Home > Family Services > Autism Speaks Family Services Office Hours 8/3/11

Autism Speaks Family Services Office Hours 8/3/11

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

12:50
Welcome to Office Hours offered by the Family Services Department at Autism Speaks. 
Today’s office Hours is staffed by Marianne Sullivan, RN, MN, Assistant Director of National Outreach and resources.Hello and Welcome to our new resource Family Services Office Hours
Today, I would be happy to assist you to find autism related information and connect you with Autism Speaks resources found in the Family Services section of our webpage.
12:52
Comment From Dr Lance

Hi – Do you have any resources, esp online resources for parents of Autistic kids who want to home school their child, esp middle school kids

12:53
Hi Dr. Lance! Check our the Resource – you can search by state and zip code in over 50 categories
12:54
Here are some tips on how to use the Guide:
12:54
Click on your state. A list of categories will appear. Choose a category of interest and search results will appear.Results display in alphabetical order. You can refine your search by entering the zip code and radius (miles) of a specific area. This result will include surrounding areas and states.For a mapped result of resources, click on map, in the distance column. Each resource is represented as a map marker, which when clicked displays the address of the resource.***To submit a service to the Autism Speaks Resource Guide, or update an existing entry, click here.
12:55
Comment From Dr Lance

thanks – I tried that

12:55
Were you not able to find what you were looking for?
12:57
Comment From DJ

As the school year nears and I take more notice of how my 8 year old with Autism has regressed a bit and his behavior has altered some, I’m struggling with the delicate balance of what is CODDLING and what is UNDERSTANDING when it comes to his behavior, reactions and his meltdowns. Any tips?

12:57
Hi DJ
12:57
We actually have a Community Connections on the transition back to school here: http://www.autismspeaks.org/family-services/community-connections/back-school-its-transition-time
12:58
You may find this helpful. Our next eNewsletter will be published on August 18th and we will be updating all of this information
1:00
Comment From DJ

Thanks, I’ll check that out! He’s a very sweet and understanding boy, and I think I struggle with his returning to school more than he does, but we had a horrible experience with his 1st grade teacher and it’s made me so gunshy of new teachers and even new students, as she allowed them to make fun of him with no consequence.

1:00
Comment From CIndy Goffus

Hi, My son is 19 autistic and mr, he lives in avella pa, washington co., his exit iep from public school is on aug 30 2011, he doesn’t want to go till 21, he wants to work at gainful employment–he was working at job lifes work while in school–that stopped at end of school yr 2011, he had his meeting monday with Supports cord-for ISP info……can you tell me how to get funding for paid transportation for him to get back and forth to work…..and how to get job search help and job coah to get him acclimated to his work schedule and routine-for him…he wants to work in a local fish market-Wholey’s-in pgh pa. thanks so much….

1:00
Hi Cindy – Autism Speaks has developed a Transition Tool Kit. I recommend that you go online and order a FREE copy of it
1:01
I think you will find this very helpful
1:02
Comment From Guest

I am working on potty training my daughter who is mildly autistic. Do you have any suggestions or tips

1:03
Hi Guest – we have put together a Resource Library and there are new books that are excellent with the topic of potty training
1:04
Comment From BreeAnn Davis

I have a son who is non verbal most of the time, but we keep getting denied by our local state grants to buy him some communication devices. Any ideas on other places we can look? We cannot afford to buy him one on our own.

1:05
Hi BreeAnn – the communication device may be required through the IEP process. Going through your school district is a good place to start
1:06
If it is required for him as a way to access his education, then the school should be responsible
1:06
Check out this Community Connections on how advocacy can make all the difference! http://www.autismspeaks.org/family-services/community-connections/advocacy-can-make-all-difference
1:08
Comment From melissa

can i ask for a para pro for my son in his iep and get one even if the school states theres “no funding”

1:08
Read through this section of ‘Your Child’s Rights’http://www.autismspeaks.org/what-autism/your-childs-rights
1:08
This will help guide you further!
1:09
Comment From Guest

Where can a college bound child on the spectrum get grant / financial assistance for college in Idaho?

1:10
HI Guest – here is the page for your statehttp://www.autismspeaks.org/community/fsdb/state.php?sid=16
1:11
Think College is also a great option to look athttp://www.thinkcollege.net/index.php
1:12
Comment From Ginny

Hi, My son is 5 and was just diagnosed PDD NOS. Where can I have information mailed to me on this autism spectrum disorder?

1:13
Ginny you have come to the right place!
1:13
The 100 Day Kit was created specifically for newly diagnosed families to make the best possible use of the 100 days following your son’s diagnosis
1:14
You can also call the Autism Response Team at at 888-AUTISM 2 (288-4762)
1:14
Comment From Joseph Rose

California has IHSS, a program that essentially pays a parent to stay home to take care of a child with Autism. Is there an equivalent in Pennsylvania? I am home with my son all day, and I am struggling.

1:16
Hey Joseph – have you checked our our Resource Guide for Pennsylvania?
1:16
You may find that our Home & Community-Based Waivers section will be helpful
http://www.autismspeaks.org/community/fsdb/category.php?sid=45&cid=78
1:17
Comment From Joseph Rose

just got it open

1:17
Comment From laura

I have a 2 year old little boy who has shown sighns of autisum since he was born we are fighting with his physitianas well as his neuralogist about having him refered for testing. is there a way to have him tested with out their referal.

1:18
ABSOLUTELY! You do not need an early referral to early intervention services
1:18
What state are you in?
1:19
Search this map and it is right at the top of the page – ‘Early Intervention Services’
1:19
Comment From laura

we live in arkansas

1:19
This page should be especially helpful -http://www.autismspeaks.org/community/fsdb/category.php?sid=5&cid=83
1:20
Comment From Amy

Is there assistance for adults with autism who have reached 18 years of age and are being denied SSI benefits?

1:20
Hi Amy -there is assistance for adults with autism and you will be able to get guidance with the Transition Tool Kit
1:21
Remember you 
1:21
Guest – we have more college information for you!
1:25
Comment From Joseph Rose

I’ve heard about families getting an “Autism Advocate” to help with various issues, getting services, etc. I haven’t had much luck in finding out exactly what that is and how to get one.

1:25
You may be able to find an ‘Autism Advocate’ here.http://www.autismspeaks.org/community/fsdb/category.php?sid=45&cid=68
1:26
Comment From Jaz

Are there resources in Florida in order to seek an adult diagnosis?

1:27
Hi Jaz – you should look into getting a diagnosis from a psychiatrist or psychologist who has the experience in diagnosing adults with autism. You may want to check out our Resource Guide here:http://www.autismspeaks.org/community/fsdb/category.php?sid=12&cid=110
1:29
Comment From laura

thank you. Michael is currently in EI,OT,PT and speach. we just want to make sure we are getting him all the help he needs

1:30
It is key to know your child’s rights. That way you will be able to get all the services he needs and be able to properly advocate for him. Visit this page to learn more:http://www.autismspeaks.org/community/fsdb/category.php?sid=12&cid=110
1:30
Comment From Oma

I take care of my 5 year old grandson who was diagnosed with Autism last year. He has made tremendous progress but one thing we just can’t seem to get is him staying dry at night and during rest time. He is trained otherwise during the day and rarely has an accident. He also has big problems with chronic constipation… Any tips on how to help him stay dry? He wears pull ups at night… but not during naptime.

1:31
Hi Oma – This may be something that your grandson’s pediatrician can help with. They may be able to refer you to another specialist to get the proper help he needs
1:31
Good for you in trying to understand the problem. You are a great grandparent advocate!
1:32
Comment From Cindy

thanks for the tool kit–printing now and will sit back and red it this afternoon….much appreciated…….

1:32
That is great Cindy!
1:33
Comment From Oma

I will ask again. when I go to my new pediatrician. The last one gave medication for it, which my grandson hated and I ended up not giving. He is very sensitive to taste and smells and this stuff was awful…

1:33
Comment From Oma

I hope his new pediatrician will be able to help further.

1:33
What you are doing is right. You know your grandson best and continue to work and see what methods agree best with him
1:34
I’d like to invite everyone to sign up for our Community Connections newsletter
1:34
Community Connections, published monthly by the Autism Speaks Family Services team, aims to increase opportunities and awareness for people with autism and their families in their local communities.Each month’s newsletter explores a relevant topic with practical tips on dealing with everyday situations, links to local resources, and stories from experts and families who share their successful experiences.
1:35
This month’s Community Connections will be able ‘Back to School’ and how best to ease the transition for your child with autism
1:36
Comment From Oma

One last question, do you have any advise on how to make dentist visits easier?

1:36
Yes we do! The Dental Tool Kit!
1:37
Oral health is a very important component of healthy daily living. But for some children with autism, oral health habits can be challenging. Autism Speaks has teamed up with Colgate and Philips-Sonicare to create a dental guide and video to provide tips for improving oral hygiene at home, as well as information about how parents and dental professionals can make a visit to the dentist’s office less stressful and more productive. Our hope is that this guide will provide information for families to help begin a lifetime of good oral care.
1:37
Comment From Mae

I live in Ga, my grandson is 10 years old, could you please tell me where I can find assistance with medical and doctors visits. Where can I find support in my area I live in a small town..

1:37
Hi Mae – Autism Speaks Resource Guide is available online
1:38
Because you live in a small town, be sure to adjust the radius when searching by your zip code.

1:39
What type of assistance are you referring to? Financial or identifying professionals?
1:39
Comment From Sara

my son Andrew 2 1/2 just passed away he had ASD and epilepsy, and there is no transition assistance no foundations I could find to help single parents or parents who were not able to work due to caring for thier child, are there foundations that help financially in my area churches donate to CARES but they help $50 for rent or electric but not both… What am I to do?

1:40
Hi Sara – first let me say how sorry I am about your loss. Here at Autism Speaks we care about you and your family
1:40
AutismCares provides support for families affected by autism during natural disasters and other catastrophic life events. AutismCares helps families to cover costs associated with critical living expenses such as housing, utilities, car repair, day care, funeral expenses, and other essential items on a case-by-case basis.
1:41
Comment From Oma

This is awesome! Thank you! I signed up for your newsletter too. I am so grateful for all these resources. Caring for my grandson is an ongoing learning experience and all of this helps tremendously.

1:41
Great Oma! We are so happy we can help!
1:42
Comment From Amanda

I have a 6yr old son who was diagnosed 3yrs ago. We just moved from wisconsin to saint paul minnesota. I am having trouble finding a new doctor and programs here. Any ideas

1:43
It is best to get out in the community. Calling local agencies and talking with other parents are often the best ways to get a referral
1:44
Comment From Sara

Are there any grievance assistance for the loss of an ASD child?

1:44
Sara what you are doing is right and it is very important for you do to. You must take care of yourself. Seek a professional counselor in your local community
1:45
Comment From Mae

finincial and different support group with special help

1:46
Finding other families in your community affected by autism is truly the best way to get support
1:46
and also help to identify local agencies who can help. Being part of this chat is also a great thing to do!
1:46
Come back next Wednesday!
1:47
Comment From Sara

Thank you for your assistance he passed on the 23rd of July and everything seems unreal…

1:48
We are here to offer as much support as we can. Please be sure to contact AutismCares to help with financial assistance. Also please seek counseling in your local community
1:48
Comment From Angela

My son was diagnosed last week with high functioning Autism, he will be 4 Aug 25. Not potty trained yet among other things, any tips on potty training??

1:49
You can order the Asperger Syndrome and High Functioning Autism Tool Kit for FREE http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
1:49
You should be able to find tips about potty training there
1:50
Comment From Mae

I will come back chat has been very helpful.

1:50
Good we are so glad!
1:50
Comment From DeLanie Brewer

My son is 16, moderately autistic but 95% non-verbal at the moment, and within the last year has developed several patterns that look less autistic and more O.C.D.ish. Also, at the same time, although his speech has never been great– he’s gone from being about 60% non-verbal.. to about 95% to sometimes we cant get anything out of him. He tries, but it’s as if he cant the word out. Then, when he does it becomes like a “tick” that he repeats over and over for about a minute- literally. We’ve done brai scans… which were normal. Everyone I’ve talked to here in Okc is clueless- as am I. Any advice…?

1:50
Hi Delanie – you must keep searching for a professional that can meet his needs and help to sort this out.
1:51
You can order it here for FREE!
1:51
Are you in Oklahoma?
1:53
The Autism Treatment Network was established as the nation’s first network of hospitals and physicians aiming to bridge gaps in knowledge and understanding and to improve treatment for individuals with autism.
1:53
Comment From DeLanie Brewer

Yes

1:54
There isn’t a location in Oklahoma, but you may want to seek the closest one for a referral
1:54
Comment From DeLanie Brewer

What kind of professional would you suggest..? He is on state medicaid– so our resources are pretty limited

1:55
I think a psychiatrist or other specialist would best understand the overlapping conditions
1:56
Comment From Robbin

Hello: I have a daughter who is 19 years old. She was diagnosed as ADD. She started college 2 years ago about an hour and a half away from where we live. She had a real hard time adjusting and locked herself away in her room without going to any of her classes for two months. She anxiety when it comes to speaking with people and has been exhibiting some Autistic like behaviors. We also have a son who is 16 with Aspergers and my daughter stated that she has some of the same feelings as he does. Nevertheless, we are beginning to think that she may have Aspergers also and was just misdiagnosed. Where can I get her evaluated for Autism as an Adult? We live in NC

1:57
Hi Robin – why don’t you try getting a referral from your daughter’s primary care physician?
1:58
You should also check out our Asperger Syndrome and High Functioning Autism Tool Kit http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
1:59
Comment From Maribeth

My son 8 yrs old and newly diagnosed with ASD. We are trying to find OT for him, to help with his handwriting and social skills. There isn’t ANYWHERE in our county that takes our insurance. How do people find help when they can’t pay $70 or more per sesion?

1:59
Hi Maribeth – you should visit our Resource Guide to find an OT for him. Have you requested OT through the school district?
2:00
You can search the Guide according to your state
2:01
The costs of services can become outrageous. Luckily, we have the folks at Autism Votes working to represent autism familieshttp://www.autismvotes.org/site/c.frKNI3PCImE/b.3909853/k.BE44/Home.htm.
2:01
We are so happy you all chose to visit our ‘Office Hours.’
2:02
It is so important for people to get meaningful information that is updated and readily available to help you in the day-to-day.
2:02
Comment From Maribeth

I am hoping that we will be able to get him help through the school. I have a meeting set up, but from what I am told, it is very difficult to get approved for it where we live. (palm beach county). It is mild, so I am trying to prepare myself ifthey don’t approve it

2:02
Way to go Maribeth! You are doing the right thing, just try and stay positive and keep advocating!
2:03
Be sure to check out our page of Tool Kits here:http://www.autismspeaks.org/family-services/tool-kits
2:04
Comment From Oma

Thank you for providing this service. It’s great to see others’ questions, too, and to see your answers. I downloaded quite a few things just from following the links.

2:05
We are glad you are using our resources!
2:05
Keep us posted on your progress!
2:06
Comment From DeLanie Brewer

This is sooo cool, THANK YOU!!! I don’t know why, but I’m sitting here in tears. –Thank you!

2:07
No, DeLanie Thank you for joining! Be sure you are all taking care of yourselves. This is a lifetime of advocacy and sometimes you just need a break.
2:08
We are always here to help point you in the right direction. Never hesitate to call the Autism Response Team. Call us at 888-AUTISM 2 (288-4762) or email us atfamilyservices@autismspeaks.org
2:09
We have noticed there are several adult questions. Recently, Peter Bell was featured on PBS’s ‘Need To Know’ and he covered this topic. To watch the segment visit our Blog.http://blog.autismspeaks.org/2011/08/02/peter-bell-featured-on-pbss-need-to-know/
2:12
We have also been creating discussion around ‘Topic of the Week.’ This week, we are preparing to head back to school. Visit our Blog and tell us how you prepare!http://blog.autismspeaks.org/2011/08/01/back-to-school/
2:15
Comment From sarah

hi i live in england. i have a 3 and a half year old son with autism. our family is under continues stress, all due to my sons behaviour, he is still not talking propley and has lots of tantrums due to his different understanding. i need help but have nowhere to turn.

2:16
Hi Sarah – you can check out the 100 Day Kit. Be sure to start building a team of professionals that can assist you and your family. We know if can be very stressful, but assembling a team of professionals you can trust and that understand your son is key
2:16
Realize that there are going to be bad days but keep searching and don’t give up.
2:17
It will make all the difference in the world when you find professionals that know your son’s needs
2:18
Comment From Jamie

My daughter has serious texture/gag reflex issues with her mouth. It really limits her food… any advice?

2:18
Hi Jamie – are you working with a professional that can offer you advice? Diet and nutrition is so important and this should be addressed by a professional.
2:19
Here is a link to the Diet and Nutrition section of our Resource Library: http://www.autismspeaks.org/family-services/resource-library/diet-nutrition
2:20
Comment From Jamie

Thanks. Is this something a pediatrician would know, or do I need to have someone specializing in Autism?

2:20
Your pediatrician should be able to refer you to a nutritionist that may have experience in both feeding issues and autism.
2:21
Comment From Jamie

Thanks so much!

2:21
Your welcome!
2:21
Comment From Guest

hi! The only problem my son doesn’t seem to have is eating!! He does, however, have a vocabulary of zero and looks like a third-base coach with his sign language. He’s working with a speech teacher but we seem to be at a stand-still… are there any suggestions or resources that you can recommend to help us develop his speech more?

2:22
Well you must ask, “Why is he at a stand still?” As a parent you always ask why is he not making progress with his speech.
2:23
The discussion should be between you and professionals trying to figure what ways can help drive his speech development. Sometimes it can be can be frustrating, but just be sure to understand what his issues are.
2:24
Comment From Guest

My son is now 19 and he wants to fit in with other young people however, they simply take advantage of him and manipulate him into things that are destructive and hurtful to him. Still, he wants to be with them. How can I get him to see the danger? How do I NOT lose patience? He has always been this way. ANYONE can manipulate him, take his property and coerce him into doing things.

2:24
This is so hard for a parent to watch. You must help him develop self-advocacy skills.
2:25
The Transition Tool Kit covers the importance of self-advocacy skills.
2:26
Comment From Amber

my son is 6 and entering 1st grade. I worry about his aggression. He is currently taking Stratera. Any thoughts or suggestions?

2:27
Hi Amber – it is important that you communicate these feelings with your IEP team. Everyone must be on the same page about addressing his aggression issues
2:27
You should seek to have a behavioral therapist work with your son on this
2:28
The first step is to make sure you communicate your concerns with the IEP team or your professional network. Be sure loop in your pediatrician
2:28
Comment From Jessi

I’m searching for info for adults, all I can find is chidren’s resources

2:28
Hi Jessi! We have plenty of adult resources
2:28
The Transition Tool Kit can be found here :http://www.autismspeaks.org/family-services/tool-kits/transition-tool-kit
2:29
The Autism Speaks Transition Tool Kit was created to serve as a guide to assist families on the journey from adolescence to adulthood.
2:29
Advancing Futures for Adults with Autism(AFAA) is another initiative that Autism Speaks in involved in.
2:30
We are working hard to bring attention and awareness to adults with autism. You can also search our Resource Guide by your state for adult services, here :http://www.autismspeaks.org/community/fsdb/search.php

2:31
We would like to thank you all for participating in our first ‘Office Hours.’ We hope that you found this session helpful. All of the information will be archived so you can return to it whenever you need.

2:31
Please join us again next Wednesday and at 1pm EDT! We look forward to next time

2:32
Remember, you can always contact The Autism Response Team: Call us at 888-AUTISM 2 (288-4762) or email us atfamilyservices@autismspeaks.org.

  1. August 5, 2011 at 7:26 am

    Still hope you make toilet/potty training books suggestions. Did a search and still not able to view resources.

  2. August 5, 2011 at 7:27 am

    Potty training can be easy with the right resource.

  3. Helen Dowsett
    August 14, 2011 at 4:34 pm

    My daughter is a single mother, lives in East Palo Alto, CA and her 3 year old son has just been diagnosed with Autism – he does not speak, has been working with therapists, and needs a donation of an I-Pad to take advantage of the theraputic apps available….please help…I cannot afford to purchase one for him…he is very, very bright but cannot relate to his peers because of his delayed speech and this is starting to cause other problems…the therapists have said he is responding to the I-Pad therapy, but my daughter need to get one for use at home….Thank you for any assistance you can offer…

  4. August 31, 2011 at 1:31 pm

    Regarding the guest asking about help with potty training…..there is a great new “musical sensor”now being used by thousands of parents worlwide,including schools,pre-school,daycare,therapists,etc………..its placed in child’s underwear and plays music when wet. You immediately take child to toilet (its done right away—not half hour later) and by doing this repetitively your child soon learns that when he has this “feeling”he should be at the toilet…….its amazingly simple and very effective….plus,its not expensive!!
    You can read all about it at http://www.tinkletoonz.com under autism section……you’ll be glad you did.

  5. Megan
    January 27, 2012 at 1:35 pm

    On your website an Autism Acceptance Power Point is mentioned under the autism awareness tab. I can’t seem to find the presenation on your site, do you know where I can locate it?

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