism say it’s the year of the iPad. It provides motivation. It helps with therapy and handwriting practice. It even models appropriate ways to share toys or take turns. Read more.

Autism, clean stream projects win fair (Muskogee Phoenix)
Winning exhibits at the Muskogee Regional Science & Engineering Fair could help people with autism communicate and help clean area streams. Read more. 

Autism Associates Comes to the Area (Perkiomen Valley)
Debbie Greenwald, Autism Specialist, Board Certified associate Behavior Analyst, Relationship Development Intervention (RDI) Certified Consultant, is the founder of Autism Associates - a program that provides services for families affected by autism and other neurological disorders. Read more.

Autism Speaks prepares for walk, 5K Sunday in West Palm Beach (Palm Beach Daily News)
Being connected has its benefits. When their then-2-year-old grandson Christian was diagnosed with autism in 2004, Bob and Suzanne Wright of Palm Beach and New York let their fingers do the walking. The developmental disease took their grandson’s ability to talk. Read more.

Autism coverage bill clears House (The Salt Lake Tribune)
A bill that would qualify hundreds of young children with autism for Medicaid coverage during a two-year pilot program passed easily through the House Wednesday on its way to the Senate. Read more. 

Autism Speaks’ daily blog “Autism in the News” is a mix of top news stories of the day. Autism Speaks does not vet the stories and the views contained therein do not necessarily reflect Autism Speaks beliefs or point of view.

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When an Autism Diagnosis Brings Relief

February 29, 2012 13 comments

Vincent Randazzo’s son Michael was diagnosed with Down syndrome early in life, leading Vincent to become actively involved with the National Down Syndrome Society (NDSS). Autism Speaks and NDSS are now partnering in their support before Congress for the Achieving a Better Life Experience (ABLE) Act which would allow families raising children with disabilities, such as autism or Down syndrome, to save tax-free for their future needs.

Vincent Randazzo explains how his family’s connection with autism runs even deeper.

When my son Michael was born with Down syndrome 13 years ago, my wife Dorothy and I were upset and sad for Michael that he would not experience a normal life. Because of our circumstances, however, we did not experience the sense of terror that so many parents face when they get the news that their newborn has a developmental disability.

Michael has a brother and a sister who would love him and care for him like any other sibling.  At the time, my wife was a public health nurse in the public school system and an advocate for students with special needs.  We quickly became aware that medical research had advanced to the point where people with Down syndrome were living much longer and more fulfilling lives, and the future held exponentially greater promise.

I immediately engaged in Down syndrome advocacy, supporting the priorities of the National Down Syndrome Society and serving on the boards of a local parent support group and a national research foundation.  But within a few years, everything we thought we knew about Michael’s condition, and how to give him the best chance at living an independent life, was turned upside down.

Around age four, we started to notice that Michael’s developmental progress had stopped and, in many ways, he was regressing.  He became less talkative, developed verbal tics, and made eye contact less often.  He would obsess about movie videos, ceiling fans, and where we placed his food on the plate.  We would attend social gatherings hosted by the local Down syndrome support organization, and notice that he was socially different than most of the other children.  He didn’t play or interact with his peers the way a typical child with Down syndrome did.

During family vacations or visits with friends and relatives, Michael would be irritable and disruptive.  He would be violent toward other children, grabbing their necks, hitting them in the face or pushing them to the ground.  We were always being told that people with Down syndrome were so lovable and good-natured.  Why wasn’t that the case with our son?

Around age 5, we started raising concerns about Michael’s developmental issues with his pediatrician and pediatric neurologist, and told that people with Down syndrome have varying degrees of the disability.  During one medical visit, we were told “so what if he had autism, what difference would it make?”  One neurologist actually treated him for Attention Deficit Hyperactivity Disorder.

At about age 8, we brought up our suspicions about autism withMichael’s teachers and, to our surprise, they acknowledged the possibility.  We were referred to TEACCH, a group at the University of North Carolina Medical School in Chapel Hill which works with individuals with autism spectrum disorders and their families by providing clinical services, training teachers and care providers, and conducting psychological, educational, and biomedical research.

The initial screening determined that Michael met the criteria to be tested, and we were put on an 18-month wait list to be evaluated for autism. He was finally tested around age 10. The conclusion was that Michael had moderate autism, and that autism – not Down syndrome – was his primary disability.

We were advised to change the way we think about Michael’s disability and how to plan for him medically, socially and educationally.  After having been encouraged to put Michael in inclusive educational, social and family situations where he was continuously failing, we now know that a self-contained environment was best.  The medicines he took and the way his medical providers approached his care significantly changed.  With the dual diagnosis, he became eligible for supportive services from the State, and his school IEP was revised to emphasize more life skills and social goals.

The dual diagnosis and subsequent changes in the way we approach Michael’s disability have not alleviated his life challenges.  In fact, as he has grown older, those challenges have only increased.  But the diagnosis has provided relief to our family because we now understand him better.  We know that transitions are hard and social situations are so difficult for him, so we know how to plan for them.  And I am no longer constantly frustrated and angry with his inability to do simple tasks.

Having more realistic expectations about his progress and goals in life has actually led me to dream about someday starting a business together when Michael finishes school and I retire.

Categories: Government Relations Tags: , , , , , , ,

Autism in the News – 02.29.12

February 29, 2012 Leave a comment

Teacher allegedly ordered boy with autism into cardboard box (Wildomar, Calif.)
A Riverside county teacher has been removed from her classroom after a mother complained to the school district about her child being ordered to go into a cardboard box. Read more.

Gluten-free, casein-free diet may help some children with autism (Medical Xpress)
A gluten-free, casein-free diet may lead to improvements in behavior and physiological symptoms in some children diagnosed with an autism spectrum disorder (ASD), according to researchers at Penn State. The research is the first to use survey data from parents to document the effectiveness of a gluten-free, casein-free diet on children with ASD. Read more. 

Autism support group to reactivate in southern Ocean County (Little Egg Harbor, N.J.)
Families for Autistic Children Education & Support, a nonprofit organization dedicated to education and support of children with autism and their families, will reactivate Sunday in a new location in southern Ocean County. Read more. 

Autism’s angel (The Quinnipiac Chronicle)
When Shannon Fitzmaurice left to study abroad in Rome, she tearfully said goodbye to her parents, and younger brother and sister, Brendan and Meghan. After excitedly counting down the days during winter break of her sophomore year at Quinnipiac, Fitzmaurice realized she would be without her siblings, also two of her best friends, for several months. Read more. 

Special-ed changes upset Riverside parent (The Now)
One Port Coquitlam mom is looking for answers about why her daughter has had nine different special education assistants (SEAs) this school year. Read more.

Autism Speaks’ daily blog “Autism in the News” is a mix of top news stories of the day. Autism Speaks does not vet the stories and the views contained therein do not necessarily reflect Autism Speaks beliefs or point of view.

Categories: Autism in the News Tags: ,

‘The Doctors Are In’ Live Chat

February 29, 2012 1 comment

Please join us Thursday at 3 pm ET/noon PT for this month’s “The Doctors Are In” live webchat. Our featured guest will be pediatric dentist José Polido, D.D.S., head of dentistry at Children’s Hospital Los Angeles, one of our Autism Treatment Network centers.

Dr. Polido was instrumental in developing the newly released ATN tool kit for dental professionals. He welcomes your questions about dental issues including dental hygiene and visits to the dentist.

The live webchat will be hosted by Autism Speaks Head of Medical Research Joe Horrigan, M.D.

We hope you’ll join us!

What: “The Doctors Are In” webchat, with Drs. Horrigan and Polido
When: March 1 at 3 pm Eastern; 2 pm Central; 1 pm Mountain; noon Pacific
Where: Join via the Live Chat tab on left side of the Autism Speaks Facebook page

Categories: Science, Uncategorized Tags: , , , , , , ,

Autism in the News – 02.28.12

February 28, 2012 1 comment

Autism detected later in minority children: Study (CBS News)
Autism should be diagnosed as early as possible, but minority children tend to be diagnosed later than white children. New research is beginning to try to uncover why – and to raise awareness of the warning signs so more parents know they can seek help even for a toddler. Read more. 

Responding to Autism in an Emergency (Tolland Patch)
Family Autism Center program consultant and EMT Jason Dorval addressed a crucial emergency need at Tolland High School on Monday night: how first responders can most safely and effectively help citizens who have an autism spectrum disorder. Read more.

Teacher placed on leave in flap over autistic boy’s treatment (Los Angeles Times)
When Kim Rollins’ son asked for a pair of scissors to take to school a few weeks ago, she was heartened that the fourth-grader, diagnosed with an autism-related disorder, was excited by a class project. Read more.

Training Parents is Good Medicine for Children With Autism Behavior Problems (South Africa)
Children with autism spectrum disorders who also have serious behavioral problems responded better to medication combined with training for their parents than to treatment with medication alone, Yale researchers and their colleagues report in the February issue of Journal of the American Academy of Child & Adolescent Psychiatry. Read more. 

Parent: Worcester teacher training on autistic kids falls short (Ocean City, Md.)
The Meyers family recently put their house in Berlin on the market and are readying for a move to the Baltimore area. Read more.

Autism Speaks’ daily blog “Autism in the News” is a mix of top news stories of the day. Autism Speaks does not vet the stories and the views contained therein do not necessarily reflect Autism Speaks beliefs or point of view.

Categories: Autism in the News Tags: ,

Transcript for “My Child Has Autism: How Do I Get Insurance?” Webchat

February 28, 2012 1 comment

On Monday February 27th the Government Relations team hosted their first webchat, “My Child Has Autism: How Do I Get Insurance?” The webchat was hosted by Lorri Unumb, Esq., Vice President for State Government Affairs.

7:55
Comment From Guest

Thank you for being an advocate for our babies by the way!!
7:56
Your welcome! Please visit Autism Votes to find out more about our advocacy efforts! http://www.autismvotes.org
7:56
Comment From Fawn

Thank you for allowing this opportunity
7:56
Of course! This is our first chat and we are so excited!
8:02
Hi — It’s Lorri Unumb. I’m so glad to have all of you on the webchat tonight. I hope I can answer some of your questions in this very frustrating world of insurance coverage for autism! In addition to working for Autism Speaks, I’m also a mom of 3 boys, and my oldest son, Ryan, is on the severe end of the spectrum. He’s 10, so I have been dealing with insurance (or lack thereof) for several years.
I don’t want to waste any time, so let’s get started! Please forgive typos; I’m typing as fast as I can so I can respond to lots of comments!
8:04
Comment From Allison

I keep trying to post my question but it wont send….Confused…Or does it send to you and then you post it?
8:04
Hi Allison! We have so many questions coming in – we need to accept them! Hang tight!
8:04
Comment From nancy

Am I at the right place for the talk?
8:04
Yep! You are at the right spot!
8:04
Comment From Guest

Hi! Its 8 – can we jump in?
8:05
yes! Ask Away! we already have received a ton of questions and are doing our best to answer them all!
8:06
Comment From Ralph

Is there any specific information for Washington State?
8:06
Hi Ralph! Check out our Washing State page on Autism Votes!http://www.autismvotes.org/site/c.frKNI3PCImE/b.4432369/k.25AF/Washington.htm
8:06
Comment From Beth

Hi Lorri, My son and I live in Michigan.
8:06
Hi Beth–We expect important legislation in Michigan to start moving this week in Lansing. Keep posted atwww.autismvotes.org/Michigan
8:06
Comment From Guest

Hi we live in houston texas and we have self funded insurance through my husbands work. We have pleaded with them to cover autism but nothing developmental or psychological is covered. We make too much money for medicaid and chips. Is there any help we can get? We cant afford ABA therapy or much therapy at all with a family of 5. We started ABA and put it on credit cards and saw so much progress with my son. We had to stop when we ran out of money. I have tried to replicate but he is not doing nearly as well. HELP! PLEASE
8:06
Hi Houston, Texas — As you know, self-funded plans are not subject to state law, so even though Texas has passed an autism insurance mandate, it is of no help to you. How big is the company your husband works for, and what type of company? We have had lots of luck convincing many self-funded companies to voluntarily cover ABA, even though they don’t have to per state law. Have you used the self-funded PowerPoint available onwww.autismvotes.org? If you want to arrange a meeting with your HR director, I’d be glad to speak or meet with them.
8:09
Comment From Fawn

What about Wichita, Kansas?
8:10
Fawn–Kansas now only requires coverage for state employees. Important bills have been introduced in the Kansas legislature to expand that coverage to more families. Learn more atwww.autismvotes.org/Kansas
8:10
Hi Sandra — What state is your insurance written in? If it is written in a mandate state (the “green” states onwww.autismvotes.org), and if you have a policy that is subject to state law, then you might be able to get coverage. It depends on whether the camp has providers/counselors with appropriate credentials and if they are willing to bill their services in a way that insurance companies are accustomed to covering. Generally, you have to fight for any coverage that is not run-of-the-mill, but if you’re willing to fight a little and can get appropriately credentialied providers to use appropriate CPT codes following a doctor’s recommendation for social skills training, then coverage is possible.
Sorry for all of the if’s — but that’s how insurance works!! :-)
8:11
Comment From Sandra

Does Health insurance cover camps that teach social skills for children with aspergers
8:13
Comment From clara

my son has medicaid,can my husband add him on his insurance cigna? can he have 2 diffrent insurances in nyc? thank you
8:13
Clara — Your child can have both private insurance and Medicaid. If your child does have both coverages, then Medicaid will become the “payor of last resort,” meaning that you or your provider has to bill insurance first, and then Medicaid pays second.
8:16
Comment From Guest

Do you know if any policies in the state of Ohio will cover A.B.A. despite the legislation not passing?
8:16
Dear Guest from Ohio — Yes, there are some self-funded companies in Ohio that offer coverage for ABA. Two that immediately come to mind are White Castle and Ohio State University. And I think Nationwide Children’s. Beyond these self-funded employers and other like them, there generally is not insurance coverage for ABA through private health insurance in Ohio yet. It’s one of the states where we have not passed an autism insurance bill yet. But . . . we are working really hard this year. I had a meeting with some Ohio legislators in Columbus last week, and I’m meeting with the Governor’s office next Tuesday. So please help out and don’t give up hope! In the meantime, you might investigate Medicaid coverage or, if changing jobs is an option, employment with a company that does cover autism. Sorry the news is not better just yet!
8:18
Comment From Fawn

My daughter has been diagnosed with PDD/NOS. How do I find out if insurance will cover therapies
8:18
Fawn — PDD is a covered diagnosis under health insurance IF your policy is written in a state where an autism insurance bill has passed. Look for the green states on the map atwww.autismvotes.org.
8:22
For information on self-insurance plans, visit:www.autismvotes.org/Self-insured companies and autism coverage
8:22
Comment From Mary

In SC – what are your tips to battle the self insured loop hole for employers
8:22
Hi Mary — For a self-funded company, contact the HR director and ask for a meeting. Send them my “Self-Funded Plans: Establishing an Autism Benefit” PowerPoint; a link is being posted here now. If you can get a phone conference or an in-person meeting and would like for me or someone for the Autism Speaks Government Relations team to go with you, let us know! We’re more than happy to do the heavy lifting. I also have sample letters. Write to me at advocacy@autismvotes.org if you want a copy. Good luck!
8:25
Comment From Neil

also has the law passed in NY and when does it go into effect
8:25
Neil in NY: Yes, Neil, Governor Cuomo signed the bill into law last Nov. 1. It takes effect this November 1. To learn more, visit:www.autismvotes.org/New York
8:25
Comment From Dianne Coscia, MD

Hello Lorri, I am a developmental pediatrician in Boston who is needs to better understand for my patients where the line is drawn for schools with providing ABA and where insurance picks up. Can you help advise?
8:25
Hi Dianne, and thanks for your question. I think the easiest way to think of the “line” is to consider insurance the payor when ABA is provided in a home or clinical setting by non-school personnel. It’s a little tricky in states like Massachusetts where there has been decent ABA provided through the schools (unlke most of the rest of the US). Write me offline if you want to explore further particular situations. Thanks!
8:26
Comment From Maria

Good evening. Not sure if you can answer my question. I do have private insurance, good one and I do have a Medicaid for my child. My private insurance saying that if I have a Medicaid I should close my private insurance. Is that true?
8:27
Maria — I guess it depends on where you live. It’s possible that Medicaid offers better autism coverage in your state than insurance does, but that seems unlikely. My personal suggestion would be to hold on to your insurance, too.
8:27
Comment From Guest

Hi Lorri, Francine Hogan here, I have a question. I applied for insurance and they would only accept us for a high deductible policy based on my son”s autism. What can I do?
8:28
Hi Francine — Is your insurance policy written in a state that has an autism insurance mandate? If so, then you should not be discriminated against based on your son’s diagnosis. If you’re in a mandate (“green”) state, then complain to your state Department of Insurance.
8:30
Comment From Derrick Howle

How will the new Health care law impact the state mandates that have already passed and what coverage can we expect in 2014?
8:30
Derrick: Very important question. The U.S. Department of Health and Human Services is now implementing the law and our champions in Congress are working to assure that behavioral health treatment is included within the essential health benefits package each state is required to offer. To learn more, visit:www.autismvotes.org/FederalHealthCareReform
8:30
Comment From Guest

I’m in Kansas, and Humana doesn’t seem to cover squat…
8:31
Comment From Tracey

Hi there! The company that my husband works at is self insured. They agreed to pay 80% of the cost of ABA therapy for my 2 year old twin sons. After 2 months of attending this ABA school, the insurance company denied our claims stating that the DX code paired with the PCT code given by the school doesn’t warrant coverage. When I ask what code they need for us to get coverage they won’t tell me. It’s a nightmare.
8:31
Hi Tracey — I have heard of this before — the insurers tell you the code isn’t the right one, but they won’t tell you what the right one is!! Argh! Have you talked to your provider to determine if there’s another code they can use? Your provider might wish to get guidance from the Assocation for Professional Behavior Analysts, which helps ABA providers understand billing and coding better. Do your sons have 299.0 diagnosis codes? If so, you may wish to complain to the U.S. Department of Labor, which oversees self-funded plans.
Hope this helps a litte!
8:32
Is your insurance through the State Employees Health Plan (SEHP) or other? If through SEHP it should be covered. If not, we are working on it! Please visit and sign up to receive Action Alerts.
8:34
Comment From Kendra

How do you get Ins to pay for autism services/therapies?
8:34
Kendra — First you have to determine if your insurance policy is written in a state that has an autism insurance mandate — the green states on autismvotes.org. If your policy is written in one of these states, then you need to determine if it is a fully-funded policy. Fully-funded policies are the only ones subject to state law. Some states have exceptions for small employers, so check the FAQs for your state on autismvotes.org. If you have a policy that is subject to state law, then you should find a provider that accepts insurance and ask them for assistance with billing insurance. Let us know if you have problems, and good luck!
8:34
Kansas Guest – please visithttp://www.autismvotes.org/site/c.frKNI3PCImE/b.4425759/k.B84C/Kansas.htmfor more information
8:36
Comment From Jill

Hi. I am in CT with a self-funded policy, which of course, opted out of the CT mandate to cover therapies for autism. Any tips to getting coverage for ABA when the policy doesn’t cover it? We are already working with the employer, but it is a municipality, so any changes in coverage are subject to collective bargaining (always a difficult process).
8:36
Jill — On a few occasions, I have seen self-funded employers cover ABA for a single employee while going through the process of determining whether to add the benefit to their policy generally. It is worth asking for!! And as I said to the others on this webchat with self-funded policies, please ask us for help if you want our help negotiating with your employer. Contact us atadvocacy@autismvotes.org.
8:36
Comment From Neil

Hi, can you give me the basics of the new law in NY and will my insurance company pick up some or all of the cost for summer camp or would I be able to get reimbursed
8:37
Neil – please visit www.autismvotes.org/newyork
8:38
Comment From Juan

Hello Lori! We are having a hard time in the state of Georgia to get insurance coverage, we have BCBS of Georgia and that only gives 30 hours of OT an speech therapy a Month. That is not enough as you know, no ABA Therapy is covered. Any ideas? We have started thinking of move out of state to another place state with coverage. Any suggestions?
8:38
Hi Juan — I’m sorry you’re in Georgia!!! We came very close to passing an autism insurance law there a few years ago, but didn’t. ;-( We’re working on a bill for next year, so don’t give up hope. In the meantime, you might wish to consider a move, frankly. It’s pathetic that I’m even recommending that, but we’ve have a lot of families move to South Carolina in the last 5 years just to get coverage for their kids. Alternatively, you could try to get a job with a self-funded company that offers autism benefits, like Home Depot, Time Warner, Microsoft, to name a few. There are more and more companies every week voluntarily adding autism coverage in response to requests from employees.
8:40
Comment From tracey

question from CT – I requested a neuro psych for my son who was diagnosed PDD NOS at age 3 – he is now 11 and going into middle school if the school does not agree to testing will insurance cover?
8:40
Tracey from CT — Insurance should cover medically necessary testing for your son. If you are pursuing testing purely for educational reasons, you may have difficulty. I recommend that you try to get pre-authorization for the insurance benefits. And if you have problems, complain to your state Department of Insurance.
8:42
Comment From Guest

Blue Cross Blue Shield of MO and IL said they cover ABA therapy at an office, but not at my home, is there no other way around this? We have been paying for at-home ABA for a few months now. Is there a home-health code we can use?
8:42
Dear BCBS of MO and IL — The location of service should not be a basis for denial of coverage. Contact Angela Nelson at the Missouri Department of Financial Institutions and Professional Registration. (I think I got the name right; it’s Missouri’s version of a Departmnet of Insurance.) Angela is a terrific consumer advocate and very familiar with the autism insurance law there.
8:42
Comment From siovhan

WHAT can we expect fromt he RED STATES
8:42
Siovhan:
What we hope for from the red states are strong autism insurance reform laws. The red designates states where Autism Speaks has endorsed their legislation as strong bills. We work closely with local advocacy groups to help them become law.
8:44
Comment From Julie

I’m in Illinois and am looking for additional insight into what coverage I can get from my employer. Self funded, and this industry lingo is confusing!
8:44
Comment From Shelle

My son is 10. He has Aspergers with sensory integretion issues. His insurance paid for an eval for therapy, but refuse to pay for the actual therapy. We live in Michigan and I am at a loss as to what other steps to take.
8:44
Hi Shelle — I wish I could give you better news, but Michigan is one of the 21 states that do not yet have autism insurance laws. The best thing I can advise right now is show up for the hearing in Lansing this Thursday at 1:00! Or at least write your legislators to tell them how much you need this coverage. I promise that every single letter does make a difference, and we are really on the verge of getting this law passed in Michigan!!!
8:47
Hi Julie. You are right – it is very confusing. Please take a look at http://www.kff.org/insurance/upload/7766.pdf. Page 3 explains what “self funded” insurance means. For details on how you can convince your employer to add coverage, check outhttp://www.autismvotes.org/site/c.frKNI3PCImE/b.5216011/k.1245/Selfinsured_Companies_and_Autism_Coverage.htmIf you would like someone from the Autism Speaks Government Affairs team to accompany you please contact us atadvocacy@autismvotes.org
8:47
Comment From Dianne

Can you post additional resources or links that we can refer to once this chat concludes? State specific (writing from MA)
8:47
Diane and to our many other friends:
Yes, we have been collecting all of your questions and comments. We will try to follow up on as many of them as possible. Watch www.autismvotes.org in the days ahead.
8:48
Comment From Jen

I am in Mass where we just passed the ARICA law. We are having trouble finding 3rd party billers qualified to oversee in-home therapy. Our insurance company (united) says they will provide up to 8 hours per day…but because they are Sierra health, my x lives in vegas, then they say they will only obey Nevada law, not Mass. yeah…is that true?? I think it sounds illegal. And, can’t we find our own 3rd party to contract with them, since none of their providers are taking patients or in our area???
8:48
Hi Jen from Mass — Different states respond differently to residents who have insurance in another state. Some states insist that insurers follow the law where the patient lives; others do not. At any rate, even if your insurer is in Nevada and following Nevada law (where there is an autism mandate), they still have to provide you access to a provider in Mass! Tell your child’s provider to work out a one-time contract with the insurance company in Nevada. Insurers do that all the time to serve one patient in another state. Good luck!
8:51
Comment From Heather

Our doctor has recommended ABA therapy for our 2 year old. Our insurance has denied coverage. We have submitted an appeal. The insurance is Empire BCBS of New York. We heard that New York passed a law to require insurance carriers to provide ABA Therapy. But that doesn’t take into affect until November of this year. What can we do if they deny us again?
8:51
Heather from NY — What was the basis for the denial? I would keep appealing and perhaps let the NY Dept of Insurance know about this. But you may be out of luck for services that took place prior to the new autism insurance law in NY. It stinks, but that’s the sad truth. And it’s why we’re working so hard to pass these laws in all 50 states as fast as we can! (But please do go back and find out what was the basis for the denial; make sure it wasnt a coding error or somethign stupid like that.) Also, do you have coverage through your state’s early intervention program untill your child turns 3?
8:52
Comment From Guest

Medicaid and private insurance- can a child with autism have both of them? Thank you
8:52
Comment From Norah

Do you have a sample letter in how to write to our legislator? we live in Geogia
8:52
Norah:As we gear up our state advocacy campaigns, we provide you with emails that can be sent to specific legislators at specific points through the legislative process. This occurs once bills are introduced, are endorsed by Autism Speaks and then work their way through the legislative process. As the legislation in Georgia evolves, stay posted to www.autismvotes.org/Georgia for guidance.
8:53
If your child qualifies for Medicaid on the basis of his disability rather than his income (or lack thereof), then your child can have Medicaid and private health insurance. Qualification on the basis of disability is permitted in most but not all states; it’s usually called TEFRA or the Katie Beckett waiver.
8:53
Comment From Laura

I am in Charlotte and I believe NC is one of the states not behind the autism leg, what would you do?
8:55
Laura — Please contact your legislators and tell them NC needs the autism insurance bill to pass this year! I have met with your Speaker of the House twice in recent months and gotten good traction, so I’m optimistic we will see legislation there soon (but not soon enough for children who need coverage now!) I will be in Winston-Salem this Friday to meet with more legislators on this issue. Come join me! Or at least write your legislators. Thanks!
8:55
Comment From Larisa

and another question – our son was able to take part in a summer program at the VA Institute for Autism – mainly personal and social skills development….would there have been any course of action that could have gotten this paid for by insurance??
8:56
Larisa — It is possible. I’m not sure if VIA is there yet, but insurance coverage may be possible there. Check with Ethan Long; he is up on all this stuff. Good luck!
8:56
Comment From Mirella

I had a question from a mom in Florida who’s son is on his father’s insurance policy out of Utah. It is a state regulated plan. The son lives with his mom in Florida. The father lives in Utah. How do they find out which state laws apply to their son’s coverage.
8:57
Mirella — Write to us offline; I have a chart that shows which states apply their own laws versus other state’s laws to their residents. L. :-)
8:57
Comment From janet

I live in NY single mom of three children with autism ages 4, 5, 6…..ABA work very well for them yet insurance company refuse to cover services that are needed…….WHY! WHY! WHY! help please
8:57
Comment From Guest

In Alabama, I know they are fighting for a bill. However, nothing
8:58
Janet — The NY autism insurance law that passed last year goes into effect later this year. You should see some relief then!!! It’s why we work so hard to pass these laws. Good luck!!!
8:58
Comment From Jennifer

I’m in TN and advocates here don’t seem interested in pushing for state mandated insurance coverage for ABA. They had tried in 2009 but have not done anything since. Now, even with other states moving toward mandated coverage, advocates in TN are telling us we should now wait for Health and Human Services to determine what will be “essential care” under the new health care reform. Do you have any news on federal mandates for us, or could you please help me figure out how to get started in my state?
8:58
Hi Alabama folks! Please join the effort atwww.autismvotes.org/alabama
8:58
Jennifer — Please write to us at advocacy@autismvotes.org. We would love to help in Tennessee.
8:59
Comment From Juan

Hello Lori! What is considered a self funded company?
8:59
Juan — A self-funded a company pools their own money together to pay claims rather than contracting the risk to an insurance company. The only way to know whether your insurance is self-funded is to ask the HR department at your employer.
9:04
Hi Everyone — Well, it’s after 9:00, and we got flooded with questions! I’m sorry that we could not answer more. I typed as fast as my fingers would let me! We will try to follow up on some of these excellent questions on our website –www.autismvotes.org. Please check there in coming days. And given the barrage of questions, I’m sure we’ll be doing another webchat soon. Also please sign up at www.autismvotes.org to stay on top of the latest developments. We post information on state autism insurance reform efforts there, and we post resources for families who have self-funded plans.
Thank you all for participating tonight, and good luck!
Lorri Unumb :-)
9:04
Comment From Guest

Thanks Lorrie for all you do and thanks to your family for supporting you while you are gone so much to fight for ours! Just had to say that!
9:05
Thank you, 9:00 guest. I will pass that along to my husband who is at home trying to get our 3 children into bed right now!!! :-)
Categories: Government Relations Tags: , , , , , , , , , ,

Collaborating in South-East Europe

February 28, 2012 2 comments

Posted by Simon Wallace, Ph.D. Autism Speaks director of scientific development for Europe.

In December 2010, Autism Speaks joined the Albanian Children Foundation and the Albanian Ministry of Health to develop a regional partnership that can advance autism services and research in South-East Europe. At that meeting, members of five ministries of health (Albania, Bosnia and Herzegovina, Croatia, Macedonia and Slovenia), the Albanian Children Foundation and Autism Speaks pledged to collaborate with support from the World Health Organization (WHO).

Specifically, the newly formed South-East European Autism Network (SEAN) pledged to:

  • Raise public and professional awareness in the region
  • Provide information resources for parents and professionals
  • Collect public health data on the locations of individuals with autism
  • Conduct professional training in the areas of diagnosis, clinical management and early intervention
  • Provide evidence-based services for both children and adults
  • Support the establishment of a regional committee to meet biannually with the goal of developing guidelines and recommendations on public health and autism

Over the last 12 months, Autism Speaks has been working with our partners in the region to ensure that the network is properly organized, identify national coordinators and grow the SEAN membership. Bulgaria, Kosovo and Montenegro recently signed the pledge; and Greece and Serbia may also soon join.

Last week, I and Andy Shih, Ph.D., Autism Speaks vice president for scientific affairs, attended the first official SEAN network meeting, held in Ljubljana, Slovenia with the support of the Slovenian Ministry of Health and the Institute of Autism Spectrum Disorder. Over 300 people attended this conference for national coordinators, local professionals, researchers and families.

Local organizer Marta Macedoni, M.D., Ph.D. and international technical advisor Connie Kasari, Ph.D., from UCLA at the first official meeting of the South-East European Autism Network in Slovenia.

Among the speakers was Antonio Persico, M.D., from Campus Bio-Medico University in Rome, who talked about the importance of multi-disciplinary approaches to help identify persons with autism. Connie Kasari, Ph.D., from University of California Los Angeles, presented on current models of early intervention and evidence for its delivery in schools. Lynn Brennan, Ph.D., an independent Applied Behavior Analysis (ABA) consultant, introduced a new video-based parent training ABA program she is developing in collaboration with Deborah Fein, Ph.D., from the University of Connecticut.

The conference was followed by a meeting for the national coordinators, the SEAN secretariat (Albanian Children Foundation) and technical advisors from WHO and Autism Speaks. Andy delivered the welcome alongside representatives from the Slovenian Ministry of Health and the Slovenian Ministry of Labour, Family and Social Affairs.

The national coordinators made short presentations on the state of autism care and research in their country. Though these countries vary greatly in the degree to which they’ve addressed autism, all face common challenges. In many cases, for example, diagnostic services are not available outside of a country’s capital city. Many countries simply lack the resources and manpower to diagnose the increasing number of children with autism who are being referred to their clinics. In addition, all the national coordinators spoke of the need to have more diagnostic, screening and awareness materials translated into their national languages. They also described a general lack of information on how many children are affected by autism within each country and a lack of public health infrastructure to identify undiagnosed children and adults.

In prioritizing SEAN’s first projects, we agreed to design a survey to assess baseline public health data from each country. This will help each country assess what it needs to improve clinical practice and measure future progress.

The network will also work together to translate Autism Speaks tool kits and other awareness materials and to increase national and regional awareness through World Autism Awareness Day and Light It Up Blue.

The network’s training priorities will revolve around diagnosis and early intervention. Autism Speaks will organize a training workshop at the Regional Centre for Autism in Albania later this year. The network also agreed to explore ways to work more closely with the WHO South-East European Health Network.

SEAN members plan to meet again in April 2013 in Sarajevo, Bosnia and Herzegovina. At that time, the national coordinators will report on the progress they have made in improving awareness and services for families within the region since these first crucial meetings.

Our efforts in South-East Europe are an important part of our Global Autism Public Health Initiative (GAPH). GAPH embodies Autism Speaks’ commitment to the global mission of improving the lives of all individuals with autism. Our international partners include families, researchers, institutes, advocacy groups and governments in over 30 countries. By working together, our partners contribute significantly and collectively to a greater understanding of autism.

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