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Posts Tagged ‘tool kits’

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.
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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.
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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.

My child is nonverbal. Anything new that might help him communicate better?

October 14, 2011 30 comments

Today’s “Got Questions?” answer comes from speech-language pathologists Cynthia Green, Kameron Beaulieu, and Jill Dolata (left to right in photo) of the Autism Speaks Autism Treatment Network (ATN). Their ATN work at the Oregon Health & Science University’s Child Development and Rehabilitation Center involves individualized parent training using a 24-week program that improves children’s social communication skills.

Today, parents and therapists have many new applications and devices that support a child’s nonverbal communication. First and foremost, however, we strongly recommend an insightful look at how your nonverbal child communicates—in other words, how he sends messages to others.

As you and other parents of children with autism know well, non-verbal does not mean non-communicative. So we always want to start with a good understanding of children’s current communication level before attempting to help them move to the next level.

We regularly use the Communication Matrix, a skills assessment designed to evaluate children’s communication abilities. This tool is unique in measuring all possible communicative behaviors, including: pre-intentional (involuntary actions, including crying when wet or hungry); intentional (actions such as fussing and turning away that are not primarily intended for communication);  unconventional (tugging, crowding to get attention);  conventional communication (head nodding, pointing, etc.); concrete symbols (pantomime, “buzzzzz” to mean “bee”); abstract symbols (single words, manual signs); and language (oral and written word combinations, American Sign Language).

To be successful communicators, children need to see that their actions influence those around them, and they must want to communicate. Sometimes, it’s difficult to determine when nonverbal children are sending intentional messages—particularly when they prefer to play by themselves, engage in self-stimulating behaviors or have difficulty sustaining interactions.

There are several programs designed to initiate positive interactions and increase communication in children with autism, including First Things First, Indirect Language Stimulation, DIR/Floortime, the Hanen program, the Early Start Denver Model, and the Autism Parent Training Program. These programs have many similar components including putting yourself at your child’s eye level, allowing your child to direct activities (following his lead), and imitating your child’s behavior. These strategies help forge a connection of interests between you and your child and can support your child’s desire to communicate.

Once children communicate using concrete or abstract symbols, they may benefit from having access to additional communication tools. It helps to remember that we all use a variety of communication methods, including eye contact, facial expressions, body language, tone of voice and gestures. So you might want to start with a system of gestures or sign.

Other low-tech tools include picture symbols and PECS . Some children seem to respond to tangible symbols such as an actual key for “let’s go outside” or a cup for “I’d like a drink.” From the use of tangibles, families can move to photographs of familiar items and eventually to more abstract symbols. Children at this stage may benefit from Tangible Symbol Systems.

Finally, parents and therapists now have access to a number of technological devices and options, from a tape player with simple buttons for playing prerecorded messages and keyboards for typing messages to sophisticated voice output devices and specialized iPhone/iPad applications.

We hope you’ll have fun exploring these options with your child, ideally under the guidance of a therapist well versed in the best evidence-based practices. And please stay tuned for the fall release of the new Autism Speaks ATN brochure on Visual Supports and ASD. We’ll be posting it for free download on the ATN’s Tools You Can Use webpage.

Readers are urged to use independent judgment and request references when considering any resource associated with diagnosis or treatment of autism or the provision of services related to autism. Autism Speaks does not endorse or claim to have personal knowledge of the abilities of references listed. The resources listed in these pages are not intended as a referral, or endorsement of any resource or as a tool for verifying the credentials, qualifications, or abilities of any organization, product or professional. The contents of this blog are solely the responsibility of the authors and do not necessarily represent the official views of Autism Speaks, the Autism Treatment Network and/or the Autism Intervention Research Network on Physical Health.

Has anyone studied how to help toilet-train children with ASD?

September 23, 2011 45 comments

This week’s answer comes from two of the clinicians who work within our Autism Treatment Network (ATN) and our Health Resources and Services Administration funded Autism Intervention Research Network on Physical Health (AIR-P). Both helped write the Autism Speaks Toileting Toolkit for parents, which will become available this fall.
Psychologist Terry Katz, PhD, of our Denver ATN Center

and

 Psychologist Amanda Santanello, PsyD, of the Kennedy Krieger Institute ATN Center in Baltimore, Maryland.

Around half of all children with an autism spectrum disorder (ASD) learn to use the toilet later than other children. In the Autism Speaks ATN/AIR-P Toileting Tool Kit due out this fall, we talk about why your child might have trouble and provide tips for achieving success.  Here are some important points:

Toileting Challenges with ASD:
* Physical:  Talk with your doctor about medical reasons that may make toileting more difficult for your child.  These can include constipation, and kidney, urinary tract, or bladder problems.
* Language:  Language delay can make it difficult for a child to ask to use the toilet.  Children may need other methods to communicate their needs.
* Fears:  Your child may be afraid of sitting on the toilet or hearing it flush.
* Body cues: Some children with autism have difficulty sensing the “need to go” and may not realize that their clothes are wet or soiled.
* Dressing: Can your child easily pull up and down his or her pants? This may need to be addressed.
* Need for sameness:  Your child may have developed a habitual way of toileting and, so, may resist doing so “your way.”
* Using different toilets:  Your child may have difficulty toileting in new places—such as school vs. home.

Tips for Parents:
Sit for six:  Set a goal for six toilet sits per day.  Start out slow.  First trips may only last 5 seconds.  Encourage boys to sit to urinate until they regularly have bowel movements on the toilet.
Don’t ask, tell:  Take your child to the toilet and tell them it is time to go.  Don’t wait for them to tell you that they need to go.
Stick to a schedule: Take your child to the toilet at the same times each day. Track when they urinate or have bowel movements and use those times if possible. Otherwise plan toilet trips around your usual routine. And think ahead:  Take your child to the toilet before he or she starts an activity that will be difficult to interrupt.
Communicate: Use the same simple words, signs, or pictures during each trip.  Talk with other people who work with your child.  Everyone on the team needs to use the same toileting communication plan.
Reward: Praise your child for trying. Give your child a favorite treat or reward right after going in the toilet.  Be matter-of-fact when accidents happen.
Consider comfort:  Your child needs to feel safe on the toilet, with feet supported for balance. Also address sensory difficulties your child may have with sounds, smells, lights, or textures in the bathroom.

These are just a few of the ideas we discuss in the forthcoming Autism Speaks ATN/AIR-P Toileting Toolkit.

Please remember: Toileting can be difficult for children with an ASD.  One study found that they needed a year and a half of training, on average, to stay dry during the day and more than two years to become bowel trained. So don’t become discouraged. Be consistent. Build routines. Talk with your doctor. And look for the launch of the Autism Speaks ATN/AIR-P Toileting Tool Kit. We’ll keep you posted here in the blog and on the ATN’s Tools You Can Use section of the Autism Speaks science pages.

The Autism Speaks ATN/AIR-P Toileting Tool Kit is the product of on-going activities of the Autism Treatment Network, a funded program of Autism Speaks. It is supported by cooperative agreement UA3 MC 11054 through the U.S. Department of Health and Human Services (HHS), Health Resources and Services Administration (HRSA), and Maternal and Child Health Research Program (MCHB) to the Massachusetts General Hospital. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the MCHB, HRSA, or HHS.

New Blood Work Tool Kit for Families and Practitioners

September 20, 2011 9 comments

Posted by pediatric neuropsychologist Cassandra Newsom, PsyD, director of psychological education for the Treatment and Research Institute for Autism Spectrum Disorders (TRIAD) of Vanderbilt University Medical Center (Nashville, Tennessee), a member of Autism Speaks’ Autism Treatment Network.

On a daily basis, I interact with families and their amazing children with autism spectrum disorders (ASDs). Like my colleagues, I have seen many children with ASDs struggle with the routine blood work associated with their healthcare and participation in autism research programs. Parents, too, often become anxious as the time for blood work draws near. Nurses and phlebotomists, in turn, sometimes struggle ineffectively to communicate with and calm these young patients. Clearly, the resulting stress worsens the discomfort associated with blood work and creates negative associations for all involved in the process.

For these reasons, our team wanted to pool our knowledge about pediatric pain management—particularly techniques proven to help calm children with ASD. We wanted to improve everyone’s experience—that of the child, parents, and healthcare providers. And, so, we set about developing two of this month’s new ATN tool kits: “Take the Work Out of Blood Work: Helping Your Child with ASD” and “Take the Work Out of Blood Work: Helping Your Patient with ASD

To help us, we recruited a talented group of graduate students and post-doctoral fellows from our Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program. Our LEND trainees set out across Vanderbilt’s campus—interviewing pediatric pain specialists, behavioral therapists, hospital-based child life specialists, and experts in developmental disabilities. They observed blood draws in a research clinic for children with developmental disabilities and scoured available research in the pediatric pain literature. Each team member made unique contributions to the final product based on their backgrounds in psychology, medicine, speech-language therapy, and developmental disabilities.

The resulting first draft of the tool kit focused on coping, distraction, and positive behavioral supports. We then solicited feedback from a parent advisory group at the Children’s Hospital Los Angeles, a fellow Autism Treatment Network site. As you would expect from such involved and dedicated parents, they helped us better envision the experience from the child’s perspective and provided insights into how we could encourage compassion and empathy on the part of the medical providers. They also reminded us that parents are the experts when it comes to their own child. So listen!

The team created colorful, engaging visual supports that tap into the strong visual processing abilities shared by many children with ASDs. In “test driving” the tool kits, we saw how these aids improved communication between medical providers, parents, and children. (Parents can even decide how much detail is appropriate for their child by selectively printing those visuals they feel provide enough—but not too much—detail.) Rewards are another important aspect of our guide, one that parents can tailor to their child’s interests. We also considered a child’s sensory needs in designing distraction activities and providing tips on setting up the clinic environment. Finally, both parent and provider tool kits actively promote collaboration between all treatment team members.

Our tool kits are now beginning to find their way into the hands of medical providers, researchers, and parents; and the response thus far has been overwhelmingly positive.

We hope you will download the parents or providers tool kit, give it a try, and share your experiences with us! Do you have tips for insuring successful blood draws or medical visits with your child or patient? Share your tips at atn@autismspeaks.org, and we will incorporate the best into our website at http://kc.vanderbilt.edu/asdbloodwork.

The Autism Speaks ATN/AIR-P Bloodwork Tool kits are the product of on-going activities of the Autism Speaks Autism Treatment Network, a funded program of Autism Speaks. It is supported by cooperative agreement UA3 MC 11054 through the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program to the Massachusetts General Hospital. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the MCHB, HRSA, HHS.

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