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Posts Tagged ‘LIVE Chat’

Lorri Unumb to Host “My Child Has Autism: How Do I Get Insurance?” Webchat

February 22, 2012 19 comments

Please join us Monday February 27th for our first webchat featuring the Government Relations team: “My Child Has Autism: How Do I Get Insurance?” The webchat will be hosted by Lorri Unumb, Esq., our Vice President for State Government Affairs.

Held at 8 p.m. Eastern (7 Central/6 Mountain/5 Pacific), this “office hour” will connect families looking for answers about their health insurance with Ms. Unumb, who is regarded as one of the nation’s pre-eminent experts on health insurance and coverage for the diagnosis and treatment of autism. Ms. Unumb wrote groundbreaking autism insurance reform legislation enacted in her home state of South Carolina in 2007 and has since led the way for the enactment of similar laws in 27 other states. Her most recent honor was the 2012 Leadership in Advocacy Award presented by the California Association for Behavior Analysis.

Ms. Unumb welcomes your questions about how autism insurance coverage works in your state, understanding self-insured policies and the impact of the new federal health care law on autism coverage. However, the guidance provided on the webchat is not meant to substitute for the information provided by your employer’s human resources department, your insurance agent or attorney.

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

Got Sleep Questions? We’ve Got a Webchat for You

February 21, 2012 6 comments

Please join us TODAY for a live webchat with neurologist and autism sleep expert Dr. Beth Ann Malow, M.D., of Vanderbilt University Medical Center, at 1 pm Eastern (noon Central; 11 am Mountain; 10 am Pacific).

Dr. Malow will be fielding questions on sleep issues affecting individuals on the autism spectrum and their families. This webchat is being held in tandem with the same day release of Sleep Strategies for Children with Autism: A Parent’s Guide, the latest free tool kit published by the Autism Speaks Autism Treatment Network (ATN) as part of its participation in the Autism Intervention Research Network on Physical Health (AIR-P). The tool kit will become available for free download on the ATN’s “Tools You Can Use” page the same day.

Joining Dr. Malow will be ATN Program Director Nancy Jones, Ph.D., who will be fielding general questions about ATN services and other Autism Speaks resources.

We hope you’ll join us:

What: Live “Sleep Chat” with neurologist and autism sleep expert Dr. Beth Ann Malow
When: Feb. 21, at 1 pm Eastern; noon Central; 11 am Mountain; 10 am Pacific
Where: Join via the Live Chat tab on left side of the Autism Speaks Facebook page.

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

LIVE Chat with Geri Dawson, PhD & Lisa Goring Analyzing DSM-5

January 20, 2012 15 comments

Chief Science Officer Geri Dawson, PhD and Family Services Vice President Lisa Goring hosted a LIVE Chat to address concerns sparked by this week’s New York Times article on proposed revisions to the medical definition of autism spectrum disorder in the DSM-5, to be published in 2013. Readers heard about its potential implications for individuals to receive an autism diagnosis and appropriate services.

2:56
Hello everyone! This is Dr. Dawson. Thanks for joining us today to discuss the new DSM changes. We’ll be starting momentarily.
2:57
Hi All! Thanks so much for taking the time to be with us today. We look forward to the chat!
3:00
Comment From jennifer

Does the new DSM effect children already diagnosed…I have two with PDD-NOS….will their services change?
3:02
Hi Jennifer, This is Dr. Dawson. The new system has yet to be implemented. But once it is implemented, if your children were assessed again using the new system and, if they didn’t qualify for an ASD, theoretically yes, if could affect their eligibility for services. Autism Speaks will be monitoring this carefully. We want to make sure that no one is denied the services they need.
3:03
Comment From JenB

I read the new definition on the NY Times site. Is this the final definition or could it change? Would children who when first diagnosed met the criteria but who have been helped by intensive therapies and may not still meet them to the same degree (but still need therapy to continue to gain ground) be kicked out?
3:05
Hi Jen, This is Dr. Dawson. The APA committee that is developing the new criteria is in the process of finaling the criteria. They expect to be done in December. Then, they will conduct field trials to see how the criteria work in the real world. You ask a good question: What if a child no longer qualifies for a diagnosis because they received treatment? This will have to be decided byindividual school systems and other policy makers. We will be working hard to advocate to make sure that those children who are improving but still need services are able to retain them.
3:06
Comment From Robin

will children who are already classified be “grandfathered” per se or will we lose our classification and our services
3:07
Hi Robin, it’s Lisa – Services should be based upon the child’s needs. We will be monitoring it to make sure that individuals get the services they need.
3:09
Comment From Tavia

What does DSM stand for? Thank you.
3:09
Hi Tavia, This is Dr. Dawson. The DSM standards for the Diagnostic and Statistical Manual of Mental Disorders by the American Psychtriac Association. It is the manual that doctors use to diagnosis conditions such as autism.
3:10
Comment From Jeanie

What about children who currently have a diagnosis of PDD-NOS or Asperger’s? Will they have to be reassessed once the DSM-V rolls out, or can their current diagnoses stand?
3:11
Hi Jeanie, this is Lisa. Although it is possible that some service providers or funders could request a re-evaluation, especially if your child is seeking new services, it is our hope and understanding that the current diagnosis will stand for existing services. Presently, most social service programs require an assessment to determine eligibility.
3:12
Comment From Rebecca Pavlik

I am very scared about this new diagnostic criteria. My son is PDD-NOS I have read as many as 85% of those children will be ruled out with the new criteria. My son has a 2 year developmental delay. He is ten reads at a 1st grade level, cannot write legibly, already receives basically no services outside of SSI and Medicaid. What will happen to all of these kids?
3:12
Hi Rebecca, This is Dr. Dawson. The study discussed in the New York Times article is very preliminary and probably overestimated the number of children who would be denied a diagnosis with the new system. So, hang in there. Given that your child has a two year developmental delay, he should qualify for services regardless. In any case, we are going to monitor this carefully to make sure that kids don’t get denied services under the new system.
3:15
Comment From melissa

what can we as parents do??
3:15
Hi Melissa it’s Lisa – As parents we need to stay updated and understand the guidelines and we need to continue to advocate for the services that our children need.
3:16
Comment From Bonnie

Will it be posted somewhere so we can read all the changes that are being made?
3:17
Hi Bonnie, that’s a great question. the American Psychiatric Association (APA) has a website that details all the information and background about the proposed changes to DSM-5. Here is a link: http://www.dsm5.org/Pages/Default.aspx. Thanks, Lisa
3:18
Comment From Guest

What is most disturbing to me is that the powers that be seem to see this as a way to solve the autism epidemic. Is there a governing board higher than the APA that keeps this in check?
3:19
Dear guest (at 3:12), This is Dr. Dawson. The proposed changes in the DSM will not “solve the autism epidemic.” In fact, research has shown that the broadening of the diagnostic criteria only account for a portion of the increase in autism prevalence. Approximately 50% of the increase remains unexplained. Autism Speaks is committed to understanding why there has been a dramatic increase, focusing on possible environmental risk factors that could be contributing. We are currently funding a study to get more accurate estimates of the prevalence of autism in the US and around the world and many studies focused on environmental risk factors. It’s up to all of us to work together make sure that the changes in the DSM don’t end up discriminating against people who need services.
3:21
Comment From Mara

How will this change affect our kids as they grow, will they still be protected under American’s with Disability Act?
3:21
Hi Mara, your question about protection under the American Disabilities Act (ADA) is a great one. Fortunately, autism will continue to be protected under the ADA. The proposed changes have nothing to do with changing the disability status of autism.
3:22
Comment From Guest

I have 2 male Grand sons non verbal autistic ages 8 and 5 already getting help. Do you think they will stay on the program?
3:22
Hi Guest it’s Lisa – the services that your grandsons are receiving should continue to be based upon their needs. It will be necessary to monitor their progress to make sure that their needs are being met.
3:24
Comment From Will

Why is Autism Speaks adopting a “wait-and-see” approach with regard to the outcome of this redefinition of what falls on the spectrum, and what steps are you prepared to take to insure that this change does not marginalize those currently considered to be high-fuctioning/Aspergers/PDD-NOS?
3:25
Hi Will. This is Dr. Dawson. We really don’t know yet how the new system will influence the ability to receive a diagnosis or services. The study discussed in the New York Times today is on a very small sample with old data and only included higher functioning persons. So, they are likely greatly overestimating the impact of the new system. We are designing and funding a study that will examine the impact of the new diagnostic system on diagnosis and access to services. We are also working with policy makers and insurance companies to make sure that people are not discriminated against when the new system is implemented.
3:28
Comment From Chone

I’m trying to ask a question in the chat but it isnt posting…. So here goes…. When can we expect our children to retested? And once retested will a new IEP need to done? Should we contact our schools and teachers now to find out? Personally I would really hate to wait until the middle of the next year
3:29
Hi Chone it’s Lisa – most likely you will still follow the current IEP, until your child’s annual review. Your child’s IEP should be developed based upon his or her strengths and challenges. As a parent you can always request an IEP meeting to review the goals and services.
3:29
Comment From Maria Lopez-Torres

in an article I read in the New york times it said that they are using a 1993 study for the changing the new criteria in the DSM, do you know if that is the only study they are going by or are they using any new study’s?
3:30
Dear Maria, the 1993 study referred to in the New York Times today came from a presentation that Dr. Fred Volkmar at Yale gave to the Icelandic Medical Association this week. However, that study has not gone through the peer-review process that research studies typically receive before publication. There is another study that was published in the June 2011 edition of the Journal of the American Academy of Child & Adolescent Psychiatry (JAACAP) by Mattila et al that reached a similar conclusion although the figures were very different. That same journal has a wonderful editorial by one of the members of the DSM-5 Neurodevelopmenatl Disorders Workgroup, Dr. Francesca Happe. Thank you for your question.
3:31
Comment From Vanessa in NC

What is behind the push to change the way ASDs are classified? I just don’t understand the rationale. Why lump everyone together? Our son’s needs, as someone with Asperger’s, are largely different than some of his peers at school who have a “classic” autism diagnosis and have more acute cognitive deficits.
3:33
Hi Vanessa, This is Dr. Dawson. The scientific rationale behind the changes actually are quite solid. The different distinctions among the subtypes (Autism, PDD-NOS, Asperger Syndrome, and so on) don’t map onto different causes or different treatment approaches. For example, a very similar treatment approach would likely be used for your son, who has Asperger syndrome, as would be used for a child with high functioning autism. The only distinction between Asperger syndrome and High Functioning Autism in the current system has to do with how much speech the child had by 3 years of age. It has been difficult for even expert clinicians to make reliable distinctions among the subtypes because these distinctions rely on people’s recollection of very early history. So, it does make sense to use a broad category – ASD. In addition, for each person, the doctor will need to describe the severity of symptoms, presence and degree of intellectual and language disability, and other factors, such as presence of medical conditions (e.g. GI distress) and genetic etiology (e.g. fragile X). While the new changes make sense scientifically, we need to keep in mind that this is not simply an academic exercise. We need to make sure that these changes don’t lead to people being denied the services they deserve.
3:34
Comment From Jason

Hello. My question is whether there are plans to look into the proposed changes to the diagnostic criteria with a more representative sample of children with ASD/Aspergers/PDD-NOS before the changes actually take place?
3:34
Hello Jason, your question about whether there will be any testing or validation of the proposed changes before they are implemented is a great one. The answer is yes, there will be a number of “field testing” studies conducted between now and the final publication date, which is expected to occur in May 2013. Thanks for participating in our chat today. Lisa
3:36
Comment From Guest

This change will effect only new diagnosis right? I mean you can’t take away a diagnosis? Can you?
3:36
Hello Guest (at 3:26). This is Dr. Dawson. The concern here is if a child (or adult) needs to be re-evaluated, they would be evaluated under the new system. We will be working hard to make sure that this won’t result in denial of services if the child no longer meets criteria for an ASD. This may need to be an advocacy effort state-by-state and we are commited to doing that, if necessary.
3:42
Comment From Tricia

It seems this is going to make it very difficult for families. My son has many of the service and he has come so far with them, but only with them. He has disabilities across the board, at least some in every area. Seems like kids like him who are improving are going to be left out in the cold if families are middle or low income.
3:42
Hi Tricia, This is Dr. Dawson. We don’t know yet what impact the new system will have. The study that was discussed in the New York Times article today likely overestimated the impact. If the new system does end up excluding some people from a diagnosis of ASD, it will likely be those with higher cognitive cabilities. If your child has disabiltiies across the board, he should qualify for services, even under the new system. That said, I agree that we don’t want to make obtaining services any more difficult for families. Families are struggling to get services as it is. Autism Speaks is commited to ensuring that the new diagnostic system doesn’t discriminate against people, especially those with low incomes or those with higher cognitive abilities.
3:43
Comment From Sue

I’d like to see some discussion about how these changes may impact adults with ASD. Please discuss how many adults with AS or HFA need significant supports to transition to independence and to maintain independence. Also,they may have high comorbidity of mood and anxiety disorders. These changes may take us backwards in our understanding of complexities of ASDs and quality of life in adulthood.
3:43
Sue, we share your concerns about how the changes may impact adults with ASD, especially those who fit into the more abled end of the spectrum. Your question about how many of these adults require supports for transition to independence is a good one. Unfortunately, this type of epidemiological research has not been conducted to date so we don’t have a good idea of what % of individuals meet this criteria. Quality of life during adulthood is a significant concern for us and one of the reasons we helped to develop Advancing Future for Adults with Autism, a consortium of organizations working to redefine the future for adults. Please link here for more info on AFAA. (www.afaa-us.org)
3:44
Comment From Peter Faustino

Hi Lisa and Geri – Thank you for doing this live chat. It’s clear that there is so much misinformation that it scares many people into worrying if programs and services will change. I wish the APA were doing more to educate the public about these changes. While I agree with everything you have said, do you think that pediatricians (often the first line of defense) will be hesitant to diagnosis autism and therefore slow early intervention? Right now the dx of PDD-NOS is used for young children showing signs of autism. With Early Intervention they are making tremendous progress. What can be done to share these unintended effects with APA?
3:44
Hi Peter it’s Lisa – this is a great question. We know how beneficial early intervention can be and we must continue to build awareness around the signs of autism so that children who qualify can get services as soon as possible. We must also continue to educate pediatricians as well as families about the signs of autism and the importance of early diagnosis. Thanks for joining us!
3:48
Hello Guest at 3:37, insurance coverage is an important issue to Autism Speaks and we don’t expect the DSM 5 changes to have a significant impact. All of the 29 state laws that require health plans to cover autism treatments have language in the definitions that apply to latest definition of autism spectrum disorders. So these laws will not be impacted by these changes. However, if a person does not meet the criteria for ASD under the new DSM, a doctor may choose or have to use another diagnostic code. Thanks for this question. Lisa G
3:48
oops. Here comes the question…
3:48
Comment From Guest

For some reason, these are not posting ot chat, so I will try one more time. Any ideas regarding the affect of these changes on insurance coverage for OT, PT, ST? I know that there have been great gains recently, with new laws put into use. I am a bit nervous that the new changes might affect our recent progress.
3:49
Hi everyone,
Your questions don’t automatically post because–fortunately–there are hundreds of you joining us.
3:49
We’re answering as fast as we can!
3:52
Comment From Michelle

How will this affect kids in the public schools seeking IEP services? I know in some cases, services are denied if they do not fit in the child’s specific diagnoses.
3:53
Michelle, your question about IEP services in public schools is a great one. Generally speaking, a diagnosis of autism is sufficient to permit a student to receive special educations services with an IEP under IDEA and we do not expect that to change under the new DSM-5 criteria. However, for those who no longer meet the new criteria it may become more challenging to qualify for an IEP. Of course, environmental accommodations are available through 504(b) if the student needs it. But make no mistake, we are very concerned that some students with autism may find it more difficult to get the support they need. Autism Speaks plans to closely monitor this situation and advocate where needed.
3:54
Comment From lisa

what is g.i. distress?
3:55
Hi LIsa, This is Dr. Dawson. Many persons with autism have associated medical conditions, such as sleep problems, gastrointestinal problems (GI distress), and seizures. Under the new system, the doctor will be asked to note whether or not the person has these conditions because they can greatly interfere with a person’s ability to take advantage of behavioral and educational treatments.
3:57
Comment From Dianna

One of my granddaughters is now a highly functioning autistic but that’s only because of my daughter and son-in-laws’ efforts and home-schooling. She will never be able to support herself or live alone despite all her advancements. I see a similar question was proposed earlier but if she is denied her medication she will definitely regress. It seems like it’s just another burden to put on our autistic population. She’s better, so she may not qualify when she’s reevaluated, so no meds, so she regresses, then reevaluated, back on meds, gets better, then fails revaluation, etc. Is this something you, Autism Speaks, will be trying to prevent? This cycle of passing evaluation / failing evaluation?
3:57
Hi Dianna, it sounds as if your daughter and son-in-law have done a great job advocating for your granddaughter. We will need to carefully monitor the effects of any possible changes in service. It will be important to keep data as to any changes in skills as a result of a change in service. We are working hard at Autism Speaks to provide tools and resources to improve the lives of all that are living with autism, including a grandparent’s support kit as well as a transition tool kit. Please visit the Autism Speaks website www.autismspeaks.org Thanks, Lisa
3:58
Comment From Jeff

Previous reports had mentioned that Asperger’s syndrome might be eliminated as a diagnosis entirely in the DSM V. Is this change part of what we’re discussing today?
3:59
Hi Jeff, This is Dr. Dawson. In the new diagnostic system, the subcategories of autism, PDD-NOS, Asperger syndrome, and so on, would be eliminated and all of these subtypes would fall under one umbrella term – Autism Spectrum Disorder. However, people may still want to refer to themselves as having Asperger syndrome, even though the diagnosis won’t be recognized formally by the medical community.
4:00
Comment From Beth

I would like to advocate in my state. How would I go about it? I am finishing my bachelors in Human Services and there is a great need for support here where I live
4:01
Dear Beth, we would love to have your help advocating in your state! Please visit www.autismvotes.org or contact our Government Relations department atadvocacy@autismspeaks.org. Thank you for your offer. We’ll let our AutismVotes people know! Lisa
4:03
Comment From JD

I am an adult with Asperger’s. Although I am high-functioning and have a masters degree, I am unable to maintain work. I have had over 30 jobs, so I live on SSDI. It is unlikely that I would be diagnosed with the Autism Spectrum Disorder in DSM-V. So would I lose my Social Security Disability Insurance?
4:04
Hi JD, This is Dr. Dawson. I am sorry to hear that it’s been so hard for you to maintain work. It is unclear whether the changes in the DSM would mean that you would no longer receive a diagnosis of ASD. However, it is clear that your disability is interfering with your ability to function and you could benefit from receiving support and services, such as job coaching. We want to make sure that people like you, who are struggling with symptoms of autism, still receive the support and services you need under the new system. We will work hard on your behalf. Please join us in our advocacy efforts.
4:06
Comment From Kathy

We’re a military family and I worry about how this might affect our son every time we move. Schools want to do their own testing and have documentation. How will this affect him and hopefuly protect him from being stripped of services?
4:07
Hi Kathy, as a military family please be sure to visit our support page for Military Families and Autism Advocacy athttp://www.autismvotes.org/site/c.frKNI3PCImE/b.5141983/k.A9E4/Military_homepage.htm. As you obviously know, military families move frequently and need to change schools. That said, your son’s diagnosis shouldn’t change just because you move. In fact, that might violate federal education law so you should talk with a special education advocate or lawyer to make sure. Please visit our Family Services Resource Guide if you need a referral in your local area. Also, we have a Congressional Briefing on the military and autism on Jan 31st in Washington DC. Please visit www.autismvotes.org for more information.
4:08
Dear Everyone, I am so sorry we are unable to answer all of your questions. Please keep in touch through our Facebook page and follow the Autism Speaks Official Blog site. We will be monitoring and writing about the DSM as this unfolds. Thanks again for joining us. Dr. Dawson
4:09
Thanks so much for joining us!! Lisa
Categories: Family Services, Science Tags: , , , , , , , , , , , , ,

Live Monthly Webchats with Drs Dawson and Horrigan

November 22, 2011 13 comments

The Doctors Are In!
* First Thursday of every month
* 3 pm Eastern (2 Central/1 Mountain/noon Pacific)
* Join via the Live Chat tab at https://www.facebook.com/autismspeaks

Categories: Science Tags: , , , , , ,

LIVE Chat with George Braddock

November 16, 2011 3 comments

Autism Speaks’ Family Services is thrilled to be offering an hour live chat with George Braddock, the President of Creative Housing Solutions LLC.  Please join us on Monday, November 21 at 2:00 p.m. to learn about the work that Mr. Braddock has done to advance community living for adults on autism spectrum.

To join the chat – click here!

George Braddock is President of Creative Housing Solutions LLC. He pioneered the implementation of person-centered planning principles to homes for people with disabilities. George provides environmental engineering services for persons with intellectual and physical disabilities, families, providers and governmental agencies.

George brings to this work an extensive construction background from the field with experience gained from the completion of over 1,500 person-centered projects. He has contributed to the closure of three major state institutions adding significantly to this effort by creating community-based person-centered physical environments that work and make sense for the people who will live and work there. More than 1,000 individuals previously institutionalized now live in community in homes developed, designed and or/constructed by Mr. Braddock.

In addition to developing welcoming and inclusive multi-family housing opportunities for people with ID/DD, George’s work involves developing inclusive, authentic community opportunities for people with disabilities.  Further, he has recently published by the State of New York OPWDD: Making Homes That Work: A Resource Guide for Families Living with Autism Spectrum Disorder and Co-occurring Behaviors.

Categories: Family Services Tags: , , , , ,

How to Prepare for an Autism Emergency LIVE Q & A

November 14, 2011 4 comments

Please join us for a live chat, on Nov 15th at 4-5 pm EST Dennis Debbaudt, of  www.autismriskmanagement.com, will present “How to Prepare for an Autism Emergency.”

Dennis Debbaudt is the proud father of Brad, a young man who has autism. In the 1980′s,
Dennis wrote for the Detroit News and worked with network television current affairs
programs in the U.S., Canada and United Kingdom. A professional investigator and journalist
since 1977, Dennis turned his attention to autism spectrum conditions in 1987 after his son
was diagnosed with autism. His first report Avoiding Unfortunate Situations was published in
1994. He’s since authored over 30 articles, books and chapters including Autism, Advocates
and Law Enforcement Professionals: Recognizing and Reducing Risk Situations for People with
Autism Spectrum Disorders for Jessica Kingsley Publishers, London UK (2002), Contact with
Individuals with Autism: Effective Resolutions for the FBI Law Enforcement Bulletin
(Debbaudt & Rothman, 2001), Patients with Autism and Other High Risks for the Journal of
Healthcare Protection Management (2009) and Autism in the Criminal Justice System (Taylor,
Mesibov & Debbaudt, 2009).

JOIN CHAT HERE!

Categories: Family Services Tags: , , , ,

Transcript of ‘Genetics of Autism: What It Means for You’ Webchat with Geri Dawson, PhD and Steve Scherer, PhD

October 27, 2011 4 comments

On Thursday, October 27 our first “Office Hours” webchat was held with Autism Speaks Chief Science Officer Geri Dawson, PhD, and her guest host: University of Toronto’s Steve Scherer, PhD, a world pioneer in the discovery and understanding of the genes and genetic changes that predispose to autism. Drs. Dawson and Scherer welcomed questions about the emerging understanding of genetic predisposition to autism, related studies supported by Autism Speaks and how this research can lead to new therapies and insights of direct benefit to families and individuals affected by autism.

12:29
Hi, everyone! Thanks so much for joining us for this, our first live “Office Hours” with Autism Speaks Chief Science Officer Geri Dawson, PhD, a licensed clinical psychologist and a professor of psychiatry at the University of North Carolina, Chapel Hill. Dr. Dawson’s guest host today is University of Toronto’s Steve Scherer, PhD, a world pioneer in the discovery and understanding of the genes and genetic changes that predispose to autism. Drs. Dawson and Scherer welcome your questions about the emerging understanding of genetic predisposition to autism, related studies supported by Autism Speaks and how this research can lead to new therapies and insights of direct benefit to families and individuals affected by autism. They’ll be posting answers to as many of your questions as they can and regret that their fingers can’t fly fast enough to answer them all. 
12:32
Comment From cindy

what actually keeps my autistic son from speaking?
12:32
Hello Cindy. This is Dr. Dawson. There are many reasons why kids with autism have trouble developing language. Sometimes it just take time participating in treatment. Some children don’t speak until they are in elementary school. Others learn more quickly. It is important that you have your child evaluated by a speech-language pathologist who can help you understand why young child hasn’t learned to speak yet. There are many good devices, such as iPrompt that can help children who are not speaking communicate their needs and wishes.
12:34
Comment From Robin

Hi . My question is about autism and other genetic ic disorders. Is there a connection genetically between autism and say huntington’s disease?
12:35
Hello this is Dr. Steve Scherer. Thank you for your question. I have not heard of any definitive link between autism and Huntington disease. It is possible that these two conditions will occur in the same families just by chance. This may also be the case with autism and other disorders.
12:36
Comment From Mark S.

I have a friend with a three year-old boy who was recently diagnosed with Autism. Not sure of the specifics (speech, social interactions). Are there any helpful books or resources you would recommend to parents who barely know the first thing about Autism????
12:36
Hi Mark, This is Dr. Dawson. There are many resources on the Autism Speaks website, including information about what is autism, treatments available, and local resources. Your friend is fortunate to have someone who cares about helping. I am sure you will be a great source of emotional support for your friend. Here is the link: http://www.autismspeaks.org/family-services
12:37
Advance question from Theresa
Hello: My question is will my Nuro typical son carry a gene that can lead to his children having autism?
12:38
Hi, Theresa. Dr. Scherer, here. Yes this is possible, but unless there is a significant family history of autism the likelihood of this occurring would be near to population average.
12:40
Comment From Gwendolyn

Hi, in working with young autistic children (ages 18 months to 8 years), I have noticed frequently that many of the non-verbal kids have two very interesting things in common. First, while they will not speak, they have no problem singing to themselves and can remember every lyric to their favorite songs. Second, I have been amazed by the ability of the older kids (5-8) to spell and write things with a wonderful grasp of grammar, even though they do not speak. How might these things be explained?
12:40
Comment From nettie

is there a test that can be done to fine out if it is genetic or not?
12:40
Hello Gwendolyn, This is Dr. Dawson. People with autism can be gifted in many areas, including musical ability, and sometimes it is easier for a child to learn to sing before he learns to speak. In fact, singing is often used during therapy to promote speech and social interaction. Similarly, writing can sometimes be easier than speaking. This is because some kids with autism are able to process information in the visual modality easier than the auditory modality. One way or another, the important thing is to give kids a way of expressing themselves and relating to others.
12:41
Dr. Scherer here. There is a new technology called chromosome microarray analysis that allows detection of some genetic changes involved in autism. Recent research has shown that this technology can find genetic alterations in perhaps some 10% or so of individuals with autism. There are also some other single gene tests available. In a moment we will post a link that directs you to an article that can tell you more about the tests (it will be called GeneTests).
12:41
A highly referenced resource (GeneTests) for clinical geneticists/genetic counsellors:http://www.ncbi.nlm.nih.gov/books/NBK1442/
12:42
Advance question from KARA: How do we prevent this for the next generation? protect our grand children? I have 2 with Autism one High Funtioning and in College one that should be in 6th grade and is nonverbal and not potty trained-they are number2 and 4 of 4 boys, 1 & 3 are Nuero-typical! Please help us know how they can have a family with out anymore Autisms!
12:43
Hi Kara. Dr. Scherer, here. Your family would likely benefit from discussing the latest genetic results with a local clinical genetics/counselling group. You could also enroll in research programs. New chromosome analysis methods are allowing detection of copy number variants (CNVs) that will inform on these questions in some 10% of families with autism. Even newer DNA sequencing methods may further resolve things but these are very early days and the data is just now being looked at. … More from Dr. Dawson … 
12:43
from Dr. Dawson … 
Kara, our hope is that every child, whether that child has autism or not, is given the best chance for a meaningful productive and enjoyable life. The good news is that methods are being developed that can identify a child at risk for autism during infancy. Intervention can begin right away and lead to more positive outcomes. 
12:44
Comment From selma

ıs ıt hard to learn two language for them
12:44
Hi Selma, This is Dr. Dawson. There was a recent study published that showed that kids with autism who are exposed to two languages do not show slower development of language, as compared to those exposed to only one language. If a child is living in a bilingual home, they should be exposed to both so they can learn to communicate with their family members who speak different languages.
12:45
Comment From marie demachy fauth

I ordered a microarray analysis for my son who has autism, the microarray came back negative. At the same time I ordered genetic testings on several autism suspect genes, Shank3 gene and CNTNAP2 came back positive for genetic mutations. I wonder why the microarray analysis did not picked up these 2 genetic mutations?
12:46
Dr. Scherer’s response. Microarrays are a new technology that allows scanning of all of the DNA and genes in the genome. It will detect genetic alterations widely, but only if they are of a certain size (typically >500,000 chemical bases of DNA). DNA sequencing is a separate technology that typically looks at one gene at a time (eg. the SHANK3 or CNTNAP2 gene), but at a much higher resolution (1-1,000 chemical bases of DNA at a time). So in a way the techniques are complementary. Therefore, it would be expected that one technique would detect some changes while the other would find others.
12:47
Comment From Barb B.

Can you talk about research being done in the areas of immune disfunction and environmental causes which may lead to Autism. If a person is genetically predisposed can we avoid the things which may lead to Autism developing through early dietary and biomedical intervention? I feel very strongly that this is a path which needs so much more research
12:48
Hi Barb, This is Dr. Dawson. There is a great interest in understanding the role of the immune system and environmental factors in autism. Autism Speaks is funding a great deal of research in this area. To find out more, visit the science section of the Autism Speaks website and search under grants (link to come). We believe that autism is caused by a combination of genetic vulnerability and environmental risk factors, which can include prenatal factors (e.g. maternal infection) and postnatal factors (e.g. toxins, such as pesticides). We are very committed to funding research on these topics and hope to have more answers.
12:49
Here’s a link to our grant search:http://www.autismspeaks.org/science/grant-search/results
12:49
Comment From Christina

I’m pleased to “see” Dr. Scherer here! Wanted to let him know that my two sons, my husband, and I just gave blood samples last week, at Sick Kids, to participate in the Genetics for Autism study, with Dr. Roberts.
12:50
Very nice to hear from you. Families like yours and many others participation in research helps everyone. Ultimately, we need to work very closely with families like yours to decode the mystery of autism so hopefully we can provide answers to your questions. Dr. Roberts and my team will work hard studying your DNA! You will also get an invitation each year to our family research day where you will learn about the status of the research. Dr. Scherer.
12:52
Advance question from Felicia:
I have four children, two boys and two girls. My 9yr. old has asperger’s, my five year old is fine, my 4 yr. son is autistic functiong at an 18 mo. level and my 2 yr. old son is autistic functioning at 10 mo. level. Is it genetics that gave me so may autistic children and if so why did it skip one? My husband wants to try for a typicaly developing boy after the boys are older. I feel we should not if 75% of our kids are autistic. What are the odds we could have a non autistic child?
12:53
Hi Felicia. Dr. Scherer, here. Genes (genetics) seem to often be involved in autism but there effect is almost always not absolute. There are about a half-dozen genes known that if present in one copy instead of the typical two copies may lead to a form of autism. Sometimes it is a more debilitating form of autism and other times it is a more high-functioning form. The new genetic tests may have the most significant impact by facilitating (or highlighting) early detection, perhaps even before onset of symptoms. It is hoped that this early identification may assist in intervention. I think the question above may also be getting at the issue of why more boys have autism than girls. For some genes on the X-chromosome there is a relatively simple explanation, but for other genes the genetics are even more complex.
12:54
Comment From Christina

Could you discuss the frequent co-morbidity of autism and ADHD? Are some medications better than others to treat ADHD symptoms in a child with autism? Thanks.
12:54
Hi Christina, This is Dr. Dawson. Autism is associated with several medical conditions (“co-morbidities”) and ADHD is one of the most common co-morbidities. The treatment for ADHD for a child with autism can include medications as well as behavioral interventions that can help a child focus their attention. I suggest that you contact a physician with expertise in autism in your local community and ask the physician for help in making a decision about medication. Autism Speaks Autism Treatment Network recently published a tool kit that helps parents make a decision regarding whether they should try a medication to help with behaviors, such as ADHD. We will send a link in a minute to the toolkit.
12:55
Comment From Guest

My son has asperger’s, daughter has tourette’s and male family on DH’s side (including DH have motor tics and asperger tendencies). Is it a valid reason then for us to pursue donor sperm for any future children? Will there soon be a way to determine the genetic risks and probabilities? I don’t want to knowingly give any more of our kids neuro disease.
12:56
Hi, Dr. Scherer here: Different neuropsychiatric conditions are sometimes observed within families, as seems to be the case in your situation. If you haven’t already done so, you should discuss your situation with a clinical geneticist or genetic counsellor. There are now some genes identified for autism and other neurological conditions, but ultimately family history is very important and you should discuss this with your doctor and the genetic specialists. I would also refer you to the GeneTests document we posted earlier.
12:57
Comment From Dawn Ford

I have a question about diagnostic testing and autism. When my son was 2 years old he had a brain MRI and a microarray genetics test, both of which were normal. He is now 5 and since that time I have read several articles about abnormal brain MRIs and genetics tests in children with autism. I’m curious if it is considered normal for a child who clearly has autism (he also has a diagnosis of hyperlexia) to appear completely normal on these types of diagnostic tests.
12:58
Hi Dawn, This is Dr. Dawson. It is common to find that a child with autism shows no abnormalities in brain MRI and microarray genetics tests. These tests are not necessarily sensitive enough to detect the subtle genetic and brain changes that may be associated with autism. Your child’s skills in the area of reading may help him excel and communicate. I hope he is able to use these skills at school.
12:59
Comment From Guest

We have a 6yo daughter with pdd-nos and a 4yo “neurotypical” son. In contemplating the possibility of a third child, is there currently any testing we can have done to indicate whether we have a heightened chance of having another child affected by autism?
1:00
Hi 12:35 Guest. In the last few years there have been many advances in genetic analyses. Earlier, I mentioned the new chromosome microarray analysis (CMA) test. This is becoming a standard of care test in many countries and for a proportion of families with autism it can inform on relative risk. There is much information on the internet. You should do some research and talk to your doctors to see if they think it is appropriate. Much more genetic counseling information (including risk assessment) is given in the GeneTests document we linked to (it will be easier for you to read this than me trying to type out such a long answer!). Dr. Scherer.
1:03
Advance question from Lynelle: How will the new DSM V affect those of us whose kids are now diagnosed with Aspergers Syndrome and/or High Functioning Autism? Will our kids still be able to get the same service and therapies they now receive?
1:04
Hi Lynelle. Dr. Dawson here. The DSM V likely will combine autism, PDDNOS, and Asperger into one category called Autism Spectrum Disorders. We expect that this will actually help kids qualify for services because sometimes kids are denied unless they are diagnosed with autism. Your kids should be able to qualify for the same services they are receiving now.
1:05
Comment From Teresa

Sorry this question is not about genetic links, etc. If you want to disregard, it’s fine. Do you know anything about side effects of Risperdal to control behavior? My daughter has high-functioning autism and has been on R since last February. We are really concerned about this medication but nothing else was suggested except for Topomax which she also takes during the day to calm her down. Thanks!
1:05
Hi Thersa, This is Dr. Dawson. Risperdal is one of only a couple of medications that has been FDA approved for the treatment of “irritability” in individuals with autism. Irritability includes aggression, tantrums, and self-injury. Unfortunately, a side effect of Risperdal is weight gain, so a parent has to weigh the pros and cons. We posted earlier a link to a Tool Kit that helps parents make decisions about medications for their child. A recent study showed that medications such as Risperdal are more effective when combined with behavioral intervention. We are currently working toward developing drugs for autism that have fewer side effects.
1:06
Comment From Brie

When is genetic testing appropriate for a child suspected of autism or related developmental delays?
1:07
Dr. Scherer’s response. A major impact of the genetic testing will be if it can help to identify individuals with autism at the earliest possible time. This will then facilitate attempts for intervention treatments, which have maximal impact when started early. So, if there is a family history of autism the genetic tests (eg. chromosome microarray analysis) might be used early. Right now, most of the microarray analysis is occurring after their is some clinical indication of autism of developmental delay (or later). So it is being used mainly as a confirmatory test. As the information becomes better understood the tests will likely have an increasing impact. The American College of Medical Genetics, the Canadian College of Medical Genetics, and others have recently published medical papers describing when this type of testing is appropriate. You can find these documents in Pubmed. If you need help finding them I think we can direct you to the source.
1:09
Here’s the report. Downloadable freehttp://www.springerlink.com/content/b286184612181424/
1:10
Comment From Rebecca

Is there a link between vaccinations & autism?
1:10
Hi Rebecca, There have been many epidemiological studies that have examined the link between the MMR vaccine and a preservative used in vaccines (thimerosal) and autism, and no link has been found. Thus, we strongly encourage parents to vaccinate their children because we know that this can help ensure that the child doesn’t get serious infectious diseases. We are still exploring whether there may be rare instances in which a child with a specific medical or genetic background may have an adverse response to a vaccination that triggers the onset of autism symptoms.
1:12
Comment From Nancy

How can1 of my kids have austism but my other 2 are fine?
1:14
Hi 12:43 Nancy. Autism sometimes appears as ‘sporadic’ and in other instances as ‘familial’. We know the most about genes being involved, but environmental triggers could also be culprit. The other thing to consider is that autism favors males over females (~4:1). If I was a betting person I would guess your your child with autism is a boy. We’re just now learning the rules and the one common theme that emerges is complexity. Some of the newer genetic tests might help inform on autism appearing in other family members, but these are still rather rudimentary. We will post a link to a scientific paper Dr. Dawson and I co-authored that explains this more.
1:16
Hi Marie, This is Dr. Dawson. You are right that drugs are being developed that help restore the functioning of the synapse (connections bewteen neurons in the brain) in disorders such as Fragile X, in which autism is common. This is a very exciting and promising area of research and Autism Speaks is investing in studies in this area. It is possible that the same drugs that we hope will be helpful in Fragile X and other syndromic forms of autism will also be helpful for people with autism without syndromes. These studies and clinical trials are on-going. Be sure to subscribe to e-Speaks because we will keep you up to date on these studies that seek to develop medicines that can reduce core symptoms of autism.
1:17
You can subscribe to eSpeaks here! http://ow.ly/7b1dE
1:18
Advance question from Sheetal: Hi. What do you know about the genetics and chances involved regarding a neurotypical sibling of an autistic having a child with autism. Thanks Sheetal
1:19
Hi Sheetal. Dr. Scherer, here. Genetic counsellors have statistics they use for just such a question. Given the rapid advances in genetic research in autism there are now some known autism risk genes and in a proportion of families (~10%) there may be genetic information available that will help inform on this question.
1:19
Comment From Teresa
Hi :) Thanks for being here for us! My question: with so many children currently being diagnosed with autism – 1 in 110 – is it not equally important to research autism causes not only because of genetics but also caused by environmental issues?
1:20
Hi Teresa. I believe it is equally important to perform autism research into genetic and environmental causes of autism. To be honest, however, the genetic research (right now) is easier to do because we have the right technologies and there are endpoints in our experiments. We know precisely how much DNA and genes there are so we think genetic studies will be tractable. The environment on the other hand is much more complex. I think the majority of research will continue on the genetics side for the next five years, but then once we have done this work we will have a more solid basis to frame ‘environmental’ research questions on. This is my personal opinion, Dr. Scherer.
1:21
Comment From Donna

Is there any way to control my sons violent outbursts? He is constantly grabbing at peoples throats.
1:22
Hi Donna, This is Dr. Dawson. Many children with autism have challenging behaviors, such as violent outbursts. It is important to find out why the outbursts are occurring. Is your son frustrated, confused, bored, or trying to escape an unpleasant situation? A psychologist trained in “functional behavioral assessment” can help you determine the reason for the outbursts and then develop a behavioral problem to reduce these outbursts. These behavioral interventions are very effective. Sometimes medication can also be helpful. Another thing to consider is whether your son many have an underlying medical condition, such as GI distress or even a sleep problem, that is contributing to his outbursts. To find a psychologist in your area, visit our Resource Guide on the Autism Speaks website. We will send the link.
1:22
Here is a link to our Resource Guide:http://www.autismspeaks.org/resource-guide
1:24
Advance question from Tracy: Are there any studies going on right now? My oldest daughter was going to participate in a study, but did not qualify. However my younger daughter has been diagnosed twice for autism, non-verbal. Considered moderate to severe due to the lack of communication. now I cannot find any studies. I need to get her into a Developmental Pediatrician, but once I get the paper work in, it’s at least another 6-8 month wait to get in.
She does get help at her pre-school, and occasionally qualifies for SSI, but we do not make enough money to afford private at home therapy. Is there any help out there for her? She is an adorable, affectionate little girl. She makes great eye contact ever since her eye surgery for severe eye crossing. Since then it seems an entirely new world has opened up for her.
Communication is still slow going. Potty training is in progress, but slowly.
I guess I am just another parent in need of re-assurance and understanding that has lots of questions, and just wishes to find someone that might have some answers.
1:25
Dr. Dawson here. Dear Tracy, One of the best ways to find out about studies is to register on the Interactive Autism Network website (www.ian.org ). On this website, families are connected with researchers. I am sorry it has been so difficult to find services. It sounds like your daughter has many strengths. Have you taken a look at the Resource Guide on Autism Speaks’ website:http://www.autismspeaks.org/resource-guide ? I should list the services that are available in your area. Some services are covered by insurance, others are not. You may also find the IEP toolkit helpful: http://www.autismspeaks.org/family-services/tool-kits . We are working on a toilet training toolkit, so check back on the website later. 
1:26
Comment From Guest

I have one adult son (22) with early onset autism, an adult daughter who exhibits OCD traits and a son with non-verbal learning problems and some mild sensory issues. Am I reading you correctly – they can seek genetic counseling to help ascertain the risk of the younger two having a child with autism? Would my oldest son need to give a sample to determine the type of autism and if it’s genetic?
1:27
Dear 1:15 Guest. Your questions are bang on. I have answered in part some of them but I wanted to use this response to address a few thinks I may have missed. The genetic tests use either blood or saliva (usually blood) as the source of the DNA. While taking blood can cause some discomfort, that is all you have to do. Then the genetic testing occurs. To understand if there are genetic changes presented that may be ‘familial’ in nature you do have to get DNA from the parents and siblings (and sometimes extended family members). Some of the ‘autism’ genes that have been identified in the past few years (such as SHANK3, NRXN1 and other mentioned earlier) are also being observed to be altered in other disorders such as schizophrenia, OCD and ADHD. It is all very complex. I often say that the only simple thing in autism is that it is complex (both with respect to the clinical presentation and the genetics). The genetic counsellors will know more about assigning risk.
1:29
Comment From Janet

our daughter was diagnosed with PDDNOS at the age of 5.5. At that time, the psychologist was debating whether the diagnosis was appropriate and suggested that we have her retested in 3 to 4 years and that the diagnosis may change. She is very high functioning, with issues primarily being social. She is also very anxious. Is it at all common for a diagnosis in a young child to change or even disappear as they grow older?
1:29
Hi Janet, This is Dr. Dawson. ASD is diagnosed based on a set of behavioral symptoms. Overtime, those symptoms can change, either because of developmental changes or therapy. So, yes, the diagnosis can also change as the behavior changes. The important thing is to consider your child’s individual needs and symptoms. It sounds like the two areas that are challenging are social skills and anxiety. Behavioral interventions, especially Social Skills Training and Cognitive Behavioral Therapy, can be very helpful for higher functioning kids on the spectrum. These therapies can help a child learn to relate socially to other and feel less anxious. Medications can also help reduce anxiety symptoms. To find a clinician in your area, I suggest that you visit the Autism Speaks website and click on our Resource Guide. We sent the link earlier.
1:31
Comment From Guest

Will there be a way to tie the genetics of autism development with the risk of autoimmune disease development as being linked or possibly a genetic predisposition but then something triggers them and why someone with family history of autoimmune and or autism/neuro dysfunction seem to have a genetic link? IT seems like anything could be the trigger, stress, environment, viral, but there has to be some genetic underpinning as to why it can happen to those who later become afflicted. If the genetic predisposition is exposed and known, perhaps things could be done to prevent?
1:32
Great question. Without going on too long, there are an increasing number of research studies investigating this. It is an entirely plausible way to explain environment and genetic links. Dr. Scherer.
1:34
Comment From Brie

Thank you! I would love to have a link to those papers.
1:37
Advance question from Patricia: If a child with autism is making really good progress & is on ADHD meds, what additionally can be done to help irrational fears & anxiety that lead to anger? Meds for an 8 yr. old? If genetic predisposition-a child of alcoholic parents can avoid alcohol; what should an autistic person be taught to avoid? Thanks, Patricia
1:38
Dr. Dawson, here. Hi, Patricia. 
There is a treatment method called Cognitive Behavioral Therapy which has been shown to help children with autism who feel anxious do better. The child is taught strategies for coping with his or her fears before it leads to an emotional outburst. There are also medications that can specifically help with anxiety. Often, a combination of both behavioral therapy and medication is used. 
—
1:38
Advance question from Muhammad and Sabrina: Hi, My 6 1/2 years old son is second in 3 brothers , and elder and younger than him are 100 % normal kids but as he was growing elder his habits were not satisfactory all the times complains form teachers we were also known of all his habits then we consult a doctor a he prescribed us Ratline tab and call this as ADHA after a long treatment we haven’t seen any improvements after about 2 years of treatment we consult another doctor he prescribed us respedrol and called it as Autism.
1:39
Dr. Dawson, here. Hi Muhammad and Sabrina. Autism is frequently associated with attention difficulties (called ADHD) and medication can sometimes be helpful. I hope that your son is also receiving educational and behavioral therapies to help him succeed at home and school. To find out more about the different therapies that are available, you can visit our website. Seehttp://www.autismspeaks.org/family-services/tool-kits .
1:43
From Dr. Scherer: I have to get back to the laboratory now. I wanted to close by saying how important it is for families to get information from relevant and trusted websites (and other sources) such as Autism Speaks. The reason autism research has been so successful in the past decade is because the clinicians, scientists, funders and families are all working together. Many of my best ideas arise directly from listening to the questions the families are asking. This webinar was also a good learning experience for me today. Thank you. Dr. Steve Scherer. And from Dr. Dawson: Thanks, everyone, for such great questions. Forgive us for not being able to all of them. We’ll be posting a transcript of this webchat on the Autism Speaks blog atblog.autismspeaks.org.
Categories: Science Tags: , , , , , , , , , , ,

LIVE Chat with Jed Baker Transcript

October 14, 2011 Leave a comment

Jed Baker joined us for a LIVE Chat on October 14 to discuss several topics including social skills training as we honor the U.S. Department of Labor’s National Disability Employment Awareness month.

Jed Baker, Ph.D. is the director of the Social Skills Training Project, an organization serving individuals with autism and social communication problems. He is on the professional advisory board of Autism Today, ASPEN, ANSWER, YAI, the Kelberman Center and several other autism organizations. In addition, he writes, lectures, and provides training internationally on the topic of social skills training and managing challenging behaviors. He is an award winning author of five books on social skills training and managing challenging behaviors. His work has also been featured on ABC World News, Nightline, Fox News, the CBS Early Show, and the Discovery Health Channel.

11:50
Hi Everyone! We are about to start!
11:58
Comment From Amanda Zastrow

Good Afternoon.
12:01
Hi, Jed Baker, PhD here. Happy to hear from you. I run the Social Skills Training project which provides services to individuals with social and behavioral challenges. Happy to take questions about social skills training, behavioral issues or anything else that comes up.
12:01
Comment From Lisa Friedrich-Harris

Hello
12:01
Comment From kath

Hello
12:01
Comment From Brenda

good morning
12:03
Comment From Jessica

Hello, I have a question about my brothers behavior
12:04
Jessica, What is your question about your brother?
12:04
Comment From Jessica

It seems like his behavoir is controling the family
12:05
Jessica, what is he doing specifically. Need to know behavior and situation in which it occurs so we can understand what might trigger it. Triggers help us to determine how to intervene.
12:08
Comment From Deb Salanitro

How do you feel the new anti bully law affect those with aspergers in NJ where their rigid thought processes could come across as bullying?
12:08
Comment From Deb Salanitro

Hi Dr Baker – I’ve had the pleasure of hearing you speak with Temple Grandin about a year and a half ago
12:10
Jessica, when folks do not get their way, we want to understand if the issue is about waiting, accepting no or dealing with a frustrating task. For waiting, we create scedules and use timers so folks know exactly when they will get what they want. For accepting no, we use written and picture schedules to help them understand that if they do not get one thing, they can still have another. For frustrating taks, we modify those tasks and teach how to ask for hel. Much of this is written in my No More Meltdowns book along with prevention plan guides for many other kinds of triggers
12:14
Deb, regarding the antibullying law: I believe it will be very protective of our ASD students. Your concern that they will be accused of bullying due to editing problems or lack of self-control is a real concer. Be aware that there is an excpetion in the NJ law that bullying among special needs students may not be subject to the same reporting procedures because of the awareness that some of these students may demonstrate behaviors that our a manifestation of their disability. MOreover, every local school has the control of how they will handle the bullying behavior with education and/or discipline. The law only dictates the reporting procedures.
12:16
Comment From Jen

My question is regarding my son. He is 5 and has autism. It seems like he is just starting to have interest in playing with other kids but it seems like he doesn’t know how to play. How do I teach him how to play?
12:20
Jen, teaching social skills like play involves not only what to do, but making sure children are motivated to do it. Consider exploring first what playful interaction your son would enjoy with you, trying different games based on his comfort and language skills (e.g. hide and seek, follow the leader, go fishing, hungry hippos, are all games that do not involve language). Then create a routine where he can pick these games from a picture board with you. No involve peers to engage in those games with him. We talk quite about about developing peer buddy programs in my social skill books (see www.jedbaker.com). The main idea is to consider your child’s interests and comforts and not just push him or her to engage in the play of others. It’s a two way street teaching both peers to engage your child and your son to engage them.
12:21
Comment From Lisa Friedrich-Harris

Hi Dr. Baker, I work with ASD adults, college students. How should I assist students who wish to receive accommodations and be more social, but do not want anyone to know of their ASD?
12:25
Lisa, To receive accommodations, college staff will need to be informed. They may not need to know the individual has an ASD disorder but they will need an official diability to receive those supports. Some may prefer to use the term ADHD or a specific learning disability and will need to have documentation to this effect. Peers do not have to know, however, part of becoming closer with a peer is to share personal information so students may decide to disclose to those they wish to become better friends.
12:27
Comment From louise

why is it thats kids need to be on med
12:27
Hi Louise!
12:28
Medication is a tool that we consider under two circumstances. #1: When there is a crisis, someone might be suicidal or homoicdal and about to be kicked out of a placement and we can’t wait for a good behavior plan or create the time for a plan. There is a crisis of the moment.#2: Another circumstance is when you have created a good behavior plan and we are still seeing great interferance with functioning. THen we might look at medication as an addition tool.
12:31
We always have to look at the cost to benefit analysis of a particular medication. What are the side effects and what are the hoped positive benefits? It is going to be different for different kids. For attention issues and for anxiety and depression issues there is some pretty good controls research that shows vigorous exercise can be as effective as a stimulant medication for attention issues and as effective as an anti anxiety medication for depression, and certainly a better side effect profile.
12:33
Here is a link for Fitness and Wellness:http://www.autismspeaks.org/family-services/health-and-wellness
12:33
Comment From Amanda Zastrow

Im in the planning stages of starting a business and I am planning on hiring employees with special needs. Are there good resources for research avaliable about this topic? Also should I have a behavior policy in place before hiring? If I do have a behavior policy in place should I also have a councelor or a therapist avaliable as needed if a situation would arise?
12:34
Hi Amanda!
12:34
I am on the board at ASTEP, an organization now dedicated to supporting employers to hire folks, particular with ASD.
12:36
There is a lot of good information on their blog and website. I wouldn’t have a behavioral policy that is different than any other employee. The only difference is they may have a job coach that will help assist in behaviors that may emerge. If done well, the employee will not have those behaviors when they fill the position. ASTEP http://www.asperger-employment.org/http://blog.autismspeaks.org/2011/10/12/asperger-syndrome-training-employment-partnership/
12:36
Comment From Brenda

Bullying is one of the reasons my son can not stand school.
12:39
One of the most important components of an anti-bullying program is to empower students to police themselves, to be good bystanders. This is something we have always advocated in peer leader and buddy programs for all of our students, to both protect them and reduce isolation. The research demonstrates that not only do programs help kids with disabilities, but it helps the kids that become peer leaders and buddies with self esteem and also better grades and achievement. These programs and some of the research are discussed in my Social Skills books, ‘Social Skills Training’ and ‘Preparing for Life.’ You can access those atwww.jedbaker.com
12:39
Comment From Jeanette

Good afternoon Dr. Baker. My question is regarding my 12 year old with Asperger’s. We’d like to know how else to help our son’s impulsiveness when he’s frustrated. One main example I can give that happens most often is another kid will bother him and his first reaction in the moment is to kick or hit them. We can role play until we are blue in the face, he can recite what he needs to do but he allows his emotions to rule him more often then not. He’s suspended from school quite often due to this, but he only kicks or hits back when he feels or perceives another student is against him.
12:40
Hi Jeanette! I love that you had a specific example. When we hear that a child is becoming frustrated, we always want to know what the triggers are.
12:43
Once we know what the triggers are, we can develop a prevention plan. Now we know that being teased or bothered by another problem is a trigger we can prepare him for that, well before he gets upset and how to interpret the other child’s behavior so he doesn’t take it personally and how to avoid certain children. This type of teaching alone will not go very far with a child that is impulsive. We also need to help generalize those skills. To do that, we need to prime him just before situations where such teasing may occur; ie: prior to lunch or school or other social times. Sometimes we do this reviewing of a kew card and then we coach him as it is happening. Then we review after the fact. This key component of skills training are discussed in our social skills books.
12:44
Comment From Catherine

My son is high funcyioning AS, has OCD and has recently been diagnosed with Bi Polar disorder. The social realm is extremely painful for him to cope with. He desperately desires being social and seeks out opprtunites to be social. The problem lies within his application of reciprocating with his peer group and his siblings. When he does not say the right things, or changes the subject to what fits his intersts are and does not get response from others, he tends to feel rejected. The whole experience goes south. As a result, he has tried to create a false realm of socializing in all the wrong context. He then says things that are sexulally innapropriate, profane and rude. We know he is trying to use the shock approach to try to get attention. It almost always results in nagativity and issolation. We are desperate to give him the proper social training and that is the main focus this year. He tends to resist the training and feels like he can do it alone. Any creative ideas on helping him realize the enormous benefits of social training? Even organizing a social training session with peers before hand, has proven friutless. we won’t give uptrying. He blames me for ruining his life when it comes to having friends. Sometimes I ask myself, at what point should I not try to push the social realm on him? Temple Grandin illustrates this point and, I wonder. Also, he is medicated to help with his extreme anxieties.
12:45
Hi Catherine, this question really highlights what are the key components of social skills training. There are five components to think about
12:46
#1: Have we targeted the right skill? We know this young man needs to learn common and reciprocal interests of his peers and to edit what we call sensitive topics. Another way of putting this is, getting attention in positive ways.
12:48
#2: We need to find the motivation to want to use these skills. That motivation could be intrinsic or naturally occurring, harnessing his desire to make friends and to be liked. Or this motivation could be externally based, so following these skills would lead to an external reward like video games or computer time.
12:48
#3: We need to teach these particular skills step by step. What are the words you should use and what are the words you shouldn’t be using.
12:49
#4: We have to generalize these skills to prime, coach, and review in situations in which you will need to use these skills.
12:50
#5: We also need to target typically developing peers to reach out to this young man. He won’t have the motivation to change his behavior unless his peers are willing to hang in with him and show a desire to be with him if he engages in appropriate ways.
12:50
Comment From Tricia

Hi, Dr. Baker, my question is how do we deal with the increasingly negative attitudes of people when I take my children to the store or the restaraunt? Even very young children are mean and rude. It makes our life even more difficult and isolated than it already is. Any ideas of how to handle this, without anger?
12:53
Hi Tricia – Believe it or not, most people understand. Most people who stare may be staring because they have been in the same situation. But, some people don’t get it. No one can control their children 100%. We gain respect from others not because we can control our children completely, but because we can control ourselves. If you can keep cool in the face of challenging behavior, you deserve a medal. We need to laugh off critical or judgmental comments people may say.
1:02
I am sorry I couldn’t get to everyone’s questions! For more resources on dealing with challenging behaviors, social skills, and bullying please visit my website; www.jedbaker.com. You will find information about my books and other resources! One of our newest tools is an app based on the ‘No More Meltdown’ book that allows folks to track challenging behaviors and the triggers to those behaviors in real time. It then syncs to a website, www.symtrend.com/nmm as in ‘no more meltdowns,’ which analyses the data and guides users to appropriate prevention plans. My next workshop for those who want to see me live, is in West Nyack, N.Y., on November 30th. Registration information is on my website. For information on exploring, maintaining, and obtaining a job, you can look in my book, ‘Preparing for Life,’ but also, a wonderful free resource is available atwww.dotolearn.com/jobtips
Categories: Family Services Tags: , , , , , , ,

Family Services Office Hours – 10.12.11

October 13, 2011 3 comments

Office Hours easily connects families to a wide variety of autism-related resources, including Family Services Tool Kits, and the Autism Speaks Resource Guide, an online national database of autism providers and resources searchable by state and zip code.

Family Services Office Hours is designed to quickly provide access to resources that are available and free to the entire autism community.

The Office Hours sessions are staffed by ART coordinators who are specially trained to connect families affected by autism to resources.

2:43
Hi There! We are getting ready for Office Hours! Hang on!
2:59
Welcome to Office Hours! Family Services is taking questions and we are here to help offer resources and guidance!
3:00
Comment From Guest  

My son is in an EIBT program and is currently almost 3. Once he turns 3, the school district is wanting to terminate that program and place him in special ed. He’s currently in a reg preschool with a diagnosis of PDD. He definitely still needs an aid to intervene and redirect. The school district is telling me the funding isn’t there. Any suggestions on who to talk to?
3:02
Hello: Budget cuts across the nation are creating fear and apprehension, and there are real budgetary realities that school districts–all districts–must contend with. On the other hand, the district cannot simply provide services because because of budgetary concerns and if any IEP proposes to do so, again, “stay put” comes to the protection of the parents who have no choice but to move formally to protect their child’s program components
3:04
You may want to work with an advocate who can help guide you through this process. Check out our Resource Guide in the Family Services section at.
www.autismspeaks.org
3:04
Comment From shaun lavalley 

ive got a son with assbergers and never got any help dont know wear to go
3:04
Hi Shaun! You have come to the right place. We have an Asperger Syndrome and High Functioning Autism Tool Kit that would be a good place to start.http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
3:04
Families whose children have been diagnosed in the last 6 months may request a complimentary hard copy of the 100 Day Kit or the AS/HFA Tool Kit by calling 888-AUTISM2 (888-288-4762) and speaking with an Autism Response Team Coordinator.
3:04
Comment From Guest 

my little girl is 4 an is in headstart she only get 30min of thearapy a week or thats what they tell me and i dont even know what therapy she has been going to school for the past year and hasnt made any progress
3:06
Particularly for children with autism who are often highly distractible, a 30 minute session is not adequate. You may need a private evaluation to measure this problem, and to make recommendations you can then present to the district
3:06
Hi Guest! You will need the school to do an assessment of her strengths and challenges. Based on that assessment you can develop an IEP. You need to get as much information as possible.
3:07
Comment From carla 

my son was recomended to have twice weekly speech, but the school will only give him one, they say its all he needs what can I do
3:08
Hi Carla – you have the right to do an independent evaluation and based on those results you can present that to the IEP Team.
3:09
If you feel differently than the school recommendation, it is best to get an independent evaluation. Parents have the right to recommend therapy and the amount of time the child gets for therapy.
3:09
Comment From melissa  

my little girl is 4 an has autism she is in headstart she only get 30min of thearapy a week or thats what they tell me and i dont even know what therapy she has been going to school for the past year and hasnt made any progress
3:09
Hi Melissa- We answered your question earlier. Do the info we gave help?
3:11
Comment From amy  

Our local school district won’t provide any services for my son because he reads above grade level, so his autism “does not have an educational impact”. He did not speak in sentences at school or write anything. I think that impacts his education, but they kept going back to the reading level.
3:14
Hello Amy – The IEP team members need to be in agreement on the services a child requires. If you feel additional services are needed, ask for an assessment that will give you information about the child’s limitations. Objective data measurements will spell out what services the child requires.
3:14
Comment From melissa 

my daughter is 4 an cant talk she is still in diapers an she is still on the bottle i dont think the school is helping her any what can i do
3:15
Hi Melissa – If your needs are not being met, you have to speak up for your child’s rights. Parents are a VITAL member of the IEP Team! You are your child’s best advocate. Your child is entitled to an education that is tailored to his or her special needs and a placement that will allow them to make educational progress. Here is a link that you may find to be helpful!http://www.autismspeaks.org/what-autism/your-childs-rights
3:17
Comment From Guest 

I have a year old son that attends an Early Interention school for 2 1/2 hours 3 times a week, and during that time they give him a 1/2 our of speech and 1/2 hour of O/T. They speak highly of him and say he is doing great but when I take him to a separate Speech therapy session, he will not cooperate at all screams and cries and hides under the tabe. They suggest I get him a TSS for therapy. I contacted someone they recommended and they sais they have very limited spots available and they are for kids who need 15+ hours or more of TSS services per week. I dont know what to do.
3:19
Hello- It sounds like a professional is making the recommendations for your daughter to receive more services. Ask the professional to put the request in writing, this may give you more leverage to get services faster.
3:19
Comment From Kaydell 

I keep hearing how iPads are making such a difference for some on the Autism Spectrum with the many apps. available. I truly feel that my kiddo would be one of the children that would benefit from this device considering his communication delay. It is a terrible feeling that due to the cost of the iPad I am unable to purchase a device that could make my son’s life easier. Do you know of any organizations that are offering iPads at discounted rates for families in need?
3:21
Hi Kaydell – You are right! iPads have benefited a large part of the autism community. We are thrilled to be giving away iPads in 2012, but you can also find other organizations that do as well. It is just at different times of the year, and you have to keep track! Some parents have negotiated with their school districts to get iPads for their children because they are considered a communication device.
3:22
We have a Community Connections ‘Technology and Autism’ that can give you more information!http://www.autismspeaks.org/family-services/community-connections/technology-and-autism
3:22
Comment From Heidi 

What kind of resources are there in the Pittsburgh PA area for transitioning a child to a new home environment? Any recommendations in making this as easy as possible for my 6 yr old Autistic? FAS grandson.
3:26
Hi Heidi-Sounds like your grandson is moving to a new home, yes, this will require some thought and a transitional plan. I would recruit your grandchild’s school and home team to put a plan in place, and one that can be implemented in different environments.
3:26
Here is our Resource Guide where you can search for services in your state! http://www.autismspeaks.org/resource-guide
3:26
Comment From rachel

was pic day at school, she hated it, first she had somewere els to go, then she saw th dredded line, then it was crouded, then she was made to sit and tri to be happy… ha the photagrapher thankfully was paciant and took 4 pics. or els she would of had a prfessinal pic of her with a angy face and a sock in the air.. lol just wanted to share, thanks for everything you guys r doing
3:26
Comment From Michelle

the communication device would fall under the IEP as assistive technology.
3:27
Hi Rachel! Sounds like a crazy day! Picture day isn’t easy for anyone! Thanks for joining us and your support!
3:27
yes, I have been hearing more and more about iPads being approved by districts. Its certainly worth a try.
3:27
Comment From marisa

My two year old was recently diagnosed with autism & he’s not speaking yet. Any tips/ books on communicating especially for potty training?
3:29
Hi Marisa – If your son was newly diagnosed the 100 Day Kit will be a helpful resource. It was created specifically for newly diagnosed families to make the best possible use of the 100 days following their child’s diagnosis of autism.http://www.autismspeaks.org/family-services/tool-kits/100-day-kit
3:29
You may want to speak to your speech therapist about ways you can work on your child’s communication at home
3:31
As for potty training… that is a major challenge families with autism face. This book by Ashley Hickey, ‘Successful Potty Training,’ is also helpful.http://www.autismspeaks.org/resource/successful-potty-training
3:31
Our Science Team recently tackled this question and you can find what they came up with here!http://blog.autismspeaks.org/2011/09/23/has-anyone-studied-how-to-help-toilet-train-children-with-asd-2/
3:31
Comment From Michelle

I personally found that sign language can help give them a language until the speech therapist and your child can work on the verbal language. There are easy signs for bathroom, food etc that will help take some of the daily frustration away.
3:32
Comment From kevin

i am having an issue with my 10 yr old son, 5th grader in school.. he is a good student, but it something happens during the day that doesnt go his way, sh just shuts down and becomes defiant to teachers and the principal, he is diagnosed with Aspergers
3:33
hi Kevin, We have 2 resources you may want to check out. The first is the School Community Tool Kit
3:35
The Aspergers Syndrome/ High Functioning Autism Tool kit is also available online. The link is in the above post.
3:36
Comment From Guest

i will definetly look into this, but are there any programs that are in the monmouth county// ocean county area in NJ
3:37
Hi Guest! You can search our Resource Guide by your state!http://www.autismspeaks.org/resource-guide
3:41
Hello – Your questions are right on! We have a few resources that will help to answer your questions. You can access the the IEP guide at
http://www.autismspeaks.org/sites/default/files/iep_guide.pdf
The other resource is the WrightsLaw website:http://www.wrightslaw.com/
3:42
Comment From Michelle

I feel for you kevin, my 13 yr old will do the same thing, but it has gotten better. He has improved, keep working with your son. Today he had a terrible meltdown, but it is his first one this school year. All the others have been slight refusals and then he finally did the work. So there is hope
3:42
Hi Tashalee – You are doing the right thing by having your child evaluated. The earlier your child get diagnosed the better. You can begin early intervention and it will make all the difference. He is our 100 Day Kit created specifically for newly diagnosed families to make the best possible use of the 100 days following their child’s diagnosis of autism or AS/HFA.
3:43
Comment From Tashalee

MY 2yr old goes for evaluation next week, we are preparing for what we already know, it all makes sense now. He does’t say much a few words, how do I help he and whats this about Ipads helping?
3:43
Comment From brenda

what do you tell fmaily whos not really been in your childs life for years then all of a sudden they pop in but dont want to do the tthings u suggest with your child?
3:46
Hi Brenda- The Autism Speaks Family Support Tool Kits: Parents, Siblings, Grandparents and Friends will be published this week in eSpeaks. The Guides cover the emotional reactions to having a family member with autism. The question you are asking is covered in the Parent’s Guide. Make sure you check out eSpeaks on Friday.
3:47
Comment From Tashalee

Thank you, its so wonderful to know that we are not alone.
3:47
Tashalee you can always come to us for support! Please check out our Blog: blog.autismspeaks.org and visit our Facebook Page: www.facebook.com/autismspeaks for more community!
3:48
Comment From Guest

We live in Spencer Iowa, and have 2 boys (8yrs and 13 yrs) on the spectrum. We have a couple support groups semi locally and they are helpful, but I am looking for someone that can help me advocate for my children. The support groups have a lot of advice but I don’t know if I am not asking for or requesting for help in the right way. I will admit I can get very wound up, and boisterous when I don’t feel like I am being listened to. I was hoping you can put me in touch with some on who can help me by telling me if I am unreasonable in my request, or possibly join our IEP meetings to back me.
3:50
Hi Guest! You are not being unreasonable at all in requesting to have an advocate in your IEP meeting. You can search our Resource Guide by your state to find an advocate in your area!http://www.autismspeaks.org/resource-guide
3:50
You can also check out our IEP Guide for further information:http://www.autismspeaks.org/family-services/community-connections/back-to-school
3:51
Comment From Amy

We live in Spencer Iowa, and have 2 boys (8yrs and 13 yrs) on the spectrum. We have a couple support groups semi locally and they are helpful, but I am looking for someone that can help me advocate for my children. The support groups have a lot of advice but I don’t know if I am not asking for or requesting for help in the right way. I will admit I can get very wound up, and boisterous when I don’t feel like I am being listened to. I was hoping you can put me in touch with some on who can help me by telling me if I am unreasonable in my request, or possibly join our IEP meetings to back me. Thank you
3:55
We are so excited to welcome Jed Baker to chat with us on Friday! Jed Baker, Ph.D. is the director of the Social Skills Training Project, an organization serving individuals with autism and social communication problems.
3:58
Well thanks to everyone who participated! Our hour has come to an end! You can always call the Autism Response Team (ART) members are specially trained to connect families with information, resources and opportunities.Call us at 888-AUTISM 2 (288-4762) or email us atfamilyservices@autismspeaks.org.
4:00
Have a great day!
Categories: Family Services Tags: , , , , , , ,

LIVE Chat with Jed Baker

October 12, 2011 2 comments

Please join us on Friday, October 14 for a LIVE Chat with Jed Baker at 12 pm EDT. Jed will be here to discuss several topics including social skills training as we honor the U.S. Department of Labor’s National Disability Employment Awareness month.

Jed Baker, Ph.D. is the director of the Social Skills Training Project, an organization serving individuals with autism and social communication problems.  He is on the professional advisory board of Autism Today, ASPEN, ANSWER, YAI, the Kelberman Center and several other autism organizations. In addition, he writes, lectures, and provides training internationally on the topic of social skills training and managing challenging behaviors.  He is an award winning author of five books on social skills training and managing challenging behaviors. His work has also been featured on ABC World News, Nightline, Fox News, the CBS Early Show, and the Discovery Health Channel.

Books and Resources available at www.jedbaker.com

Social Skills and Frustration Management DVD This dynamic presentation is extremely valuable to all family members and professionals working with individuals with autism spectrum disorders, attention deficit disorders, learning disabilities, mood and anxiety disorders, and other issues that impact social-emotional functioning

Preparing for Life: The Complete Handbook for Transitioning to Adulthood for Those with Autism and Aspergers Syndrome. A comprehensive book to create plans to transition to adult life. Practical information on applying for college, vocational training, residential programs, and financial assistance is provided along with guidelines for helping students understand their strengths and challenges so they can advocate for themselves. The book contains over 70 skill lessons pertaining to friendship, dating, employment, transportation, finances and managing frustration and anxiety, allowing students to prepare for all aspects of adult life.

Social Skills Picture Book for High School and Beyond This fully illustrated book includes real photographs of teens and adults demonstrating many of the skills from Preparing for Life in picture form

Social Skills Training for Children and Adolescents with Aspergers and Social –Communication Problems This comprehensive social skill manual has 70 skill lessons, behavior management strategies, and peer sensitivity lessons to be used at home or in school

The Social Skills Picture Book: Teaching Play, Emotion and Communication to Children with Autism This book displays real pictures of children demonstrating over 27 different skills. It is meant for younger students who learn better by seeing skills than hearing an explanation of skills.

No More Meltdowns: Positive Strategies for Dealing with and Preventing Out-of-Control Behavior This new release provides tools to de-escalate meltdowns, understand your child’s triggers and prevent problems situations, and improve the relationship with your child.

No More Meltdowns is now an App!
A Companion website and mobile app to the book No More Meltdowns. Record behavior while it happens: Use a PC to enter behaviors and triggers online, or use an iPhone, iPad, iPod Touch or touch-based smartphone. Analyze triggers to behaviors and use the quick prevention plan guides to help manage and prevent challenging behaviors. Available at www.symtrend.com/nmm.

Be a Friend Music CD (www.socialskillsmusic.com): 16 songs to reinforce social skills for children 2-9.

Upcoming workshops

All Kids Can Succeed!

Wednesday, Nov 30, 2011

JCC-Rockland, 450 West Nyack Road, Nyack, NY

Sponsored by Jewish Family Services of Rockland County, NY. email info@bossyfrog.​com.

For Dr. Baker’s complete schedule of workshops, go to www.jedbaker.com

Categories: Family Services Tags: , , , , , , , , , , , ,
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