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Chat Recap: Autism, And What It Means For Your Child

 Autism Awareness Chat(04/11/2011) 
8:46
Sarah Cody: 
Good morning, everyone! Our live chat in honor of Autism Awareness Month will begin in about 14 minutes. I am Sarah Cody, Fox CT reporter and Mommy Minute Blogger for The Hartford Courant. This should be a very interesting hour!
Monday April 11, 2011 8:46 Sarah Cody
8:56
Sarah Cody: 
We should be joined by Marcela Nunez of the Innovative Autism Network and Dr. Michael Stevens of Hartford Hospital's Institute of Living any minute now...
Monday April 11, 2011 8:56 Sarah Cody
8:58
[Comment From Michael StevensMichael Stevens: ] 
Hi Sarah.
Monday April 11, 2011 8:58 Michael Stevens
8:58
Sarah Cody: 
Good morning, Dr. Stevens! Thanks so much for joining us.
Monday April 11, 2011 8:58 Sarah Cody
8:59
[Comment From Michael StevensMichael Stevens: ] 
Of course... Thanks for the invitation.
Monday April 11, 2011 8:59 Michael Stevens
8:59
Sarah Cody: 
We'll get started in one minute or so.
Monday April 11, 2011 8:59 Sarah Cody
9:00
Marcela Nunez,-BCBA-Innovative Autism Network Director of Services: 
good morning
Monday April 11, 2011 9:00 Marcela Nunez,-BCBA-Innovative Autism Network Director of Services
9:02
Sarah Cody: 
Good morning, Marcela. Let's get started! Dr. Stevens, where do Autism statistics stand right now?
Monday April 11, 2011 9:02 Sarah Cody
9:03
[Comment From Doriana VicedominiDoriana Vicedomini: ] 
Good Morning!
Monday April 11, 2011 9:03 Doriana Vicedomini
9:03
[Comment From Michael StevensMichael Stevens: ] 
Research has shown that autism and other disorders are more prevalent than previous thought. The most often-cited statistic is that it occurs in 1 of ever 166 children. It's not clear yet whether the actual incidence of autism is on the rise or if increased awareness through large efforts at outreach has made parents and physicians more aware of the condition.
Monday April 11, 2011 9:03 Michael Stevens
9:04
Sarah Cody: 
There have been some new studies published in the last week or so. One, out of the University of Montreal, said that the autistic brain centers more attention on visual identification. Thoughts, Dr. Stevens?
Monday April 11, 2011 9:04 Sarah Cody
9:05
[Comment From Doriana VicedominiDoriana Vicedomini: ] 
Actually the stats that came out in 2010 from CDC were 1 in 110 , 1 in 70 boys. New stats coming out will show a further increase.
Monday April 11, 2011 9:05 Doriana Vicedomini
9:05
Sarah Cody: 
Good morning, Doriana. Thanks for being part of this discussion.
Monday April 11, 2011 9:05 Sarah Cody
9:07
Sarah Cody: 
Dr. Stevens: in your opinion, what does the prevalence mean? Are researchers looking at environmental factors? Genetic factors?
Monday April 11, 2011 9:07 Sarah Cody
9:08
[Comment From Michael StevensMichael Stevens: ] 
Neuroscientists have been looking for a long time at several different cognitive "systems". Obviously, social and emotional systems are of key interest, because these reflect some of the key impairments shown in children and adults with autism. Other work looks at communication impairments. But what research has also started to turn towards is study of attentional systems.... For example, why is there such a restricted focus of attention on certain factors. This has highlighted differences in neural function in both frontal lobe and visual systems. Research is looking at numerous factors that could "cause" this, including specific genetic profiles, liability genes, or similar risk factors.
Monday April 11, 2011 9:08 Michael Stevens
9:09
Sarah Cody: 
Another new study, published in the journal Pediatrics, suggested that autism treatments are falling short. And that medications are controversial.
Monday April 11, 2011 9:09 Sarah Cody
9:10
Sarah Cody: 
Dr. Stevens: how should the public feel about ongoing research? Is the funding there? Are real strides being made?
Monday April 11, 2011 9:10 Sarah Cody
9:12
[Comment From Michael StevensMichael Stevens: ] 
Publicly-funded research is always a difficult and slow process. There is increasing pressure from Congress to reduce funding to the National Institutes of Health. The long-term view is, unfortunately, that with less funding available to the fields of psychiatry and neuropsychiatry, the fewer professionals will create research careers. Answering complex questions about what treatments work, and what "causes" disorders requires a large effort, sustained over time. Progress is being made, but haltingly.
Monday April 11, 2011 9:12 Michael Stevens
9:12
[Comment From jimjim: ] 
Hi...parent of a mildly autistic boy who has "recovered." I read a study some months ago (I will have to dig it up) suggesting that incidences of autism increase when one or both parents are older--did to late child bearing years. Is anyone familiar with this study? I'm leaning towards it since, empirically speaking, people are waiting longer to have families. Seems to make better sense than other theories.
Monday April 11, 2011 9:12 jim
9:13
Sarah Cody: 
Marcela: you founded the Innovative Autism Network in Plainville where parents of children in the spectrum can find a variety of necessary services under one roof. How do these services -- physical and occupational therapy -- make a difference for a child with autism?
Monday April 11, 2011 9:13 Sarah Cody
9:13
Sarah Cody: 
Hi Jim...thanks for the question. Dr. Stevens?
Monday April 11, 2011 9:13 Sarah Cody
9:15
[Comment From Michael StevensMichael Stevens: ] 
I've not read that particular study, but there was similar research implicating other disorders that came out in the 90's. It's an interesting idea, suggesting that epigenetic or other neurobiological factors are at play, possibly changing the the products of gene expression in older adults who have kids. It also raises the possibility of in utero changes. One of my first studies was a simple analysis of "environmental effects" on autism... Looking at a large sample to see whether there was a disproportionate number of births of children who later were diagnosed with autism in the winter months (just as has been shown in schizophrenia). There was some support for the latter, but not enough clarity came from those efforts to point to any specific factor that might influence early gestational development.
Monday April 11, 2011 9:15 Michael Stevens
9:16
Marcela Nunez,-BCBA-Innovative Autism Network Director of Services: 
Children in the spectrum usually have delays in many different areas. Each therapy will address the child's individual needs for that specific area. Over here, we also take the entire child into consideration. We make sure that we all work as a team as so all skills can be reinforced across settings, people and therapies
Monday April 11, 2011 9:16 Marcela Nunez,-BCBA-Innovative Autism Network Director of Services
9:17
[Comment From Michael StevensMichael Stevens: ] 
Incidentally, my colleagues and I are doing an fMRI brain imaging study of children who have "recovered" to the point where detailed assessment no longer warrants a formal diagnosis of autism. We should be done with that study by the end of the year, with results published next year.
Monday April 11, 2011 9:17 Michael Stevens
9:17
Sarah Cody: 
The word "recovered" is interesting. Elaborate on it. Can a child "recover" from autism?
Monday April 11, 2011 9:17 Sarah Cody
9:18
Sarah Cody: 
Marcela and Dr. Stevens: Let's give parents out there some practical advice. What are the early signs of autism? When should parents seek help?
Monday April 11, 2011 9:18 Sarah Cody
9:18
[Comment From BillBill: ] 
How much does diet factor into affecting, either positively or negatively, a child with Autism?
Monday April 11, 2011 9:18 Bill
9:19
Sarah Cody: 
Great question, Bill. There's been a lot in the news about diet. Dr. Stevens?
Monday April 11, 2011 9:19 Sarah Cody
9:20
[Comment From Michael StevensMichael Stevens: ] 
"Recovered" is a term that is being used quite loosely typically to describe youth who received a documented diagnosis of autism of pervasive developmental disorder around the ages 3-5 when it usually is formally diagnosed. Then, most often through intensive treatment, have improved areas of social and communication problems to the point where the impairments (if still there) do not reach the level of severity or clinical impact to be considered a symptom. You sometimes see true success stories where a kid who clearly met all the criteria for autism who has appropriate and "normal" appearing social and communication.
Monday April 11, 2011 9:20 Michael Stevens
9:20
[Comment From jimjim: ] 
yes--that is what the study suggested--a mutation because of an older parent. Re: the enviro effects--I'm sure you read a study where incidences seemed to be higher in children who lived close to freeways. Any substance to that one in your opinion Dr.? Seems like incidences would be higher--like the vaccination theory--if vaccines caused or triggered autism, the incidences would be astronomical.
Monday April 11, 2011 9:20 jim
9:21
Sarah Cody: 
What is your opinion about vaccinations, Dr.?
Monday April 11, 2011 9:21 Sarah Cody
9:22
[Comment From jimjim: ] 
I'll look forward to your imaging study.
Monday April 11, 2011 9:22 jim
9:22
Marcela Nunez,-BCBA-Innovative Autism Network Director of Services: 
early signs of autism:
lack of eye contact, delay language development, no interest in social play games (peek-a-boo), does not respond to own name when called...
Monday April 11, 2011 9:22 Marcela Nunez,-BCBA-Innovative Autism Network Director of Services
9:22
Sarah Cody: 
Marcela: give us some specific examples of therapies that help children with autism...how and why.
Monday April 11, 2011 9:22 Sarah Cody
9:22
[Comment From Michael StevensMichael Stevens: ] 
RE: Diet... Unfortunately, this is not my area of expertise. Perhaps Ms. Nunez has more familiarity with this... particularly in terms of practical advice? Although anything is possible, I guess, it seems clear that these influences are not a "smoking gun" for autism causes. However... There is precedent for a metabolic pathway causing these types of impairments. Take PKU as a clear example, or other rare metabolic disorders that influence the breakdown of certain proteins or factors that might produce developmental delays, mental retardations, etc.
Monday April 11, 2011 9:22 Michael Stevens
9:23
[Comment From jimjim: ] 
No, but some can function at such a "normal" level so much that the ordinary person wouldn't have a clue.
Monday April 11, 2011 9:23 jim
9:24
[Comment From BillBill: ] 
How about highly "processed" or "prepared" foods versus more organic or home-prepared meals?
Monday April 11, 2011 9:24 Bill
9:24
[Comment From BillBill: ] 
Like Aspergers?
Monday April 11, 2011 9:24 Bill
9:24
Sarah Cody: 
Marcela: do you have info/opinion about the diet issue?
Monday April 11, 2011 9:24 Sarah Cody
9:25
Marcela Nunez,-BCBA-Innovative Autism Network Director of Services: 
Applied Behavior Analysis (ABA) is one specific treatment that is data driven. Data have shown that this methodology have been very effective in treating children in the spectrum
Monday April 11, 2011 9:25 Marcela Nunez,-BCBA-Innovative Autism Network Director of Services
9:25
Sarah Cody: 
Dr. Stevens: early detection and intervention is key, correct?
Monday April 11, 2011 9:25 Sarah Cody
9:27
Marcela Nunez,-BCBA-Innovative Autism Network Director of Services: 
A lot of my parents have chosen to go put their children in different diets. As a clinician, I have not seen significant changes in the children. However, we are a data driven clinic, so we keep data on our end to make sure that the diet and or any other factors are not intervening with learning
Monday April 11, 2011 9:27 Marcela Nunez,-BCBA-Innovative Autism Network Director of Services
9:28
Sarah Cody: 
Marcela: tell us more about ABA. What exactly is Applied Behavior Analysis? Your clinic has a gym and a new room for after school activities for children on the spectrum.
Monday April 11, 2011 9:28 Sarah Cody
9:28
[Comment From Michael StevensMichael Stevens: ] 
Absolutely. In CT in particular there has been a large effort to educate pediatricians about autism. Fortunately, it is difficult to avoid having your child screened for the social and language developmental milestones that might indicate early problems suggestive of autism. As Ms. Nunez commented, ABA... particularly applied as early and as much as possible has long been known to have the best chance at optimal outcomes.
Monday April 11, 2011 9:28 Michael Stevens
9:30
Sarah Cody: 
Comment on the "spectrum", Dr. Stevens. Diagnosis must be complicated in many cases...because the spectrum is very wide, correct? There are many, many different levels of severity, yes?
Monday April 11, 2011 9:30 Sarah Cody
9:32
[Comment From BillBill: ] 
The number of children diagnosed with Autism has risen alarmingly in recent years - is this due inpart to the expansion of the "Spectrum"?
Monday April 11, 2011 9:32 Bill
9:32
[Comment From jimjim: ] 
Early detection and once detected, INTENSE and persistent therapy, as the Dr. said earlier . Two keys. You "re-train" the brain if caught early enough and therapy is constant.
Monday April 11, 2011 9:32 jim
9:32
Marcela Nunez,-BCBA-Innovative Autism Network Director of Services: 
ABA is a methodology that is data driven and it focus on teaching small units of behaviors that are socially significant for each individual child and for their families. So we break down tasks as necessary to teach a child. The clinic is a place that will be able to offer different environments for the children to learn how to socialize and also how to generalize skills learned during one-on-one therapy time
Monday April 11, 2011 9:32 Marcela Nunez,-BCBA-Innovative Autism Network Director of Services
9:33
[Comment From Michael StevensMichael Stevens: ] 
Yes. The "spectrum" includes numerous conditions... complicated by the fact that autism can manifest with different levels of severity, often (though not always) linked to the overall intellectual ability of each child. On the one hand, people often ask, "aren't these different conditions?". If they were, it might make life a little easier for clinicians and researchers. However, research has shown that the idea of a "spectrum" of different, but related illnesses has a lot of support. On the other hand, the fact that we know that the different varieties of clinical presentation are related on a neurobiological level spurs researchers to seek both "unique" and "common" genetic/neurobiological factors.
Monday April 11, 2011 9:33 Michael Stevens
9:34
Marcela Nunez,-BCBA-Innovative Autism Network Director of Services: 
the spectrum is certainly VERY wide. The past 12 years I have not met a child in the spectrum exactly alike.
Monday April 11, 2011 9:34 Marcela Nunez,-BCBA-Innovative Autism Network Director of Services
9:35
Sarah Cody: 
When you and I spoke, Marcela, you made an interesting point. Your son, who is on the spectrum, attempted to join some after school programs with your local Park & Rec Department. While he was welcome to join, they didn't have the "modifications" in place to make it a successful situation for him. How will your after school programs be different?
Monday April 11, 2011 9:35 Sarah Cody
9:35
[Comment From jimjim: ] 
Thanks everyone. I need to get to work. I'll read the transcript later. Keep up the good work.
Monday April 11, 2011 9:35 jim
9:36
Sarah Cody: 
Thanks, Jim. Appreciate your involvement.
Monday April 11, 2011 9:36 Sarah Cody
9:36
[Comment From Doriana VicedominiDoriana Vicedomini: ] 
An article in Journal of Immunotoxicology entitled, " Theoretical aspects of autism:Causes-A review" written by a former senior scientist at a pharmaceutical firm , Helena Ratajczak did what nobody else had done , reviewed the body of published since autism was first described in 1943.
Monday April 11, 2011 9:36 Doriana Vicedomini
9:37
Marcela Nunez,-BCBA-Innovative Autism Network Director of Services: 
My after school and all other programs that we are going to be offering at your Creative and Learning Center will be taught that by people with experience in dealing with children with special needs. This way, modifications to the curriculum will be made as necessary in order to provide an inclusive environment for all children
Monday April 11, 2011 9:37 Marcela Nunez,-BCBA-Innovative Autism Network Director of Services
9:37
[Comment From BillBill: ] 
Do children with ASD fall under the Americans With Disabilities Act? If so, wouldn't the Parks & Rec be required to make reasonable accomodation?
Monday April 11, 2011 9:37 Bill
9:37
[Comment From Doriana VicedominiDoriana Vicedomini: ] 
Many Parks & Recs have had training and are taking kids on the Spectrum.
Monday April 11, 2011 9:37 Doriana Vicedomini
9:38
Sarah Cody: 
Marcela?
Monday April 11, 2011 9:38 Sarah Cody
9:38
Marcela Nunez,-BCBA-Innovative Autism Network Director of Services: 
i think there is a difference in taking children in the spectrum and being able to offer modifications that are appropriate for those children
Monday April 11, 2011 9:38 Marcela Nunez,-BCBA-Innovative Autism Network Director of Services
9:39
Sarah Cody: 
What kinds of after school programs will you offer? And you want to include any child, yes? Even those NOT on the spectrum?
Monday April 11, 2011 9:39 Sarah Cody
9:41
Marcela Nunez,-BCBA-Innovative Autism Network Director of Services: 
yes the Creative and Learning Center will be open to everyone. We will be offering science, dance, music, social skills, playgroups, nutrition ... are just some of the classes
Monday April 11, 2011 9:41 Marcela Nunez,-BCBA-Innovative Autism Network Director of Services
9:41
Sarah Cody: 
Dr. Stevens...let's start to sum up our chat in the next few minutes. In honor of Autism Awareness month, what do you think the public should know? What should parents of an autistic child know? Are there misconceptions out there?
Monday April 11, 2011 9:41 Sarah Cody
9:42
[Comment From Doriana VicedominiDoriana Vicedomini: ] 
ASCONN & ASRC will do trainings to assist Parks & Rec. The more the public is educated about Autism the better they will be at making modifications and accommodations.
Monday April 11, 2011 9:42 Doriana Vicedomini
9:43
[Comment From Michael StevensMichael Stevens: ] 
The most important thing to know is what has already been stressed... Early identification and early, intensive intervention are the factors that research has shown result in the best gains towards optimal function. Autism is a condition like any other, which treatment research has shown can be influenced in positive ways. The other thing worth emphasizing is that parents of autistic children are not alone. With increasing awareness there also is an ever-growing support network for parents of autistic children. Parenting can be quite challenging, but ultimately rewarding when the right resources are found.
Monday April 11, 2011 9:43 Michael Stevens
9:44
Sarah Cody: 
How can parents find a support network?
Monday April 11, 2011 9:44 Sarah Cody
9:45
Sarah Cody: 
Is there any particular study going on right now that you find to be particularly exciting or hopeful, Dr. Stevens? Are we looking ahead to more info, more solid findings?
Monday April 11, 2011 9:45 Sarah Cody
9:46
[Comment From Michael StevensMichael Stevens: ] 
Patience and perseverence. The best resources are a combination of formal and informal things. Unfortunately, the expertise needed for evaluation/treatment means that there is commonly is a frustratingly long wait to be seen by professionals. So it's key to seek out other informal sources of support, socially, informationally, etc. Programs like the one offered by Ms. Nunez are key to put parents in contact with other parents.
Monday April 11, 2011 9:46 Michael Stevens
9:47
Sarah Cody: 
Marcela: what is the web address for IAN, in case anyone is interested in finding out more about your programs?
Monday April 11, 2011 9:47 Sarah Cody
9:47
Marcela Nunez,-BCBA-Innovative Autism Network Director of Services: 
www.iannetwork.com
Monday April 11, 2011 9:47 Marcela Nunez,-BCBA-Innovative Autism Network Director of Services
9:49
Sarah Cody: 
A reader emailed me this morning about a documentary currently running on PBS: "Autism: Coming of Age". You can see a clip of this piece at www.massmutual.com/planningtools/additional-resources/special-needs/special-care/autism-coming-of-age
Monday April 11, 2011 9:49 Sarah Cody
9:49
[Comment From Michael StevensMichael Stevens: ] 
The trend in neuroscience research of psychiatric illnesses has moved in the last decade towards the (very promising) pooling of data from individual studies into larger consortia. "Gene banks" and other large-scale repositories for data provide researchers incredible opportunities to seek factors that are related to the different "causes" of autism. I hope that over the next decade, genetics combined with neuroimaging will produce important gains in our understanding of the disorder.
Monday April 11, 2011 9:49 Michael Stevens
9:49
[Comment From Doriana VicedominiDoriana Vicedomini: ] 
Parents can start in their own communities. Schools, Community Collaboratives, .....ask your school social worker, 211, Organizations like FAVOR & ASCONN have support groups listed on their websites.
Monday April 11, 2011 9:49 Doriana Vicedomini
9:49
[Comment From Sonja R.Sonja R.: ] 
There seems to be a lot of interest in children, what can a parent of an adult do?
Monday April 11, 2011 9:49 Sonja R.
9:49
Sarah Cody: 
Good question, Sonja. Dr.?
Monday April 11, 2011 9:49 Sarah Cody
9:51
[Comment From Michael StevensMichael Stevens: ] 
I wish I had a helpful answer, but much of the practical issues involved in treatment, behavioral management ,etc. are really outside my expertise. My work focuses on brain structure/function abnormalities, mostly in children/early teens. Perhaps Dr. Nunez can offer some more practical insight?
Monday April 11, 2011 9:51 Michael Stevens
9:52
[Comment From Doriana VicedominiDoriana Vicedomini: ] 
That's the hardest challenge. Very little out there for adults with Autism especially if their IQ is over 70. DDS has a small program.
Monday April 11, 2011 9:52 Doriana Vicedomini
9:52
[Comment From BillBill: ] 
There's a well known for-profit business in Windsro Locks that has a great program for adults with disabilities (I can mention, but not sure if appropriate?)
Monday April 11, 2011 9:52 Bill
9:53
Marcela Nunez,-BCBA-Innovative Autism Network Director of Services: 
unfortunately there is not a lot of resources for adults in the spectrum. Some agencies that I know of are Abilities Beyond Disabilities, some DDS programs
Monday April 11, 2011 9:53 Marcela Nunez,-BCBA-Innovative Autism Network Director of Services
9:55
[Comment From Doriana VicedominiDoriana Vicedomini: ] 
Walgreens Warehouse for employment opportunities.
Monday April 11, 2011 9:55 Doriana Vicedomini
9:55
Sarah Cody: 
I think this has been a very important hour. Thanks to all of you for participating...Dr. Stevens and Marcela Nunez, you both shared some very useful information. You can read a full transcript of this chat at: www.ctnow.com/autismawareness. Please share the link with members of your communities.
Monday April 11, 2011 9:55 Sarah Cody
9:55
[Comment From BillBill: ] 
That's it, I know of a couple parents who are very happy w/their program for adults w/disabilities.
Monday April 11, 2011 9:55 Bill
9:56
Marcela Nunez,-BCBA-Innovative Autism Network Director of Services: 
thank you Sarah
Monday April 11, 2011 9:56 Marcela Nunez,-BCBA-Innovative Autism Network Director of Services
9:56
[Comment From BillBill: ] 
Sarah - thanks, how many of us were participating?
Monday April 11, 2011 9:56 Bill
9:57
Sarah Cody: 
I won't know how many live readers we had 'til later..but, we had 6 or 7 people adding comments. Good stuff.
Monday April 11, 2011 9:57 Sarah Cody
9:57
[Comment From Michael StevensMichael Stevens: ] 
Of course. Thanks for having me on the chat.
Monday April 11, 2011 9:57 Michael Stevens
9:57
[Comment From Doriana VicedominiDoriana Vicedomini: ] 
Thanks everyone! Take care.....
Monday April 11, 2011 9:57 Doriana Vicedomini
9:57
 

 
 
 
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