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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!!! :-)

10 Providers for Teens with Asperger’s – Recommendations from Parents Who Have Been There

October 20, 2011 18 comments

Over 700 parents of teenagers with Asperger’s Disorder have registered on MyAutismTeam.com – a site where parents of children on the autism spectrum connect, share recommendations of local providers, and share tips with each other.  That’s about 20% of all parents on the site.   These parents have spent years building up their “autism teams” – all of the providers needed to help their children develop and thrive.  They have endured a lot of “trial and error” to find what therapies (and which providers) work best for their teens.  We looked at all the parents of children with Asperger’s Disorder on MyAutismTeam, narrowed it down to those with teens on the spectrum, and read through their stories and teams.   Summarized below are five of the more common, and five more unique, types of providers on these parents’ teams.

5 Common Team Members for Teens with Asperger’s

5.         Pediatrician – Every child needs one, but finding one with some understanding of autism and sensitivity to the needs of a child on the spectrum is important.   Autism was not nearly as recognized 10 years ago (when many of these parents were first seeking answers) as it is now, so some parents have had to “break in” their pediatricians over the years – sticking to their guns and insisting on a referral for a diagnosis when the pediatrician has told them something like, “Speech delays are normal for a boy of his age”.   You may not find a pediatrician with formal training in autism, but it’s helpful to find those that regularly see kids on the spectrum.   If you need help, there are over 670 pediatricians marked “Autism-Yes” on MyAutismTeam (meaning another parent or our partner, Autism Speaks, has indicated that the pediatrician is experienced working with children on the spectrum.)   If you can recommend a fabulous pediatrician, please find them on MyAutismTeam and add them to your team.   A word from you can save another parent months of “trial and error.”

4.         Psychiatrist / Psychologist – For initial and ongoing evaluations that not only help guide the types of therapies you pursue for your child, but also help in securing necessary services from schools and insurance companies.  A psychiatrist has a medical degree and can prescribe medications.  A psychologist has a doctoral-level degree in psychology.  (Note: Many parents report seeing a Neurologist as well.)

3.         Dentists – It’s hard enough to bring a neurotypical child to the dentist every six months, but to a child with Asperger’s and sensory sensitivity, a trip to the dentist can be daunting (even for a teen).  That’s probably why so many parents list a dentist as part of their Autism Teams.    Finding a dentist that is sensitive to those needs and skilled at working around them is a big deal.   Some parents seek out dentists that put their patients under anesthesia to make the process go more smoothly.  Check out Autism Speak’s Dental Tool Kit for more tips on making visits to the dentist office less stressful and more productive.

2.         Early Intervention Therapists – When asked “What therapies worked best for your child” more parents respond that ABA, occupational, social integration and speech therapy were the most effective in helping their children make progress.    They seek these therapies out through their IEPs at school, privately if they can afford them, and through other local resources where they exist.  One of the most common challenges parents discuss on the site is helping their teens build social skills and relationships with other kids their age.   BethComptonMathie ofMorristown,Tennessee explains, “My son used to have friends but the older he gets, the harder it gets. [He] is focused on video games.”  She has tried social classes over the summer and her son now works with a psychologist who visits the school each week from the same summer program.  Other parents have reported that occupational therapists have vastly improved their child’s handwriting.

1.         Respite Care –  Every parent needs a break of some sort.  A time to run an errand , do something for themselves, or just recuperate.  Many parents list the local chapters of Easter Seals as an invaluable resource for finding respite care and preserving their personal sanity.   As one veteran mom responded on lessons she’s learned, “I wish I knew how important it was that I make myself a priority. It’s the little things that I carve out in MY life to self-nurture that give me the strength to live, laugh and love more deeply today and be the best parent I can be.”

5 More Unique Providers You May Not Have Considered

5.         Martial Arts Instructors – Martial arts from an understanding instructor can promote focus, discipline, self-confidence, and physical stamina.  Numerous parents on MyAutismTeam start their child in martial arts classes at age 5 or 6.  In some instances it’s an activity that dads do with their children.

4.         Horseback Riding Therapy –  Occupational therapy through horseback riding can be a wonderful experience for kids with special needs.   CaddysLady of Vancouver Washington lists two such providers on her autism team.

3.         Attorneys – Sometimes attorneys specializing in special education law have been helpful for parents struggling to get the appropriate services from their school district or in securing coverage of key therapies from insurance companies.    One New Jersey mother of a 20 year old with Asperger’s has an attorney to help secure the things the services that come after the teenage years.  “After 2 years of fighting for Transitional Education, and winning in Court, my son has almost completed his first 30 days in a specialized school.”

2.         Piano Lessons – Quite a few parents have piano teachers on their autism teams.    I think a mother of 5 year-old (not a teenager) with Asperger’s, Sharon Esch ofAlbuquerque,New Mexico, sums it up perfectly.  “Music seems to be a great therapy for [my son], giving him an opportunity to work on fine motor skills in a way that doesn’t seem like work.  Also, I think he enjoys the immediate response of hearing music when he plays, something he controls himself.”

1.         Barbers – Like the dentists, every child needs a barber, and every child on the spectrum needs a barber who “gets it.”   For a particularly inspired and touching account of the bond between one teen turned adult on the spectrum and his barber read Laura Shumaker’s brilliant piece, “Mentor, Helper Friend.”

Who’s On Your Team?

You can see all of the parents of children with Asperger’s Disorder on MyAutismTeam and read through their stories and see their teams.  You can also post on their walls and ask them questions.  If you have fabulous local providers you can recommend to other parents just starting out on this journey, we hope you’ll join MyAutismTeam and share your wisdom!

Posted byEric Peacock, GM of MyAutismTeam

@ejpeacock

My Autism Team

July 19, 2011 10 comments

Eric Peacock is the GM of MyAutismTeam and Insider Pages and is passionate about empowering patients.  He lives in San Carlos, CA with his wife and two kids – Jack (7) and Katie (4) and is a hopeless Red Sox fan.  You can follow Eric and MyAutismTeam on twitter at @ejpeacock and @MyAutismTeam.  Visit www.MyAutismTeam.com for more information.

The Top 7 People Who Helped One Mother’s Child with Autism

When Sharon Esch’s two-year old son Adam was diagnosed with autism, she threw herself into researching and finding the best team of people who could help her son. This wasn’t a turn-key process. In fact, it took a couple of years and lots of “trial and error” for Sharon to architect the best team of providers who could effectively help Adam thrive.  Among others, her team included:

1)     a speech pathologist

2)     an occupational therapist

3)     a child psychiatrist specializing in autism

4)     a dentist sensitive to the needs of a child with autism

5)     an understanding and calm hairdresser for Adam

6)     an inclusive gymnastics instructor

7)     A caring librarian at a toy lending library

Feeling like she was forging her own path, Sharon started from nothing and built Adam’s “autism team” on her own.  She pored over resources online and offline to find providers, “hounded” her state’s early intervention offices until she got basic services, tested and walked away from some providers, and fine-tuned his team as Adam’s developmental needs changed.

Today, thousands of parents of children with autism are going through this same frustrating experience.  They feel alone, and despite the fact that other parents have gone through this process before them, they don’t have a way to easily learn from their experience and end up re-inventing the wheel.  This is the inspiration behind MyAutismTeam. www.myautismteam.com

MyAutismTeam is a free site for parents (recently launched in partnership with Autism Speaks) with a very simple beliefIt should be easy for parents of children with autism to find the best providers around to help them.   


On MyAutismTeam you can:

  • Find other parents in the autism community near you & read their stories
  • See the providers (the “autism teams”) other parents use & recommend 
  • Ask questions and share tips about providers
  • Connect directly with other parents on the site
  • Search a directory of over 30,000 autism providers and autism-friendly businesses nationwide – including all of the providers in the Autism Speaks and Easter Seals databases.   (e.g. you can do a search for “occupational therapists in San Francisco, CA”)
  • Add providers and autism-friendly businesses to the directory  

Since launching the site in April, the number of parents signing up on the site has been doubling every two weeks.   Parents of adult children, teenagers, and school-age children, representing the full range of the autism spectrum are connecting, sharing their stories and their recommendations.   Families with recently diagnosed children don’t have to re-invent the wheel, and the ‘’veteran’ parents also exchange information with each other as their children go through new life stages such as adolescence or transition into adulthood.

Everything from Doctors to Swim Lessons

The “autism teams” include far more than your standard autism medical experts.   For example, Sharon from Albuquerque, NM and Jennifer from Redwood City, CA – have recommended over 10 different providers each including…

  • Occupational Therapists
  • Speech Pathologists
  • Barbers (who “get it”)
  • Dentists & Dental Anesthesiologists
  • ABA Therapists
  • Developmental Pediatricians
  • Family Practice Doctors
  • Gastroenterologists
  • Summer camps
  • Swim teachers
  • Respite care
  • Music classes and more

All Parents in the Autism Community are Welcome

We just opened the beta of MyAutismTeam to all parents and providers in the autism community across the United States.   Hundreds of parents are joining each week, and nearly every one adds a new provider we didn’t know about previously.

Please join us!  To learn more, you can join  MyAutismTeam and begin exchanging recommendations with other parents in the autism community today.   Please visit http://www.myautismteam.com and please share this link with anyone you know that could benefit from the site.

You’re not alone and you shouldn’t have to re-invent the wheel.


The Happy Hannah Dance

January 30, 2011 10 comments

This is a guest post by Teresa Foden, Assistant Editor of the IAN Project at Kennedy Krieger Institute.

Sometimes you look at a rescue dog and wonder why he was dropped off at the shelter. This was not the case for Bailey. He was a mess. Transported north more than 500 miles in hopes that someone at a dog-rescue event in Maryland might be fool enough to adopt him, he barked, he yelped, he yanked the leash…and this turned out to be Bailey on his best behavior. In line to be euthanized at an animal shelter down South, Bailey, a Catahoula leopard dog who flunked his tracking training, had danced when the staff delivered his food. It was described as a four-step sort of canter dance, really something you had to see to believe. It saved his life. But now it looked like he had “flunked” adoption, too, his antics keeping potential adoptees at bay (oh, I forgot to mention – he bayed, too). As volunteers for the rescue organization, we agreed to take Bailey home, temporarily, until another volunteer could retrieve him. Hopefully, it would be soon.

But one of our twin daughters, Hannah, found in Bailey her four-legged soul mate. Hannah had always been a little different from other children, but most people, well, adults mostly, found her endless monologues about dogs – their behavioral psychology, their strong loyalties, even their genetics – somewhat engaging and endearing. And when that didn’t work, she had this hopping sort of dance she couldn’t contain when she was happy. We called it the “Happy Hannah Dance.” But that all changed in middle school, when teachers lost patience for her idiosyncrasies and she became the brunt of teasing from her disdainful classmates. At 12, she was diagnosed with Asperger’s. Rather than giving her comfort that there was a name that explained her difficulties, that there were other people who saw the world through a similar lens, the official confirmation that she didn’t “fit in” was devastating for her. The Happy Hannah Dance was over.

In the following months and years, Bailey grew to be a central part of our family. When Hannah says, “Sit,” (sometimes) he sits. When Hannah says, “Lie down,” (sometimes) he lies down. When Hannah says, “I love you, Bailey,” he crawls into her lap on the floor and they seem to become one. During Bailey’s time with us, we have watched Hannah grow to trust not only Bailey, but herself. She and Bailey have been engaged in a metaphorical dance. Like many families, we have seen a relationship with an animal contribute to the emotional healing of someone with a disability. It’s hard to put into words, and we are left saying inadequate things like, “Those two, they saved each other.” Like others with similar experiences, we wonder if there is any possibility that what we see is real enough to be actually measured, scientifically tested in a research situation, and someday delivered to children. Is there a way to harness the bond that seems to arise naturally between many children and animals to treat something we don’t fully understand, something like autism?

Read IAN’s Dogs, Horses, and ASD: What Are Animal-Assisted Therapies? to find out more about the state of the research into animal-assisted therapies.

Learn about the Interactive Autism Network and how you can participate in autism research.

RoboTherapy

July 15, 2010 4 comments

This post is by Autism Speaks’ staffer, Leanne Chukoskie, Ph.D., Asst. Director for Science Communication and Special Projects.

Imagine having your child’s favorite therapist available to you at any time you need.  With her uncanny way of drawing out your child, together they practice speech, social interactions and some physical gross and fine motor control drills to improve his coordination skills.  Now imagine that all this doesn’t cost millions and you don’t even need to build on to your house for the therapist’s new abode.  All she needs is a dose of 110V every few days to keep going.

Such fantastic scenarios aren’t necessary the realm of science fiction any longer. Social robots are making appearances in classrooms and even serving as teacher’s aides.  An article in this week’s New York Times makes the case for the unique advantages that these machines bring to the learning environment.  For example, RUBI, a robot developed at UCSD, has been deployed in preschools where it has been teaching children Finnish words.  RUBI modifies her interactions on the basis of the children’s approach and retreat behaviors as well as a real-time analysis of children’s facial expressions.  Is this child looking frustrated or engaged and content?  Using this interactive technology, RUBI and robots like her can individualize interactions to optimize the engagement with each child.

It is precisely this ability to optimize that makes robotics so useful for working with individuals with autism.  Katharina Boser, Ph.D. the co-chair of Autism Speaks’ Interactive Technology for Autism Initiative (ITA) underscores the utility of programmed real-time interactions for autism.  People are unpredictable.  For an individual with autism, this aspect of behavior can make interactions with people less desirable than interactions with a robot that matches expectations frequently.  With the phenomenal advances in computer technology, a robotic social partner can work on lags in, for example, gestural communication by keeping to a very predictable set of gestures, while adding a bit more variety with speech and intonation if the learner is ready.  Other ITA research underscores the point that the social partner does not need to be human-like.  Researchers noticed that some young children with autism really engaged with Crush, the sea turtle made famous in Finding Nemo. and have built a therapeutic strategy around this character.

In addition to the robots, other sorts of technology are offering therapy support for autism. By integrating eye-tracking into a game interface, Felicia Hurewitz, Ph.D. (Drexel University) has developed an environment for children that requires gaze interaction with the characters to reveal clues to advance in the game.  Nilanjan Sarkar, Ph.D. (Vanderbilt University) is using feedback from an individual’s autonomic responses (such as heart rate, sweating) to find the right level of difficulty for a game—not too frustrating and not too easy. The computer interface and simulated human interactions are put to work in service of practicing social skills in a safe environment from SIMmersion, a technology company in Maryland. The ability to analyze, review and evaluate interactions is a great strength of this technology.

These great new tools will undoubtedly change the landscape of autism therapy, but they will never replace a human therapist.  Our models of the behaviors being simulated in silico are human.  We also need humans to serve as final arbiters of the therapy—did it really work?  Are the data being collected valid in other settings? After all, the point of this training is to interact with other people.  As of this writing, we still need humans for that!

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In Their Own Words – The Rescue of My Son

July 5, 2010 36 comments

This “In Their Own Words” essay was written by Evelyn Halka, who has a son with autism.

Jacob was born into our family four and a half years ago. He was a beautiful baby, big blue eyes, beautiful face, sweet little fingers and toes. Jake was also an easy baby to nurse who responded well by gaining weight on schedule. He was easy to amuse, he loved his musical toys, he loved the TV, he loved to watch the fan, and he loved the baby swing. We proudly marked the calendar with all of his development and accomplishments. We felt Jake was right on track; he rolled over, sat up, crawled, stood, walked right on schedule. He babbled, waved, and clapped and would say mama and dada.

Slowly like a season, things began to change. There are so many common explanations. Boys develop slower than girls, he had his big sister talking for him, and sometimes it takes longer for the second child. I was not worried at first, not until other skills started to slip away. I hadn’t seen him wave bye-bye as much, the clapping? Where had that gone? It was sneaky, it wasn’t a date you could put your finger on, but the sounds slowly started disappearing until there was nothing left. He was focused on objects; he played for hours with colorful toys in particular. Jake really was becoming less and less interested in us. I felt like I just became a way for Jake to get what he wanted. He would pull on me and my husband and bring us to the area of what he wanted. He started to have trouble sleeping; he would wake up crying often throughout the night and then be up at 3 or 4 a.m. for the day. Jake would no longer tolerate being restrained in any way, no high chair, no stroller, and no shopping carts. Jake started to do unsafe things, jumping off of anything he could, climbing and jumping. If he became upset he would bang his head against the highchair. He started to be very selective about what he would eat eliminating almost everything until we were down to about four foods. We would call him and he would not look at us. We could not get him dressed, bathed or teeth brushed without a fight, he could not be directed into any activity. The sounds were gone, the sleeping was gone, the waving, the clapping, pretty much all of the things that Jake was, were disappearing. Finally, Jake was gone too.

I called early intervention at the advice of my sister. After meeting with early intervention, an evaluation determined that Jake was delayed in all areas, and was a candidate to be evaluated by the Autism CATCH team in Chester County, Penn. Jacob was eligible for early intervention and received special instruction, occupational therapy, and speech in our home until he reached age three. He was evaluated by the CATCH Team and was diagnosed with autism spectrum disorder. It was recommended and approved that he attend the TOT preschool class provided by the ARC of Chester County.

Slowly the special instruction we received began to change my family’s life. My everyday battles were meet head-on with interest, respect, empathy and experience. My husband and I were willing participants in my son’s therapy and our son’s teacher truly become our teacher, and we learned to get to Jake with her help. A strong focus on picture exchange communication lead the lessons and slowly with helpful modification made by our instructor, Jacob began to communicate his wants to us. Slowly his frustrations began to become less. Through pictures, sequences and stories my son began to participate in his life, he finally found the words he needed. At this time we also began to receive wraparound services, and behavioral support in our home. The combination of the therapies began to fall into place. This was the beginning of his breakthrough.

Jake’s participation in the TOT program was a pivotal turning point in his story. Once Jake began the TOT program he was again becoming the son I once knew. He received OT, speech and special instruction in concentrated, individualized form in this classroom six hours per week. He absolutely blossomed and rose to the challenges he had in his life with this help. The program attacked problems and everyday battles, leaving us with the sense that we could lead a fulfilling life with my child and sanity intact. Going out into the community in various ways gave Jake so many skills. He is able to be examined by a doctor, a dentist, get a haircut, play at a playground, eat at a restaurant, shop in a store, and go to the library! I would never have imagined that we would ever enjoy any of these activities with our son. I feel like we were blessed to have Jacob in this program, and that he would not be where he is today without it. Jacob’s progress is remarkable, and been achieved because of this amazing program and the staff that provides it. I can not stress enough how instrumental it has been in my sons recovery.

Jacob is now four and a half and speaks in complete sentences. He attends a developmentally delayed class room and is doing very well. He will brush his teeth and sit at the table and even clean up his plate and his toys. Jacob sleeps through the night and now calls me “mommy,” my husband “daddy,” and his sister and dog by name. He is a pleasure to be around and I am grateful for all the amazing people who have blessed our lives and helped us along the way to get where we are.

Every child who is slipping away unto himself should have the chance that Jacob had; I hope that these services can be maintained and expanded to meet the demands of this epidemic. I am forever grateful for the RESCUE of my son, Jacob William Halka.

“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.

How Becoming a Therapist Changed My Life

July 1, 2010 6 comments

This is a guest post by Emily Mandel. Emily is a student at Brandeis University who is training in ABA therapy.

This summer I am interning at a center called Greenwich Education and Prep in Cos Cob, Connecticut, learning to be a therapist for children with autism using Applied Behavior Analysis (ABA) under the supervision of Dr. Mindy Rothstein and her colleagues. Initially, ABA was what I expected it to be: a therapy involving reinforcement of positive solicited behaviors. “Alex, look at me… Alex… Alex, what do you have to say? Say it to my face. Very good! You earn a point toward winning your candy.” However, until I began this training, I had not realized how multi-faceted and complicated ABA is. I had assumed it was the same method of therapy for every child, and that if it did not work it was not the right therapy for the child. What I’ve been observing, however, is quite contrary to my expectations.

Each child has a unique program designed to address the specific preferences, strengths, and areas of challenge. For example, if a child has trouble with eye contact and following directions, the instructor will reinforce eye contact and direction-following with prizes the student can earn after obtaining a certain number of “points.” In addition, the instructor prepares various activities to address each of the areas of difficulty, and monitors the progress made in each activity. For example, that same child with difficulty making eye contact and following directions is given a task like a puzzle and prompted to make eye contact each time a direction is given regarding the puzzle.
Over my summer so far, I’ve seen such changes in the children. I am pleased to see how far each child has progressed using ABA intervention techniques.. Most times forms of therapy– including ABA –benefit from the accompaniment of other forms of therapy. However, I’ve come to believe that ABA is fundamental; the ABA program targets each specific area of challenge for the child. I cannot wait to see how the children I am working with progress over the course of the rest of the summer, and how they will continue to progress throughout their lives.

I’ve made the decision to go through the certification process for Applied Behavior Analysis after I earn my Bachelor’s Degree in Psychology from Brandeis University. Greenwich Education and Prep has truly shown me the cognitive leaps and bounds children with autism can make.  I hope to one day be able to change the lives of these children and their families through this fundamental method of therapy. I’ve seen what ABA can achieve, and I know that this is what I want to do with my life.

Categories: Science Tags: , ,

In Their Own Words – Great Strides

May 11, 2010 44 comments

My son, Christopher Fitzmaurice, was diagnosed in 1988 at UCLA by one of the foremost authorities in the field in autism, Dr. BJ Freeman. We then had two confirming diagnoses. We got Chris all of the services that were provided over the years and on our own, paid for additional speech therapy (five days per week) and much more. As we moved throughout Chris’s life, I always kept in touch with Dr. Freeman and used her as a “resource” at different times so we knew what to do next.

Over the years, a boy who didn’t even speak intelligibly at 11 (he had been kept back twice to be “mainstreamed”) continued to improve at light speed. By the time he was 17, I flew back to California with him to see Dr. Freeman (who was still at UCLA) and she was “amazed” to see how well he was doing. Over the next two years he shocked everyone and they “raised’ him one grade. At 19, he was accepted to UNC Charlotte and graduated in four years with close to a 3.0 GPA in Sports Medicine. He did so well in fact that he was accepted for his Master’s Degree in Sports Medicine at UNC-C, which has amazed everyone who knew him.

At age 24, we just flew out again to see Dr. Freeman and she was absolutely “blown away.” Tears all the way around. The improvement since she saw him at 17 was “ten-fold.” But what she said, I feel, is really important for young parents today whose child was just diagnosed.

“Michael, a ‘number’ of the kids that were diagnosed back in the 80’s with autism are doing very well today. Working, some going to college, some in graduate school like Chris.”

She further said that some kids were so good on the computer, for instance, that companies actually were looking for adults with special skills.

I remember we didn’t have much hope back when Chris was diagnosed in the late 80’s. Yet here’s one of the foremost authorities on the subject of autism who says many years later,  that she has “seen with her own eyes” great strides by children with autism.

Young parents need to know this.

This “In Their Own Words” essay is written by Michael Fitzmaurice of Charlotte, N.C.

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.

5|25: Celebrating Five Years of Autism Science Day 22: Combined Therapies Hold Promise for More Effective Treatments

February 22, 2010 Leave a comment

In honor of the anniversary of Autism Speaks’ founding on Feb 25, for the next 25 days we will be sharing stories about the many significant scientific advances that have occurred during our first five years together. Our 22nd item, Combined Therapies Hold Promise for More Effective Treatments, is from Autism Speaks’ Top 10 Autism Research Events of 2009..

Just over three years ago the FDA’s landmark approval of risperidone for the treatment of ASD represented a significant breakthrough for the autism community. Since then other large-scale autism studies have sought FDA approval for drugs that target core or associated symptoms for autism, but unfortunately few of these trials have proven successful. In 2009, taking a cue from other disorders such as ADHD where a combined effect of both medication and behavioral therapies has proven fruitful, researchers published the first successful combined randomized controlled trial for ASD. The paper in the Journal of the American Academy of Child and Adolescent Psychiatry demonstrated that combined pharmacological and behavioral treatments was more effective than pharmacological treatment alone for reducing challenging behaviors.

Risperidone is approved for reducing aggression and irritability in children and adolescents with autism. However, its use still presents a number of challenges to clinicians. Like other atypical anti-psychotics it can have adverse side effects including weight gain, potentially leading to increased risk for obesity, and GI symptoms such as diarrhea and constipation, which can already be problematic for children with ASD. Clinicians must therefore balance the benefit of treating the problem behaviors with the potential for creating new health challenges for the child. On the other hand, behavioral therapies have been shown to be one of the most reliably effective treatments for improving problem behaviors with limited side effects. Combination therapies create a synergistic therapeutic environment in which medication allows a child to get more from behavioral therapies and, at the same time, the benefits of behavioral therapy may mean lower doses of medication are required.

A new multi-site study by the Research Units on Pediatric Psychopharmacology Autism Network, the same group that conducted the pivotal studies leading to the approval of risperidone, investigated whether combining risperidone treatments with a simultaneous behavioral intervention would be more effective than medication alone. Their 24-week study of 124 children ages 4-13, compared a treatment regime of risperidone alone with a combined treatment regimen of risperidone and a parent training program that followed the principles of applied behavioral analysis. While both the combined and medication-only treatments reduced the severity of non-compliant behaviors, the combined therapy resulted in a significantly greater reduction while using lower doses of risperidone. The combined therapy was also better at reducing other challenging behaviors, such as irritability and hyperactivity.

This study provides hope for a wider range of available treatments and greater flexibility for clinicians who should be encouraged to use combined approaches in cases where medications or behavioral interventions are not effective on their own. Confirming the effectiveness of coordinated treatments that take full advantage of the benefits of both pharmaceutical and behavioral approaches also demonstrates the continued need to support research establishing the most effective treatments in all realms. Finally, the vast majority of clinical trials conducted to date have only addressed how an individual treatment compares to a placebo. Very few studies have been conducted that make head-to-head comparisons of two or more treatments as was done here, so the success of this trial will also serve to highlight the utility of “comparative effectiveness trials” for determining the best treatments for ASD.

Did you know?: Autism Speaks’ funded Interactive Autism Network (IAN) is a web-based family registry and social network that brings together thousands of families with autism research and provides a forum for families to report information about their experiences.  In a recent study on over 5000 children in IAN, 35% of parents reported that their children were taking at least one psychotropic medicine and the use of these drugs increased with age.  The incidence of a comorbid condition such as seizures, ADHD or anxiety increased the likelihood of medication use.  The IAN authors also reported on correlations between insurance access and use of multiple medications, noting that those children using public insurance plans (such as Medicaid) tended to be on more medications, possibly due to an inability to get coverage for behavioral therapies.

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