Live chat on autism - June 2007

2007-06-13 15:04:49.0 Susan Brink: Welcome. I’m Susan Brink and I’m talking to Areva Martin about autism. We’ll be happy to hear your comments and answer your questions.

2007-06-13 15:04:54.0 LAChilds: Can I ask a question?

2007-06-13 15:04:56.0 LAChilds: Is there research showing that children with autism can be mainstreamed?

2007-06-13 15:06:04.0 Areva Martin: There are a myriad of experts who believe that children with autism learn best by being in a mainstream environment. I have mainstreamed my son for several years and i have helped other kids mainstream.

2007-06-13 15:06:40.0 LAChilds: What changes have you seen in your son since he’s been mainstreamed?

2007-06-13 15:07:10.0 Areva Martin: He has made dramatic changes in his speech and communication, as well as his academic skills.

2007-06-13 15:07:41.0 Susan Brink: Mainstreaming isn’t for all kids, however. Unfortunately, a lot depends on when a child is diagnosed, and how early treatment begins.

2007-06-13 15:08:31.0 Areva Martin: Absolutely, some children do better in more structured enivronments, but parents should always explore the possibilities of mainstreaming even if its for a small part of the day.

2007-06-13 15:08:36.0 Susan Brink: People who are just coming into the chat room, please ask your questions.

2007-06-13 15:08:40.0 HotToddy: Hi Areva and Susan-- do you think that the media coverage, what we hear about autism, is fair? Do we get balanced information from the press?

2007-06-13 15:09:36.0 Areva Martin: I think that the media was focused on children with lots of resources. More recently, it is portraying the realities of families who do not have access to the “gold star” standards and thier real life issues.

2007-06-13 15:09:59.0 Susan Brink: The media are plural. It’s hard to speak for all outlets, from newspapers to television. I think health reporters are quite fair and thorough in coverage of autism, always looking for what is new.

2007-06-13 15:10:05.0 LAChilds: Are there support groups for parents of autistic children?

2007-06-13 15:10:34.0 Areva Martin: There are lots of groups, many of which are affiliated with regional centers and parent empowerment centers.

2007-06-13 15:11:52.0 Areva Martin: I suggest that you check with your local regional centers and or school districts.

2007-06-13 15:11:56.0 jbabcock@dor.ca.gov: This is Sandra Hamel, Statewide Supported Employment Coordinator for the Department of Rehabilitation (Central Office in Sacramento). Our Mission at the Department is “to provide services and advocacy resulting in employment, independent living and equality for individuals with disabilities.” Supported Employment does this by providing support to consumers with most significant disabilities such as autism spectrum disorders. So far I have not found much information about how to mainstream these consumers in employment. Do you know of any resources you can share?

2007-06-13 15:13:54.0 Areva Martin: There are some local agencies like AbilityFirst that have programs which provide opportunities for adults to work in environments which are both mainstream and restricted. Unfortunately, with autism, there are just not a lot of services for adults period. Hopefully, with all of the attention, we will see more programs developed. The Blue Ribbon Comm on Autism has an aging out taskforce which is studying these issues.

2007-06-13 15:14:14.0 Susan Brink: I don’t know, but it speaks to the importance of getting proper education for children so that when they’re beyond school age they can become independent.

2007-06-13 15:14:19.0 LAChilds: Is autism caused by vaccinations?

2007-06-13 15:15:23.0 Susan Brink: All the recent research that I’m aware of so far is that there is no connection. However, the LA Times Health section will have a story exploring that issue on Monday.

2007-06-13 15:15:29.0 Areva Martin: Interesting question, which causes lots of debates. So far, the scientific community reports that there is not a connection between the two, but many parents feel differently and there are lawsuits pending related to this issue.

2007-06-13 15:15:51.0 HotToddy: Areva, do you know what contributed to the media shift toward less affluent families with autistic children? Did something spur that?

2007-06-13 15:16:51.0 Areva Martin: I think it was spurred by parent organizations and non-profit groups that work with underserved communities. I know my non-profit, special needs network, has been beating this drum for two years now.

2007-06-13 15:17:06.0 Susan Brink: I found out about Areva’s efforts, with Donna Ross-Jones and the Special Needs Network. That was the first I had heard of an effort to educate people in less affluent communities so directly and thoroughly.

2007-06-13 15:18:11.0 Susan Brink: What has happened so far with autism claims that the disorder is associated with vaccinations?

2007-06-13 15:19:14.0 Polly: Is it common for siblings to be autistic?

2007-06-13 15:19:22.0 Areva Martin: According to statistical information, 298 claims have been adjudicated and all have been dismissed. The nine test cases that have been selected and their outcomes will have a significant impact on thousands of families.

2007-06-13 15:20:30.0 Areva Martin: There is research which shows that there is a high incidence of siblings who are diagnosed. UCLA is involved with genetic research which hopefully will shed more light on these issues. But i work with families who have two and three children with autism.

2007-06-13 15:21:22.0 Susan Brink: I don’t know the definitive science on siblings, but you might search pubmed for autism and siblings.

2007-06-13 15:21:43.0 Administrator: I have known a number of people who had children diagnosed with either autism or Asperger’s syndrome who later received the diagnosis themselves, as adults...suggesting there could be something genetic

2007-06-13 15:22:05.0 Administrator: And by the way, I am Rosie Mestel, deputy health editor

2007-06-13 15:22:07.0 Mieko: i’m a mother of an 8yr boy dianosed with servere autism and a story to tell, i work acroos the street for Los Angeles times if you would like to hear my story, I’m a real mom not wealthy mom that the “media” shows on TV...it’s a shame that “autism education and oh the Poltics in receiving services...i could write a book!! and my son is only 8 WE NEED MORE MEDIA ATTENTION AS THE IN CA IT’S NOW 1 OUT OF 150

2007-06-13 15:23:32.0 Areva Martin: I agree with you. And the times is definitely leading the way in making the issues of real people public. I hope that other media outlets will follow.

2007-06-13 15:23:36.0 HotToddy: Since a lot is still not known about autism, is there any guess as to how many people have it but are undiagnosed? Do you think it’s a terribly large number?

2007-06-13 15:24:35.0 Areva Martin: There are some reports that large numbers of children go undiagnosed, particularly those that end up in the juvenile justice system. WIthout more access to diagnosis and intervention, this number will remain unknown.

2007-06-13 15:24:40.0 jbabcock@dor.ca.gov: Sandra Hamel of DOR again: There has been considerable concern that there is a link between thimerosal, a mercury-based preservative used in vaccines, and autism. Until 1999, vaccines against such diseases as diphtheria, tetanus, pertussis, Haemophilus influenzae b (Hib), and hepatitis B contained thimerosal as a preservative. The MMR, varicella (chickenpox), inactivated polio (IPV) and pneumococcal conjugate vaccines have never contained thimerosal. Currently, with the exception of some influenza vaccines, none of the vaccines used in the U.S. to protect children contain thimerosal as a preservative (NIMH, 2007).Getting back to my thread: Are you referring to the Legislative Blue Ribbon Commission on Autism? How would I contact them? I am also interested in contacting Autism society of America chapter in California or the Mind Institute in California, if you have any information.

2007-06-13 15:25:26.0 Areva Martin: I suggest that you contact me off line to get contact information for these groups.

2007-06-13 15:25:51.0 Areva Martin: Send me an email at amartin@martin-martin.net

2007-06-13 15:25:54.0 JerryKrantman: I am the Early Start Coordinator at a Regional Center in northern California. I’ve heard a lot of good things about Greenspan’s “Floortime” approach with children with autism. On the other hand, I’ve heard a lot of negative talk about it because it is not “evidence-based”. Is this approach currently gaining or losing ground among autism professionals?

2007-06-13 15:26:58.0 Areva Martin: In school settings, ABA and discrete trial training are definitely used more often. However, many professionals still believe that floor time is an important therapy and that if used with ABA models, it can be effective.

2007-06-13 15:27:05.0 HotToddy: Is it common for adults to be diagnosed with autism?

2007-06-13 15:28:02.0 Areva Martin: The number of adults diagnosed pale in comparison to children, but if someone believes that they have autism, they should consult with a local regional center for evaluation.

2007-06-13 15:28:09.0 Susan Brink: There is a spectrum of disorders, and some of the milder forms can escape diagnosis until adulthood.

2007-06-13 15:29:10.0 Administrator: I have known some adults who received a diagnosis and felt it to be a great relief--that it explained a lot of things about their lives that they had not understood before

2007-06-13 15:29:44.0 jbabcock@dor.ca.gov: Sandra Hamel of DOR again: How aboutpositive behavior support (PBS) approaches?

2007-06-13 15:30:05.0 Administrator: what is PBS? can you explain a little?

2007-06-13 15:30:58.0 Areva Martin: Yes, many districts employ positive support strategies to redirect negative behavior and to teach positive behaviors. Again, different interventions are appropriate based on the child’s functioning level.

2007-06-13 15:31:05.0 Polly: At what age do children usually begin showing signs? My sister’s triplets all seem normal, but one seems to be lagging at the age of 2.

2007-06-13 15:32:17.0 Areva Martin: Many children show signs as early as 6 to 9 months. The CDC has a great website which provides information on the early warning signs. I highly recommend that your sister investigate further because early diagnosis and interventions are key to successful outcomes.

2007-06-13 15:32:20.0 Administrator: if you’ve just joined the chat, please feel free to post your questions and comments

2007-06-13 15:32:24.0 HotToddy: Areva, you said your child is mainstreamed-- are there cases when that just won’t work? Or do you think all autistic kids should be?

2007-06-13 15:32:42.0 Susan Brink: It’s best if children can be diagnosed by the age of two, but unfortunately a lot of children are older. Some research holds the hope of very earlier diagnosis, but such tests are not yet available.

2007-06-13 15:33:22.0 Areva Martin: All kids will not respond to mainstreaming, however, I strongly believe that all children with autism can benefit from their typical peers whether its at school, on the playground or in some other setting.

2007-06-13 15:34:12.0 Susan Brink: To Hot Toddy, I think if children are diagnosed at later ages,with more severe symptoms, it could be difficult to mainstreatm them.

2007-06-13 15:34:16.0 jbabcock@dor.ca.gov: I just heard about positive behavior support (PBS) today from Cathy L Pratt [prattc@indiana.edu]. She wrote “Many of us use positive behavior support approaches. The goal of ABA is to address behavior excesses and deficits, and to teach new behaviors. However, I would hope that adult agencies would use a strong PBS approach. “

2007-06-13 15:34:17.0 bendlevin: I am an adult with asperger’s syndrome, I agree with the comment that a concrete diagnosis is extremely beneficial and explained a lot of my childhood frustrations

2007-06-13 15:34:51.0 Susan Brink: Can you tell us a bit more?

2007-06-13 15:35:39.0 bendlevin: I was undiagnosed until my early twenties, previously I had been diagnosed with some sort of mental illness

2007-06-13 15:35:57.0 bendlevin: autism (aspergers) made a lot more sense to me then mental illness

2007-06-13 15:36:25.0 Susan Brink: I’ve heard similar stories of relief from late-diagnosed ADHD and other conditions as well. I can imagine the relief of being properly diagnosed.

2007-06-13 15:36:27.0 Areva Martin: Unfortunately, many adults and children are misdiagnosed. Commonly, its believed that individuals with autism also have mental retardation. But studies debunk this myth.

2007-06-13 15:37:17.0 Administrator: What are the top two things that educators can do to help parents secure the education they need for their child with autism?

2007-06-13 15:38:37.0 Susan Brink: In watching parents groups over the past year, it seems to me that simply understanding the law, and being insistent that schools are providing speech therapy if there’s a speech problem, etc. helps a lot. Know the law, and be very specific about what you ask for.

2007-06-13 15:38:46.0 Areva Martin: Parents who have any concerns about their child’s development, immediately consult with a developmental pediatrician or other trained professional. You can also seek an evaluation from a local regional center or school if your child is 3.

2007-06-13 15:39:59.0 JerryKrantman: To clarify: Seek an evaluation from your regional center if your child is under three or from your local school if three or over.

2007-06-13 15:40:16.0 Administrator: Thanks Jerry, for the clarification.

2007-06-13 15:40:20.0 Areva Martin: I agree Susan, that information is key. Parents must not only know their rights, but they must also be prepared to insist that services are provided. When in doubt, parents should seek out advocates and others to assist them.

2007-06-13 15:40:37.0 Areva Martin: Yes, Jerry--thanks for the clarification. The key again, is seeking help sooner rather than later.

2007-06-13 15:40:53.0 HotToddy: Are there many cases where schools fall short? Do public schools just not have the funding?

2007-06-13 15:42:00.0 Susan Brink: One thing that stands out from my research is that a parent should never go into a school meeting alone. Bring family members, anyone who can help advocate for the child. There will be a lot of people on the other side of the desk, so bring in all the informed troops you can find for your side of the desk.

2007-06-13 15:42:41.0 Areva Martin: This is a very hot topic and subject of much debate. I sit on a task force with educators and some believe the schools are doing a good job in providing interventions and appropriate placements. However, others believe that the overwhelming number of children who have entered school over the last 5 years prevent districts from providing comprehensive programs. Also, many parents believe that schools quite simply are not doing enough.

2007-06-13 15:43:28.0 Susan Brink: Funding is a problem, HotToddy. But it is a society-wide problem, and can’t fall in the shoulders of special needs kids any more than it should fall on the shoulders of any other kids.

2007-06-13 15:43:32.0 Polly: What’s the best website to find resources on autism?

2007-06-13 15:44:24.0 Areva Martin: I suggest starting with the Center for Disease Control. It has great information on early warning signs.

2007-06-13 15:44:26.0 HotToddy: Would it be appropriate to bring a social worker to a school meeting?

2007-06-13 15:45:16.0 Areva Martin: Absolutely. I encourage parents to bring anyone who can be a source of support and or who knows the child. Often times meetings are extremely emotional, so having support is critical.

2007-06-13 15:45:20.0 Polly: Is there any indication that diet can affect autism?

2007-06-13 15:46:09.0 Areva Martin: Yes, there are some experts who believe that diets play a key role and many parents use a wheat free/gluten free diet. Most of these families find that these special diets help with behavior and communication.

2007-06-13 15:47:05.0 Polly: Do doctors know what it is about wheat or gluten that influences the behavior?

2007-06-13 15:48:24.0 Areva Martin: Some children with autism have very significant digestive problems similar to seliac disorder. So by removing the wheat and gluten from a child’s diet, they believe they are improving conditions related to digestion, etc.

2007-06-13 15:48:52.0 Areva Martin: Celia Disorder--no S, but C

2007-06-13 15:49:22.0 Administrator: And does that mean the children are less distressed, more able to concentrate on learning?

2007-06-13 15:49:39.0 Areva Martin: That is the theory.

2007-06-13 15:50:25.0 Areva Martin: However, I caution families to explore these issues with a medical doctor before altering a child’s diet. Also, special diets can be very difficult to monitor for children with autism.

2007-06-13 15:51:17.0 Susan Brink: Thank you for your comments and questions. We’re about ready to wrap up. Thanks Areva, and everyone.

2007-06-13 15:51:35.0 Administrator: Yes, thank you all for joining us.

2007-06-13 15:51:39.0 HotToddy: Thank you both! You’ve been very helpful.

2007-06-13 15:51:40.0 Polly: Thank you!

2007-06-13 15:51:50.0 Areva Martin: Thank you Susan for this important discussion.

2007-06-13 15:52:15.0 jbabcock@dor.ca.gov: Thanks!

2007-06-13 15:52:16.0 JerryKrantman: Thanks, everyone.

2007-06-13 15:52:19.0 Administrator: There will be a transcript of this chat available at latimes.com/health

2007-06-13 15:55:04.0 bob: Is it possible to view this entire chat?

2007-06-13 15:55:43.0 Administrator: Yes, go to latimes.com/health in about one hour and it should be there. any problems, email health@latimes.com. thanks bob for your interest.