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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

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!

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

LIVE Chat with Dr. Ricki Robinson Transcript

September 27, 2011 2 comments

On Monday September 26 Dr. Ricki Robinson, author of  Autism Solutions: How To Create a Healthy And Meaningful Life For Your Child, hosted a LIVA Facebook Chat.

Having a child with ASD can and will have an impact on your immediate family and extended family. While it is easy to be distracted by your child’s often overwhelming needs, it is important to carve out time for your family and friends. Often they can be your best support. Additionally you may need help dealing with many concerns, including those that are emotionally charged, such as how to tell others about your child, whether to have more children, how to incorporate siblings into his program, and practical ones such as financing respite care and just organizing your life and family, as well as getting your own job at work done.

2:34
Hi everyone! We’ll be live with Dr Ricki Robinson in just under 30 minutes, at 3PM EST. In the meantime, feel free to submit questions!
2:42
Type any questions in the box below and hit ‘send’. Don’t worry if you can’t see your question, it goes straight to us!
2:42
We’ll be live with Dr Ricki in 20 minutes!
2:52
Today Dr Robinson will be …..taking questions about Having a child with ASD the impact on your immediate family and extended family.
2:59
Hi Everyone, we’re here with Dr Ricki Robinson. We’re thrilled to have her back after the last live chat she did with us!
3:00
Dr Robinson: I am so pleased to be with you again. My first chat was an exciting, intense hour! I’m a pediatrician and I’ve devoted my practice to the care of children and families affected by autism for the past 20 years.
3:01
Dr Robinson: I have recently published Autism Solutions: How to Create a Healthy and Meaningful life for your child, in which I share with families what I’ve learned over the years that has helped their children move up the developmental ladder, and problem solve the challenges they meet along the way
3:02
Dr Ricki: A portion of the proceeds of the book of course gets donated to our host, Autism Speaks!
3:02
www.DrRickiRobinson.com for more info!
3:03
So without further ado…. first question!
3:03
Comment From Loni Alpino

Is there any monetary aid for an Autistic child for feedback and therapy services?

3:04
Hi Loni!
3:04
You ask a question that plagues every parent and family who has a child with autism.
3:05
There are so many stressers that families face, and financial issues are one of the primary ones that we see in families of children with special needs.
3:05
There are potential sources of aid…. many of them depend on the state in which you’re living.
3:07
Many of the services in some of the states are provided for through state agencies. As an example, I come from California, and children who have been diagnosed with ASD qualify for services through both the educational system and the California department of Developmental Disabilities. So my recommendation is to mine the services available in your community for funding, and don’t forget about medical insurance.
3:08
Through medical insurance if you have a willing physician, you can sometimes get funded for ancillary services that might be covered by your own insurance policy, or through Medicaid, especially if your child has other medical diagnoses such as seizures, GI problems or special dietary needs.
3:09
additionally approximately 25 states have now passed state insurance reform for autism service coverage to provide many of the services that occur in home for your child.
3:10
Once you know where all your sources of funding might be, then take a critical look at your treatment plan that is required for your child, and see how each element might be covered by each of these resources to put together the most robust treatment plan for your child possible.
3:11
For more information about the state supported autism insurance laws in your state, i suggest you go to www.autismvotes.org
3:11
Comment From Guest

My daughter is 2 years old and was diagnosed autistic on April 1st. I have some family members that keep insisting she’s just delayed. They don’t understand it’s more than her not talking yet. She doesn’t respond to her name, doesn’t point to let us know what she wants and really has never babbled. She makes noises, but not what I would call babbling. Any suggestions.

3:12
Your situation is very common in families where a child has been diagnosed with special needs, most especially autism.
3:13
There are so many emotional processes that are occurring for the family as a unit, and for each of you individually after getting this diagnosis.
3:14
Of course there is the initial shock that can send you spiraling into a true grieving process, and each of you in the family will work through this in your own time frame. Part of that process includes a stage of denial as particularly i see this in family members who aren’t living with your child day to day.
3:15
It will take them often longer to come to terms with the diagnosis and along with everything else we have to be patient for these things to happen. I particularly see this in grandparents, whose often have forgotten what it was like in the early years with their children, and the bumps that happen along the way.
3:16
To that end Autism Speaks has published ‘A Grandparent’s Guide To Autism’, that was developed specifically to help grandparents understand and deal with the emotions related to a diagnosis.
3:18
I find that when other family members get some understanding of what autism is, and they can get beyond the autism label to understand what are the strengths and challenges of the child who has autism, and learn about ways in which they can learn to relate and then help their family, that this will put the family members back on track to becoming a support that you might be able to rely on.
3:22
There are also professionals who understand this process who can provide help for those who are really struggling, and sometimes that is necessary. Finding a caring pediatrician with whom you are able to share these issues may provide you the support you need to be able to take the help back to your family members. In my experience having such a case manager for the long term allows you to not only meet both the medical needs of your child and your family, but also your emotional needs.
3:22
Comment From Maureen Early

What is the best way to educate your extended family about autism, especially when it looks like a child is tantruming because they’re “naughty” instead of due to their symptoms of autism.

3:22
Hi Maureen!
3:23
I am so glad that you asked that question, because it is one of my pet peeves.
3:23
So often children, all the way up to adults with autism, are described by their behavior, as you noted.
3:23
and yet…. this behavior often comes the greatest clue that we have to what a child is thinking or feeling.
3:24
and why do I say that? When a child is not able to communicate, and yet has intent, what would we expect them to do?
3:24
Of course they’re going to do something to express themselves.
3:25
So our job is to become a detective, and to try to figure out what they’re trying to tell us. So often these behaviors don’t have intent, but are actually a response to the environment. We know that children with autism have unusual responses to the world around them.
3:26
Additionally one of the senses that we have is how we interpret our own bodies. It’s how we know that we’re hungry or that we have a pain, and where that pain is going to. My hypothesis is that it is just as difficult for children with autism to understand this sense as it is for them to understand the world around them.
3:27
Therefore quite often a change in behavior is related to how your child is feeling at that time. If a behavior is persistent and is effecting his quality of life, then it is my experience that a medical illness must be ruled out. I have covered this issue extensively in my book, for those of you who might be concerned that your child may be experiencing a medical problem.
3:28
However it is important that we “demystify” a child’s behavior for your family members. If you can ask your therapy team to help you with language that is understandable to describe these behaviors to your family members so that they can also begin to understand what your child might be expressing. This can be incredibly helpful.
3:29
Comment From Relonda Supel

What therapies and doctors should a child with autism have in place beside the therapy he gets in school and seeing your usually pediatricians

3:29
Hi Relonda!
3:29
Putting your team together is one of the paramount issues for parents and families.
3:30
Depending on your community, there will be a variety of resources that you can tap into.
3:30
If you happen to be in a community where there are few resources, then Autism Speaks has provided a resource guide to help you identify local resources.
3:31
Here’s a link to that guide:http://www.autismspeaks.org/community/fsdb/search.php
3:31
Depending on the resources available, you still need the manager of your team. In general it becomes one of the parents.
3:32
Sometimes you are able to find a professional on your team who has experience in case management. Pediatricians and other physicians sometimes do have this expertise, and you will want to find out about that.
3:33
Deciding on who your team members will be really comes from understanding your individual child. Nowhere in medicine have I experienced a complex disorder requiring so much individualization of a treatment plan.
3:33
When you determine through your professional consultations what your child’s challenges are, then my approach is that every challenge deserves the proper treatment.
3:35
This means that your treatment team will look like a wheel, with the child, parents and family at the center of the wheel, but the therapists as the spokes of the wheel, and the tire of the wheel are all the challenges and barriers that your child faces. What we know is that these challenges will change over time, especially as your child goes into adolescence and into adulthood, and so this therapeutic team will change accordingly.
3:37
That’s a long way of saying that I can’t tell you how many doctors you will need, and you will be the advocate for that, depending on the challenges that arise. Finding team members where you can have an ongoing dialog where they will listen to your concerns is key to finding the right professionals at the right time. And you, as the parent, are the keeper of that key.
3:37
Comment From Lou Melgarejo

My wife and I fear that when our kids are older, our two neuro-typical kids will resent their autistic sister for the restraints that her condition has put on our lives. Do you have any suggestions for raising siblings without resent?

3:38
Hi Lou! You too ask a question that is on the mind of most parents who have more than one child.
3:38
If truth be told, it’s on the mind of all parents, as typical siblings, as they grow up, often become resentful of their siblings, and their perception of their place in the family.
3:39
For siblings of children with autism, these feelings may come sooner, and are more real.
3:39
because off the 24/7 nature of living and helping a child with autism.
3:40
Although I can’t guarantee that you can’t raise siblings without resentment in any family, there are things we can do. I think they first thing you have to do is to help your siblings understand what is happening for their brother or sister.
3:41
We must always inform siblings as directly as possible using age appropriate language, and be certain to not let our fears and worries be evident, as they are able to pick up on these aswell. I like to describe to them, not in the terms of the autism label, but we have to tell them what that really means for their sibling.
3:43
I find that older siblings, who so much crave to have an interaction with their brother or sister, but don’t know how, can be mentored by giving simple techniques and instructions as to how they might be able to engage their sibling in a meaningful way that will be fun for both of them. I find also that having a sibling with autism is a double edged sword: resentment goes hand in hand with guilt.
3:45
Siblings may feel guilty because they do not have autism, and yet may resent the time that you might have to spend with their brother or sister. These issues are best dealt with if brought to the front and center in a way that will help these children deal with their own emotional journey.
3:47
Studies have shown that siblings who have brothers or sisters with ASD often learn to cope quite well. For many learning to be a helpful member of the family becomes second nature. In fact as an adult a sibling one of the helping careers and may become more skilled than their peers in responding positively to their own emotional needs.
3:48
if you happen to have a child who’s having a difficult time, especially as an adolescent you may also need to consider getting them the support they need to work through these emotional issues.
3:48
Comment From Bobbie Jo

sometimes my son seems as if he is bi polar. I expressed my concern and I am told that it is normal for a child that has autisim?

3:49
Actually Bobbie Jo, what you’re describing, which I presume is mood changes, both highs and lows in your son, can occur in autism, but is not necessarily part of autism.
3:51
Often these mood concerns can interfere with your child’s daily life and absolutely derail learning and interactions. if this is the case, then we do have ways of addressing these issues medically. Certainly your son deserves a full medical evaluation. In this case I would suggest asking your primary care physician first, to refer you to a specialist, which might be a child psychiatric or neurologist, or developmental pediatrician who has expertise in this area.
3:53
Mood issues in autism is considered a co-morbid condition that are overlapping the symptoms of the autism. this is not always easy to sort out, and is why you need a physician with expertise to help you determine what is happening for your child, and the correct treatment approach. Again, if you’re having trouble finding a professional in your community who can help you, please check out the Autism Speaks resources guide:http://www.autismspeaks.org/community/fsdb/search.php
3:54
Comment From Joseph

Do you put any emphasis into the new belief that Autistic kids should now also have included in their therapies joint attention therapy?

3:55
I am so glad you asked that question Joseph.
3:57
For children with autism, who at their core have a delay in social and emotional development, it behooves us as part of their treatment program an approach that helps them gain mastery of social interactions. In order to do that one has to go back to the basics, and help a child develop his ability to attend to another in a meaningful way, in order to engage and interact.
3:57
Recent research has confirmed that children who developed joint attention have greater gains in language than those who have not.
3:59
This underscores the hypothesis that strong foundational social and emotional development is really required for a child to be able to think and create. This at the end of the day is what we hope for all children with ASD. So how are you going to do this? There are many techniques that can supplement what your program is, or can be the primary focus of your program, that will support your child developing joint attention and engagement and reciprocity in play.
4:00
I use the DIR/Floortime approach in order to foster these abilities. I have described them fully in “Autism Solutions, and describe how to implement Floortime in the home throughout the day.
4:03
Other approaches that can help include the Early Start Denver Model. Practitioners of these approaches are increasing around the world. Floortime was designed for parents to learn how to interact with their children by understanding how their child learns about the world, what they’re individual differences are that derails this interaction, and then entering their world with this understanding by following their child’s interests.
4:03
If you wish to pursue this, Autism Speaks has a reference library for books on these subjects.
4:04
Remember, shared emotion with others and relationships that are developed are the glue that supports all that your child does.
4:07
I want to leave you with a final message today: I’m sorry I couldn’t get to all your questions, but I hope to be back in the future for more. Just remember: believe in your strength, creativity and love. Your family will help you meet the challenges of raising a child with autism, so you can help your child be the best that he or she can be!
4:08
Autism Speaks: Thanks everyone for coming, and thanks Dr Ricki for another great chat. Sorry we didn’t get to everyone’s questions.
4:08
You can forward any questions to familyservices@autismspeaks.org, or call our autism response team 888 288 4762
4:10
If you’re interested in Dr Ricki’s book, Autism Solutions, check out her site here: http://www.drrickirobinson.com/
4:11
Thanks everyone!

Autism Speaks Co-Founder, Suzanne Wright to Host LIVE Facebook Chat

September 20, 2011 8 comments

Join us on September 21, 2011 at 1pm EDT for a LIVE Chat with Autism Speaks’ Co-Founder, Suzanne Wright! You can read a special letter written by Autism Speaks Co-founders Suzanne and Bob Wright, grandparents of a child with autism, here

Suzanne and Bob Wright are co-founders of Autism Speaks, the world’s largest autism science and advocacy organization. Inspired by the challenges facing their grandson, who suffers from autism, they launched the foundation in February 2005.

Suzanne has an extensive history of active involvement in community and philanthropic endeavors, mostly directed toward helping children. She is a Trustee Emeritus of Sarah Lawrence College, her alma mater. Suzanne has received numerous awards, the Women of Distinction Award from Palm Beach Atlantic University, the CHILD Magazine Children’s Champions Award, Luella Bennack Volunteer Award, Spirit of Achievement award by the Albert Einstein College of Medicine’s National Women’s Division and The Women of Vision Award from the Weizmann Institute of Science.

In 2008, Suzanne and Bob were named in Time 100’s Heroes and Pioneers category, for their commitment to global autism advocacy. They have also received the first ever Double Helix Award for Corporate Leadership from Cold Spring Harbor Laboratory, the NYU Child Advocacy Award, the Castle Connolly National Health Leadership Award and the American Ireland Fund Humanitarian Award. In the past couple of years the Wrights have received honorary doctorate degrees from St. John’s University, St. Joseph’s University and UMass Medical School – they delivered respective commencement addresses at the first two of these schools. The Wrights are the first married couple to be bestowed such an honor in St. John’s history.

The Wrights have three children and five grandchildren.

Click here to read A Grandparent’s Guide to Autism.

Hacking Autism LIVE Chat Transcript

September 7, 2011 2 comments

On September 6, the first Hacking Autism LIVE Chat was held, where members of the Advisory Board discussed ideas submitted by the community.

The Hackathon event will bring together Hacking Autism’s Advisory board, experts in Autism, technologist and people on the spectrum. This catalyst event takes the ideas submitted to the Hacking Autism website to a multidisciplinary group to actually create applications for people to use free of charge.

The next chat will take place on September 13, please be sure to join here!

7:02
Welcome to the first live chat for the HP Hackathon!
7:03
This chat is text only – you’ll interact with us via the live chat client that you are logged into at different times. We have a special group of our advisors also on the chat with us – and we’ll introduce them in a a few moments.
7:03
The Hacking Autism Hackathon has pulled together a volunteer group of software developers with leading autism specialists to work together to develop groundbreaking, touch-enabled applications for the autism community.
7:04
Tonight’s chat is all about improving a few of the best ideas and creating a conversation with you about this program. This is the first of our 2 scheduled chats.
7:04
In mid-October, we’ll be at HP offices for the live hackathon, taking the best ideas and matching them up with volunteer development teams to actually build the apps you’ve submitted!So far, we’ve had some 245 ideas submitted! Thank you!
7:05
Have you submitted an idea to hackingautism.org yet?
Yes!

 ( 35% )

No, still thinking of a good one!

 ( 65% )
7:07
How tonight is going to work…The first part of the chat will be fairly structured… we’ll show you 3 separate ideas, and for each idea ask you a few questions and then start to brainstorm on how to improve the idea. More on that in a moment…Meanwhile, I’d like to briefly let you know who you’ll be interacting with tonight from our advisory committee…Phil McKinney with HP
David Canora with Disney
Marc Sirkin with Autism Speaks (and the fast fingers, I’m doing the typing tonight)
Peter Bell with Autism Speaks
Shannon Kay with May Institute
Kate Grandbois with Spaulding Outpatient Center for Children
7:09
Ok, great… here’s how tonight’s chat will work:First, we will present an idea and ask via interactive poll if it is clear what the idea is…Then, we’ll ask for feedback and input on the idea (i.e. do you like it, or not) via another short pollFinally, we’ll brainstorm a little on some good features – just submit your ideas and questions when we prompt you and we’ll share responses with the group as we go…Ok… are you ready? Here’s the first idea…
7:10
Idea 1 Stress Thermometer
7:10
Comment From Quinton Hall

I have a 12 year old brother that has autism like symptoms. What type of applications are available for him. I have been a very important role model in his life thus far.

7:10
Hi Quinton! It is great what you are doing and your brother is lucky to have you. We can send you two place. Autism Speaks has recommended Apps herehttp://www.autismspeaks.org/family-services/resource-library/autism-apps
or you can visit the Hacking Autism App Gallery here -http://www.hackingautism.org/apps
7:11
There were several entries submitted for this concept including:An ap that brings calm for autistic children when they are at high stress level or burn out. Something visually calming- with sounds that calm perhaps starting at a louder volume and automatically slowing down and quieting as their stress level subsides.I’d love to see an app that‰Û_tells caregivers- who do not know about autistic behaviors- how to see the signs of upcoming stress and inturn meltdowns- that are happening to our kids- and how to avert them. IE: a child is clenching their fist…that means they are rageing inside and will be heading toward a meltdown. If we can avert them they will be less. It is called Rumble- Rage and Recovery. We never want the Rumbling to reach the Rage stage.I would love to see an app that allows someone with Autism who is nonverbal to communicate their level of stress and anxiety…a “stress thermometer” where they could mark with their finger their level of anxiety.Take a moment to read the submissions…
7:12
Do you understand the basic concept of “Stress Thermometer?
Yes

 ( 73% )

No, it’s unclear

 ( 27% )
7:13
Do you like this idea?
Yes love it

 ( 67% )

Unsure

 ( 33% )
7:15
Ok.. now it’s your turn… submit ideas to improve the idea, or ask questions!
7:16
“Guest” asked for some more details about this idea… basically, it’s a way for to help someone communicate an absract idea of stress.
7:17
Comment From Guest

The concept of a stress thermometer seems clear enough, I could use one of these myself, and maybe autistic folks could use one for other people. But what would it actually do?

7:19
A stress thermometer could be used as a replacement behavior for inappropriate behaviors (for example, replace aggression with using the “I’m angry” setting. The app could track the usage across times and situations.
7:19
Comment From Betty

Will this thermometer change colors as the person’s mood chsnges??

7:19
Comment From Joeliene

Would this be done through a series of icons almost like emoticons that the child could indicate an emotion or what they are feeling at the moment?

7:19
Joeliene – sure! Great idea.
7:20
Comment From Guest

I like the concept…. and having a way to demonstrate the stress level could be helpful.

7:21
Comment From Valerie K

We use colors, each identifying the stress level. Green=1/calm, blue=2/not so calm, Yellow=3/aggitated, Orange=4/frustrated, Red=5/MAD

7:21
Valerie – excellent!
7:21
Comment From Ronnie

Could it be personalized? perhaps with visuals that are used in their daily life or would they need to be training on this new visual?

7:21
Comment From Cindy

I like the idea!

7:22
Comment From Calebs Mom

agree with Joeliene I Can see that idea working

7:22
Ronnie – Peter Bell from Autism Speaks added that perhaps we could even license characters for the thermometer – Power Rangers, Pokemon etc… Very cool :)
7:23
Comment From julie hudy

Ronnie – cool idea :)

7:23
Ok everyone… let’s transition to the next idea… idea 2 Bullying “Lifealert”I’d love to see an app that‰Û_can protect our children from Bullying! This APP can be a direct message to the school of any incident any time. May be we can even efforce schools to pushish bullying just like they would do for any other asault. “Super B” will enable our kids to feel protected at all times and send a message with names and specific situations to the school and hopefully a copy to their parents. My dream would be fro every teacher to say on the first day of school….Please download “Super B” and use it any time! We will make sure your confidenciality remains protected and Bullyest be held responsable!!Thank you for your consideration!I’d like to see an app that provided children (particularly middle school children) with examples of how to address comments from bullies. I am currently working working towards my Masters degree in speech pathology and Florida State University and help run social skills groups at the Center for Autism and Related Disabilities (CARD) in Tallahassee- FL. In working with middle school-aged children- they have shared with me numerous times that the concepts they learn they can’t apply. They tell me that in middle school “if you’re not cool- no one will talk to you”. So many times- the concepts we teach them- they are not even able to practice because they already feel like they don’t fit in and do not communicate very often to similar age peers. When they do initiate conversation- however- they get made fun of or picked on. I think having an app that can demonstrate appropriate ways to respond to such interactions can be very beneficial and provide concrete examples. This may be done through a combination of a social story with text for additional support and details.
7:23
Take a moment to read…
7:25
Do you like the idea of a lifealert type service for bullying?
Yes

 ( 87% )

No, not really

 ( 13% )
7:26
Comment From Mark Anthony

I love the Super B idea. I worry all the time how my son will deal with Bullying in Junior High.

7:26
What questions or suggestions do you have for this concept?
7:26
Comment From sean

bullying is a reality and anything that can helpful like an application would be beneficial and maybe be intoduced to school

7:26
Comment From Rachel

I love the concept, but unclear how it would help / what it could do.

7:26
Comment From Betty

Yes I LOVE the Super B idea!!!

7:27
Rachel – a simple app with social stories and perhaps even a way to alert teachers/aides about how to respond to bullies
7:27
Comment From Steve-Aspie_Dad

Bullying “Lifealert” – We need more anti-bullying awareness and prevention. Anything to help protect our children would be appreciated greatly!

7:28
Comment From Lynelle Majors

good idea but how can we actually get our kids to use it…. my son would never do it.

7:29
Lynelle – not sure to be honest! That’s why we’re brainstorming about the concept. Some kids might not want to “tattle” but in some situations it could be useful.We’re also wondering if this app could also include “social” stories to help kids learn how to handle different situations.
7:30
Comment From Lindsay

Bullying I think might always be an issue for children with disabilities! A lifealert system would be a great idea!! Expecually since theres alot of autistic children who don’t talk or can’t express they’re feeling or whats going on outside the home

7:30
Comment From Suzi

I think the idea could be a great tool – especially if it offers both a way to alert others – i.e. track occcurances & gives social stories for possible responses.

7:30
Comment From Sherry

My son is in Kindergarten and is already being picked on by kids on the bus

7:31
Comment From Andrew

Thats an amazing idea. I have Aspergers, and I’m quite High Functioning, and the symptoms aren’t there anymore for me, but yes, I think this is a great idea for those who are low-functioning.

7:31
Sherry – that’s terrible. Please alert your school officials!
7:31
One of the things the app could also do is educate parents on how to address the issues, explain their rights and more.
7:31
Comment From Keith Ringled

Would this be an alert that is immediate. So that personel can respond when incident is happing?

7:32
Keith – ideally.. yes!
7:32
Comment From Nexus

i think it may be a good idea, however I see great means of abuse to come from it.

7:32
Another benefit could be tracking both for individuals as well as across a geographic area, school or district.
7:32
Comment From Kelli

would this app be affordable?

7:32
Comment From Darcy

I think that in some instances it could be great. Even if used only when telling is trully needed.

7:33
Comment From Nexus

now are we talking about online bullying or real life bullying

7:33
Nexus – potentially both actually.
7:33
Comment From Calynn

That would be great… I love the idea. My sister gets bullied and she has ASD so i think this is a very useful app

7:34
Comment From Guest

if it were immediate it would be hard to abuse…because officials can respond right away

7:34
Comment From Jerry Scott

Most Jr. High Schools that I’m aware of don’t let kids use phone during the school day – immediacy would be a problem. An app that walked a kid through a re”port of bullying “time, place, etc” might be very useful to get an accurate picture of what happened.

7:36
Jerry – great point although it is possible to get a device like an iphone or ipad written into an IEP accomodation.
7:37
Comment From Sonia

how would this app work for a kindergarten student?

7:38
Comment From donna

I would also like to see the app have features available to teachers, (especially general education teachers) to use to educate/inform their general ed students about how to accept others that are different (those with ASD). If we help to teach awareness and spread information it might cut down on bullying due to misunderstanding.

7:38
Sonia – good point – there is no universal solution to any of these apps!
7:38
By the way.. if you have app ideas…. please submit them at www.hackingautism.org
7:38
Ok… let’s go to idea #3… Storyboarding/Social stories
7:39
I came across a realy cool p[rogram through my6 sons speech therapist. Its for easy story boarding. YOu can use there pictures or your own- including photographs to make a quick story board or evets calender for your chyild. Might be cool to inlude one the kids could use themselves to show us what they want or need.An app that will enable me to write social stories on the fly on my son’s iphone.I’d love to see an app that‰Û_easily allows parents and therapists to create social stories based on a combination of “packaged” pictures and personal photos. It would provide a template for pages with a drag and drop interface to allow the user to develop the story and add appropriate text. It would then be viewable as a sort of slideshow or could be printed. My grandson LOVES his IPAD- so it would be nice if it ran on the IPAD as well as PC systems. A really great addition would be a library of animated icons or pictures to help make the story lively.
7:39
Comment From Leah

Definitely needs to be tailored to different ages.

7:40
Do you understand the basic concept of Storyboarding/Social story
yes

 ( 84% )

no

 ( 16% )
7:40
If you were wondering…. the ideas submitted were copied and pasted here – we didn’t change a thing!
7:40
Comment From Michael Needleman

You could build the app to age appropriateness. One interface for kindergarders, another for middle school, another for high school. Becoming more complex over time.

7:42
Comment From Leah

The storyboard app is an excellent idea. Parents go crazy taking photos and laminating and printing.

7:42
Comment From Suzi

Love this idea!

7:42
Comment From Jerry Scott

I love this idea – if my daughter could select a situation from the screen and then review the story board – it would really help her get through a lot more situations on her own.

7:43
Comment From Lynelle Majors

I think it would be great if the kids could input their own situations and stories….my son has a hard time telling the difference between that actually happened and what he wanted to happen

7:43
Have created your own storyboards?
Yes

 ( 54% )

No

 ( 46% )
7:43
Comment From Keith Ringled

I Struggle as a creative person. I sometime find it hard to put together a social story on short notice. This could be benificial. If the pictures and stories get to generic I know my son would lose interest.

7:44
Comment From donna

It would be good if there were a combo of pre generated pics as well as you can upload/use your own photos. this would make it most relevant

7:45
Comment From Ann

I like Donna’s idea of both generic photos and uploading your own.

7:45
Comment From Guest

The ability to search the internet for images would be great

7:46
Comment From Michael Needleman

Adding location awareness to the app so it would present pictures based on physical location might be a cool feature.

7:46
Comment From Jerry Scott

Maybe we are limiting ourselves in this concept a little – with the video cameras on the phones/pads, why have a story board when you can have a “Social story video”

7:46
Jerry.. yes!
7:47
A bank of good “pre-fab” examples would be great, and then you could replace/edit them with your own images/videos…
7:48
Comment From Jerry Scott

I picture taking a video of my older daughter brushing her teeth the “right way” then having it play while my daughter with autism brushes hers

7:48
Comment From Guest

Having the ability to share your story via email or social networking is also fantastic

7:48
Comment From donna

Great idea Jerry! I enjoy that a lot

7:49
Comment From Ronnie

Jerry that sounds great! But I do think social stories on boards have a place. I had a student who got too caught up in the “business” of a video (whether he was in it or not) and really needed the organization of a 1-2-3-etc picture story

7:49
Comment From Suzi

If video were used, my daughter would likely be upset if the reality didn’t match exactly.

7:49
Ronnie – perseveration is a real issue to consider. You are right.
7:49
Comment From Jerry Scott

I think the ability to share the user-generated content with many of these apps will be one of the most important features. As parents and caregivers, none of us has the time we would like to spend developing these types of things.

7:50
Jerry – amazing concept!
7:50
Sharing social stories with each other, and allowing people to customize them on their own devices, and share them back again. Terrific.
7:51
Ok, let’s transition to some open discussion and questions… submit any questions or comments you have now! We have about 10 minutes left…
7:52
Comment From Joeliene

What is the timeframe on development of an app – once the hackathon is complete?

7:53
We can send you two places! Autism Speaks has recommended Apps here http://www.autismspeaks.org/family-services/resource-library/autism-apps
or you can visit the Hacking Autism App Gallery here -http://www.hackingautism.org/apps
7:53
Joeliene – great question… it all depends on the complexity of the app
7:54
Also, developers are donating their time and efforts!
7:55
Comment From Jerry Scott

I am wondering if we could use computer science students to some of the development. Could we structure the app development in such a what that professors could offer chunks to their students to do as projects?

7:55
Jerry – we’re using professional developers to ensure we’re building quality apps
7:55
Comment From donna

how often are those resources updated with newly found or newly created apps?

7:55
Comment From Guest

price range on the apps?

7:56
Guest… all free!
7:56
Comment From Joeliene

And, then how will they be made available at large – for purchase, free, iTunes

7:56
All depends on what actually gets built!
7:57
Comment From Rachael

have you considered a panel of older ASD individuals to give ideas that would have helped them when they were younger?

7:57
Rachael – John Robison is part of our committee and yes, we’re always looking for suggestions and ideas.
7:58
Wow, that was terrific! We’re going to have to wrap the chat up now… THANK YOU for participating!Next week, we’ll hold another live chat – same place, and same time, 7pm EST with more ideas and more time for discussion.Meanwhile, if you are in the NY/NJ/CT area on Sept 17 and 18, we’ll be at Maker Faire… stop by if you are planning to attend and watch the Autism Speaks Facebook/Twitter/web site for information and volunteer opportunities.
7:58
Comment From Jerry Scott

H.A. – Thanks for your efforts, on behalf of all the parents here we really appreciate it!

7:58
Comment From Joeliene

will this live chat remain available for other to read if they could not participate?

7:59
Yes – there is a live transcript available for the chat.
7:59
Please provide additional ideas on www.hackingautism.org – we are still accepting new ideas!
7:59
Comment From Rachael

thank you so much for looking out for new ways to help our kids :)

7:59
That’s all for tonight – thanks everyone!


Hacking Autism LIVE Chat

August 25, 2011 5 comments

On Tuesday September 13, there will be a LIVE Chat with the community and the  members of the Hacking Autism Advisory Board to discuss YOUR ideas! We want to know what you think and to collaborate with you on refining and selecting the best ideas!

Using technology to give people with autism a voice.

 Partners
HP – Austim Speaks – Doug Flutie Jr. Foundation – Goodby, Silverstein & Partners

Overview

Autism, one of the fastest growing developmental disorders in the U.S., affects 1 in 110 children. Many of these people have difficulty communicating and expressing themselves. We believe technology can help. Technology is in no way a cure. In fact, we’re not out to cure autism. Our goal is to help people today, with the knowledge and skills we have.

WE NEED YOUR IDEAS!

Technology has always promised to make our lives better. Finally, it’s actually doing it. Touch technology is giving people with autism a way to communicate and express themselves like never before. It is giving people with autism a voice. Some, for the very first time.

By working together to create touch applications for people with autism, the HP Hackathon is unleashing software’s potential to adapt hardware and advance technology. It’s an invitation for the tech community to unite. It’s an open call for collaboration that will make a real difference in the lives of a growing community.

WHAT IS HACKATHON?

The Hackathon event will bring together Hacking Autism’s Advisory board, experts in Autism, technologist and people on the spectrum. This catalyst event takes the ideas submitted to the Hacking Autism website to a multidisciplinary group to actually create applications for people to use free of charge.

 

Advisory Board
Phil McKinney – HP
Chris Mertens – HP
David Canora – Disney
Jim St. Leger – Intel
Jennifer Leighton – Spaulding Outpatient Center for Children
Kate Grandbois – Spaulding Outpatient Center for Children
Peter Bell – Autism Speaks
Andy Shih – Autism Speaks
Simon Wallace – Autism Speaks
Shannon Kay – May Institute
John Robison – Autism Speaks

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