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Posts Tagged ‘adult services’

I am a 26 years old with autism and many attention-seeking behaviors. What causes them? I am verbal.

January 13, 2012 6 comments

Today’s “Got Questions?” answer comes from Autism Speaks Chief Science Officer Geri Dawson, PhD

Thanks so much for your question. There are many reasons why a person with autism would engage in many attention seeking behaviors. Perhaps you would like to socially interact and make friends with others, but aren’t quite sure the best way to do this. If you are being ignored by others, this might lead you to repeat your attempts to interact again and again.

If you are engaging in a behavior that is ritualized (exactly the same each time) and repetitive, it might reflect a general tendency to engage in repetitive behaviors, which is a symptom of autism. With appropriate guidance, you can learn more appropriate ways of seeking attention and this will help you develop more satisfying relationships with others. Seeking the help of a psychologist or behavior analyst may be particularly beneficial.

For more information and resources, you can follow these links to our pages on Applied Behavioral Analysis, Adults with Autism and Adult Services.

Got more questions? Send them to GotQuestions@autismspeaks.org, and join Dr. Dawson  for her next “Office Hours” webchat with co-host, Joe Horrigan, MD, Autism Speaks assistant vice president and head of medical research (first Thursday of every month at 3 pm Eastern)

What does an organic Santa Cruz microbrewery have in common with a national big-box chain store like Costco?

November 28, 2011 1 comment

Kate Bemesderfer is the Lead Instructor, at the Coryell Autism Center, Santa Cruz, CA

Santa Cruz Mountain Brewing (SCMB) has earned a solid and well-deserved reputation for being more than just a purveyor of tasty organic microbrews and sustainable brewing practices. Brewery owners Chad Brill and Emily Thomas and their talented staff play a major role in Santa Cruz, California community-building. They have high standards, open hearts, and a creative, collaborative approach to just about everything they do. So it is fitting that, on top of everything else they do, SCMB is proving itself to be a valuable ally to the disability community by partnering with Coryell Autism Center to provide job opportunities for our students with autism.

When we approached Chad & Emily about offering an internship to Hunter, they took him in and treated him like one of their own, giving him real work and real compensation from the beginning.  No one at SCMB had much familiarity with autism or developmental disabilities, and the learning curve has at times been sharp.  Like anyone, Hunter has the occasional bad day at work, which means that his coworkers have seen him at his most difficult.  That’s why it’s been so impressive to see the staff of SCMB continue to accept and encourage Hunter to be his best.  It turns out that he has the same effect on them.  As Nicole Beatie, who handles Sales & Distribution for SCMB, puts it, “He’s not really different from any of us. He just needs a little more guidance than some, and probably less than others.  Everyone here has been patient and understanding with him, and that has made me feel good about the other folks I work with, too.”

After six months on the job, Hunter is a valued part of the SCMB team, and it’s a team that Hunter likes being on.  Every bottle of beer the brewery produces is hand-labeled by Hunter, who has learned not only to handle the labeling by himself, but to keep track of the inventory, and to set up the tap room and patio in time for opening. He works at the same rate as anyone else (sometimes faster).  He troubleshoots when supplies are missing, mislaid, or malfunctioning.  He keeps track of his work, noticing and correcting errors.  And he interacts both socially and professionally with the brewery staff, becoming an active part of his own community.  With Hunter’s help, the brewery has been getting bigger.  As the brewery continues to expand, so, too, do Hunter’s opportunities.  It’s a lot of work to keep up with the growing demand, so when the opportunity to increase distribution came to the brewery, Chad and Emily came to Hunter.

Not only is SCMB gearing up to open a second pub in Felton, but they’ve recently contracted with Costco—another of Hunter’s favorite places—to create 6-pack gift boxes of their most popular brews. Once the beer is in the bottles and the bottles are in the warehouse, the job of filling the Costco order falls primarily to Hunter.  SCMB has moved their post-production and storage from the small garage where Hunter started to a much larger warehouse a little farther down the road, so he rides his bike to work instead of walking.  Now, labeling bottles is just the first step in a process that involves taping together gift boxes, filling them with the bottles, sealing them with a hot glue gun, and organizing the finished product on a pallet, all while maintaining a retail-worthy aesthetic.  Hunter takes pride in getting it done right and making it look good.  It’s hard work, but it pays off—literally.  Hunter receives both a WorkAbility paycheck and trade from the brewery.  His favorite part of his shift comes at the end, when he returns to the pub for a nice frosty pint…of root beer!

For more information about Coryell Autism Center visit: www.CoryellAutismCenter.org

Family Services Offices Hours – 8/10/11

August 10, 2011 Leave a comment

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:

12:54
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.
12:54
The transition from summer back to school can be tough for everyone, especially for parents of kids with autism? Do you have questions about how to smooth the transition back to school? What can you do to prepare over the next few weeks?
12:58
Comment From Marilyn nunez

What is considered an appropriate education plan for a 6 year old boy diagnosed with pdd nos and adhd combined type? He did veru well in kindergarten almost all E’s on his report card terranova scores

12:59
Hi Marilyn – IDEA provides a free public appropriate education program for children with special needs. Each child is entitled to a program that is tailored to their special needs and a placement that allows them to make reasonable progress with no cost to the family
1:00
A plan for your 6 year-old will depend on what his needs are
1:01
That is wonderful that he received all E’s on his report card! We are glad he is doing well, just keep understanding what his needs are so he can keep making progress
1:01
Comment From Angela Grullon

My son was just diagnosed with autism, he will be attending school for the first time in september. How can i make his transitioning easier since he will be going 5 days a week from 8 to 2. He just turned 3 years old.

1:01
Hi Angela
1:02
This can be a very difficult time of adjustment for your son. It is great that you are trying to make the transition easier for your son. There are a few things you can do to prepare
1:03

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.
1:04
Here are some tips for younger students
1:05
There is a wonderful Paula Kluth article that has great suggestions for parents getting ready for school
1:05
Comment From Angela

My daughter is an 8 year old ppd nos with ADD – high functioning autism. She is in a regular 3rd grade class. We had quite a few issues with behavior and working with others last school year. The doctor keeps bringing up the topic of meds, but right now im against that. Do you know of any resources in memphis, tn? I work so hard to find her things she can fit in. Any suggestions on what I can keep doing with the school to make sure my child receives a quality education?

1:06
Hi Angela, how are you?
1:06
If your child was just diagnosed with autism please check out our 100 Day Kit
1:06
Oops sorry! We got ahead of ourselves
1:07
Here is our Resource Guide for Tennesseehttp://www.autismspeaks.org/community/fsdb/state.php?sid=21
1:08
It is very important to work with the IEP Team if it is necessary to understand your child’s behaviors to request a behavioral assessment
1:08
Hi Angela Grullon – here is our 100 Day Kit
1:09
The Autism Speaks 100 Day Kit and the Asperger Syndrome and High Functioning Autism Tool Kit were 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.
1:10
Comment From Katie

My 14 year-old sister with Aspergers and ADHD will be starting public high school next week. She has not been in school since December (homeschooled) or public school in 2 years (private, homebound, homeschool). How can we help her make a sucessful transition to a very different environment?

1:10
Hi Katie! It is terrific that you are thinking ahead – preparing for a successful transition will make all the difference
1:11
There are a lot of great articles that can act as a resource for you
1:11
Comment From Angela Grullon

Another question. He has this repetitive behavior where he runs back and forth throughout the day, just running.

1:12
Hi Again! We suggest that you meet with your IEP team and request a behavioral assessment so that the team will have a better understanding of the behaviors and how to intervene. It is all in the consistency of implementing the behavior plan!
1:13
Hi Katie – you can also look to our Transition Tool Kit
1:13
The Autism Speaks Transition Tool Kit was created to serve as a guide to assist families on the journey from adolescence to adulthood.
1:14
You can download this kit as well for FREE!
1:14
Comment From Gabriel

Hello

1:14
Comment From Gabriel

I have a 25 years old brother who is nothing productive.

1:14
Hi Gabriel
1:14
You may also want to check out the Transition Tool Kit
1:15
We are working with on Adult Services because there is such a need. Please also visit Advancing Futures for Adults with Autism (AFAA)
1:16
We are working to bring more focus on this topic as more children with autism are becoming adults. We are looking for a program that focuses on life skills and independent living would be a plus
1:17
Also, check with the Department of Rehabilitation in your community. They should have programs for adults with autism
1:18
Comment From Dena

How can i help my 7 year old son, with his emotions. i know he is going to cry those first few days back to school. He will be in mainstream 1st grade. Even though his has the Autism diagnosis, they say he no longer needs to be in the ASD classroom, nor need a para pro. I’m a little nervous about this.

1:18
Hi Dena
1:18
Even though your son is not in a special needs classroom he has a right to special needs services.
1:19
Under IDEA parents are a vital part of the IEP process and your input should be taken very seriously, even though your child is not in an autism specific classroom. You have the right to request your child has certain services provided
1:20
I suggest you read IDEA and understand your rights and the process that is involved in working with your school district
1:20
You should also visit our page, ‘Your Child’s Rights’ to help with this matter. http://www.autismspeaks.org/what-autism/your-childs-rights
1:20
Comment From Gabriel

The Department of Rehabilation said he is low-level skill

1:21
Gabriel don’t give up hope
1:21
Continue to search your community for the rights that your brother is entitled to. You are doing the right thing and I know your brother will appreciate all of the support
1:22
Having a family member with autism is a lifelong pursuit of finding the best possible fit. Hang in there – you are doing a great job!
1:23
Comment From Guest

how can i make the transition to kinder for my son easy? he use to have an assistant and now he won’t. plus he was not accepted for summer school, so i think it is going to be hard on him to go to school full day.

1:24
If you check our our Community Connections you will be able to find some great articles from professionals on how to make this transition easier. http://www.autismspeaks.org/family-services/community-connections/back-school-its-transition-time
1:24
A suggestion that has worked well for parents, is to meet with the teacher prior to the start of school, to introduce your child. Put together some documents that share your child’s strengths and some successes they have had in the classroom
1:25
It is also helpful to offer some books on autism. Your child’s teacher may not know the latest autism teaching techniques and they may find it helpful
1:26
Paula Kluth’s book, “You’re Going to Love This Kid!: Teaching Children with Autism in the Inclusive Classroom” is a great resource
1:28
Stay positive – back to school can be tough for everyone. But is a great time to be hopeful and optimistic about the year to come!
1:28
Comment From bobbylee

when my son comes home with home work what might take another kid 30mins is taking my son 2 hrs… how can i address this with his teachers with out looking like i want them to take “pity on him”?

1:28
Hi Bobbylee
1:29
The best thing you can do is open lines of communication with your son’s teacher
1:29
Start with a brief meeting discussing the issue of homework. See if there are small adjustments that can be made. Hopefully the teacher will be a good listener and will work with you on addressing the fact that homework is taking longer than it should
1:30
Once the teacher realizes that you are here to help and want to address these issues, many of these problems become easier to solve
1:31
Comment From kendra

I am having a problem with my daughter the teachers talked me into having her go to a different school than the one i had chosen saying it would be a better fit for her. now they are telling me because they have no room they are going to have to send her to this other school (the school i did niot want her to go to at all) because of the comments madre from other people in my asd parent group please help

1:31
Hi Kendra
1:31
As a parent – you are the person that knows your child the best.
1:32
You have every right to bring these issues to the IEP team
1:32
You are a vital part of the IEP process and you cannot be brushed off.
1:33
If you are not happy with the decisions that have been made you may have to consult with an advocate or an attorney. In our Resource Guide we have a directory of advocates and attorneys in your area
1:34
You can also refer to our Special Education and Advocacy Community Connections
1:35
Comment From Dixie

Hi there, is the school tool kit specific to the States, I am writing from Canada and am hoping for something like this for my daughters school

1:35
Hi Dixie – we have an Autism Speaks Canada
1:35
You can contact them here -http://www.autismspeaks.ca/contact-us
1:37
Here is a link to their Family Services Database -http://www.autismspeaks.ca/family-services-database/reset
1:37
Comment From vanessa

is there something that i can do to help my son understand that not all the toys he sees he can have? he is autistic troughs tam trams everywhere.

1:38
Hi Vanessa – you have to figure out what the triggers are for the tantrums
1:38
I suggest your start by using social stories to prepare your child for a visit on a shopping trip
1:38
It is all in the preparation. You can get photos of the store and items that he can have and can’t have so he will better know what to expect
1:40
‘The New Social Story Book’ by Carol Gray would be a great resource for you to use
1:42
Comment From Joyce

We are at the point with are Grandson who is non-verbal, looking into the ipad to communicate with each other. Any recommendations on where and how to get one free or cheap?

1:42
Hi Joyce
1:43
There are sites that do exist that give away these iPads, but as you can imagine, they are in very high demand. iPads are a proven resource as a communication tool for people with autism. You can check here http://itaalk.org/
1:44
Put your name on every list and don’t lose hope. We also produced a ‘Technology and Autism’ that you may find helpful
1:44
Comment From eleanor

i have a 7 yr daughter non verbal and she has had a paro pro for 4 yrs and now they want to change her and give her a aid that knows nothing about autisum very nervice

1:45
Hi Eleanor – we would recommend offering books and resources about autism. Inform the new aid about your child’s unique strengths.
1:46
You have to communicate with your aid and keep them updated and over time you should see progress
1:46
Here are some links from our School Community Toolkit that will be helpful
1:47
With training and support, this aid may turn out to be a great fit with your child. Stay positive!
1:48
Comment From Dixie

My daughter is in senior kindergarten, she is neither high or low functioning, she is just in the middle. She has lost her educational assistant because of this. I am not allowed to send professionals in to consult with the classroom helper for confidentiality reasons. Everything is a hurdle. She is not recogized by her school board as having autism, even though she has a diagnosis. She has no IEP. She is slipping through the cracks and I feel I cannot properly advocate for her. Any suggestions, or more important, what exactly are her rights?

1:48
Hi Dixie – we recommend meeting with an advocate or attorney.
1:49
You can search the Resource Guide by your state to find a legal representative or advocate
1:50
Comment From Marilyn nunez

Any resources out there for advocating on school issues?

1:50
Hi Marilyn, you can just check the links above. Thanks so much for joining!
1:53
When asked, “How can parents work with their teachers?’ One of the best responses I have heard was from Paula Kluth
1:53
She suggests creating a short portfolio, pamphlet, or even a video for the teach. You want to give the teachers some idea on how to work with the new student.
1:54
Again, the idea is to give teachers a well-rounded view of your child.
1:54
You can find more suggestions from Paula atwww.paulakluth.com
1:55
Comment From Michelle

Is it possible to overload our child with services?

1:55
Hi Michelle – the important thing is that you know your child best. You must understand what he or she’s needs are.
1:56
Some kids need less, some need more, but as a parents advocate it is your responsibility to keep what is best for the child in mind.
1:56
Your child is lucky to have you as a parent who can monitor their response to services
1:57
As a parent you have an opportunity to play a vital row in your child’s life.
1:57
We would like to invite you all to subscribe to our ‘Community Connections’ newsletter
1:58
This month we will be focusing on ‘Back to School’
1:58
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.
1:59
Thank you all so much for coming to Office Hours. Please join us again next Wednesday. Keep us posted on your progress and remember to stay positive as you embark on the new school year!

Autism Speaks Family Services Office Hours 8/3/11

August 4, 2011 5 comments

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

“Honey, an ABC News Film Crew is Coming on Monday …”

August 18, 2010 14 comments

This post is written by Liz Bell, mother of Tyler Bell, who was recently featured in an ABC World News Today segment on preparing adolescents with autism for adulthood. Liz is married to Peter Bell, Autism Speaks Executive Vice President of Programs and Services.  They have two other children, Derek and Avery. Liz is a member of the Autism Speaks Family Services Committee and was the primary author of the School Community Tool Kit. In addition, she serves on the Parent Advisory Committee for the Autism Speaks Transition Tool Kit which is under development and scheduled to be launched this fall. Liz is also a representative on the New Jersey Governor’s Council for Medical Research and Treatment for Autism.

Great, we might share the intense teaching and planning required in making the future of a young man with autism a little less uncertain. We can highlight the variable needs of this growing tide of soon-to-be adults with autism.

But “yikes!” How will my 17-year-old son behave in front of complete strangers with a camera in his face all day? What if this complicated message gets garbled, highlighting the challenges but not the gifts, the needs but not the opportunities?

Thankfully, Tyler greeted that camera with a grin on his face, and followed the flow of a familiar daily schedule in his hard working, innocent way. The ABC team turned eight hours of filming into a three-minute segment that helps to profile the needs of young people like Tyler, and hopefully initiates consideration of their place in the world. Now online, the story has sparked a conversation, which is a great thing.

But we need to keep talking. Some online comments outline the variable needs of the autism population – from college graduates who have trouble keeping a job to complex children with no language and few functional skills. We need options for all individuals on this broad spectrum. Other comments offer traditional ‘solutions.’ He can get Medicaid, sign up for get SSI, set up a special needs trust. True, these programs may provide some money, until it runs out, but how do you maximize its ability to provide a meaningful life, to establish supports that will take over once we are gone? You can place him in a sheltered workshop or a group home. Perhaps an option for the handful of individuals for whom there is space and funding, but this old model of isolated care won’t accommodate all of our kids…or be what they want. And that is the part of the conversation that we really need to move forward. How do we create the systems, opportunities and community mindset that will allow all individuals with autism the right to be safe, but also engaged, fulfilled and happy?

During that day of filming, while the rest of us were self conscious, for Tyler the camera was superfluous. But the cameraman was not, quickly noticing that, despite how hard it clearly is for Tyler to learn, he exhibits pride in accomplishment. For him, competence breeds confidence, so we teach him skills that make him feel useful and valued. We strive to fulfill his needs for humor, exercise, beauty, and joy. We want to develop a future that will allow Tyler to grow, not just to be taken care of, and to flourish.

Visioning this is a lot of responsibility for a parent, so we employed group brainstorming in a MAPS session, expertly facilitated by Dave Hasbury of Neighbours, Inc., where we explored Tyler’s strengths, likes, and possible opportunities, to keep us working in what we hope to be the right direction. We are heartened by a team of people who now have a shared perspective of where he might go.

But it is still mostly up to us to make it happen. We learn as we go. We build on strengths and we layer on, tiny step by tiny step, experiences and skills that help to create more independence, more joy. We immerse Tyler in the world and build a community that better understands him. We look to what motivates Tyler, and find ways to use his gifts to provide meaningful contributions to society and a sense of belonging. We reach out for help.

Last year, we asked the friendly owners of our local Rita’s Water Ice store if Tyler might have a volunteer job. We explained that job sampling is a big factor in strategizing for Tyler’s future. Since they had already opened their hearts to Tyler as a frequent customer, they gave him a Rita’s hat and the chance for us to work with him, as he worked for them. This year, it’s a paid job – just an hour or so a week, but an opportunity to punch a clock, have a boss and be ‘professional.’ Does he do the same work as the other teenagers there? No, but they value his smile, the fact that he joins them in dancing when they are so moved, and that he doesn’t pull out his phone to text in the middle of his shift. Yes, these are gifts, as is the perspective of Tyler’s Rita’s bosses, who recognize and celebrate his contributions.

And so Tyler earns a paycheck, the most important predictor of paid work after graduation. But he doesn’t work for that – it’s his favorite Cotton Candy water ice that compensates him for a job well done. And his pride.

After the filming, the rest of our family decided that we aren’t cut out for reality TV – life is complicated enough without having to turn off a mic to use the bathroom. But we would like to continue to be part of this conversation, in visioning meaningful lives for all families living with autism. After all, our children have a right to an amazing future.

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The End of the IEP and the Beginning of “Reasonable Accommodations”

July 25, 2010 15 comments

This guest post is by Autism Speaks staffer Kerry Magro.  Kerry, an adult who has autism, is a rising senior at Seton Hall University, majoring in Sports Management. He started an Autism Speaks U Chapter: Student Disability Awareness on campus to help spread awareness and raise funds for those affected by autism. Autism Speaks U is a program designed for college students who host awareness, advocacy and fundraising events. It is an exciting and collaborative way for students to raise funds and awareness for Autism Speaks, while supporting their local autism communities.

In June 2007, I graduated from high school. It was an amazing time for me. The majority of my classmates and I were off to great new beginnings. My new beginning began at Seton Hall University. “This is going to be great!” I thought to myself on many occasions before the first day of classes.

Before this day happened however all new incoming freshman had to attend a summer “Orientation Period.” During this period we would have the chance to spend the night in the freshman dorms, receive our laptops and also get to meet several faculty members at the school. In addition to this, I had one additional separate meeting that most of the other freshman didn’t – an accommodation meeting with The Director of Disability Support Services at SHU.  This is when the ball dropped for me.

During the meeting I learned many intriguing and frightening things about how college was going to be a huge difference from high school; the main difference for me was going to be “The IEP.” When I asked what the difference would be, I was told the difference was I would not have one. I can’t believe I was that oblivious that this was going to happen.  Later, I learned that under the Individuals with Disabilities Education Act (IDEA) the IEP only exists K-12th grade. At the college door you get a Section 504 accommodations plan.

In college, you only receive “reasonable accommodations” to help make the classes accessible to those specific students with disabilities. The bottom line: there is no plan for you. The only way to receive what you need is by being independent and advocating for your needs. But what does anyone need? If you are a freshman and have autism how do you explain what you need?

At times, this led to many distractions that never would have occurred when I was younger. Sometimes I thought it was unfair. I had to advocate for my own single room in the dorms due to my social complications, extended time on tests for my reading comprehension, a note taker for my classes due to my lack of motor skills and many other complications. For someone trying to fit in it seemed like it was designed to make you stand out like a sore thumb. It even seemed as if as soon as I accomplished one of these tasks, the next semester would begin and it would start all over again for my new courses which required different accommodations.

When you add this to managing a full course load, trying to socialize with your  fellow peers, along with being involved in extra-curricular activities, it can sometimes feels like you are drowning. I mean, “reasonable accommodations” are supposed to help level the playing field, not hinder you in any way. There isn’t a “reasonable accommodation” for that.

Although getting accommodations sometimes was daunting, I was still able to get by and will be going through the same process again with Disability Support Services come this September in my senior year at Seton Hall. For several semesters now I sit up front and tape most of my classes and download the recordings onto my computer, instead of utilizing a note taker. Never would have thought of that freshman year. For those reading who are younger and not yet in college, my advice is to sit in on as many IEP meetings as you can. Learn and ask as many questions as possible.  The letters after your diagnosis don’t tell you if you need extended time or a note taker, but knowing if you are a visual or auditory learner may. Within this I would also strongly consider letting your parents be involved in some of your early decision making, especially when it includes freshman year accommodations. Independence is not grown over night and we all need that added voice sometimes to make sure we are level-headed and knowing exactly what we are getting ourselves into.

As many say early intervention is the key once first diagnosed, early intervention for those on the spectrum in college (and high school for that matter as well) is the key to ultimate success. What I’ve noticed about autism over the years is that it’s not a weakness unless you let it become one. Don’t let it hinder you. Let the advantages of who you are and what you have to offer be your ability to make it at the college level; just always know what your weaknesses are so you can be ready for whatever is to come next!

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Kudos to Ryan Hemphill and Best Buy

June 25, 2010 7 comments

As a society, we have an obligation to secure a brighter future for individuals with autism spectrum disorders. By taking action now, we can ensure that adults with autism break free of the all-too-common status of “dependency” and become engaged, involved and ideally, tax-paying, members of their communities. It is time to develop and drive policies that provide for life-long living and learning with autism. Last year, in response to this urgent need, Autism Speaks assisted in the formation of Advancing Futures for Adults with Autism (AFAA), a national consortium seeking to create meaningful futures for adults with autism that include homes, jobs, recreation, friends and supportive communities.

We love to share success stories of adults who have autism and we also look to recognize socially responsible companies who help them on their path to independence. The video below highlights Ryan, an adult with Asperger Syndrome and his positive experience working at Best Buy.

We also would like to recognize Best Buy for its efforts in hiring adults with autism and developing their careers. Best Buy has a new program called FACE – Facing Autism in a Caring Environment. FACE is a Focused Involvement Network (FIN) at Best Buy. The mission of FACE is to build a community of Best Buy employees that will promote awareness of autism spectrum disorders (ASD) and support their families through networking, the sharing of resources and providing encouragement. The campaign was launched this month at Best Buy, and Ryan was a big part of the launch at the Best Buy headquarters in Minneapolis.

Join us in congratulating Ryan on his success (and the new car he bought with his earnings!) and in thanking Best Buy for its efforts to employ adults with autism to promote their independence.

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