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Posts Tagged ‘Autism Response Team’

Family Services Office Hours – 11.10.11

November 10, 2011 1 comment

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.

2:54
Hey Everyone! We will be on in a few minutes!
2:58
Ok! We are here and happy to start taking questions!
3:00
Comment From Melissa

How much information is available on the possibility of autism being genetic? From parent child?
3:02
Hi Melissa! Alycia Halladay, Ph.D., hosted a LIVE chat dealing with genetics! Here is the transcript!http://blog.autismspeaks.org/2011/08/16/increased-risk-live-chat/
3:02
She was also interviewed on CNN about autism and siblings, which you can see here:http://blog.autismspeaks.org/2011/08/18/siblings-news-coverage/
3:03
In addition, our Chief Science Officer Geri Dawson did a LIVE Chat about the Genetics of Autism. She is great! Here is that transcript: http://blog.autismspeaks.org/2011/10/27/transcript-dawson-schere/
3:04
Our science team regularly posts blogs explaining new research findings about autism. Stay connected by checking up with us atblog.autismspeaks.org!
3:04
Comment From Shannon

Is PDD-NOS actually a form of autism?
3:04
Hi Shannon! The answer is yes! Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) is one of the autism spectrum disorders and is used to describe individuals who do not fully meet the criteria for autistic disorder or Asperger syndrome.
3:04
You can learn more about it here!http://www.autismspeaks.org/what-autism/pdd-nos
3:05
Comment From Kathy

Hi! I am the mom of a 10 yr old High functioning son and I am having trouble finding any help since he seems so “normal”. He gets no help in school and limited help through his dr’s. Is there help out there for High functioning Aspy’s?
3:05
Hi Kathy! We have a great Asperger Syndrome/High-Functioning Autism Tool Kit. It is mostly for newly diagnosed families but contains lots of tips and information for all families of children with AS/HFA. http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
3:05
We also have plenty of resources on our website related to helping people with Asperger Syndrome. Here are a few great links:
3:06
Our Resource Library contains tons of great books, magazines, online software, toys, game, apps and much more!www.autismspeaks.org/family-services/resource-library
3:06
Comment From Haley

Hi! I was just wondering where I could get information or if there was someone I could talk to about careers in autism? I am in college right now and I would like to talk to someone who could help me make sure I’m on the right path….
3:07
Hi Haley! That is so great you are interested in a career in autism. If you are looking to provide direct services, I suggest you search our very extensive online Resource Guide. You can click on your state and find service providers in your area in lots of different fields (schools, therapists, after school programs, recreation activities, etc.) Those providers will most likely have lots of information to help point you in the right direction!www.autismspeaks.org/resource-guide
3:08
Comment From Brenda

I have been reading a PDD and ADHD and how some ADHD medicines, actually help with the PDD. Is there any information you can share on this?
3:08
Many families of children with autism spectrum disorder (ASD) are faced with the option of using medicines to help treat their child’s challenging behaviors. This is a tough medical decision and there is no one right answer.
3:09
Comment From Shannon

I have read the forum in autism speaks and it is great. I just wanted to make sure that when I say my son has autism that I am not exaggerating. It sure feels like it!!
3:09
Shannon, we also have a great Learn the Signs campaign and an Autism Video Glossary that contains lots of videos that show symptoms of autism, compared to neurotypical children. They have been really helpful to so many people.
3:11
Comment From Jane

My son’s father and I are divorced and his father would like me to have him and his nt brother for extended time (for respite) however I don’t have the home which can accommodate his needs. He’s registered with DDD but they are unable to help. Are there any other resources for me to look into?
3:13
Hi Jane – that sounds like a very tough situation you are in. Your ex-husband needs to stick with the rules of the court. You can search our Resource Guide by your state to find a lawyer in your area as well as respite care options.http://www.autismspeaks.org/resource-guide
3:13
Hi Shelly. You are not alone! We hear from lots and lots of families who have grandparents who do not understand the diagnosis or are unwilling to accept it. Everyone responds to the diagnosis differently and many people need time.We would suggest gradually introducing your parents to the idea, and emphasizing how important it is to you that they understand and are able to help you. I’m sure they love their grandchildren so much so will understand that the way they are treating him isn’t working to his benefit.
3:13
Comment From Shelly

I have a three year old with PDD-NOS. I am having a hard time trying to educate my parents (his grandparents) on the subject. They are still in denial and I have even given them the tool kit for grandparents. They refuse to even look at it. They do not even want to make changes in the way they act arond my son (which makes him digress after every one of their visits.) What more can I do?
3:13
Hi Shelly. You are not alone! We hear from lots and lots of families who have grandparents who do not understand the diagnosis or are unwilling to accept it. Everyone responds to the diagnosis differently and many people need time. We would suggest gradually introducing your parents to the idea, and emphasizing how important it is to you that they understand and are able to help you. I’m sure they love their grandchildren so much so will understand that the way they are treating him isn’t working to his benefit.
3:14
Perhaps you want to speak to one of your parents who may be more willing to listen. It is important to stress that a family’s understanding and willingness to help their loved one with autism is crucial to the child’s progression and happiness.
3:15
Comment From elizabeth

I have a non verbal 2 1/2 year old that was just diagnosed with severe autism. where can i get PECS cards that are not going to banrupt me?
3:15
Hi Elizabeth! Have you tried our 100 Day Kit? It is a guide specifically created for families of children recently diagnosed with autism. You can read it here: www.autismspeaks.org/family-services/tool-kits/100-day-kit
3:16
I suggest you call our Autism Response Team at 888-AUTISM2. They can take your information and place your order. It is FREE!
3:17
I also suggest you search our Resource Library for tools like PECS cards. One of our categories is for visual tools that have been helpful to families in our community:http://www.autismspeaks.org/family-services/resource-library/visual-tools
3:18
Comment From Sarah

My “step son” (he is legally my son but not biologically) is Autistic. How likely is it my husband and I will have a child who is Autistic? I know that it affects about 1 in 110 children, 1 in 70 boys, but is it more likely since my husband already had one.
3:19
Hi Sarah! We have a few chat transcripts that you may find helpful. Here is the ‘Genetics of Autism: What It Means for You’ hosted by Geri Dawson, PhD, and Steve Scherer, PhDhttp://blog.autismspeaks.org/2011/10/27/transcript-dawson-schere/
3:20
Recently the High Risk Baby Siblings Research Consortium made the news with the findings that autism recurs in families much more frequently than had been realized. Here is more information! http://blog.autismspeaks.org/2011/08/30/the-babysibs-consortium-important-findings-ahead/
3:20
Comment From Maria

Do you know what therapies can help with behavior problems?
3:20
Hi Maria. We have a list of treatment options on our website in the What is Autism page. These are all treatments with documented science research behind them. In the left column of the page you will see a long list. You can click each of them to learn more about what that treatment involves.http://www.autismspeaks.org/what-autism/treatment. Our Resource Guide lists lots of therapists who specialize in these treatments www.autismspeaks.org/resource-guide. It is important to remember that because every individual with autism is different, not everyone responds well to the same treatments. Be sure to research before you decide what you feel is best for your child. There are lots of helpful tools out there!
3:20
Comment From Sarah

Elizabeth, with our son we found a lot of websites that had picture and stuff. We put them around the house and our son picked up on some of the things and now even says some of those words.
3:21
Thanks so much for adding your insights! We love seeing the community help each other out!
3:21
Comment From Rebecca

My son is 3 and is somewhat verbal. He will ask for things at home but at school he doesn’t ask for things unless he sees the object/thing he wants. It is because of this and his lack of spontaneous language(at school) that they are suggesting we use PECS. We had stated at his IEP that we didn’t want him using this. Our concern is that he would become dependent on this. What is your opinion of PECS? Is it beneficial?
3:22
Hi Rebecca! It is important that your IEP team listens to your needs and what you feel is best for your son. We have recently released an IEP Guide that will help you ensure your son’s needs are being met. You know what is best for him, so it is important that you make sure the school and the IEP team are hearing you loud and clear!
3:23
Here is a book about PECS that was submitted to our Resource Library by a family who found it helpful:http://woodbinehouse.com/main.asp_Q_product_id_E_978-1-60613-015-5_A_.asp
3:24
Comment From elizabeth

thanks! I did order the booklet yesterday. thanks for the links and also your input, Sarah
3:24
Comment From Sarah

Rebecca, I am not an expert by any means but I do have an autistic son as well. Stick with your gut feelings. Make sure the IEP is following what you want! The schools sometimes try to do what THEY want and what’s easiest for them and they can’t! If you end up wanting to use the PECS later, you can then add it to his IEP. You know your child best!
3:29
Comment From Rebecca

Our wishes and concerns have not been heard . At the first IEP the school district told us that all they wee willing to ouffer our son was a place in their Autism preschool program. Eventhough the “school” where he had been presented a report saying that their team thought that it would be in his best interest to continue with his home therapy program. Where can we find Educational Advocates in our area that would help us free of charge. We are in Modesto, California.
3:29
Hi Rebecca. It is important to make sure your concerns are being heard. You are entitled to have your voice heard in all matters related to the IEP. Our Resource Guide contains a list of advocates from across the country. You can search the resource guide at www.autismspeaks.org/resource-guide
3:30
We don’t list them by fee but hopefully they will be able to help you. In addition, you might also want tos earch our Local Autism Organizations category. Those organizations may be better able to point you in the right direction in terms of an educational advocate.
3:31
Comment From Sarah

google advocates in your area. I know here in GA there are not any in our city, but nearby towns.
3:31
Comment From Rebecca

Thank you Sarah
3:38
Comment From Guest

My son’s teacher communicates via email with us (parents). That’s fine, however, the emails are sent to the stepmother at her work’s email address rather than to my son’s father. I’m concerned for my son’s privacy. The school’s position is that they send emails to whatever address is provided. Are there any laws which can protect information regarding my son in this particular situation? SPAN was unable to find any
3:39
Hi Guest, have you tried changing the contact email that your school has listed?
3:40
That seems strange that the only one they send to is your son’s stepmother’s work email. You should make sure to have your email listed on there too, as all parents need to be involved in these decisions.
3:47
Comment From Guest

I don’t know how to explain to kids at the park that my son has autism and i live in NYC do you have any suggestions.
3:48
Hi Guest. Disclosing your child’s autism diagnosis to other people can be tough sometimes. We have a great list of stories on our website for peers that help them to understand more about their friends or playmates who have autism.http://www.autismspeaks.org/family-services/resource-library/books#peers
3:49
Perhaps you could show them these fun picture books, or get ideas from the books on how to best share the diagnosis. All of these books have been submitted by families who have found them to be extremely helpful with peers.
3:52
Comment From Sarah

I have also had troubles explaing to other children why my son isnt “normal”. They don’t understand why he doesn’t want to play with them or why he doesn’t talk back. I always say “God made Cody different (like he does everyone) and Cody just doesn’t always like to play or talk to others. It doesn’t mean he doesnt like or love you, it just means he likes to have his own space. He sometimes prefers to play alone instead….
3:53
Thank you Sarah for your helpful responses. We love seeing families in our community helping each other out. Sometimes listening to people who have had similar experiences as your own is extremely helpful and comforting.
3:54
Our Facebook page is a great way to get conversations started with other families in our community.www.facebook.com/autismspeaks
3:56
Comment From Sarah

You’re welcome. Hopeful I can help other parents. I have had wonderful friends with simiar experiences that have helped me!
3:57
Well we’d like to thank everyone for stopping by today! Remember we are here every Wednesday at 3pm EDT and you can reach us at 888-AUTISM 2 (288-4762) or email us atfamilyservices@autismspeaks.org.
Categories: Family Services Tags: , , , , ,

Family Services Office Hours – 11.03.11

November 3, 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.

Welcome to Office Hours! Thank you for joining us today. The Family Services team is here ready to answer your questions!
2:58
Comment From Francene

My son was recently diagnosed with Aspergers. How can I get him help and help our family cope, too? I feel like I have no one to talk to.
2:59
Hi Francene! Have you checked out our Asperger Syndrome/High-Functioning Autism Tool Kit? It is a free kit designed to help families understand more and cope after the diagnosis. It will help walk you through the steps following the diagnosis. http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
3:00
You can order a personalized copy for free by calling our Autism Response Team at 888-AUTISM2.
3:00
We have tons of other helpful resources on the Family Services page of our website! www.autismspeaks.org/family-services
3:03
Comment From bernice

High functioning 8 yr old son os being physically abudive towards me and no one else…i am the one with him the most. Any advise or resources. Thanks
3:03
HI Bernice I am sorry to hear about your situation with your son. I would suggest you have him evaluated by a professional who understand Aspergers Syndrome. The ATN has developed a resource called the Medication decision Aid Tool Kit that may be helpful.
http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/tools-you-can-use
3:03
Comment From Lisa Gallegos

I was wondering if you have any homeless supportive services? We are being forced out of our home and have 18 days to come up with deposit money for the new place, but we have no where else to turn if we don’t get that money.
3:04
Hi Lisa. I’m sorry to hear about your situation. We have an Autism Cares grant program that helps families experiencing crises such as yours: http://www.autismcares.org/
3:04
We also have a page on our website for Families in Need:http://www.autismspeaks.org/family-services/resource-library/families-need
3:05
AutismCares Provides Grants for Individuals with Autism Spectrum Disorders During Times of Crisis or Unplanned Hardships. It is for families who have experienced a catastrophic life event in the past 90 days such as loss of a home, a job, death in the family, natural disaster, etc.
3:06
Hi Melissa, thanks for your question. Its very important that you work with your Pediatrician or other medical professional; a Developmental Predication or a Neurologist, so they can be informed and active members of your team.
3:06
Comment From Melissa

My daughter will be 3 in December and recieved an educational diagnosis of Autism in July. How important is a medical diagnosis at this time? She has increased behaviors when in strange situations so unless it would be extremely beneficial I would like to avoid situations that cause her extreme stress.
3:06
hi Melissa- sorry I answered your question before I published it.
3:08
Melissa- there is a great book I would recommend by Dr Ricki Robinson called Autism Solutions: How to create a healthy and meaningful Life for your child with
3:09
Comment From jennifer

I have two sons that have both just been diagnosised with ASD. Where can i find a book or something to give to the grandparents to help them understand what this is?
3:09
Hi Jennifer! We recently released a Grandparent Support Tool Kit called A Grandparent’s Guide to Autism.http://www.autismspeaks.org/sites/default/files/a_grandparents_guide_to_autism2.pdf. We also recently did a Community Connections piece celebrating Grandparents.http://www.autismspeaks.org/family-services/community-connections/celebrating-grandparents.
3:10
We come out with a Community Connections newsletter once a month that covers important topics for families. Sign up here!http://events.autismspeaks.org/site/c.jqLTI1OxGlF/b.5766483/k.3E56/Community_Connections_Sign_Up/apps/ka/ct/contactus.asp?c=jqLTI1OxGlF&b=5766483&en=deJCIJNpEcLEKKNuE9KAKPMzGhIIJPNmG6KMK2PEJsE
3:12
Comment From jennifer

My ot was talking to me about insurance for kids with ASD. do you know anything about this?
3:13
Hi Jennifer. Advocacy for insurance coverage for autism services is a huge part of the Autism Speaks mission. 29 states have mandated autism insurance coverage in recent years. Visit our advocacy page www.autismvotes.org for information about insurance in your state.
3:13
We also plan to release an Advocacy Tool Kit in the next month or so, so keep your eyes out for that!
3:13
Comment From Eva

any advice for a three year old who will not go to sleep at a good hour at night?
3:14
HI Eva
http://www.autismspeaks.org/family-services/health-and-wellness/sleep
Family services just recently published information on Autism and Sleep Disorders.
3:15
In addition, the Autism Treatment Network has published information on Sleep disorders and Autism.The link to their page is below.
http://www.autismspeaks.org/science/resources-programs/autism-treatment-network
3:23
Comment From Guest

What do you do when you have 2 kids dx with ASD and live in a state covered under the mandate but our insurance has a $15000 deductible with $80 copays and ineligible for medicaid and cms bc of income. EI is scaping bottom of barrell to give services… what other options are there bc we are underinsured to get supplemental services for my babies?
3:23
Hi Guest – I suggest you check our our Familes In Need page in our Resource Library http://www.autismspeaks.org/family-services/resource-library/families-need
3:25
Early Intervention services “should ” be based on the child’s needs for services.
I would recommend getting assessments to help define your children’s needs.
3:25
You may also want to visit our Resource Guide and look up state information, or contact other Local Autism Organizations who may be better able to point you in the right direction in your state.www.autismspeaks.org/resource-guide
3:26
There is a state information category for EI age, Preschool Age, School age and Adults.
3:32
Comment From Guest

Florida has the most pathetic early intervention program and its reprehensible that they can even call themselves early intervention. I have had to pay out of pocket for independent evals and still receive minimal services (1hr per wk of a primary service provider) and 1hr every 6mon of face to face with secondary “consulting” provider. Its a joke.
3:34
hello- I’ve heard stories about many states who offer the minimum interventions. Have you tried working with an advocate. I realize they can be expensive, but sometimes it can make a huge difference in accessing more services.
3:34
You can find advocates in our Resource Guide atwww.autismspeaks.org/resource-guide.
3:35
I would also recommend a wonderful book called, The Everyday Advocate by Areva Martin.
3:36
You may also want to read our Community Connections on Advocacy at http://www.autismspeaks.org/family-services/community-connections/advocacy-can-make-all-difference
3:36
A law firm put together a great guide to legal information for families of children with autism, which you can see at that site as well.
3:38
Comment From Guest

I have contacted the state office in tallahasse all ready. My kids passed their BDI-2 assessment with flying colors and they refused to give diff eval. They are only giving services bc of their dx
3:38
Sounds like you are doing a great job of advocating! Keep up the good work.
3:40
I would also encourage you to sign -up for autismvotes eNewsletter. Our government relations team works with state and federal officials on increasing services for individuals with autism.
http://www.autismvotes.org/site/c.frKNI3PCImE/b.3909853/k.BE44/Home.htm
3:45
Our next Community Connections will be published on November17th, focusing on Safety and Autism, we will launch updates to the Autism Safety project WebPages and offer a new Safety in the Home Workbook and Video, this very practical resource was developed for families by Ohio State University faculty and funded by a Family Serves Community Grants.
http://events.autismspeaks.org/site/c.jqLTI1OxGlF/b.5766483/k.3E56/Community_Connections_Sign_Up/apps/ka/ct/contactus.asp?c=jqLTI1OxGlF&b=5766483&en=lgIJKONAJbLEKUNBI9IHLZMILjIMLVOuH8JQI8PMLuEWe will continue the theme of safety in our topic of the week discussions giving families the opportunity to share their successes stories with the community.
http://blog.autismspeaks.org/2011/11/01/totw-traffic-safety/In addition, we have 2 LIVE chats scheduled this month, one with expert Dennis Debault on How to Prepare for an Autism Emergency and the other with George Braddock who will chat about his work on Home Safety. We will promote both these live chats on Facebook, as we get closer to scheduled dates
3:48
Family Services completed the launch of the Family Support Tool Kits – targeted for the parents, siblings, grandparents, and friends of the child with autism.
www.autismspeaks.org/family-services/family-support-tool-kits
3:54
Comment From Guest

Joined on autismvotes on fb a couple mos ago. Will check out newsletter as well
3:54
Thank you all for joining us today! As always, feel free to call our Autism Response Team at 888-AUTISM2 or email us atfamilyservices@autismspeaks.org with any other questions you may have.
3:54
See you back here next week!!
Categories: Family Services Tags: , , , ,

Family Services Office Hours – 10.26.11

October 27, 2011 5 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.

2:52
Hello: We are about to begin Family Services “Office Hours”, you can ask Family Services staff questions about resources or other questions about autism.
2:55
Comment From charleen

what types of resources for low income families are in the phoenix area?
2:56
Hi Charleen! Thank you for joining us today! We have a long list of resources in the Autism Speaks online Resource Guide. You can search for all different kinds of services in the Phoenix area.www.autismspeaks.org/resource-guide
2:56
You may want to contact local autism organizations, a category in our guide and see what they are aware of.
2:56
You also may want to check in with your Department of Developmental Disabilities to see if your family is eligible for Medicaid waivers.
2:57
Here is a link to the Division of Developmental Disabilities site in Arizona: https://www.azdes.gov/main.aspx?menu=96&id=2454
2:57
Comment From Maria Perez

Hello my son is 7 years old he was diagnosed with autism at 2 1/2 years old he does not speak but just some words but he does repeat alot of movies or cartoons he likes how can I get him to start talking more o saying what he needs o wants is there any programs o softwares that can teach him how to talk more and also how can I get him to stop repeating so much of what he sees thank you so much
3:00
Hi Maria thanks for joining us today. I would recommend that you get a Speech and Language evaluation through your son’s school district or a private evaluations.In order to know what your son’s speech and language needs are, its important to have data and information about his needs.
3:00
Comment From charleen

thank you, i’ve being trying to find something for my son, i’ve even asked his behavioral health palce, but they aren’t much help
3:00
Comment From charleen

thank you for all your help
3:00
Comment From Lisa

I just moved to Texas and I need to find a doctor for my daughter
3:01
Hi Lisa! I suggest you look through our online Resource Guide for doctors and all sorts of other professionals in your area in Texas.www.autismspeaks.org/resource-guide
3:01
Simply click on your state, and select one of our over 70 categories to search. You will be able to enter your zip code. We usually recommend people put it in a wide search radius so you really get to see what is out there.
3:02
Comment From Guest

Hi, my daughter is 7 years old and we are having a hard time bringing the therpy home.. She will eat different foods in food therpy but will not even look at the food at home.
3:02
Hi- Its important that the professional working with your daughter help you to generalize the interventions at home. It would be a good idea to ask the professional to do a home visit… if possible.
3:04
If a home visit isn’t possible, ask for a home intervention plan. These are some ideas to give you a start.
3:04
Comment From Nicki

My son is 4 will be 5 November 4th..I have a few questions actually My son has never been properly diagnosed as Autistic, but he has shown so many signs they said he tested at the “mentally retardation levels” When they said this I became very peeved! I told them what he does and they said I have no idea what I am talking about…My son repeats everything and anything,Don’t know his colors can’t count other than up to 5 and also hardly ever sleeps.They told me to give him Tylenol PM I have and I have also tried melatonin. Nothing is working I can’t get him to sleep at all….What is there I can do? I live in Kansas City Missouri? Some1 please help me he hasn’t slept since he was 2 yrs old other than here and there and he keeps humping everything!
3:05
Hi Nicki. I would recommend that you start with your pediatrician. He/she should be able to make a referral to a developmental pediatrician or a neurologist who can properly evaluate your son.
3:05
The earlier the diagnosis of autism, the better the outcome will be, so it is important that you find someone who will listen to your concerns and help you work through the difficult issues you are having.
3:06
You should also try searching our online Resource Guide for professionals in your area: www.autismspeaks.org/resource-guide
3:06
We have a page of tips and resources related to sleep that may help you as well: http://www.autismspeaks.org/family-services/health-and-wellness/sleep
3:07
Comment From Maria Perez

He is receiving speech therapy at school and also social skills on the weekend is there any computer softwares o pograms that can help me get him to start talking a little more
3:07
Maria, we have lots of great tools in our online Resource Library! One of them is called Online Learning Tools.http://www.autismspeaks.org/family-services/resource-library
3:08
We have TONS of great resources on that page including hundreds of books, some games, sensory products, online learning tools, websites for families, and much much more!
3:10
Comment From Natalie

My 9 y/o was just diagnosed with aspergers 2 weeks ago. What is the best thing to do for him being DX so late? I don’t even know where to begin.
3:10
Hi Natalie- we’ve created the Aspergers Syndrome/ High Functioning Autism Tool Kit. You can download the kit or call 888-288-4762 and order a kit to be delieverd to your home.
http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
3:13
Comment From Debbie

Hi… I’m Debbie and my son was diagnosed last Dec. Right now, we are looking for local groups so that he can have the opportunity to socialize and make friends. I’ve been trying to advocate for some kind of networking/supportive group for the parents at our school. My question is do I need to advocate somewhere else in the government in our city or can it be successfully done at the local school level?
3:13
Hi Debbie. We have lots of social skills programs, after school programs and recreational activities in our Resource Guidewww.autismspeaks.org/resource-guide
3:14
That is great you are advocating in your school for a support group. Support gruops can be so helpful to families of children with autism. I suggest you speak with other parents in the school who have children with autism or another developmental disability to get started. You will also likely meet lots of parents through these other programs who I’m sure would love to join a group of parents.
3:16
Comment From Guest

It is difficult to discipline my child. He crys incontrollably when I call him out on his bad behavior. Any suggestions?
3:16
Hi- Its important to understand the behavior, when it happens, how often and under what circumstances. Does the behavior occur at school?  I would recommend a Behavioral Assessment completed by a professional who understand autism. Your child’s teacher may be able to recommend soemone. You can also check our Resource Guide.
http://www.autismspeaks.org/resource-guide
3:17
Comment From Jenn

Hello, I happen to be an adult with asperger syndrome. I have an asociate degree & i’d want to work with preschool age kids on the autism spectrum.
3:18
Hi Jenn! That is great to hear you are interested in working with preschool age kids. We do not provide direct services here, however there are lots of preschools and recreation programs, social skills groups, etc. in our Resource Guide.www.autismspeaks.org/resource-guide
3:18
I suggest you reach out to those providers, and also to local autism organizations to find out what is out there. Best of luck to you!
3:18
Comment From Danielle

Hi =) I have a 3 year old little girl with aspergers. She tends to melt down every time you ask her to do anything and sometimes its just when you in speak to her in general – It can even be over something she really likes and it can be positive and she still melts down! Is this typical behavior???
3:20
HI Danielle -Autism Speaks has created an Aspergers Syndrome/ High Functioning Tool Kit. You can order a copy at 888-288-4762.
http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
3:22
it’s important to work with your daughter’s team to better understand this behavior. A behavioral assessment will give you a much better understanding of the function of the behavior.
3:22
Comment From Liz

I have not been able to go back to work the past year because I have been home with my 2 soon to be 3 year old who has been undergoing therapy for speach delays, developmental delay and sensory issues for the past 12 months. We did not get a diagnosis of Autism until about a month ago…my staying home has taken a huge tole on our family. Dad has had to work full time jobs to keep us afloat. Are their any resources or assistance programs for families like ours?
3:22
Hi Liz. We have a list of resources in our Resource Library for Families In Need which you can see at this link:http://www.autismspeaks.org/family-services/resource-library/families-need … I also suggest you contact local autism organizations which you can find in our Resource Guide who may know of more opportunities at a local level:www.autismspeaks.org/resource-guide.
3:23
Comment From Maria

Hi I have a question should we send our autistic son to preschool? He is high-function knows how to read, write, numbers from 1-100 and additions . I Don’t want him to go to preschool he is already on ABA program and I believe he is going to learn more with them than preschool. We had his IEP meeting and I feel pressure from the school staff.
3:26
Hi Maria – Its important to work with the IEP team on what’s best for your son. You should feel confortable expressing your concerns and also hearing why the team is recomedning pre-school. Pre-school is an opportunity for socializing that a child doesn’t get at home.
3:27
Comment From Jackie Gonzalez

First of all thank you so very much for being a reliable resource for families..
3:27
Comment From Gloria

Does anyone know of any sports organizations in the Dallas area for special needs kids? My son has Autism but loves sports even though he really can’t follow the rules he would love to play with kids his age, any suggestions?
3:27
Hi Gloria – I suggest you check out our Online Resource Guide which has lots of recreation opportunities and after school programs www.autismspeaks.org/resource-guide. We also have a Community Connections page on Recreation that has lots of resources as well http://www.autismspeaks.org/family-services/community-connections/have-some-fun-today-recreation-community-activities-clubs-and-
3:28
We also have a special page in the Health and Wellness section of our website called Fitness that provides lots of information and resources for sports for kids with autism:http://www.autismspeaks.org/family-services/health-and-wellness/fitness
3:28
Comment From Courtney

My son’s pediatrician tested him in office and told us he has high functioning autism. It all makes so much sense now, but we can’t have him seen by a psychologist until March of next year and I feel like I’m lost. My son is 8 and his violent outbursts are getting worse, what should I do until he is able to see someone?
3:30
hi Courtney, I would recommend you start by talking with your son’s teacher. He may need support during the school day, and they may want to complete assessmnets to identify his strengths and areas of needs.
3:31
Comment From Janna

I live in Colorado my work falls under a church plan for insurance which excludes them from ABA services through HIMAT I have been to the head of HR and Bren declined this year or next that try will be adding it as a benefit, how can I get help with ABA without insurance coverage?
3:32
Hi Janna. I’m sorry to hear you are having trouble with insurance coverage for therapy services. This is a major problem in the US. There are now 28 states who have mandated insurance coverage for services for kids and adults with autism. That is a huge goal of our advocacy efforts at Autism Speaks. You can check in on your state at www.autismvotes.org
3:32
You can also email our advocacy/government relations department for more specific help atgovrelations@autismspeaks.org.
3:33
Comment From Jackie Gonzalez

My question is…..any advice for a 4 year old who refuses to share? So much so that he becomes aggressive? Towards himself, his 2 year old brother, classmates and teachers?
3:35
hi Jackie- Its important to know under what circumstances the behavior occurs. Getting an understanding of the behavior is so important, and you may want to consider a behavioral assessment by a professional who is qualified and has worked with other kids with autism.
3:36
Your child’s IEP team can help to identify a Behavioral Analyst, a person who is trained to assess behavior and put a plan in place to change a behavior.
3:37
Comment From MariaH

Should I tell them that I want my son to go to a special Ed preschool ?
3:39
Hi Maria-I would suggest that you and a IEP team member visit a few pre-schools and make a decision based on what you observe and your child’s educational, and social needs.
3:41
Comment From Guest

My daughter is 22 months old. She is currently being evaluated for Autism by TEACCH in NC. She receives speech therapy and OT from the CDSA. The argument with giving her a diagnosis is that one she makes eye contact and two gesturing, she shakes her head yes and no but not always appropriate. She definitely has some sensory issues. She only has about 5 words. I also think she is doing some stimming, spinning, smacking herself in the head and repeating a sound over and over. Melt downs are huge for us in stores and resturants.
3:41
Hi Guest. That is great to hear that you are already working with therapists and professionals on your 22 month old daughters development. Early intervention is an extremely critical component of improvement and it sounds like you are right on track.
3:42
Every child with autism is very different, but the symptoms you are describing are often common in kids on the spectrum. I suggest you check out our Learn the Signs section of our website or view our Autism VIdeo Glossary which shows videos of kids with and without autism. You can check those out at the 2 links below:
3:42
Comment From Guest

Do you know of any organisatons that assist parents who are not able to afford the cost, in getting an ipad for non-verbal children with autism?
3:43
Hi Guest. The Autism Society recently put together a list of organizations that may help in funding iPads for children with autism. You can see the list at: http://www.autism-society.org/news/funding-for-ipads.html
3:44
We have also heard a lot about iTaalk http://itaalk.org/
3:45
Comment From Brandon

I have aspergers autism, I’m high functioning, is there any support groups in Portland, or. ?
3:45
Hi Brandon! Thank you for joining us today. I suggest you search our onlien Resource Guide for Support Groups in your area:www.autismspeaks.org/resource-guide
3:46
We have also heard about an online web support community called WrongPlanet.net http://www.wrongplanet.net/
3:47
We have 2 categories of websites on our Resource Library that may help you: Adults with Autism, and Asperger Syndromehttp://www.autismspeaks.org/family-services/resource-library/asperger-syndrome
3:47
Comment From Guest

Thank you.
3:47
Comment From Brandon

Thank you
3:47
We are happy to help. Thank you all for joining us today!
3:48
if you have additional questions you can 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 at familyservices@autismspeaks.org.
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: , , , , , , ,

Family Services Office Hours – 10.05.11

October 7, 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.

2:32
Hey Everyone! We will be on in 25 minutes! Hang on!
2:57
Just getting ready to go!
3:02
Welcome to Office Hours! Family Services is taking questions and we are here to help offer resources and guidance!
3:03
Comment From Jennifer

My son is 4 and has PDD-NOS. His teacher says she does not see any reason why he can’t be in a regular Kindergarden next year. Is it possibe that his current diagnosis can improve…and then regress as he gets older?
3:04
Hi Jennifer! Children with autism progress at different times. Make sure that he has an IEP in place and be sure to measure his goals and objectives to make sure that he is infect making progress!
3:05
*in fact
3:06
Comment From Guest

My 18 mo old son has just been diagnosed. I’m having a hard time finding treatment options. The state (WI) funding has a 2 yr waiting list and our pivate insurance is self funded so they don’t have to do much. He is in speech therapy 3 x a week and occupational 1 month. What else can I do? He was rated as moderate on the scale.
3:08
Hi Guest! That is great that he is already in those therapies! Early intervention is key! Early Intervention is Federally mandated. Please check out our Resource Guide for your state to find a facility near you. Here is a link!http://www.autismspeaks.org/resource-guide
3:08
Also, here is our 100 Day Kit for further assistance!http://www.autismspeaks.org/family-services/tool-kits/100-day-kit
3:09
Comment From Dawn

Have you heard of Irene law and how it effects grade advancement from third grade forward?
3:10
hi Dawn, I haven’t heard of Irene law. Can you tell me about it?
3:11
Comment From Kristen

I posted earlier Gabe is my 18 month old. With the research I have been doing I have read that there is a higher insidence in siblings. I have a 4 year old, no concerns there, but we also have a 2 month old. How early can you really look for signs of autism?
3:12
Hi Kristen! Clinicians are diagnosing autism earlier in earlier. It is always helpful to learn the signs. Here is a linkhttp://www.autismspeaks.org/what-autism/learn-signs
3:12
Our Video Glossary should also be helpfulhttp://www.autismspeaks.org/what-autism/video-glossary
3:12
Be sure to work with your clinician to follow the progress of your children and to discuss any further concerns
3:15
Comment From melina

I am in England and my 4 year old son has all signs of classic autism, but i cant get a pediatrician to give a diagnosis. any suggestions?
3:16
Hi Melina. You may want to ask your child’s doctor for a referral to a developmental pediatrician or a neurologist. It is very important that you get the diagnosis sooner rather than later. You are doing the right thing by seeking further clarification about your son’s status!
3:17
Comment From Jessica

My son is 4 years old and was diagnosed with autism at the age of 2. He has a HUGE problem with eating his poop and playing in it! I am desperatly asking anyone to help me help him! Thank you
3:18
Hi Jessica. I’m sorry to hear that you are having this difficulty. This is important information for your son’s treatment team to know. You can start by talking to your pediatrician or your son’s IEP team. You should not feel alone with this problem, there are plenty of other parents who have experienced this! Talking to professionals is a key first step to understanding what is causing this to happen.
3:20
Comment From melina

i tried that and the gp who only met my son once for 5 minuets said he couldn’t be autistic because he sat on a chair
3:20
Hi Melina. It is very important that you find a gp or pediatrician who will listen to your concerns and help meet your needs. Do not give up, you are doing the right thing!
3:21
Hi Janine, it important to work closely with your daughter’s clinician and get the support you need to in order to access services.
3:23
Hi Guest and Adrienna! We have a very extensive resource guide that you can use to help find therapists in your area. Simply go towww.autismspeaks.org/resource-guide, click on your state and search among our many categories. Enter your zip code and expand the radius so you can find all possible options in your state.
3:23
Comment From Adrienna

My 3 yr old has been diagnosed with autism and I was wondering if you knew of any sites where I could find behavioral specialists or obtain behavioral intervention in the state of KY?
3:23
Comment From Guest

My son will be 4 next month and is currently recieving Speech and OT therapies but they are now recommending ABA therapy which I am told is very costly, are there any resources in opr around Charlotte,NC that I may check out for this or something else that may assist him?
3:23
Hi Guest and Adrienna! We have a very extensive resource guide that you can use to help find therapists in your area. Simply go towww.autismspeaks.org/resource-guide, click on your state and search among our many categories. Enter your zip code and expand the radius so you can find all possible options in your state.
3:24
You can also find local autism organizations in the resource guide in your state that may have more information for you.
3:25
Comment From Linda

school issues…. getting a one on one aid when starting to help the transition. school wants him in school for a couple weeks before an iep can be set up to see if he needs one. we are afraid to start him without one, afraid of maybe making it very hard as he has not had to do any real transitioning and we feel if he has help for a little while that he may not have to continue to have an aid for a long period. he is high functioning and just needs someone to help him get a start. he is 7 and already a yr behind because of our issues with school.
3:26
Hi Linda! You have the right to call an IEP meeting at any point. You have to be sure to advocate for yourself and child. We have several resources that may be helpful to you. First off, our IEP Guidehttp://www.autismspeaks.org/sites/default/files/gp_iep_guide.pdf
3:27
We also have the School Community Toolkit to assist members of the school community in understanding and supporting students with autism. Here is a linkhttp://www.autismspeaks.org/family-services/tool-kits/school-community-tool-kit
3:28
Comment From donna

my 3 year old son is in the process of being diagnosed and i am having trouble getting his therapy back since he turned 3. he was reciving early intervention and speech therapy but they told me they had to stop because of his age.
3:28
You can also search our Resource Guide for Advocacy in your area http://www.autismspeaks.org/resource-guide
3:28
hi Donna, I am curious. Were there transitional services put in place?
3:30
You early Intervention treatment team should be able to help you make a transition to school based services.
3:32
Donna, you may also want to look up state information in our Resource Guide. Click the categories “State Information – Early Intervention” and “State Information – Preschool” to learn more.http://www.autismspeaks.org/community/fsdb/search.php
3:32
You should also check out our “Your Child’s Rights page”http://www.autismspeaks.org/what-autism/your-childs-rights
3:32
Comment From Courtney

Is there anything comparable to ABA therapy? What can I do to assist him in behavior modifications?
3:32
Hi Courtney! We have a list of various treatment options on our website on the What is Autism page.http://www.autismspeaks.org/what-autism/treatment You can see a list on the left side of the page and read more about each.
3:33
Comment From Andrea

Donna my daughter was two when she was diagnosed and there was a lapse in service when she turned 3 because its defferent providers, but as long as he’s been evaluated by the school district then you’re on the right path.
3:34
Comment From Jessica

anyone know of good neorological doctors in the Indiana area?
3:35
Hi Jessica. Check out our Resource Guide and you can search for lots of resources in Indiana! www.autismspeaks.org/resource-guide
3:35
Comment From Nichelle

My autistic son is 5 and will be 6 next week he is in kindergarten and he has a problem with transitions. He really loved his teachers and friends from pre-k but is really having a hard time in kindergarten so far. His teachers send me notes basically everyday about his not paying attention or disturbing the class or throwing a mouse across the class because he didn’t want to get off the computer. Lately he has been saying shut up at home and school and when he does not get his way he says stupid mom, dad or the teacher. I don’t know what to do. Please help.
3:36
Hi Nichelle! You are right to have these concerns. You are doing the right thing to address these problems early. You should call an IEP meeting with your entire team to address these behaviors. You should not feel alone in addressing problems that he is having at school or at home.
3:37
Check out our IEP guide to learn more about how to work effectively with your IEP team.http://www.autismspeaks.org/what-autism/your-childs-rights
3:37
Your son is reacting and there is a reason for that. Part of the IEP team’s responsibility is to better understand the reason and what the function of those behaviors are for your son.
3:38
Comment From Charteisha

My son is 14 years old and had autism. He has been aggressive at school…hitting students and the teacher. This is his first year at this new school..high school. I am already becoming concern because the school called me yesterday to pick him up because he was aggressive. I don’t want him to be kicked out of school. I plan to increase his medication…Risperdal to hopefully get better control of his behavior. Any other suggestions?
3:38
Hi Charteisha! We are sorry to hear you are having difficulties with your son. This is something your IEP team and a psychiatrist should address to understand the underlying causes.
3:39
We have a great transition tool kit for parents just like you of individuals with autism ages 14-22. It is a guide to help walk you through this often difficult time. We can send it to you for free! Just fill out the form at the link below:http://www.autismspeaks.org/family-services/tool-kits/transition-tool-kit
3:40
I know this may take some tiime but it is so important to have good communication with his teachers and the others who are helping him at school.
3:41
Comment From Amy

I made a comment on how to get a person out of a local trainging center. This person is 40 years of age, counts, knows his color, ABC’s, feeds himself, dresses himself and talks with people. He has Autism and that’s the only reason he is at this trainging center. I would like for him to come live in my home and have a more normal life. Can you help me????
3:42
Hi Amy. Our resource guide has lists of attorneys and advocates that will be able to help you advocate for your friend/family member. Click on your state and then attorneys or advocates and type your zip code. Be sure to expand your search!www.autismspeaks.org/resource-guide
3:43
Hi Adrienna, There is a list of agencies in our resource library.
3:43
Comment From Adrienna

I have tried to look for any financial assistance through on your resource page and everytime I type in my area code and various distances I get nothing. Is there another site I can go to for finding financial assistance?
3:44
You may also want to contact local autism organizations listed in the Resource Guide who may know of other funding sources in your area.
3:44
Comment From Gillian

My son is 2 1/2 and was diagnosed with autism/pdd-nos at the age of 18 months. My husband does a lot of online research and lately all of this information keeps popping up about a link between autism and lyme disease and I wanted to get other mother’s opinions and/or personal experiences with this line of thinking
3:45
Hi Gillian. We are not aware of any relationship between Lyme disease and autism. If you have concerns, you should ask your pediatrician about it. You can also emailresearch@autismspeaks.org to get answers from our science team.
3:46
It is important for all of you to remember that while the internet has lots of perks and is a great source for information, please be careful with what you read, especially about autism. There are a lot of different theories out there, many from untrusted sources!
3:46
Comment From donna

is there any where i can get help to help my family to be able to communicate with my son better?
3:47
Hi Donna! We are in the midst of creating family support tool kits. We had a grandparent guide come out two weeks agohttp://www.autismspeaks.org/family-services/community-connections/celebrating-grandparents
3:47
And now we are working on kits for parents, siblings and friends. They should be out in the next two weeks!
3:48
We also have lots of books in our Resource Library for siblings, parents, and other family members. You can check out our books list at http://www.autismspeaks.org/family-services/resource-library/books
3:51
Comment From Erin

Where does a single parent of a 4yr.old pdd-nos w/3 other children get help for care?No family or friends to help and I work full-time.
3:52
Hi Erin. I am sorry to hear you are having difficulty finding care for your children. We did a Community Connections a few months back that provides lots of information and tips about finding effective respite care. http://www.autismspeaks.org/family-services/community-connections/respite-care-and-autism
3:54
Comment From Guest

My son is 6 and just got a PDD-NOS diagnosis this past summer…Before that he had a ADHD diagnosis which the school did not buy….But NOW they don’t seem to buy the PDD-NOS either?! What can I do to make sure we are all looking at him through the same lense for his next IEP meeting
3:55
Hi Guest. It is important that everyone who works with your son understands his strengths and limitations. This may be done by doing assessments of his different skill sets. The IEP must include lots of assessment data and information about your child’s status.
3:56
The areas of difficulty and strength are much more important than the actual diagnosis since every child on the autism spectrum is so different!
3:57
So it is important to make sure the IEP team and other professionals involved understand all they can about your son. You can read our IEP guide here:http://www.autismspeaks.org/family-services/community-connections/respite-care-and-autism
3:57
Comment From Erin

Is there a possible link between Ulcerative Colitis and Autism?I was diagnosed with UC after the birth of my daughter
3:58
hi Erin- Please email research@autismspeaks.org with your question. They will have articles or recent studies to answer your question.
3:58
Thank you everyone for joining today! Be sure to check out our newest project- a Health and Wellness site that includes lots of tips and resources regarding fitness, sleep and nutrition so your family member can be as healthy as possible!http://www.autismspeaks.org/family-services/health-and-wellness
3:59
We look forward to hearing from you all again next Wednesday at Office Hours! And as always, if you have any questions, please don’t hesitate to contact our Autism Response Team at 888-AUTISM2 or familyservices@autismspeaks.org
Categories: Family Services Tags: , , , , , ,

Family Services Office Hours – 09.21.11

September 22, 2011 1 comment

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.

In recognition of National Grandparents Day, on September 11th Autism Speaks is celebrating the grandparent connection in families affected by autism. During the month of September, we are asking grandparents to share your experiences, so that other grandparents across the country can benefit from your knowledge and the road you have traveled. 

3:03
Hi Everyone! Welcome to this week’s Family Services Office Hours! We are here to answer any questions you have about our resources and help connect you with others. So ask away!
3:04
Comment From sheila 

is there in sevices in lawrenceburg tn
3:05
Hi Sheila! Here is a link to our Tennessee Resource type! You can check for resources in your area!http://www.autismspeaks.org/community/fsdb/state.php?sid=50
3:05
Comment From Robbin 

I would like to know if there are any extracurricular activities in my area for my 16 year old son with Aspergers?
3:05
Hi Robbin! You can find lots of resources in our Resource Guide. All you need to do is click on your state, select categories like “Recreation and Community Activities” and type in your zip code.
3:06
I also suggest you order our Transition Tool Kit, it was designed specifically to help families of individuals with autism ages 14-22 on the transition to adulthood. It has lots of tips, including more about how ti get involved in the community.
3:06
Comment From Maggie 

Hi Autism Speaks. Thank you for giving us this opportunity to ask questions. I think my three-year-old son has autism. A friend of mine’s son was just diagnosed and I see a lot of his traits in my son. What should my first step be?
3:06
You can order a free copy on our website!
3:07
Hi Maggie! Thank you so much for joining us! There is a page on our website, ‘Learn the Signs.’http://www.autismspeaks.org/what-autism/learn-signsYou should also work closely with your pediatrician to be sure your son is reaching developmental milestones and to track his progress.
3:07
Also, check out our Video Glossaryhttp://www.autismspeaks.org/what-autism/learn-signs
3:09
We would also like to recommend a wonderful book, ‘ Autism Solutions’ by Dr. Ricki Robinson. Dr. Robinson will be here for a LIVE Chat on Monday, September 26th so check back for more!http://drrickirobinson.com/
3:10
Comment From Britt 

Hi Autism Speaks. My son was diagnosed with autism at 3. He is now 4. Lately a lot of people have been asking us what degree he is…and I have no idea. When he was diagnosed no oe mentioned a degree or anything like that that. Is this important to know? Does it make a difference? How would I go about finding this out? Thanks so much.
3:10
Hi Britt. Your pediatrician can help provide you with more information. However, regardless of the formal diagnosis, every child with autism is different so it is more important to focus on your child’s strengths and weaknesses and make decisions about his treatments based on what you see. You know him the best!
3:13
Comment From Connor

My wife and I are having difficulty potty training our daughter who has autism. Do you have any tips for us?
3:15
Hi Connor! Thank you so much for joining our chat. This is often difficult for families! Here are two books that we recommend!
3:15
Teach Toileting: A Revolutionary Approach for Children with Autism Spectrum Disorders and Other Special Needs
by Deborah Bialer http://www.amazon.com/teach-toileting-revolutionary-approach-disorders/dp/0615255523
3:15
Toilet Training for Individuals with Autism or Other Developmental Issues, 2nd Edition
by Maria Wheelerhttp://www.amazon.com/gp/product/1932565493/ref=as_li_ss_tl?ie=UTF8&tag=autispea-20&linkCode=as2&camp=217145&creative=399369&creativeASIN=1932565493
3:15
We haven’t read them ourselves but they have been submitted to our Resource Library by other families that have found them helpful, so I hope they are helpful to you too!
3:20
Comment From Britt

Thank you. Also, How would I go about finding activities for my son do? The state law here has changed for his IEP and it now says that he should have more social interaction…but we are having a hard time finding classes and activities for him that accept and understand kids with special needs. And lastly, do you know of or have any resource information for military families? My husband is AF and its likely that we will be moving again within the next two years. So I would like to get a resourceful connection if I can before then. Thanks you again.
3:21
Hi Britt, please visit our Resource Guide. You can search by state to find activities for your son.http://www.autismspeaks.org/community/fsdb/search.phpYou can also visit our Community Connections, ‘Have Some Fun Today! Recreation, Community Activities, Clubs and More!’http://www.autismspeaks.org/family-services/community-connections/have-some-fun-today-recreation-community-activities-clubs-and-
3:23
The Organization for Autism Research has sponsored a program called, ‘Operation Autism.’ It is a resource guide specifically for military families.http://www.operationautismonline.org/tag/military/
3:25
ACT Today! is a national non-profit organization is a mission to raise awareness and provide treatment services to families that cannot afford the treatments and services their children require.http://www.acttodayformilitaryfamilies.org/
3:25
Comment From Britt

Awesome! Thank you so much!
3:25
Comment From John

My daughter is having a hard time transitioning back to school. She is new in her mainstream class. How can I help her peers understand what autism is and why she has challenges. Thanks so much for taking the time here!
3:26
Hi John! We are sorry to hear that your daughter is having difficulties. We recently created a Community Connections, ‘Back to School: Let’s Get Ready for a Great Year’ that provides tips about how to ease this transition.http://www.autismspeaks.org/family-services/community-connections/back-to-school
3:27
You can also look at our School Community Tool Kit in the section ‘Peers’ for more informationhttp://www.autismspeaks.org/docs/family_services_docs/sk/Peers.pdf
3:27
Comment From Sally

How do I talk with soemone in person.
3:28
Hi Sally! We have an Autism Response Team, and our trained coordinators would be happy to speak to you. You can email them directly at familyservices@autismspeaks.org or call them at 888-AUTISM2. They are available during regular business hours.
3:37
Comment From Liz

I have a 9 year old son with Autism/Aspergers. I have not been able to find a way to explain his autism to him. I need help finding a way to talk to him in a way he will understand. Is there an easy way?
3:38
Hi Liz, this is a struggle for many families. Please visit our Resource Library where we have a list of Asperger Syndrome websites http://www.autismspeaks.org/family-services/resource-library/asperger-syndrome
3:38
We also have an ‘Asperger Syndrome and High Functioning Autism Tool Kit’ Tool Kit that can be downloaded for FREE here!http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
3:40
Comment From allison

i have a son 24 years old that was diagnosed as high functional with a photographic memory but i feel like he should be re-evaluated
3:41
Hi Allison. Re-evaluation is always a good idea if you feel like his diagnosis may have changed. You are the one who knows your child best, so it may be a good idea to trust your instincts and bring your son back to his doctor.
3:44
Comment From Colleen

What is this CARA thing I keep hearing about? Thanks for your help!
3:44
Comment From Louisa mciver

regarding the legislation that was re-approved yesterday….mandating coverage of autism therapies.
3:45
CARA, which stands for Combating Autism Reauthorization Act, was passed the the House yesterday(YIPEEEE), but we still have to wait for it to make it through Senate. For more information, you can visit this blog post by Judith Ursitt, the Director of State Government Affairs at Autism Speakshttp://blog.autismspeaks.org/2011/09/21/tell-congress-to-pass-the-combating-autism-reauthorization-act/
3:46
We have just a 9 days left to pass the Combating Autism Reauthorization Act (CARA) of 2011 before critical provisions expire on September 30th. On September 20th, the Combating Autism Reauthorization Act passed with a floor vote in the House of Representatives. Now, we need you to switch your focus again back ot the Senate. Contact your Senators to ask themto support this important piece of legislation!
3:46
Comment From Louisa mciver

The info I read says that state operated insurance has to cover autism therapies, etc. Does this also apply to group insurance through an employer?
3:46
You can click on your state to learn what is happening there!http://www.autismvotes.org/site/c.frKNI3PCImE/b.3909861/k.B9DF/State_Initiatives.htm
3:56
Thank you for joining us today! Our next live chat is Monday at 3PM. Dr. Ricki Robinson is going to discuss ASD and its impact on family members. She will have lots of great things to say so don’t forget to tune in!
3:57
As part of the live chat, we will be giving away ten of Dr. Robinson’s new book called Autism Solutions. So join us!
3:58
As always, if you have any other questions, please don’t hesitate to contact our Autism Response Team at familyservices@autismspeaks.org or 888-AUTISM2. Enjoy the rest of your day!
Categories: Family Services Tags: , , , , , , , , , , , ,

Hurricane Irene: How to Prepare

August 26, 2011 5 comments

Hurricane Irene is bearing down on the U.S. East Coast with exteme impacts expected through the weekend. Hurricane warnings and watches are posted as far north as New England. Autism Speaks wants to make sure that everyone can be as prepared as possible.

Here are some useful links that will help in storm preparation.

Here Shelley Hendrix shares how to navigate the uncertainties of a natural disaster as the mother of a child on the autism spectrum. She offers some special things to do for families having to evacuate.

The Autism Safety Project provides information for families and First Responders with information and guidelines for communicating with individuals with Autism Spectrum Disorder (ASD) in emergency situations.

AutismCares Provides Grants for Individuals with Autism Spectrum Disorders During Times of Crisis or Unplanned Hardships

Please everyone be safe and follow all precautions.

Please know that you can always contact 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 at familyservices@autismspeaks.org.

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

Family Services Office Hours – 8/24/11

August 25, 2011 5 comments

The Family Services Department at Autism Speaks will now offer online Office Hours each Wednesday, starting August 3, 2011, from 1:00-2:00 p.m. EDT

Office Hours, a new resource available on the web at www.autismspeaks.org will easily connect families to a wide variety of autism-related resources, including Family Services’ Toolkits, 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.

“Having a family member with autism can easily lead to feeling isolated without knowing where to turn. In addition, most families have little free time to search for reliable information about autism, yet they may be in need of timely information. Office Hours offers a quick connection to the Autism Response Team(ART) who can assist you in getting the information you need as quickly as possible,” states Marianne Sullivan, Assistant Director of National Outreach and Resources.

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

In addition to Office Hours, ART is available by telephone during usual business hours at 888-AUTISM 2 (888-288-4762). You can also reach ART by email at familyservices@autismspeaks.org.

Here is the transcript:

12:58
Hello Everyone!
12:58
Comment From Melissa 

Excited for our chat today! Thank you~
12:58
We are so excited to be on this chat today. As we wrap up summer we can look back over the month of August as we discussed back to school!
1:00
Today we are going to go over some last minute strategies to transition to the new school year. We would like to introduce to you our new ‘Individualized Education Program (IEP): Summary, Process and Practical Tips’
1:00
It is a free, new online guide that provides parents with important and reliable information and advice about navigating the IEP process, created by a team of pro bono lawyers at Goodwin Procter.
1:01
You can download it for FREE here!http://www.autismspeaks.org/sites/default/files/iep_guide.pdf
1:01
Another very variable resource we have comes from a LIVE Chat Gary Mayerson hosted, ‘How To Compromise With Your School District Without Compromising Your Child’
1:02
You can read the full transcript here!http://blog.autismspeaks.org/2011/08/18/transcript-gary-mayerson/
1:02
Comment From Deb 

Did anyone else send their child to school for the first time this year?
1:02
Hi Deb! Can you tell us a little bit about your child’s transition?
1:03
Comment From Deb 

He’s 4, and started pre-k this week.
1:03
How did things go?
1:03
Comment From Deb 

He’s doing well, but his anxiety is through the roof. Overall I’m pleased with his reaction
1:04
This is where transition planning comes in. It is great to prepare him by having routines or going over his day before he goes to school to alleviate some of his anxiety
1:06
Comment From Deb 

We did that, we’ve been getting ready for a couple of months. I just can’t seem to quite reach him to … smooth his feathers.
1:07
Keep trying and don’t give up! Communicate with his teacher- they may have some great ideas and teamwork is key!
1:07
Comment From Jenny 

Any good ways to handel anxiey over homework assignments? My son is in 8th grade and homework is so stressful to him.
1:07
Hi Jenny that is a very common concern.
1:09
Start with communicating with your son’s teacher about what the homework expectation is. I suggest you setup a special time each day to complete his assignments and work with the teacher to create a rewards system that will help him work through and complete his assignments. Remember, just like all other kids, your child is not any different… LOTS of children have trouble completing homework assignments. Ask family members and his teachers for some ideas how to best work through this issue
1:10
Paula Kluth has some wonderful resources that may help as well! Here is her page of ‘Readings’http://www.paulakluth.com/readings/
1:10
Comment From Arden 

We made my grandson, age 4, a book with pictures of his teachers and a story about the schedule of the day. He is in his 2nd year of pre-school throught the Special School District, and he likes going to school.
1:10
Arden that is wonderful! Great planning!
1:11
Kids with autism respond so well to predictability. We are always so glad to see a grandparent involved- keep up the good work!
1:12

The School Community Tool Kit provides information and resources for general education and administrative school staff to support a positive school experience for children with autism.
1:12
The School Community Tool Kit has some great tips and suggestions on classroom management for kids with ASD. Check out the ‘Appendix’ section!http://www.autismspeaks.org/family-services/tool-kits/school-community-tool-kit
1:13
Each section is broken up and you can download each section independently – for FREE!
1:14
Comment From Jenny 

does this explain the special education rights of the parents as well as those of the child?
1:15
Hi Jenny – the IEP Guide explains this, which can be downloaded here http://www.autismspeaks.org/sites/default/files/iep_guide.pdf
1:15
You can also learn more about your child’s rights here!http://www.autismspeaks.org/what-autism/your-childs-rights
1:16
Comment From Jenny 

ok great because I always feel like the schools are not telling everything
1:16
One of the most important things as your role as a parent is to be an advocate. We have provided these resources so you can do your best in parent advocacy
1:17
Comment From Brenda 

My 7 year old son has Asperger’s. He’s entering 2nd grade. Although making progress in leaps and bounds with a great IEP and teachers and professionals, he is still very immature emotionally and tantrums in front of his friends. How can we help education not only his teachers, but his classmates on his condition. He still doesn’t understand himself.
1:18
Hi Brenda- It would be really helpful to look at the School Community Tool Kit in the Appendix section. There are a lot of great resources on how to talk to peers as well as teachers about ASD
1:19
You may also want to look at the Asperger Syndrome and High Functioning Autism Tool Kit. It goes more into the details of the diagnosis!
1:20
Comment From Jenny 

My son had a teacher that played a video about Autism designed for children for her class. it really helped the other kids with how they treat him in a positive way.
1:20
Nice going Jenny and kudos to the teacher who is thinking about the needs of ALL of her students!
1:21
Comment From Jenny 

it was her idea, she was a great teacher
1:23
We have heard some great feedback on the book – ‘Wrightslaw: All About IEPS’
1:23
You can also visit the website which is a wonderful resource for ALL parent advocates
1:24
Comment From Alexis 

My son is going to school for the first time and I’m worried because he doesnt speak yet
1:24
Hi Alexis – thanks so much for this question. How does your son communicate?
1:25
I am assuming that your child’s IEP has communication goals and objectives in it that outline the way in which your child communicates to teachers and peers. It is very important that it is well defined across all of his environments
1:25
In this case it would be important to have a speech therapist involved in your child’s IEP planning
1:26
Many parents have reported great success in using iPad technology as a way of communicating
1:27
The ‘Technology and Autism’ Community Connections is also a great resource http://www.autismspeaks.org/family-services/community-connections/technology-and-autism
1:28
*Many parents have reported great success in using iPad technology as a way of having their child communicate* To be more clear!
1:28
Comment From April Shumard 

Hello! My name is April. I just wanted to ask right quick, I know the IEP is done yearly, but is is done on the yearly annaversary of the last one or is there a specific month. I am forgetful!
1:29
Hi April! I know it can be hard to balance everything! So the IEP is done annually in the same month
1:29
Comment From Sandy 

My son is 9 & going into 4th grade. I’m concerned about his ability to focus on non-preferred tasks in class (i.e. math). We worked on his summer workbook yesterday & it took him at least 45 minutes to complete 10 problems . . . and that is with me right there with him to keep him on task. He can do the work, but is so distracted it takes forever.
1:30
Hi Sandy – I think it would be great to get some support from a behavior analyst who can work to create a behavior plan that will help your son complete his task in a timely manner.
1:31
I would recommend asking your son’s teaching to ask for a functional behavior assessment
1:31
During last week’s chat with Gary MAyerson, he defined what a Functional Behavior Assessment is.
An FBA identifies the target behaviors, tracks and measures the frequency, duration and antecedents of those behaviors, and then, finally, hypothesizes as to the likely function of the target behaviors…and you need to know what the function is before you can develop and design a proper behavior intervention plan
1:33
Comment From Sandy 

Thank you – I will pull up last week’s chat and check in with the people in charge of the IEP.
1:34
Your welcome! We have dedicated the month of August to back to school and we have lots of resources in our Family Services Section so PLEASE be sure to visit!
1:35
Comment From doreen 

my son got dxsd autism and autustic spectrum disorder does he qualify for social security benefits ??
1:35
Hi Doreen – It all depends on your state, but check with your State Developmental Disability Office. Social Security is a little tricky in that it depends on a family’s income, but your son may be entitled based on his disability
1:37
Comment From Arden 

I will be attending the IEP meeting next week. Any streategies that will help me get through the process?
1:37
First of all Arden, good luck!
1:37
It is great that you are thinking about what you can do to make the process more smoothly
1:37
If you look back at earlier posts in this Q & A there are great resources that you can review
1:38
We have a new Individualized Education Program (IEP): Summary, Process and Practical Tips, a free, new online guide that provides parents with important and reliable information and advice about navigating the IEP process, created by a team of pro bono lawyers at Goodwin Procter.
1:38
One thing to remember is to be positive and promote collaboration with your IEP team!
1:39
A positive attitude will go a long way in helping to get services for your child
1:40
Comment From Alexis 

Quick Question Is a child with a developmental disability such as autism entitled to a blue handicapped placard from the DMV
1:42
That is a good question Alexis! I think that depends on that state you are in and the eligibility requirements are listed on your state DMV page
1:42
Comment From Guest 

How do you get the school to participate in the use of the school tool kit?
1:44
Great question! We have had many parents who send the PDF to the Resource Specialist at their child’s school. BEWARE it is 250 pages and it can be expensive to print. Many schools may want to print one copy to keep in a binder to have to use for all of their students with autism
1:45
There is a section for staff training included in the kit
1:45
Great work promoting the Kit to your school! Great advocacy!
1:45
Comment From April Shumard 

Do I have to wait for the yearly IEP? Can I request sooner??
1:45
Absolutely!
1:46
Under IDEA anyone on the IEP can request an IEP
1:46
It is important to put that request in writing to make sure it is well documented and that the person who is responsible receives the document
1:47
If your school is not in compliance with your current IEP it is important that you go ahead and make a request for an IEP meeting
1:48
Comment From Bonnie 

My son was taken out of a regular school in grade 2 he should now be grade 5 level. They have had him in an environment where he is with children who have been banned from all schools here. He has been out of school now for near 2 months with me fighting tooth and nail to try to get him integrated into a regular school with no relief. I have tried through politicians, the autism network in my state education department complaints etc. Any suggestions ?
1:49
Hi Bonnie – you have obviously tried through many different avenues to advocate for your child. You may want to seek an attorney. If you visit the Resource Guide under your state, you can find a list of attorneys in your state.
1:50
It sounds like you have been through a lot and I wish you and your son the best
1:50
Some parents have to move mountains to get the right fit for your child.
1:51
You are doing a wonderful job of being a parent advocate
1:51
Comment From Teresa 

My grandson’s school told my daughter that even though she had an IEP from the end of this past school year that they would still have to evaluate him for 90 days to decide if they are going to impliment the recommendations from his last IEP. Why is it they just don’t go ahead and impliment that IEP while he is being evaluated?
1:52
Hi Teresa – you are absolutely right to question this!
1:52
Assessments should have been completed in the last IEP. I would recommend a new IEP meeting to discuss this issue
1:52
If something has changed or the school is questioning that needs to be discussed in an IEP meeting
1:53
Comment From Teresa 

how do we go about getting them to do this?
1:53
Requesting the IEP meeting through the Resource Specialist at your grandchild’s school is the way to go. Everyone team member has the right to do that
1:54
Comment From Teresa 

Am I able to attend this IEP meeting. My daughter knows nothing about autism.
1:54
ABSOLUTELY!
1:55
Parents have a right to bring support or another family member to an IEP meeting
1:56
Comment From Teresa 

we have been told by the school that I am not able to attend. I actually have three grandsons with autism two that are in school. THANK YOU SO MUCH. Won’t be shut out again. this is sure nice to know.
1:56
We would like to thank you all for visiting Office Hours this week. It is so great to see the autism community so involved and advocating for our kids with autism.
1:57
Please be sure to check out our new Individualized Education Program (IEP)http://www.autismspeaks.org/sites/default/files/iep_guide.pdf
1:57
We are going to be skipping next week, but will be back on September 7 from 3-4pm EDT
1:58
We will be shifting our discussion to celebrate grandparents and their connection to their grandchildren with autism.
1:58
Please know that you can always contact 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.
1:59
Comment From Arden 

Thanks for all the info and links
1:59
Comment From Guest 

Thanks to you we have a better acknowledge about Autism !!
1:59
Comment From Jim 

thank-you for having this forum available to us
1:59
WE WISH YOU THE BEST OF LUCK! See you after Labor Day!
Categories: Family Services Tags: , , , , , ,

Get Quick Assistance

August 2, 2011 1 comment

The Family Services Department at Autism Speaks will now offer online Office Hours each Wednesday, starting Aug 3, 2011, from 1:00-2:30 pm.

Office Hours, a new resource available on the web at www.autismspeaks.org will easily connect families to a wide variety of autism-related resources, including Family Services’ Toolkits, 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.

“Having a family member with autism can easily lead to feeling isolated without knowing where to turn. In addition, most families have little free time to search for reliable information about autism, yet they may be in need of timely information. Office Hours offers a quick connection to the Autism Response Team(ART) who can assist you in getting the information you need as quickly as possible,” states Marianne Sullivan, Assistant Director of National Outreach and Resources.

The Office Hours resource is staffed by ART—who are specially trained to connect with families about autism resources.

In addition to Office Hours, ART is available by telephone during usual business hours at 888-AUTISM 2 (888-288-4762). Also, you can reach ART by email at: familyservices@autismspeaks.org

To participate in Office Hours visit here.

Here is a list of Tool Kits our Family Services Team offers:

100 Day Kit

Manual de los 100 Días

School Community Tool Kit

Tips for Successful Haircuts

Transition Tool Kit

Categories: Family Services Tags: , , , ,

Family Services Inaugural LIVE Facebook Chat

May 26, 2011 4 comments

In case you missed it, the Autism Speaks Family Services Team hosted their first LIVE Facebook Chat on May 25. The chat was an overwhelming success, with 426 participants!

If you have any questions,  you can call, 888-288-4762 and the Autism Response Team Coordinator will be glad to speak with you and help find answers.

You may have some similar questions asked in the discussion, so here is the transcript. 


3:27
Hi Everyone!
3:27
Thank you so much for joining this chat! We are so excited to share our resources with you all. Our goal is to point you all in the right direction and help you in every way that we can!
3:29
Comment From Guest

is there a test for asphergers syndrome?
3:31
Unfortunately there is no medical test to determine Autism Spectrum Disorders, the diagnosis is made through structured observations of the person.
3:33
Comment From Lilly

My son has moderate autism and is 16 years old. where and when do I look for services for him when he is an adult? What services does he get or can he get?
3:35
Family Services has just released the Transition Tool Kit, this kit will be a tremendous help to you and your family in finding resources go to www.autismspeaks.org/familyserviices.
3:35
Comment From Guest

When I read “early intervention”, how old is ‘early’?
3:36
Thanks for your question!
3:36
Early intervention typically starts at the age of 2, although the earlier, the better.
3:36
Some children are being diagnosed at age 1 today because of better detection and awareness.
3:37
Comment From Angie

I sent a question, did it get received?
3:37
Hi Angie!
3:37
Comment From Melanie

I was wondering if you have any book recommendations for family members who dont know anything about Autism and educating them?
3:37
We are trying to answer as many questions as possible!
3:38
Our Resource Library is available online and we have a variety of autism related information and the latest books
3:38
Comment From Chall

How do I learn about support groups in my area? I currently live in Mt Pleasant. Also, is it possible to have a diagnosis of PDD NOS at age 4-5 and then suddenly fit ito a category like Aspergers?
3:38
Hi Chall!
3:39
If you visit our Resource Library, you can search by state to find services in your area
3:40
Also, it is true that children can change over time, so it is important to have your child reevaluated to track progress and changes in development
3:42
Comment From Marie

Is there resources or supports for siblings? I have an 11 year old son with Aspergers and Tourettes and our younger son who is 9 is dealing with some issues dealing with his brother…
3:42
Hi Marie – that is a great question
3:43
We covered this topic in a ‘Community Connections’http://www.autismspeaks.org/community/family_services/siblings.php
3:43
Comment From Annie Ellis

I asked a question and got no response. I’m wondering if you have any suggestions for getting my 3yr old autistic son, Jamey to eat or even try new foods?
3:43
Hi Annie Ellis
3:43
Selectivity in food choices if very common in individuals with autism
3:44
This should be included in your child’s IEP as a goal and addressed through a team effort because of the challenges of this type of behavior
3:44
There are several programs out there to help Jamey try new foods, it is a matter of individualizing it for your son
3:45
Comment From Dawn

My daughter has found a program for the summer for my grandson, but it is so expensive and not covered by her medical insurance. Is there help out there?
3:45
Hi Dawn
3:46
Summer Programs can be very expensive and one of the things we encourage families to do, is to ask for scholarships or sliding-scale fees for those who cannot afford to pay full tuition
3:47
Also, there are community groups who do make donations to cover the individuals tuition
3:48
Autism Votes is working to ensure that these types of programs can be covered under medical insurance.http://www.autismvotes.org/site/c.frKNI3PCImE/b.3909853/k.BE44/Home.htm
3:48
Comment From DENICE

HOW DO YOU BECOME AN ADVOCATE IN A AREA SUCH AS TEXAS THE VERY TIP OF TEXAS ? MCALLEN TEXAS…
3:49
Hi Denice
3:50
Walk Now for Autism Speaks has a strong presence in Texas and we would encourage you to become a part!http://www.walknowforautismspeaks.org/site/c.igIRL6PIJrH/b.4356939/k.BF85/Home.htm
3:50
If you need more help, check out Texas Resource Guide here:http://www.autismspeaks.org/community/fsdb/state.php?sid=51
3:51
You all have such great questions! We are working to answer all of them!
3:51
Comment From Guest

what sort of trainings might parents of children with (mild) autism want to participate or get trained in? (ABA, etc.)
3:52
It is well known that families that get involved with working with their children ahve a higher success rate in achieving their goals
3:52
It is important to find local trainings or workshops that can assist you with these details
3:53
Comment From chris

How do I tell my son about the changes his body is going through?
3:53
Hi Chris!
3:53
This can be a very difficult conversation
3:54
There is a ‘Sexuality’ section in the Transition Tool Kit that helps to explain the changes their body is going through
3:54
Comment From Sarah

My son is a 16 years with a diagnosis of asperger. He really wants to be like “other” kids, and would like to get a part time job…but making calls, etc. scares him. Any suggestions?
3:54
Hi Sarah! Thanks for your question
3:55
It is understandable that he would react like this. Practicing will help him learn and gain this skill.
3:56
He could take his resume and bring it to a store if he feels more comfortable face-to-face. Sometimes it is easy to interact in that way
3:56
Comment From allisa

I need to find qualified respite or care giver for an 11 year old with a dual diagnosis of down syndrome & autism. I am a single mom with 3 children….and I never ever have a break …..is there any options at her age ?
3:56
Hi Allisa
3:57
Typically parents will go through local agencies, like Easter Seals, that provide respite
3:57
Networking to find that respite worker is key – maybe other parents, your church group, local colleges, etc.
3:57
You are right – you need a break!
3:58
It is key to find someone that you and your child are comfortable with
3:58
Comment From Tasha

My daughter is 3 and just got diagnosed with Autism last week. When I tell people she is Autistic, NO ONE believes me. Not even family. Could the doctor and I have been wrong? Or is there a way to open peoples eyes and except it?
3:59
Tasha
3:59
Accepting an autism diagnosis is a process
4:00
Sometimes family members will react with denial, and this is normal and difficult. If your child has been diagnosed by a competent professional then you should feel like you have taken the right steps in getting your child the right help that they need
4:01
Comment From arrione

Are there any good programs in Louisiana for autistic children?
4:01
We offer a Resource Guide Directory of autism resources and agencies that can be of help to you.http://www.autismspeaks.org/community/fsdb/state.php?sid=22
4:03
Comment From Courtney

We just found out my son has Autism last Thursday. We were also told that the waiver for funding for his treatment will take about a year. What can we do in the mean time?
4:04
Hi Courtney – I can’t specifically answer your question because most funding and treatment depend on the state you live in
4:04
In the meantime you can visit this page, ‘Your Child’s Rights’http://www.autismspeaks.org/rights/index.php
4:05
You are doing the right thing about asking questions and asking why. The earlier you start, the better off you are
4:05
Here is also a link to our ’100 Day Kit’ that can help steer you through early diagnosishttp://www.autismspeaks.org/community/family_services/100_day_kit.php
4:05
Comment From Sue

We have struggled with pubic school to get what our 8 y/o son with Asperger’s needs. They think all Aspie kids are the same. We will be home schooling in Fall. Can anyone suggest curriculum’s that help keep a 3rd grader engaged?
4:06
Hi Sue
4:06
We have developed a Tool Kit that you may find very helpful that is geared to individuals with Asperger’s Syndrome
4:07
Comment From Trina

Are there any resources online to help an autistic teen prepare for a job interview?
4:07
Here is the ‘Asperger Syndrome and high Functioning Autism Tool Kit’http://www.autismspeaks.org/docs/family_services_docs/AS-HFA_Tool_Kit.pdf
4:08
Trina, I would recommend you visit our ‘Autism in the Workplace’ guide
http://www.autismspeaks.org/community/family_services/autism_in_the_workplace.php
4:08
‘Autism in the Workplace’ is a useful guide for helping individuals prepare for a job interview
4:09
This focuses on employment readiness
4:09
Comment From Traci

I am single mom with no income and I am having troubles finding the help I need for the guardianship paperwork for my son. He is turning 18 in July so I don’t have much time. Any suggestions?
4:09
Hi Traci
4:10
This changes depending what state you live in. There is a section in the ‘Transition Tool Kit’ called legal matters.
4:10
Guardianship differs from state to state so it is important that you discuss with a state agency
4:12
Hey Everyone!
4:12
We are so excited that you are all participating, but we just don’t have the time to answer everyone’s questions!
4:13
If your question goes unanswered you can call, 888-288-4762 and the Autism Response Team Coordinator will be glad to speak with you and help find answers to your questions
4:15
Comment From Suzanne

When my 3-year old was diagnosed a year ago with Autism, doctors and early intervention services were lined up to evaluate him. But nobody cares about getting my 8-year old a diagnosis. How do I get a comprehensive evaluation for an older child?
4:15
Hi Suzanne
4:16
We are so sorry to hear you are having difficulties. The process should be the same as a younger child, but we often recommend that you go through your pediatrician to get a referral. This is a good way to begin the process.
4:16
The school district and state agencies should also be involved.
4:17
This is a common complaint from families that have older children requiring an evaluation
4:17
Comment From amy

need information on how to make a child with aspergers behave at school
4:18
Hi Amy – here is our ‘Asperger Syndrome and High Functioning Autism Tool Kit.’http://www.autismspeaks.org/docs/family_services_docs/AS-HFA_Tool_Kit.pdf
4:19
This is an excellent resource and you should be able to find just what you are looking for!
4:19
Comment From arrione

Do autistic kids need to get their hearing checked?
4:19
Hi Arrione
4:20
Along with their vision, hearing should be included in their annual check-up with their pediatrician. This is true for all children.
4:21
Comment From Jess

My son, 5, has problems with aggression. He has pretty severe sensory processing disorder (official diagnosis PDD-NOS). He’s always hitting and kicking the people around him. I’m worried it will keep him from having friends as kids are already eyeing him warily. What are the best resources to help us deal with it? Time outs and other typical discipline do not work.
4:22
Aggressive behavior can be part of having an autism spectrum disorder. It is important to have a professional understand and evaluate the child’s behavior. This is done through observation of the behaviors and the environments they occur in.
4:23
You should ask your child’s teacher or members of the IEP team for a behavioral consultation
4:24
Part of the evaluation will be a plan that will help to address behaviors across all environments
4:26
Comment From Devin

My 3 year old daughter has been diagnosed with PDD-NOS. I was just wondering if there are any ways to help her cope while out in public. We can’t stay at home ALL the time, but she just cannot function in public. It’s heartbreaking and embarrassing at the same time.
4:26
Hi Devin
4:27
Our recommendation is to get some help with this and your IEP Team should be a resource
4:28
It is important to have your child out in public and exposed to different people and communities. It is also important to deal with behaviors once they do come up
4:28
Your child will have the opportunity to adapt and learn new behaviors when you respond consistently each time
4:29
It is important that you are addressing these behaviors at a young page – good for you!
4:29
Alright everyone, this chat is coming to a close
4:29
Thanks to you all for participating!
4:30
We are so sorry if we didn’t answer all of your questions. We are still here for you!
4:30
Please call the Autism Response Team 888-288-4762 and you can talk with coordinators who will be glad to answer your questions
Categories: Family Services Tags: , , , ,
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