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

February 28, 2012 Autism Speaks 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: ABA, advocacy, autism, Autism Speaks, Autism Votes, Insurance, Lorri Unumb, private insurance, self-employed, State Initiatives, therapy

I am a 26 years old with autism and many attention-seeking behaviors. What causes them? I am verbal.

January 13, 2012 jsnydersachs 6 comments

Today’s “Got Questions?” answer comes from Autism Speaks Chief Science Officer Geri Dawson, PhD

Thanks so much for your question. There are many reasons why a person with autism would engage in many attention seeking behaviors. Perhaps you would like to socially interact and make friends with others, but aren’t quite sure the best way to do this. If you are being ignored by others, this might lead you to repeat your attempts to interact again and again.

If you are engaging in a behavior that is ritualized (exactly the same each time) and repetitive, it might reflect a general tendency to engage in repetitive behaviors, which is a symptom of autism. With appropriate guidance, you can learn more appropriate ways of seeking attention and this will help you develop more satisfying relationships with others. Seeking the help of a psychologist or behavior analyst may be particularly beneficial.

For more information and resources, you can follow these links to our pages on Applied Behavioral Analysis, Adults with Autism and Adult Services.

Got more questions? Send them to GotQuestions@autismspeaks.org, and join Dr. Dawson for her next “Office Hours” webchat with co-host, Joe Horrigan, MD, Autism Speaks assistant vice president and head of medical research (first Thursday of every month at 3 pm Eastern).

Categories: Got Questions?, Science, Uncategorized Tags: ABA, adult services, adults, Adults on the spectrum, Applied Behavioral Analysis, autism, Autism Speaks, Geraldine Dawson, Geri Dawson, joe horrigan, joseph horrigan, repetitive behaviors, social skills, Young Adults

Transcript of Today’s Office Hours Webchat

January 5, 2012 jsnydersachs 3 comments

Office Hours Webchat with Geri Dawson and Joe Horrigan Jan 5. Thanks to the more than 200 readers who joined us. As time allowed answering just a portion of more than 100 questions, we hope you’ll join us again next month—Feb. 2 (first Thursdays) at 3 pm Eastern.

Thursday January 5, 2012

2:56

Hi Everyone! We are just getting ready to begin!

2:56

3:00

Hello everyone, this is Dr. Dawson. Welcome to the webchat. We’re glad you are here. Dr. Joe Horrigan and I are here and ready for your questions.

3:00

3:00

Hello everyone – yes, this is Dr. Joe Horrigan and I am here, too.

3:00

3:00

Advance question from LINDSAY: My 3 year old son has not been diagnosed as on the autistic spectrum at this time, however I have that gut mom feeling that he is on the spectrum. He went through the First Steps program from 18 months to his third birthday. He was evaluated by our school system and is now attending half day preschool five days a week. During that time he sees attends speech for two fifteen minute sessions. He especially needs help with his language both receptive and expressive. My question is what is my next step in finding a private place that deals specifically with autistic kids so that he can get a more intense therapy for his language delay? Also, is this kind of therapy covered by most insurance plans or are there other avenues to get it covered?

3:00

3:02

Hi Lindsay, This is Dr. Dawson. If you feel that your son might be on the spectrum, I encourage you to see a specialist – either a physician or psychologist – who specializes in autism and can provide a proper evaluation. If he does have autism, this will open the doors to intervention programs and services. Autism Speaks resource guide (http://www.autismspeaks.org/community/resources/index.php) can help you locate services. Speech-language therapy is usually covered by most insurance plans. Specialized autism treatment, such as applied behavior analysis, is sometimes covered depending on where you work and the state you live in. Follow your instincts and I wish you the best!

3:02

3:04

[Comment From Guest Guest : ]Me and my husband do not see eye to eye with our son is there anyway to find a common ground?

3:04 Guest

3:05

Hello, It is common for parents to disagree about what is best for their child. Find a time when the two of you can spend some quiet alone time together and allow time for each person to express their feelings and concerns. Really listen, reflecting back what you have heard. Then, see if there is a way of coming up with a solution that you both feel comfortable with. If you continue to have difficulty seeing eye to eye, meet with a professional and discuss the issues you disagree about with this person, who can help you be more objective and promote a healthy dialogue.

3:05

3:07

[Comment From Rachel Rachel : ]My son was diagnosed with PDD and Klinefelter’s in June. He had a feeding tube placed in March 2011 and is still not eating. He will be 3 in March. Any suggestions?

3:07 Rachel

3:09

Hi Kim, This is Dr. Dawson. It is not uncommon for young children with autism to recognize letters even before they start saying words. She can see the letters and use her visual skills, which may be stronger than her auditory skills. Playing games by pointing to and naming letters can be a way of stimulating her language development, so I encourage you to continue to interact with her by playing letter games.

3:09

3:09

[Comment From Kim SmithKim Smith: ]I have a 2yr old daughter. Actually 27months old now. She doesn’t say any words at all, but she does recognize a few letters, A B C D E P T, not consistently but at times. I constantly work with her on letters. Because she has ADS/sensory issues, is she just repeating these because she’s recognizing them or could this truly be a preface to her ability to speak. what do you think??

3:09 Kim Smith

3:10

Rachel: This is Dr. Horrigan. It would be good to know if your son has had a formal GI workup completed, to look at potential biological or physical causes for his not eating, and to know what they found, especially if they did a biopsy. Also, a skilled dietician and/or speech therapist could be quite helpful, in terms of determining if there are any windows of opportunity in terms of your son’s preference for particular tastes or textures. There have been occasions, usually with older children, when we have to, out of medical necessity, use medicines in an off-label manner to augment appetite – examples would be cyproheptadine or risperidone or mirtazepine. Again, this is “off-label”, but sometimes we have to do it out of medical necessity.

3:10

3:12

[Comment From MicheleMichele: ]My Granddaughter is six years old, she can read at sixth grade reading level, she writes, she speaks a little bit of several languages self taught googler. yet, I rarely get a direct answer from her. Sometimes I do, sometimes I don’t. Suggestions on communication would be so helpful. One more thing, she has the most violent temper, what are the best means of disipline for kids with Autism.

3:12 Michele

3:14

Hi Michele, This is Dr. Dawson. Even after children with autism develop many skills, such as reading and even speaking in different languages, they can continue to have difficulty in the social use of language, especially with conversation skills or responding to questions that she might not be interested in. Before engaging her in a conversation, be sure to take a moment to get her attention and then state the question in a simple direct manner, even providing visual cues such as gestures. If she doesn’t respond, you can prompt her to respond by giving her choices of responses (“Do you want X or Y?”) or even providing the beginning part of her answer. She is fortunate to have such a caring grandmother.

3:14

3:16

[Comment From GuestGuest: ]My daughter Madi is 10 almost 11 she has autism and is just starting puberty. I have never seen her so anxious like she has been these last few months. I have a dr.’s appointment to talk about medication for anxiety but, we are currently not on any, What types of med’s do they put such young children on?

3:16 Guest

3:18

Dear Madi’s mom: hormones such as estrogen and progesterone can definitely influence mood, as can the hormones from the brain that stimulate their production. Changes in these levels can trigger anxiety, including episodes that feel like ‘panic attacks’, sometimes associated with an emerging menstrual cycle, and this is not uncommon when there is a family history of bona fide anxiety disorders. In terms of medications, I suspect that you may end up talking with Madi’s physician about options such as an SSRI (e.g. fluoxetine, sertraline), starting with very low doses, or perhaps even a low dose of a benzodiazepine such as clonazepam, if there is a clear medical need because the anxiety is becoming disabling. I suspect that the degree of anxiety may settle down somewhat once Madi passes through menarche and commences regular periods, but that come take some time…

3:18

3:20

[Comment From DesiDesi: ]I am a concerned sister my brother has been displaying very defiant attitude about going to school and doing his routinely schedule. He also has this tendency to lash out and talk to his hands naming them Oobi and Uma… He does very forcefully and it happens about 53 times an hour. His school brought this attention to us this summer 2011. His teachers have noticed he is doing this more and more which deters and delays the time to complete a task. Would you happen to know what this is?

3:20 Desi

3:21

Hi Desi, This is Dr. Dawson. The behaviors you are describing are common in children with autism. Your brother is having trouble knowing how to express his feelings in an appropriate manner. When he gets frustrated, he likely doesn’t know how to express his frustration using words, and therefore he lashes out. Repetitive behaviors are also common. Both the lashing out and repetitive behaviors can helped through behavioral interventions and sometimes with medicine. To find resources, take a look at Autism Speaks resources library.

3:21

3:21

http://www.autismspeaks.org/family-services/resource-guide

3:21

3:22

[Comment From LaurenLauren: ]How often do you recommend having a child see a developmental pediatrician? My daughter saw one just over a year ago and is in an intensive school program, but I haven’t taken her back to the dev. ped. Should I take her every year or ever six months, etc??

3:22 Lauren

3:22

Lauren: This is Dr. Horrigan. Every six months is fine, in my opinion, if everything is going reasonably well, and there are no specific medical or psychiatric concerns that merit the use of medication. I would look at a more frequent pattern of visits to a developmental pediatrician if your daughter is not making the gains that you expect, or if you are wondering if medicine might be a useful part of her treatment plan.

3:22

3:23

[Comment From GuestGuest: ]Hello, Doctors. I am a college student majoring in biology. Last summer, I managed a summer camp for adults with intellectual disabilities, and was inspired to specialize in autism when I (hopefully) attend medical school. I was wondering what inspired each of you to enter into this field of research?

3:23 Guest

3:23

Hello – This is Dr. Dawson. Like you, I was inspired to devote my career to autism at an early age. I babysat for twins with autism in high school. At that time, there was so little known about how to care for and help people with autism. We have made a lot of progress but we have a long ways to go and we need people like you to join the effort.

3:23

3:26

[Comment From GuestGuest: ]My 3 year old was just diagnosed on the spectrum 3 weeks ago. His IEP has been developed and his first day of special ed pre k was today! One of the things we will be working with is communication thru pictures. I’ve looked up info regarding PECS and similar. It is not in our budget to purchase PECS currently. Do you know of any other resources/options? Thanks.

3:26 Guest

3:26

Hello, This is Dr. Dawson. PECS and other visual communication systems can be very helpful in promoting language development in young children with ASD. Your school should provide you with an identical set of pictures that they are using so they can be used at home. Many times, these are handmade and can even involve photos taken by parents and teachers. You don’t have to necessarily use pictures made by a company. Here is a link about the use of visual supports:

3:26

3:27

http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/tools-you-can-use/visual-supports

3:27

3:28

[Comment From GuestGuest: ]How do you decipher how to treat co-morbidity with ASD and associated disorders such as GAD and ADD? My child has a combination of these and it is difficult to tease out cause and effect or primary vs. secondary – especially in social situations where the ASD is present and so is the ADD impulsivity. THANK YOU!!

3:28 Guest

3:30

Dear Guest: This is Dr. Horrigan. You are absoloutely right – it is tough to disentangle common co-morbid conditions, such as co-morbid anxiety, especially if the youngster’s degree of developmental disability is more substantial. This is one of the reasons why I like to spend a lot of time taking a good family history, especially to look at who in the family (mom, dad, brothers, sisters) might have common psychiatric conditions that are known to be heritable and can be readily treated – you mentioned two of them – anxiety disorders and ADHD are two good examples. Then we decide if we want to use medicine as part of the treatment package for the youngster with ASD – if we do, we typically start with much lower doses than the prescribing information typically indicates, and we pick a medicine that is keyed to the specific difficulties that the youngster is facing. An example would be something like clonidine for a youngster with ASD that is very hyperactive/impulsive.

3:30

3:32

[Comment From lisalisa: ]I am an SLP and would like your insight on a client. He is 6 and nonverbal…uses some signs and pictures for communication very effectively. he has a history of aggressive behaviors that we think were related to gastro issues and underlying strep. those are taken care of now and aggression is only when he doesn’t get his way…very developmental behavior. Now, however, sometimes he gets this very confused look on his face and then starts to cry…a very pitiful cry. A hug makes it better for a while. he is also having a terrible time in public…restaurants, church….has huge meltdowns, bites, scratches…..

3:32 lisa

3:32

Hi Lisa, This is Dr. Dawson. Autism is often associated with medical issues, such as gastrointestinal problems, so it is great that you were aware that this boy was suffering and got the treatment he needed. You should keep a careful record of the times when he starts to cry to see if you can determine what is eliciting this. Perhaps it is something you can change. The important thing is to continue to help him learn to communicate his needs and feelings, so that he doesn’t have to resort to meltdowns and aggressive behavior. If you can anticipate when he is starting to get upset, you can prompt him to ask for a break or help by using a picture, word, or gesture, instead of having a meltdown.

3:32

3:33

[Comment From annann: ]My son is taking intuniv 2 mg it seems to be helping but I am being told by other parents that he should be in a combination of stimulant plus intuniv

3:33 ann

3:35

Ann: This is Dr. Horrigan. It is not a problem for your son to take Intuniv (guanfacine) by itself. If it is helpful for your son, and it is well-tolerated, by itself, that is fine. It can work well on its own for impulsivity/over-activity and to some degree for inattention/distractibility. The fact that it has been studied alongside stimulants is helpful additional information, but it does not confine how it is used by thoughtful clinicians.

3:35

3:36

[Comment From MichelleMichelle: ]How do we handle discipline in our 4 year old.. limited verbal child? My husband, our child’s school and myself are all addressing it differently and it seems none of it is working!

3:36 Michelle

3:38

Hi Michelle, This is Dr. Dawson. Is your child participating in an intervention that uses applied behavior analysis (ABA)? If not, to find out more about ABA, you can check out this link on Autism Speaks’ website. See link below. The methods of ABA should be used to help discipline your child with autism. The method involves providing a routine and structured environment, breaking down the things you want your child to do into small easily understood steps, teaching each of these steps often with much repetition, and then reinforcing each behavior using those things that your child specifically finds reinforcing.

3:38

3:38

http://www.autismspeaks.org/what-autism/treatment/applied-behavior-analysis-aba

3:38

3:42

[Comment From AishaAisha: ]My son was diagnosed with ASD at 3yrs old the fall of 2010 and now this past fall 2011 he was diagnosed with ADHD. I want to know if this is common?

3:42 Aisha

3:42

Dear Aisha: This is not uncommon. ASD usually trumps the clinical picture, especially if the if the degree of disability is more severe, and the younger the child is. Also, DSM-IV discourages an ADHD diagnosis if autism is diagnosed as the primary condition. However, for many individuals with ASD, as the severity of their core ASD symptoms subside with maturity, it is not uncommon for the residual inattention/distractibility/hyperactivity/impulsivity to be the key disabling features that remain, and this become more evident as the school curriculum becomes more cognitively (and behaviorally) demanding.

3:42

3:43

[Comment From LaceyLacey: ]Hi! I have been looking forward to this all week!! We started trying to get my almost Three year old daughter tested in September and I am very frustrated. We got a ref. from her Pedi. to early intervention. They called us after a few weeks and said that it would be better for us to go through the school board. We gave them all of our information and than weeks went by with no contact from the school board. I called them back and they said that they did not have our paper work. We did the inital testing on Dec 13th. The lady told us that she strongly suspects ASD and that she needs more testing done. They said to expect an appointment letter sometime in Feb. I did not want to wait that long with no information so I started trying to find a private dr. What a night mare. Call the insurance company and got a phone number. Called the dr and they said that we should wait until after the holidays so that she would be closer to 3 for testing. I called back Jan 2nd and was told that the dr was no longer accepting new pts. After explaining the situation they said that they would call me back after talking to the dr. The did not call me back despite me leaving 2 more messages over the next Two days. I got in touch with them again and they told me that she could start seeing a social worker that will be out until March. Should I wait that long? If so what do I do in the mean time? I feel like I dont know what to do with her. Like when she has a melt down I just kind of hold her.

3:43 Lacey

3:44

Hi Lacey, This is Dr. Dawson. What you are going through sounds so frustrating. I know you are eager to get started helping your child right away. I recommend that you check out Autism Speaks resource library which will show you the providers in your area. Keep calling until you find someone who will see you as soon as possible. Your local Birth-to-three center should see you right away. You can get started in speech-language therapy even before you have a formal diagnosis for your child. Also, there are many good books that explain things you can do at home to help your child. I recommend Overcoming Autism by Lynn Koegal. Check out Autism Speaks 100 day kit for more information about how to get started and find resources.

3:44

3:44

Resource Library from Family Services:
http://www.autismspeaks.org/family-services/resource-library100 day kit:
http://www.autismspeaks.org/family-services/tool-kits/100-day-kit

3:44

3:47

[Comment From CourtneyCourtney: ]My Son has been Biting the Inside of his Lip happens when he is upset, board, Or super excited! Now It is A big sore!! Witch is now Reacting with his eating!! What can I do to Stop or speed up the Healing?

3:47 Courtney

3:48

Courtney: This is Dr. Horrigan. You can also speak with a dentist, but it sounds like your son may have one or more apthous ulcers in his mouth from the accidental biting. Sometimes l-lysine can be helpful, but you have to really crush up the pills to make them easy to swallow if the ulcer(s) really hurt. Occasionally oral herpes can masquerade as, or look like, SIB mouth sores, in which case there are other medicines for that. But I think a dentist should take a look, to figure out what might be going on….and to make a proper diagnosis.

3:48

3:50

[Comment From RobinRobin: ]My son is 11. DX with Asperger Syndrome. He hates school and seems to be very angry all the time. He is extremely bright but of course is lacking in social skills. Are there major behaviour changes related to puberty? is this anger normal? He is not angry all the time but he gets very frustrated easily and he screams at people!

3:50 Robin

3:50

Hi Robin, This is Dr. Dawson. The problems you are describing are not uncommon but it would be good to see if there is a way to help your son be happier, especially to enjoy school since he is so bright. Puberty brings many changes – both hormonal and social – can result in higher levels of emotional outbursts and anger. The first thing is to try to understand what it is about school that he hates. Is it the classroom structure, the academic material (is it interesting, boring, too challenging), his lack of friendships, or possibly bullying or teasing? Meet with his teachers to discuss your concern and see if you can make changes at school that will help him enjoy it more. Social skills training, which includes teaching a child had to manage their emotions and outbursts, can be very helpful. Check out Autism Speaks resource library to see if you can find a psychologist or behavioral specialist or social skills group in your area. You can find the link here:

3:50

3:51

http://www.autismspeaks.org/sites/default/files/documents/atn/transition_from_pediatric_to_adult_services.pdf

3:51

3:52

Hi JM, This is Dr. Dawson. Your brother is fortunate to have such a caring brother! Check out Autism Speaks transition kit (above) – it describes in detail how to help an adolescent with ASD transition successfully from high school to college.

3:52

3:53

[Comment From JMJM: ]My brother has Asperger’s and is getting ready to go to college this semester. How can my parents prepare him?

3:53 JM

3:55

[Comment From ShannonShannon: ]Hi, my son is 7 years old and has aspergers. He is also diagnosed with ADHD, sensory, and anxiety disorder. He has had so many changes in his life, we recently had to move in with my parents because my husband lost his job as a manager. My son is on focaline (15 mg AM), intuniv, and ritalin (5 mg at 4pm). He is having major issues at school and anxiety. He worries about the smallest thing and freezes answering the simplest questions (like 2 plus 2). He does see a therapist without any luck and the school feels like there is emotional barriers. But he is failing second grade regardless of us or the school helping. He use to be a straight A student and now he pulls C’s, D’s and F’s. Is there anyway (without medications) to lesson his anxiety or help him through this? We do play therapy but he seems to be getting worse to the point of effecting his gastrointestinal. He seems to pick fights and lie quite a bit at home. At school he runs to the nurse for every little thing or is late to class regardless of us dropping him off early. I believe it’s avoidance? Anything to subside his anxiety?

3:55 Shannon

3:56

[Comment From DonnaDonna: ]I am a bus aide for special needs children and I was wondering what is the best way to introduce change to autistic children

3:56 Donna

3:56

Hi Donna, This is Dr. Dawson. As you probably are aware, children with autism often resist change and can become upset by any change in routine. If you can anticipate a change ahead of time, it is most helpful. You can explain that things will be different (for example, the bus will be coming at a different time or take a different route) and illustrate this using pictures, if possible. Check out Autism Speaks visual support tool kit at this link:

3:56

3:57

VISUAL SUPPORTS: http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/tools-you-can-use/visual-supports

3:57

3:58

Shannon: This is Dr. Horrigan. I think that the difficult changes that have occurred in your family’s life, mostly of which are not directly amenable to simple interventions, are influencing your son’s behavior. I am sure you are doing an excellent job at giving him the most emotional support that you can, given all that is happening. It would be good to know if there have been any recent changes in his school setting, as well, that could be contributing to how he is feeling and acting. In the meantime, to focus on the last part of your last question, when stress reaches ‘catastrophic’ levels, we sometimes use a small amount of risperidone or aripirazole, as examples, to dampen down catastrophic reactive outbursts. SSRIs are also an option – see my previous comments about this class of medicines in one of my earlier responses. I am also left wondering why your son is simultaneously taking Focalin and Ritalin; I would want to make sure that there is a good reason for that…sometimes, they make anxiety worse…

3:58

3:59

[Comment From Suzanne B.Suzanne B.: ]My 8yo son has had chronic constipation since birth. Dx with ASD at age 3.5, with ADHD at 6. We’ve been using Miralax for years, but he sometimes gets backed up and requires an enema. We are trying regular toilet training (after breakfast and dinner) to encourage his system to regulate. My question is about diet. He is a “good eater” (when the amphetamines aren’t suppressing his appetite), and loves all kinds of food. So, I’ve been reluctant to try the GFCF route with him (add inflexibility to an otherwise relatively flexible Aspie). I wonder what you folks think — have you seen benefits to removing casein and gluten in this situation?

3:59 Suzanne B.

3:59

Hi Susan, This is Dr. Dawson. Psychologists and neuropsychologist both have training in behavioral health, but a neuropsychologist has special expertise in testing specific functions of the brain, such as attention, memory, and so on. The neuropsychologist can be especially helpful if you are concerned that your child has a learning disability.

3:59

4:02

[Comment From LisaLisa: ]My almost 4 year son was recently diagnosed with ASD. We also have a daughter in first grade (6 years old) not ASD. What is a good age for us to explain her brother to her? Is too young to understand what autism is?

4:02 Lisa

4:03

Hi Lisa, This is Dr. Dawson. This would be a good time to explain your younger child’s autism to your daughter. She is old enough to understand and it will help her explain her brother’s unusual behaviors to her friends. Check out these links on Autism Speaks’ website that provide resources for siblings.

4:03

4:03

[Comment From GuestGuest: ]What are your thoughts about the value of weighted blankets and weighted lap pillows? My 11 year old son was diagnosed with Aspergers in the 1st grade. His biggest challenge is the ADHD symptoms for which his physician put him on Ritalin. I, however, prefer non-drug methods when possible. He also suffers from sleep issues and is rarely rested… I made him a lap pillow from rice and an old pillow case and he says it “works” but sometimes he just tries to tell me something works because he thinks that’s what I want to hear… I don’t have time (or skill) to make a (safe) weighted blanket, but didn’t want to spend $ on one if it may not be helpful… any other suggestions?

4:03 Guest

4:04

Dear Guest: This is Dr. Horrigan. My experience with weighted blankets has been hit-or-miss. Sometimes they are helpful when there is a clear-cut degree of tactile defensives or if just-the-opposite (flat-out seeking of pressure/contact/hugs/body contact) is present, but you don’t know if it will help until you try it. I would try going up progressively on the weight (e.g. adding progressively more amounts of rice), and asking your son in a clear manner how it feels, if he likes it. If his answers are fuzzy or unconvincing, I wouldn’t persist. They are not for everyone, and I know the branded products can be expensive.

4:04

4:05

From S. Wong
Hello, I have a question regarding my 6 year old son with Autism, who has many food allergies. In a routine urine dipstick and culture test at his Pediatrician’s office in May 2011, we found out through 2 separate urine tests that he repeatedly has a small amount of blood in his urine, but no infection or fever. Again in a follow up in December 2011, he showed a trace amount of blood, in addition to a small amount of protein, with no other symptoms. I suspect that this is a chronic problem with my son, who eats a lot, but has not much weight gain(less than one pound) in the last 6 months. The pediatrician suggested a follow up urine test in a month, but she does not show concern about the small amount of blood and protein.
I would like to know if the blood and protein in urine is considered normal, and if not, what other tests should be pursued to determine the cause? The only supplement that my son is getting is Culturelle and methyl B-12 shots/ once every 3 days. Thank you!

4:05

4:06

SW: This is Dr. Horrigan. There are instances in which people can have a very small amount of blood in the urine and it is not associated with a disease or disorder, and the same would be true for a small amount of protein. What is seen when the urine is looked at under a microscope is important, as is the result of blood tests such as creatinine and BUN. This helps determine whether more substantial testing (e.g. renal ultrasound, or other type of imaging, or maybe even a biopsy) is needed. Also, I would want to know if your son is anemic (low red blood cell count), and whether that influenced your decision to implement methyl B-12. In terms of growth, it would be good to know if your son is staying on his height growth curve, and the degree to which he has shifted away from his normal weight curve – this CDC web site gives an example of the curves that I am talking about (http://www.cdc.gov/growthcharts/data/set1clinical/cj41l021.pdf ).

4:06

4:07

Advance question from Shane: I currently work for an agency that offers an intervention program for infants and toddlers with autism. The program is family-focused in that the vast majority of intervention is aimed at teaching the parents how to intervene, rather than the more traditional aide-based model. In our view, the family is the centre of a child’s life. Teaching parents how to support their child independent of external supports is the greatest strength of our intervention program. However, this model is not without barriers. The most notable barrier to providing this intensive parent intervention is that many of the parents are only weeks from their child’s diagnosis and have yet to adjust to how their life will be different having a child with autism. Understandably, many of the families are simply not ready to participate in the intensive training; they are often not in the right ‘head space’ to participate in the intervention process and would rather Aides provide the support. What advice would you offer to families who find themselves in this moment in their lives? Further, what strategies would you offer to the staff of the organization in finding the balance between helping to support the family while maintaining the intensive philosophy of the parent-focused intervention?

4:07

4:08

Hi Shane. This is Dr. Dawson. It is important to meet parents where they are as you begin your work together. First, if a parent is showing signs of depression or anxiety or is having significant marital distress, referral to a specialist –either a physician or psychologist working in these areas – is recommended. Second, talk with the parent about the things that matter most to his or her. What does the parent find most challenging right now? Is it the inability to communicate? Is it a problem with eating? Is their child having frequent tantrums or aggressive behavior? Start by having the parent identify an area of concern and then help him or her learn strategies for dealing with that concern. If needed, start slow and establish very small goals so that the parent can quickly experience success. It could be as simple as finding appropriate toys or establishing a bedtime routine. Once a parent sees progress – however small – this usually helps alleviate stress and increases optimism and motivation.

4:08

4:09

[Comment From MichelleMichelle: ]Hi! I have a 9 year old son with autism. Lately his flapping has gotten really bad. He flaps near his hear so bad that his ears get red and he scratches his neck. I don’t see any other symptoms that are out of the ordinary, could this just be a phase or should I be concerned? Any suggestions?

4:09 Michelle

4:11

Dear Michelle: This is Dr. Horrigan. Yes, it could just be a phase, as you suggested, but I am wondering if your son is choosing this specific reptetive behavior for a reason. What is coming to mind is whether he has an ear problem; I am thinking about everything from lots of itchy ear wax to a foreign object (e.g. bead in the ear canal) to an ear infection. Has your son’s pediatrician been able to use an otoscope to look in his ears? Otherwise, it will be important to determine the context in which the flapping is occurring, to see if there is a behavioral manuever that can be implemented to redirect it before it gets too severe…

Thursday January 5, 2012 4:11

4:12

Hello. My name is Annette. I am a mother of eleven children. Seven boys… four girls, three of my boys are Autistic, ages 12, 11 & 9. My oldest daughter passed away in a car accident on Dec. 04-11. I explained to my children all at the same time about the death of their sister. I wonder if my three boys really understand what happened and what it means that their sister is now in heaven??? Please help me understand if there is a way to explain it to them that I might try. It’s kind of like the Groundhogs Day movie…. repeating itself over and over with my boys. Thank you

4:12

4:13

Hi Annette. This is Dr. Dawson. I am really sorry to hear about your daughter’s death. You have your hands full with so much responsibility. This must be a very difficult time for you. If your three boys are asking you about it again and again, then you do want to help explain what happened. I suggest you create a “social story” – in other words – a set of pictures that illustrate that their sister was in an accident and her body stopped working and she is now in heaven. Remember that kids with autism are very literal. They may have a hard time understanding that she won’t come back. Even though they are 12, 11, and 9, their ability to understand what happened will be more like a preschool age child. Here is a website that explains how to talk with a preschooler about death: http://www.babycenter.com/0_how-to-talk-to-your-preschooler-about-death_65688.bc?page=2#articlesection2 . Even though it is tiring to respond to their questions again and again, calmly reiterate what happened. Be sure to find the support you need. There are local support groups, as I am sure you know, for parents who have lost a child. Talking with other parents and professionals will help guide you and provide support.

2 4:13

4:14

Advance question from Sheetal: Do autistic babies/toddlers often start to babble much later than typical babies/toddlers and does their babbling differ in any way. Why do teachers and speech therapists often say that it’s a “positive sign” when an autistic baby/toddler produces consonant sounds in babbling even when they have not begun to speak any words yet?

4:14

4:15

Hi Sheetal. This is Dr. Dawson. Studies have shown that infants and toddlers with autism are delayed in babbling and, when they do babble, often they don’t make the same sounds as a typical baby. They make fewer consonant-vowel sounds, such as da-da and ba-ba. Babbling sounds are the building blocks for language, so it is a very positive sign when a toddler with autism begins making these sounds. Therapy can then build on these sounds to “shape” them to become simple words. For example, ba can eventually become ball. When a toddler with autism makes sounds, it is important to reinforce them by imitating them and playing sounds games

4:15

4:16

Comment From Andrea:
Hi Doctors! I have a 22 month old daughter who has been getting aba therapy since she was 18mos.Research has shown that 40 hours a week of therapy gives the best results. So why is it that all of my daughter’s providers don’t agree? She is currently getting 6 hrs a week of aba which will be increased to 10 and we will be adding 1.5 of speech too.

4:16

4:17

Hi Andrea, This is Dr. Dawson. Although early studies on ABA were based on 40 hours of therapy per week, more recent studies have used fewer hours with positive outcomes. For example, in a study that my colleagues published in 2012, toddlers received 20 hours of therapy from a trained provider and parents provided additional help at home by using the therapeutic techniques during their daily routines. The National Research Council, a body comprised on independent experts that inform policy, recommended that young children with autism receive 25 hours of structured intervention each week. This can be comprised of different therapies (ABA, speech-language, and so on). For more information, download Autism Speaks 100-day-kit (http://www.autismspeaks.org/family-services/tool-kits/100-day-kit).

4:17

4:18

Advance question from LS: Not to identify myself and anger my family involved… may I just ask: Could it be possible that a parents life, pre-parenthood, be responsible for creating risk factors of autism in future children? Such as, doing a large amount of drugs in adolescents and early adulthood? Or just certain kinds of illegal drugs being more likely than others to effect their reproductive organs, in either or both future parents?

4:18

4:19

LS: This is Dr. Horrigan. “Epigenetics” is an emerging field that examines the factors that influence whether or not a gene or genes are biologically active. This is different from the study of “genetics” which tends to focus on whether a particular gene or a version of a gene is present or absent. We now know that a wide range of factors such as substance abuse (e.g. cocaine) to stress (which can raise internal levels of hormones that can impact gene expression) are important epigenetic influences, in general, and they can play a material role in the expression of subsequent psychiatric disorders as well as medical illnesses. However, the study of relevant epigenetic factors in autism is at an early stage, and it is too soon to make definitive statements about the role of particular influences such as substance abuse in parents. I anticipate that several relevant epigenetic factors that can clearly influence autism expression will become evident within the next decade, as this is a focus of a lot of ongoing research.

4:19

4:19

[Comment From clairclair: ]i have a 17 year old daughter who is severly autistic and over the last year has displayed rapid cycling behaviour how difficult is it to seperate mental health problems from the autism?

4:19 clair

4:21

Dear Clair: This is Dr. Horrigan. I have to leave in a moment, but I think the best approach is to systematically gather data to look at your daughter’s pattern of cyclist. Then you would look for whether there are environmental/programmatic/contextual things that are occurring that sync up with the times when things are going bad. If not, you then think about psychiatric (or neurological) co-morbidities. For example, bipolar disorder certainly has a cyclical pattern, when it is actually present, and we look carefully at the specific behavioral changes that occur to see if they fall into the manic/hypomanic spectrum before rendering that diagnosis. To make that diagnosis, a family history of mood disorders is also critically important, as is the presence or absence of common accompanying medical difficulties such as migraine headache, atopic disorders (e.g. eczema) and asthma…as examples…. also it would be good to assure that features of a seizure disorder are not present (e.g. complex partial seizures)…this would require a formal neurological evaluation…as a final note, we oftentimes use anti-seizure medicines to treat bipolar disorder

4:21

4:23

Advance question from María in Argentina:
Thank you for this opportunity. I live outside USA but I do think that the situation is similar to USA in these topics
1-Why the psychiatric paradigm is considered the most helpful when there are many unmet needs in families with children diagnosed with ASD of Concomitant medical problems (CMPDs) from immune dysfunction to abnormal answer to strep/herpes infections through GI problems?
2- Why the Early intervention programs do not include biological exploring of CMPs as a routine- not the usual ones, but considering the state of the art in the abnormalities of different subgroups of children with ASD? The combination biology-education has been the most helpful to us in practice- not the psychiatric-genetic.
3-Why are there not efforts to include protocols in practice that take into account the CMPs in children diagnosed with ASD?
4-Why the inflammation and oxidative stress are not routinely explored and treated if present in different subgroups of ASD children?
5-What efforts are being done to these problems to be addressed in practice ?

4:23

4:24

Hi Maria, This is Dr. Dawson. What we now know is that autism is not solely a dysfunction of the brain. It affects the whole body. Autism is associated with a wide range of medical conditions, including as you point out, gastrointestinal problems, oxidative stress and metabolic problems, such as mitochondrial dysfunction, among others. In addition, it is important to screen for exposure to toxins, such as lead and others. Autism Speaks Autism Treatment Network (http://www.autismspeaks.org/science/resources-programs/autism-treatment-network) is devoted to understanding and treating these medical conditions. In addition, we are funding studies on immune dysfunction and infections, mitochondrial dysfunction, oxidative stress, exposure to toxins, and so on. We are investigating biomarkers that could identify children who have specific medical conditions. If these medical conditions are not addressed, we know that children cannot fully benefit from educational and behavioral interventions. Medical conditions can also contribute to problems with aggressions, self-injury, and attention difficulties. Treating the “whole child” is essential to any intervention program and requires a multidisciplinary team.

4:24

4:25

Advance question from STACY: Can an aspergers diagnosis be made if there are minimal to no repetitive behaviors present and the child has some language impairments?….language was slightly delayed but really just more scripted with echolalia till therapy interventions. Language is much more meaningful now. I would like to discuss this with my son’s developmental ped but just wanted some more info first.

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4:26

Hi Stacy, This is Dr. Dawson. Children with Asperger syndrome do not show significant cognitive and language impairments, although slight delays in language are possible. To qualify for a diagnosis of Asperger syndrome, there needs to be evidence of a restricted range of interests/activities or repetitive behaviors, although this can be manifest in many different ways. I recommend that you talk with your doctor about getting a referral to a clinician who specializes in the diagnosis of Autism Spectrum Disorders. To find one in your area, visit Autism Speaks Resources page (http://www.autismspeaks.org/family-services/resource-guide).

4:26

4:27

Thank you all SO much for joining us. Please join us next month, Feb. 2, and every first Thursday at 3 pm Eastern. Be well!

4:27

Categories: Got Questions?, Science, Uncategorized Tags: ABA, ADHD, autism, Autism Speaks, Geraldine Dawson, Geri Dawson, Grandparents, joe horrigan, joseph horrigan, repetitive behaviors, violent behavior

How does research help my child today?

November 25, 2011 jsnydersachs 3 comments

Today’s “Got Questions?” reply comes from Rebecca Fehlig, Autism Speaks national director of field and chapter development

I still remember the day in 2009 when I was sitting in the committee hearing room of our state capitol. We were waiting for the next parent to testify in favor of our Autism Insurance Reform bill—in its second year of battle here in Missouri. Many moms and dads sat in the back with me, clutching their note cards, printed testimonials and handwritten pages. Though we were all nervous, we were eager to tell our stories to the legislators whose decision could make such a huge difference in our children’s lives.

Megan was a local volunteer, autism advocate and parent of two children, one of whom (Henry) has autism. Her hands were shaking a little, but she delivered her message in a calm and confident voice. She was confident the legislators would respond to her personal testimony. Megan explained that she was in extreme debt, had declared bankruptcy and had to sell her home—all to pay for Henry’s autism behavioral treatment. But Megan was not there to complain. She wanted to share Henry’s progress and positive outcomes. Thanks to more than 20 hours a week of early behavioral intervention, Henry had uttered his first words. She told the legislators that her financial sacrifices were well worth that precious reward. But she asked that other families not have to sell their homes and declare bankruptcy for their children to receive treatment for autism. I was not the only one wiping tears at the end of her story.

But the next individual who testified opposed our Autism Insurance Bill. He represented an insurance provider, and he used the same argument that insurance lobbyists were feeding the legislators across the country. “Although we empathize with Megan’s struggle,” he said, “the simple fact is that behavioral therapy is an experimental treatment for autism.” He said it was reckless for insurance providers to pay for experimental therapies and that despite Henry’s improvement, there was no predicting whether other children would benefit.

His words produced gasps around the room. My heart sank.

But wait, this is where the story gets good. Next, Lorri Unumb, Autism Speaks vice president for state government affairs, took the stand. She too shared the progress of her son from intensive applied behavioral analysis (ABA). But it was the next part of her testimonial that every legislator in the room heard loud and clear.

Countering the insurance industry testimony head-on, Lorri stated unequivocally, “ABA is not experimental!” And she had the published research studies to back up her statement.

It didn’t matter whether the studies were done in Missouri or another state. Each study had been vetted and published by a leading scientific journal. The evidence made clear that ABA is far from experimental, and it demonstrated the importance of early intervention in producing the most successful outcomes.

The Missouri House of Representatives voted our bill out of committee that day. It went on to our governor’s desk to be signed into law—all because we had the scientific research to back up our efforts.

Never before had the importance of funding research become so clear to me!

Currently Autism Speaks is funding additional studies that can provide a firm foundation for our advocating that insurers cover additional types of behavioral therapy–such as social skills training, infant-toddler interventions and cognitive behavioral therapies focused on social and communication skills.

And that’s crucial because the downside to our story was that the Missouri bill mandated coverage for some but not all autism treatments. Many more treatment options need to be further investigated to ensure they are safe and produce tangible benefits for those who struggle with autism.

The great news is that Autism Speaks just funded $1.8 million in treatment grants that will further our understanding of the most promising new interventions—not only for children but for all those on the spectrum—from early intervention therapies in underserved communities to job interview training for adults.

We look to these studies to give us the ammunition we’ll need the next time we are sitting in front of a room full of government decision makers. And they would not be possible without your support at our Walks and other fundraisers.

When it comes to helping our children and all those with autism, scientific evidence of benefit puts us on the road to affordable access to therapy. And that means better outcomes. This is what our families deserve and our mission supports.

Autism Speaks continues to work for state-mandated medical coverage for autism interventions. To date, its advocacy efforts have helped secure autism insurance reform laws in 29 states. To learn more about Autism Speaks advocacy efforts, please visit http://www.autismvotes.org.

For more news and perspective, please visit the Autism Speaks science page.

Categories: Got Questions?, Science, Uncategorized Tags: ABA, Applied Behavioral Analysis, autism, autism insurance reform, Autism Speaks, autism spectrum disorder, autism treatment, Autism Votes, early intervention, Government Relations, Lorri Unumb, Rebecca Fehlig, Science, Walks

Fourth Annual World Focus on Autism

September 22, 2011 Autism Speaks 4 comments

: (Back, L to R) Mr. Hassan Ali Bin Ali – Qatar, Mrs. Emine Erdoğan – Turkey, Mme. Raymonde Goudou Coffie – Côte d’Ivoire, Mrs. Valeria Toribiong – Palau, Dr. Pentti Arajärvi – Finland, Mrs. Barbara Miklič Türk – Slovenia, Mrs. Sandra Thomas – Grenada, Dr. Liri Berisha – Albania, Mrs. Natalia Gryshchenko – Ukraine, Mrs. Eloise Gonsalves – Saint Vincent and the Grenadines, Prof. Saima Wazed Hossain – Bangladesh, Dr. Cecelia McCarton – The McCarton School, Mme. Ilham Hussain – Maldives, Mrs. Elsie Christofia – Cyprus, Mrs. Rosella Nestor King – Saint Lucia, Ms. Sue Herera – CNBC (Front, L to R) Mrs. Penehuipifo Pohama – Namibia, Mrs. Sarah Wescot-Williams – Saint Martin, Mrs. Shiranthi Rajapaksa – Sri Lanka, Mrs. Ban Soo-taek – Wife of the Secretary General of the UN, Mrs. Suzanne Wright – Autism Speaks, Mrs. Lorna Golding – Jamaica, Dr. Patience Faka Jonathan – Nigeria, Mrs. Hannah Jurelang Zedkaia – Marshall Islands, Mrs. Ingrid Bouterese – Suriname

For the fourth year in a row Autism Speaks brought together first spouses and esteemed dignitaries, including ministers of health, from more than 30 countries around the globe for the Fourth Annual World Focus on Autism. The event, held on Tuesday, September 20, 2011, was part of an ongoing effort to raise global awareness and share best practices for countries, communities and families struggling with this non-discriminative disorder.

Mrs. Ban Soon-taek, wife of the U.N. Secretary-General, Ban Ki-moon, in her fourth year of attendance joined event hosts Suzanne and Bob Wright of Autism Speaks. Additional distinguished guests included event Co-host Dr. Cecelia McCarton, executive director and founder of The McCarton Foundation and the McCarton School, and emcee Sue Herera of CNBC’s “Power Lunch.”

Attendees convened at The McCarton School, which provides an educational program for children with autism by using an integrated one-to-one model of therapy grounded in Applied Behavioral Analysis (ABA) combined with speech and language therapy, motor skills training and peer interaction. “This school has given so much to our children with autism, and we wanted each of you to experience it firsthand today,” said Suzanne Wright. “It’s here under this roof that the meticulous work to connect with our children with autism takes place.”

United in a global cause, a record number of dignitaries attended, including the first spouses of Albania, the Republic of Cyprus, Finland, Grenada, Jamaica, the Republic of the Maldives, the Republic of the Marshall Islands, Namibia, Nigeria, the Republic of Palau, Saint Lucia, Saint Vincent and the Grenadines, Slovenia, Sri Lanka, and Turkey.

Guests toured the school and met with students, who made glass bead necklaces for the visiting first spouses. Later, the dignitaries assembled to learn about Autism Speaks’ global initiatives – including the annual World Autism Awareness Day celebrated on April 2 and Autism Speaks’ Light it Up Blue campaign; as well as Autism Speaks’ Global Autism Public Health (GAPH) initiative. GAPH initiatives championed by individual countries, as well as regional efforts including the South-East European Autism Network (SEAN) and the South Asian Autism Network (SAAN) were highlighted during the event.

In her opening remarks, Mrs. Ban Soon-taek welcomed the international group on behalf of her husband U.N. Secretary-General Ban Ki-moon stating, “autism touches so many in the world, no matter where they live, no matter how much money they have, no matter their religion, no matter their gender. And like a pebble in a pond, the effects of autism ripple outward to parents, siblings, and caregivers. Autism is at once deeply personal and truly global.”

Speakers at the event included distinguished guests Dr. Liri Berisha, spouse of the Prime Minister of Albania; Dr. Ante Zvonimir Golem, Croatia’s State Secretary for Health and Social Welfare; Professor Saima Wazed Hossain, daughter of the Prime Minister of Bangladesh; and Professor A.F.M. Ruhal Haque, MP, F.R.C.S, Bangladesh’s Minister of Health and Family Welfare; as well as Autism Speaks Vice President of Scientific Affairs Dr. Andy Shih. Each speaker offered remarks on the significance of fostering global partnerships in combating the global public health crisis of autism.

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‘World’s First Ladies Take on Autism’ in the The Wall Street Journal.

Categories: Awareness Tags: ABA, Applied Behavioral Analysis, autism, Autism Speaks, Fourth Annual World Focus on Autism, Light It Up Blue, McCarton School, Mrs. Ban Soon-taek, South Asian Autism Network, South-East European Autism Network, Sue Herera, The McCarton Foundation, The Wall Street Journal, United Nations

My Autism Team

July 19, 2011 Autism Speaks 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 belief: It 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.

Categories: Awareness, Family Services Tags: ABA, autism, Autism Speaks, Barbers, Dentists & Dental Anesthesiologists, Developmental Pediatricians, Doctor, Family Practice Doctors, Gastroenterologists, My Autism Team, Occupational Therapists, Respite care, Speech Pathologists, Summer camps, therapy

Sound Bites – Autism Tidbits from IMFAR 2011

May 14, 2011 Autism Speaks 9 comments

This is a guest blog post from Autism Speaks Science Board member John Elder Robison, author of Look Me in the Eye: My Life with Asperger’s and Be Different: Adventured of a Free-Range Aspergian.

There is a lot of talk about the need for therapies for adults with autism. A review of emerging adolescent therapies suggests that many can be applied to adults with minimal adaption. Testing/validating of what we have will be a lot less costly than developing something new.

Stem cell research may ultimately hold a key to autism, as we learn to grow brain sections of mice in the lab. That skill may translate to humans within a decade.

More and more, scientists agree that autism is the result of genetic predisposition and a trigger. Many hoped the “trigger” was a simple chemical like mercury, but we are realizing there are both environmental and disease triggers. Unfortunately, knowing they are there does not make them any easier to find. Identifying pathways into autism for a large part of our population remains an elusive goal.

One of the things that pleased me most at this year’s IMFAR conference was the way that advocates and journalists are finally coming together and finding common ground. “As Thinking Person’s Guide to Autism” editor Shannon Rosa said, science doesn’t have a hidden agenda…

This year’s Autism Speaks “Autism Connects” technology competition drew over 130 technical and engineering students to develop tools to help people with communication disabilities. For me, the most important take-away was not the entries themselves but the realization that we have so much to gain by drawing technical people from other fields, like industrial design and computer science into autism research.

For some time we have known that that therapies like ABA teach behaviors, not feelings. For example, we (autistic people) can learn to read a face and realize, “he’s happy,” but that logical knowledge does not often translate to us experiencing the feeling. At this year’s IMFAR Susan Bookheimer of UCLA spent quite a bit of time showing me what imaging studies are teaching us about how we may soon help autistic people feel that happy message and thereby feel happy themselves. That will represent a quantum leap in the power and effectiveness of therapy.

I’ve heard comments about “the rolling walk of autistic people” before. This year I saw results of a study from the University of Fairfield that actually quantified differences in gaits between autistic and NT people. Why do we walk in a sawtooth pattern where NT people walk in a straight line? The researcher had some ideas, but why remains a mystery.

For years people have looked at nonverbal people (autistic or otherwise) and wondered… what’s going inside their brains? If a person can’t talk, they can’t take a conventional IQ test, and rightly or wrongly, many have been presumed intellectually disabled for lack of evidence to the contrary. Today, researchers are using both high precision EEG and fMRI imaging to measure brain patterns in response to stimuli. For example, when a person sees a cat and hears the word cat there is one characteristic pattern of activity. When the person sees a cat and hears dog, the mismatch causes a different activation. We can measure those responses, even in people who don’t talk, and thereby gain insight into how much they are perceiving and thinking, and how fast. Understanding is the precursor to therapy.

This year many scientists who have family members on the spectrum proudly wore stakeholder ribbons on their name tags. At the stakeholder lunch, we discussed the balance between funding community services and funding science. Without science, all we have to care for the disabled is faith and compassion. The addition of science-based medicine is what’s taken us from life in the Middle Ages to where we are today. Science provides the foundation to make community and family services work better. That’s why we need it.

When I spoke at the luncheon yesterday, I reminded people that we are all sitting here in safety, but in the middle of our country, one hundred million pounds of water are flowing past Red River Landing on the Mississippi River every single second, and the rate is rising still. That flood could cause the loss of the Old River Control Structure, which is what keeps the Mississippi from changing course and flowing to the Gulf at Morgan City instead of New Orleans. If that happens as a result of this historic flood (already greater than any we’ve seen in 80 years) our country could be facing the worst natural disaster in its history.

If you’re a praying person, now is the time to pray for all those people in the Mississippi floodplain. As much as I believe in science and engineering, if I had to lay money on the Army Corp of Engineers or Nature, I’d have to choose nature.

Why Nature? In the world of autism, the brain nature has given us provides the most complex puzzle man has ever attempted to solve. Out on the river, this flood shows once again how all our science and technology sometimes fades to insignificance before the natural world. Yet we go forward with faith that science will bring us the solutions we need, both on the river and in our heads.

On a personal note, I was pleased to see grad students and researchers whose work I have supported through my participation in review boards bringing the fruits of their work to IMFAR. It made me feel like I had a small part in the collective success of our group, and that feels good.

I was also thrilled to see that Alex Plank (a young man with Asperger’s) was filming the conference and he’ll be sharing it soon on the Autism Speaks and Wrong Planet websites, and elsewhere.

In closing I’d like to thank all the friends I’ve made in this community, and also the folks at INSAR and Autism Speaks, who made it possible for me to attend this conference. I’ll see you next year in Toronto!

Woof!

Categories: Science Tags: ABA, Alex Plank, autism, Autism Speaks, IMFAR, INSAR, International Meeting for Autism Research, John Robison, Missippi, Natural Disasters, Shannon Rosa, Stem Cell research, Susan Bookheimer, Thinking Person's Guide to Autism

In Memoriam: Dr. O. Ivar Lovaas (1927-2010)

August 5, 2010 Autism Speaks 16 comments

From left to right: Dr. Lovaas, Nina Lovaas, Gary Mayerson

Editor’s note: On August 2, 2010, Dr. O. Ivar Lovaas passed away. We sincerely thank Dr. Lovaas for all of his contributions to the autism community.

In 1981, with the publication of Dr. Lovaas’ pioneering work, Teaching Developmentally Disabled Children (popularly known as “The ME Book”), the landscape of the world of autism was quite different than it is today. In 1981, the prevalence of autism in the general population was reported to be only 4 in 10,000, hardly the 1 in 100 world epidemic that autism represents today. While considered a relative rarity at the time, a diagnosis of autism in the 1960’s and 1970’s was considered by most to be the beginning of a countdown to institutional care. To add insult to injury, Bruno Bettelheim and others were disseminating and perpetuating the notion that autism was caused by cold and unfeeling “refrigerator mothers” and other forms of inadequate parenting. For much of the latter part of the last century, families of children with autism had little, if anything, to hope for.

Dr. Lovaas, who had already been working with children with autism for decades, knew better. Dr. Lovaas knew instinctively that poor parenting was not to blame. However, finding the root cause of autism was not Dr. Lovaas’ chosen mission. Instead, Dr. Lovaas focused his energy and attention on developing effective teaching strategies. Dr. Lovaas believed that children with autism could “learn to learn.” Back in the day, this was considered by many to be an unreachable star.

Just as Thomas Edison’s numerous lightbulb failures paved the way for Edison’s ultimate success, Dr. Lovaas painstakingly identified the “serious mistakes” that he and his colleagues at UCLA had made over the course of two decades in attempting to teach children with autism and other severe developmental disabilities. Dr. Lovaas knew that the first step to finding an effective, core intervention would be to identify and eliminate the various approaches and strategies that had been tried, but which were demonstrably ineffective. Dr. Lovaas then worked tirelessly to break down the large and general problem of “disability” into manageable and separate behavioral units. Through years of trials, Dr. Lovaas further refined his behavior modification techniques and approaches. Over time, Dr. Lovaas’ work in the field became recognized to the point that for many, “Lovaas” became synonomous with the term “Applied Behavior Analysis.”

During the 1980’s, Dr. Lovaas and his colleagues at the UCLA Young Autism Project further refined their behavioral approaches, and they were fortunate enough to receive an important grant from the NIH allowing a most unusual and intensive approach that had never before been attempted—a forty hour per week one-to-one teaching program. In 1987, the results of Dr. Lovaas’ study, entitled Behavioral Treatment and Normal Educational and Intellectual Functioning in Young Autistic Children, were published in the Journal of Consulting and Clinical Psychology, a respected peer review journal.

While there certainly was some controversy over the precise “design” of Dr. Lovaas’ study, there had never before been a study reporting such a favorable outcome—many of the students who had been receiving a 40 hour per week intervention program for approximately 2-3 years had recovered function to the point that they were considered virtually indistinguishable from their typically developing peers. A 1993 follow-up study appearing in the American Journal on Mental Retardation confirmed that some six years later, all but one of the children in the “best outcome” group had retained the gains reported in the 1987 study. In 1998, the Surgeon General’s Report on Autism referred to Dr. Lovaas’ 1987 study as a “well designed study” that “….demonstrated the efficacy of applied behavioral methods [ABA] in reducing inappropriate behavior and in increasing communication.” Vindication!

In 2002, Dr. Lovaas asked me to write a chapter on ABA litigation for his then upcoming update to The ME Book, Teaching Individuals With Developmental Delays (Pro-Ed). Dr. Lovaas told me in the charming Norwegian accent that he never seemed to lose despite living in this country for many decades that his greatest wish was that every parent, whether residing in California, New York or Alaska, would have access to effective autism treatments. Dr. Lovaas regularly spoke of the need for insurance reform, as he knew full well the devastating impact autism can have upon the family. The dedication appearing in Dr. Lovaas’ latest book speaks volumes as to his empathy and compassion for the family: “This manual is dedicated to all parents of children with developmental delays in recognition of the heavy burdens they carry, and the models they provide for all parents to follow.”

I last sat with Dr. Lovaas and his lovely wife, Nina, at the Autism Speaks’ benefit concert in Los Angeles, headlined by Paul Simon and Jerry Seinfeld. Dr. Lovaas was truly pleased to see how far public awareness of autism had come. He also has a special appreciation for Jerry Seinfeld’s jokes, ostensibly because so many of them are based on the nuances of human behavior.

Dr. Lovaas’ pioneering work has not only helped, but has profoundly changed the lives and futures of thousands of affected children and their families. Dr. Lovaas’ work continues to have a profound impact on the professional development of today’s autism professionals. Perhaps most importantly, where once there was darkness, Dr. Lovaas brought light and genuine hope.

The autism community clearly has lost a giant.

This guest post is by Gary Mayerson. He serves on the board of Autism Speaks and is the founder of Mayerson & Associates, the first law firm in the nation dedicated to representing children and adolescents with autism spectrum disorders.

Categories: Autism in the News Tags: ABA, autism, Autism Speaks, disability, Dr. O. Ivar Lovaas, Gary Mayerson, in memoriam, UCLA Young Autism Project

How Becoming a Therapist Changed My Life

July 1, 2010 Autism Speaks 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: ABA, behavior, therapy

My Five-Year-Old Child Does Not Talk … Will He Ever?

May 13, 2010 Autism Speaks 141 comments

This guest post is by Connie Kasari, Ph.D., a Professor of Education and Psychiatry and the Center for Autism Research at UCLA.

This is the question and the worry for a quarter to about half of all parents of children with autism. Research studies tell us that children who can talk by the time they turn five years old have better outcomes. But is this age marker meaningful, and what does it mean exactly?

The extraordinary success of early intervention programs has been shrinking the numbers of children who remain nonverbal. Still many children develop slowly, becoming late speakers if at all. What do we know that helps these children?

Late speaking children were the subject of a recent review paper, which was selected as one of Autism Speaks’ Top 10 Scientific Achievements in 2009 (Pickett, Pullara, O’Grady & Gordon, 2009). The authors found 64 studies involving 167 children who learned to speak after age five. Several important observations were noted. First, the authors found that while most children who learned to speak were between five and seven years some children learned to speak for the first time at age 13 years! The majority of children learned single words, but some were able to speak in sentences. Finally, the numbers they report are probably an underestimate of actual cases since researchers often exclude children who are nonverbal, or under-report late speaking children. Therefore, it may be harder to learn to speak after age five, but it is clearly not impossible.

What types of interventions are helping children to speak? Several approaches look promising. Both behavioral interventions and ones using augmentative and alternative communication devices (AAC) seem to work. AAC approaches (examples include PECS, sign language and speech generating devices) do not seem to inhibit the development of spoken language (Schlosser & Wendt, 2008); however, for many children the use of AAC allows them to become communicators without reliance on spoken language. Thus, AAC interventions need to be adopted more often and studied.

Applied behavior analysis (ABA) is the most common approach to teaching children with autism; however, the results of intensive training have not always improved spoken language. A promising hybrid behavioral and developmental intervention focuses on ‘joint attention’, nonverbal gestures that develop before children learn to speak with words, and involve the sharing of attention between a person and an object or event. Preschool aged children who received a joint attention intervention made greater language gains than children receiving traditional applied behavior analysis interventions (Kasari et al, 2008) but it is not clear if similar interventions will work with older children.

At UCLA we are beginning to test out whether a joint attention intervention will be effective for children who are nonverbal and older than five years. The study is an Autism Speaks funded High Risk, High Impact study for Characterizing Cognition in Nonverbal Individuals with Autism (CCNIA). This multi-site study involves researchers from UCLA, (Connie Kasari) Kennedy Kreiger Institute (Rebecca Landa) and Vanderbilt University (Ann Kaiser). We are comparing our joint attention intervention with a focus on spoken language (using Enhanced Milieu Training; Kaiser, Hancock & Nietfeld, 2000) to an intervention involving the use of a speech -generating device. A unique aspect of this study is the use of an alternating treatment design, recognizing that children may need a sequence of treatments for best response, or may respond better with one treatment versus another. This design is called a SMART design (sequential multiple assignment randomization trial –SMART; Murphy, 2005). Our goal is to determine the most effective intervention for increasing communication competence of children who are nonverbal, recognizing the variability in characteristics of these children, and the individualized nature of their response to treatment.

So the good news is that language development CAN progress after age five, but stay tuned for more research!

Kaiser, A. P., Hancock, T. B., & Nietfeld, J. P. (2000). The effects of parent-implemented enhanced milieu teaching on the social communication of children who have autism. Journal of Early Education and Development [Special Issue], 11(4), 423-446.

Kasari, C., Paparella, T, Freeman, S.N., & Jahromi, L (2008). Language outcome in autism: Randomized comparison of joint attention and play interventions. Journal of Consulting and Clinical Psychology, 76, 125-137.

Murphy SA. (2005) An Experimental Design for the Development of Adaptive Treatment Strategies. Statistics in Medicine. 24:1455-1481.

Pickett, E., Pullara, O, O’Grady, J., & Gordon, B. (2009). Speech acquisition in older nonverbal individuals with autism: A review of features, methods and prognosis. Cognitive Behavior Neurology, 22 1-21.

Schlosser, RW, & Wendt O (2008). Effects of augmentative and alternative communication intervention on speech production in children with autism: A systematic review. American Journal of Speech-Language Pathology • Vol. 17 • 212–230.

Categories: Science Tags: ABA, autism, communication, early intervention, non-verbal, older children, Top 10 research achievements

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