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Posts Tagged ‘Autism Speaks’

20 Years of Autism: A Mother and Son Perspective

March 5, 2012 36 comments

This blog post is by Kerry Magro. recently started a new video blog called “My Autism My Voice,” where he discusses a variety of topics. If you would like to contact him directly about questions/comments related to this post he can be reached at kerry.magro@autismspeaks.org or through his Facebook page here.

On January 15th of this year I turned 24. To be honest this milestone really didn’t mean much to me besides knowing that in a year I could rent a car for the very first time. 2 weeks later I received an email from a parent in regards to helping her grandson who has PDD-NOS. Maybe more than any of the other emails I had received before, this question was very detailed asking for several questions regarding topics such as an early diagnosis, therapies, early childhood, how to approach the diagnosis, etc. Even though I’ve helped answer questions before I asked my mom to help assist me in answering her questions.

What I would receive back from my mom was something I didn’t even realize and that was it had been 20 years since I was first diagnosed at 4. 20 years of autism. It made me realize how much time had actually flew by and of how I got to where I am today. I thought about the milestones I’ve  hit: playing for my high school basketball team, being student council president, having a girlfriend, graduating college, becoming a motivational speaker, writing a book, and maybe most importantly…having a voice to be heard. Time slowed down for a bit.

My Mom Wrote to The Woman:

“Looking at Kerry today I wish 20 years ago someone had offered me inspiration and hope that he represents and I can see why anyone would ask the question of how he got to where he is today. His PDD-NOS was severe. Although we did not know what PDD NOS was they mentioned that some children were institutionalized and that’s all I heard.
Kerry was our delightful only child reaching most development (height, weight) milestones except speech until he was 2.5 years old. At 2.5 he started to show extreme signs of sensory integration dysfunction where he was afraid of a wide variety of sensory issues. Wind, rain, water, noises loud and soft were major issues. There was a time when we could not bathe him – uneven surfaces such as sand and or swings where he couldn’t feel the bottom below him were a problem. He was asked to leave two different pre schools because they couldn’t handle him the later he preferred isolation would not play or participate with other children and had delayed speech, limited pretend play, echophilia, twirling, extreme difficulty with transitions and tantrums. He had fine and gross motor delays. When I dropped him in the morning he would scream he didn’t want to go in and when I picked him up in the afternoon I would have to drag him screaming because he didn’t want to leave. Once home with a caregiver he would scream at the top of the stairs “Go away”.
Kerry was diagnosed first by Hackensack Hospital and then by Doctor Margaret Hertzig, The Director of Pediatric Psychiatry at Cornell. Doctor Hertzig is a world-renowned expert in Autistic and Autism Spectrum Disorders. She saw him as he grew marking improvement she saw. Interestingly to us she reconfirmed Kerry’s diagnosis last year for his accommodations for GRE’s as he started graduate school.
The Kerry you see today is not the Kerry I grew up with.
As to care Kerry did not come together for many years when he was diagnosed. Finally we tried to get him into a pre school handicapped class. There was a delay in that so we began Occupational therapy (OT) at home with a Pediatric OT working on the SID issues as well as speech. OT continued at home till he was 7 as well as in school where he was in a multi-handicapped class receiving speech, and OT. At 7 he began intensive physical, OT therapy at Hackensack Hospital where he did a lot of vestibular planning issues. He is seen privately to this day for OT/PT as needed by a local PT.
One of the major things that worked for us was sports. Although he did not want to be around people I got him involved in pee-wee bowling and then sent him to a JCC summer camp for children with neurological issues. The camp was wonderful in that they did a different activity every 40 minutes and the forced transitions helped condition him a lot. The vestibular planning therapy also help a lot.
Kerry started to respond to recognition, praise, rewards and I ran with that, we have a million great job stickers; magnets, trophies and I developed my own token economy barter system with him. If he would try something three times he would get a predetermined prize (seeing a movie, an action figure, a game) that we agreed on. If after the third time he did not want to do something I would agree to let him drop it. Since he wanted to do nothing three times sometimes seemed interminable for both of us but I kept to it and found a kid who loves bowling, played soccer, basketball etc. T- ball was rougher with the co-ordination issues and was one that got dropped but not till the third season.
All this time, speech, physical and occupational therapies continued, we also took lessons piano at the house to help him out.”

To have this written out for me to read left me with so many emotions. Some of the stuff was so long ago I had no recollection of it whatsoever. What stayed with me though was the passion and the love that came with this letter. No matter how many struggles were presented, my parents were always willing to go the extra step to help me and today I want to live by that example to help others.

My parents are strong. They are saints. Without them I have no idea where I am 5 years down the line let alone 20. I know I still have a long way to go but one thing I know is for the next 20 years that I have autism I’m not going to be sitting down. I’m going to fight, I’m going to serve, I’m going to commit, I’m going to conquer and I’m going to communicate for the better day for us now and for the future. Please join me by having your perspectives of autism, both for you and your family heard in the comments section below. Thank you.


2012 Walk Season Kicks Off with a Bang

Over the weekend, the great state of Florida kicked off our Walk season in Palm Beach and Miami. Both walks were a success drawing big crowds and raising funds for Autism Speaks’ work funding innovative autism research and family services, to increase awareness about the growing autism health crisis, and advocate for the needs of individuals with autism.

In Miami an estimated 25,000 plus walkers participating and are expected to raise over $700,000!  Under the leadership of our Walk Chair Manny Gaunaurd, as well as Board Chair Al Lopez, Miami once again set records for its Walk! Corporate sponsors Toys “R” Us,  IMUSA (who had especially designed an Autism Speaks frying pan), Sardanos Supermarket, Johnny Rockets, FedEx, DHL, BDO, South Florida Ford, and many, many more were on hand to lead the celebration. Particular thanks are also in order to several other top corporations including Total Bank, and our good friends from Buffalo Wild Wings.The day was highlighted by a young woman with autism who serenading the crowd with songs of hope and joy.  We were also delighted to be presented with the first ever key to the city of Doral by Mayor Carlos Gimenez.

Palm Beach welcomed more than 7,000 people took part in the Walk fun raising over $344,000! Walk Corporate Chair Denise Negron, Chair Laura Pincus and Co-chairs Amy Schwartz and Debra Rosenfeld along with their amazing Walk Committee and 200+ volunteers made sure that the morning went off without a hitch. Unfortunately, the one thing out of their control was the weather. In the interest of public safety, the actual walking portion of the day was canceled due to severe storms and high winds, but the activities surrounding the Walk, though, were enjoyed by the thousands of walkers who came out for the event! The event was emceed by NBC News Channel 5’s West Palm Beach Anchor, Michael Williams. Honorary Chairs Suzanne and Bob Wright, co-founders of Autism Speaks, addressed the crowd with moving speeches, motivating everyone to Light It Up Blue on April 2 and demanding action for the passage of the Achieving Better Life Experience Act (A.B.L.E – legislation allowing families raising children with disabilities to save tax-free for their future needs) in Congress.

Here’s some fun tweets!

@Med_Claims: Did you have fun at the @autismspeaks walk in Palm Beach? We did! Send us your pictures! #Autism

@JasonMizrach#GOTeamJonathan! RT @sexilady143: We had such an amazing time walking at the @autismspeaks lockerz.com/s/189573096

@WajimaAlvaradoMar: Drenched but it was completely worth it. See you all next year @ItStartsWLove for @autismspeaks 2013instagr.am/p/HwnUjTgYVt/

@5K4AutismAware: Congrats and thanks to all taking part in Walk Now for @autismspeaks in Miami today.

@SincerelyElaine: Great walk for a good cause. @autismspeaks #TeamBrayden

Check out some of these awesome photos from both events!

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Autism in the News – 03.05.12

March 5, 2012 1 comment

‘Ground breaking’ new ministry caters to families with autistic children (Observer & Eccentric)
Karen and Paul Schmid know what it’s like to watch an autistic son struggle with sitting through a mass and they wonder about other families who avoid church altogether, because it’s just too hard. Read more. 

Toys R Us Helps Shine a Light for Autism Raise Awareness (BSC Kids)
Autism Speaks is an advocacy for autism and Toy “R” Us is having a fundraiser in its stores for two months for Autism Speaks. Donations will be collected at all Toys “R” Us , Babies “R” Us stores and online at Toys “R” Us.com from Thursday, March 1 through Monday, April 30 2012. Read more. 

‘Army’ helping autistic Plainfield boy afford dog (Plainfield, Conn.)
Alexander’s Army is on the march and won’t rest until it raises the $10,000 needed to buy a specially trained dog to help its young namesake cope with autism. Read more.

£1m donation to help Scottish scientists find autism cure (Scotland)
An IT tycoon turned philanthropist has donated £1 million to the University of Edinburgh to help scientists find a cure for autism. Read more. 

Autism walk’s cancellation doesn’t dampen support at West Palm Beach fund-raiser (West Palm Beach, Fla.)
Gusty winds and fast-moving thunderstorms this morning forced organizers for Palm Beach Walk Now for Autism to cancel the event’s 3-mile walk along Flagler Drive, but the bad weather didn’t dampen the spirits of the 5,000 people who showed up to help raise money and awareness for the developmental disorder. Read more.

Autism Speaks’ daily blog “Autism in the News” is a mix of top news stories of the day. Autism Speaks does not vet the stories and the views contained therein do not necessarily reflect Autism Speaks beliefs or point of view.

Autism Speaks to Host Workshop at APBA Convention

Time is running out to register for the Association of Professional Behavior Analysts (APBA) 2nd Annual Convention in Tampa on April 12-14, which will offer informative sessions for both ABA practitioners and consumers. Autism Speaks is hosting an all-day pre-convention workshop on April 12, entitled “Implementation and Enforcement of Autism Insurance Reform.”

The workshop presenters will include Lorri Unumb, Esq., vice president of state government affairs and Judith Ursitti, director of state government affairs, along with Bryan Davey of ACCEL, Billy Edwards of Behavioral Innovations, Gina Green with APBA, and Dan Unumb, with South Carolina Legal Services.

To learn more about the Autism Speaks workshop, go here. To learn more about the APBA conference, go here. Early registration, including discounted hotel rates, ends March 23!

Launching ‘Move the Needle’ – A conference to advance early detection and intervention

March 5, 2012 3 comments

Posted by Autism Speaks Chief Science Officer Geri Dawson, Ph.D.

I want to share with you the excitement I felt at this week’s strategic planning meeting for our new Move the Needle Initiative. Autism Speaks brought together experts in the field of early detection and intervention for autism spectrum disorder (ASD), with representatives of federal agencies such as the U.S. Health Resources and Services Administration, the Centers for Disease Control and Prevention and the National Institutes of Health to create a national plan for lowering the age of diagnosis for ASD and improve access to high-quality early intervention services for all children with autism.

While researchers have made great progress in developing screening and diagnostic tools, the average age of diagnosis remains stubbornly close to 5 years, even higher among some ethnic minorities. Even after their children are diagnosed, many families lack access to the best early intervention therapies.

Our meeting was a great opportunity for exchanging ideas between disciplines. We heard from family members, pediatricians, policy makers, clinicians and researchers who are evaluating the best ways to put effective strategies and tools into pediatrician offices and the broader community. Representatives from all part of Autism Speaks attended to help us identify ways to harness our powers together to “Move the Needle.”

Experts from outside of autism, including one from the field of breast cancer, shared their knowledge of effective ways to improve early detection and access to services. On the first day of the meeting, we heard about the latest findings on screening, diagnosis, early interventions, access to services in underserved communities and innovative technologies that have the potential to improve access among underserved children and their families.

On day two, we split into working groups to develop solutions to the barriers that have interfered with the delivery of earlier diagnosis and treatment in our communities. This included taking the first steps toward creating a new agenda for collaboration between public and private organizations. We brainstormed ideas on how this could be done as soon as possible by building on the tremendous progress of recent years.

Though I have only begun to pull together our thoughts and ideas, I want to share a few important issues that floated to the top of the conversation:

  • Family empowerment was a common theme. Studies clearly show that greater engagement and empowerment on the part of families decreases parental stress and increases satisfaction with services. Likewise, we know that children who have the best outcomes tend to be those whose parents are actively engaged in treatment. We discussed several strategies to  empower families.
  • We explored a concept we call task shifting, to help address service shortages in many communities. We recognize that, through training, we can tap professionals such as nurses, “birth-to-three” service providers and community volunteers to provide services such as screening and family follow up. This approach can provide families with more professionally delivered services than, say, the typical pediatrician can offer.
  • We agreed that we must harness the potential of technology. Smart phones, iPads and video conferencing are all ready to be developed as tools for improving access to services – especially important for underserved populations such as children in rural areas.
  • Recognizing that pediatricians play a central role in autism screening, we discussed many ideas for enhancing pediatrician awareness and skills, including their ability to connect families with the services they need.  

These are just a few ideas that came out of this inspiring meeting. It provided a great start to realizing our long-term vision of creating a national agenda through private-public partnerships that focus our investments in research and services in ways that will lower the age of diagnosis and improve access to quality early interventions for all children.

Your feedback means the world to us. Please leave a comment and send us an email to ScienceChat@autismspeaks.org.

The 11th Annual Walk Now for Autism Speaks Palm Beach Draws Big Crowd for Autism Awareness in Florida

March 4, 2012 2 comments

On Sunday, March 4, 2012 – More than 7,000 people, including individuals with autism, their families and friends attended the Walk Now for Autism Speaks Palm Beach at City Commons in Downtown West Palm Beach, Florida. The Walk has raised over $344,000 so far, all of which will support Autism Speaks’ work, both locally and nationally fund innovative autism research and family services, to increase awareness about the growing autism health crisis, and advocate for the needs of individuals with autism and their families in Palm Beach and beyond.

The event was emceed by NBC News Channel 5’s West Palm Beach Anchor, Michael Williams. Honorary Chairs Suzanne and Bob Wright, co-founders of Autism Speaks, addressed the crowd with moving speeches, motivating everyone to Light It Up Blue on April 2 and demanding action for the passage of the Achieving Better Life Experience Act (A.B.L.E – legislation allowing families raising children with disabilities to save tax-free for their future needs) in congress.

Walk Corporate Chair Denise Negron, Chair Laura Pincus and Co-chairs Amy Schwartz and Debra Rosenfeld along with their amazing Walk Committee and 200+ volunteers made sure that the morning went off without a hitch. Unfortunately, the one thing out of their control was the weather. In the interest of public safety, the actual Walking portion of the day was canceled due to severe storms and high winds. The activities surrounding the Walk, though, were enjoyed by the thousands of walkers who came out for the event.  Before the weather became a factor however, the second annual Run before the Walk took place with more than 200 runners lacing up for autism awareness.

SheKnows.com, the online living magazine, was on hand to promote their “She Knows Where the Other Sock Went” dress. The campaign features Autism Speaks’ long-time supporter and Grammy Award Winner Toni Braxton wearing the dress created by celebrity designer Michael Costello and photographed by renowned fashion photographer Nigel Barker. The unique, high-fashion gown made out of socks that are missing their mates was displayed at the Walk and will next travel to Los Angeles later this spring to be auctioned off with all proceeds benefiting Autism Speaks.

For the sixth straight year, Toys”R”Us and Babies”R”Us proudly serves as the North American sponsors of Walk Now for Autism Speaks. The company’s mascot, Geoffrey the Giraffe, stopped by the Walk to meet and take pictures with walkers. Additional sponsors included: Sandra C. Slomin Foundation and Family Center for Autism and Related Disabilities, South Florida Ford, TD Bank, Palm Beach Gardens Whole Foods Market, Palm Beach Spine and Diagnostics, Northwestern Mutual Financial Network – Striano Financial Group, St. Mary’s Medical Center, The Children’s Hospital at Palms West, and Searcy, Denney, Scarola, Barnhart, & Shipley, Gunster, and the Miami Marlins.

Also taking pictures with families was beloved McDonald’s mascot Ronald McDonald. People visited the MedClaim booth for their chance to win a free iPad and South Florida Ford Dealers provided an Official Pace Car for the start of the Walk. They also made generous donations for everyone who logged into their Facebook page. Children from Allamanda Elementary wow’d everyone with a dance, The Exceptional Theater Company entertained the crowd with a song, and Makayla Kelly kicked off the Walk with the National Anthem.

Walk Now for Autism Speaks are the signature fundraising events for Autism Speaks, raising more than $28.5 million in 2011 in 85 cities across the U.S. and Canada to support autism research, awareness and advocacy. Last year’s Walk Now for Autism Speaks Palm Beach event attracted more than 7,000 walkers and raised over $390,000 for families and individuals. Autism Speaks has provided funding to Palm Beach services providers, including Project LifeSaver through our Family Services Community Grant program. Autism Speaks science grants have supported research at The University of Miami and Florida International University.

For more information about the 2012 Palm Beach Walk Now for Autism Speaks visit http://www.walknowforautismspeaks.org or contact palmbeach@autismspeaks.org or (954) 421-9997.

To see an interview with Bob Wright, please click here.  To see emcee Michael Williams thank Suzanne and Bob Wright, click here.

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Our Blog is Moving!

March 3, 2012 5 comments

We are pleased to announce that on March 6th we are moving our blog onto the Official Autism Speaks website. We are making this move to serve you better!

We know that it will take some getting used to, but we are here to help you adapt. Here are some quick answers to questions you may have:

Will my emails subscription still work?
Yes, if you have been subscribing to our blog already, you will continue to get updates. If not, subscribe now via email or in a reader.

Will my bookmarks still work?
We’ll try our best to make bookmarks still work but sometimes we may not catch changes in time as we sync content from our old WordPress blog to our new Web site. We apologize in advance for this. If you have any questions, please feel free to email contactus@autismspeaks.org

What else will be changing about the blog?
The new blog will just be better integrated into our main Web site. This means you can search on one topic and not only get blog content but all our other content as well.

If I’m using an RSS reader, will I have to change anything?
No! If you have any problems, feel free to unsubscribe, and then add our RSS feed back into your reader.

Categories: Awareness Tags: , , ,

Autism Fire Rescue Program Featured on NBC’s ‘Today Show’

March 2, 2012 4 comments

The training of first responders is absolutely critical to keeping individuals with autism safe. Unfortunately, there are far too many stories of dangerous situations that arise because of a lack of communication and understanding between safety professionals such as firefighters, and individuals with autism and their families. Yesterday, NBC’s Today featured Bill Cannata, the father of a young adult with autism who has developed a program that has educated over 15,000 first responders around the country in how to handle people with autism, and as a result, saved lives. Bill was also a member of the professional advisory committee for the Autism Speaks Autism Safety Project, where he provided tips and quick facts for firefighters interacting with individuals with autism. To further these efforts, in 2011, the Autism Speaks Family Services Community Grants program provided funding for the Autism and Law Enforcement Education Coalition (ALEC), designed to help foster a deeper understanding of autism spectrum disorders by training public safety and law enforcement personnel. Autism Speaks applauds these first responder training efforts.

Longtime firefighter Bill Canatta is committed to caring for his 21-year-old son Ted, who is living with autism. Bill teaches people across the country how to rescue other people with the condition, and his training helped one first responder save a boy’s life. TODAY’s Amy Robach reports. You can find out more here.

I know exercise is important. But with all our autism-related therapies, there’s no energy left. Advice appreciated.

March 2, 2012 12 comments

Today’s “Got Questions?” answer comes from Michael Rosanoff, M.P.H., Autism Speaks associate director for public health research and scientific review.

As challenging as it may be for anyone to develop and maintain a physically active lifestyle, the challenges can be amplified for individuals with autism spectrum disorder (ASD). We are constantly reminded how important it is to teach our kids to make healthy life decisions. But sometimes it can feel like an impossible task when they have other special needs and obstacles.

So it may be no surprise to learn that nearly a third of children with ASD are medically obese. The problem appears to increase with age, with obesity affecting over a third of young adults on the spectrum.

Inadequate physical activity is among the primary reasons for these high rates of obesity. But let’s be honest, getting active can be particularly challenging when a child or adult is also struggling with autism-related issues in areas such as self-control, motivation or physical coordination. And the sights, sounds and tactile aspects of team sports can feel overwhelming for someone with sensory integration issues.

But there’s great payoff in finding physical recreation activities that do work for an individual on the autism spectrum.

Did you know that exercise can decrease the frequency of negative, self-stimulating and self-injurious behaviors? This may be because the highly structured routines and repetitive motions involved in, say, running or swimming can distract from negative self-stimulating and repetitive behaviors. Physical activity can also promote self-esteem and improve mood and attention. For those who can participate in team sports, this type of structured activity can foster social interactions.

This isn’t to say that physical activity can or should replace proven behavioral interventions for ASD. Rather it can enhance their benefits.

For more information on recreational programs and activity tips for children and teens on the autism spectrum, see the physical fitness page in the Health & Wellness section of our website. To learn more about the importance of exercise for individuals with ASD, please see our special science report, “Sports, Exercise, and the Benefits of Physical Activity for Individuals with Autism.” And please use the comment section to share your experiences. What works and what doesn’t for you, your child or other loved one?

‘The Doctors Are In” – 03.01.12

On Thursday March 1, Autism Speaks Head of Medical Research Joe Horrigan, MD, was joined by autism specialist, dentist José Polido, DDS. Here is the transcript.

2:59
We’ll be starting very shortly.Thank you so much for joining us. Joining Dr. Horrigan today will be guest hosts pediatric dentist José Polido, DDS, head of dentistry at Children’s Hospital Los Angeles, one of our Autism Treatment Network (ATN) centers. Dr. Polido helped develop our new ATN tool kit for dental professionals.Dr. Polido is joining our regular co-host, child psychiatrist Joe Horrigan, Autism Speaks assistant vice president, head of medical research. Our Chief Science Officer Geri Dawson is away today. She will be back for our next chat, April 5, along with guest host gastroenterologist and autism specialist Alessio Fasano, M.D., director of the Center for Celiac Research at the University of Maryland School of Medicine.

As always, we’ll be posting the transcript of today’s chat the Autism Speaks science blog here:http://blog.autismspeaks.org/category/science/.

3:01
Hi – this is Dr. Horrigan – thanks for joining us today
3:02
Hi, this is Dr. José Polido, I am a pediatric dentist, assistant professor at Children’s Hospital Los Angeles and USC, glad to be able to join you on this chat.
3:03
Comment From william

good afternoon

3:03
Comment From Winnie Schroeder

Hello

3:05
Advance question from Carolyn:My twin daughters both have asd diagnosis’s , at one of the girls mdt/ iep yesterday the “team” informed me that keeping her verification as Developmental delay would provide her with the best services versus utilizing her Aspergers diagnosis. Is this true? Also in her information they used the terminology ” autistic like behaviors indicating Aspergers.” instead of Aspergers diagnosis as they listed her diagnosis’s of generalized anxiety and phonological disorder, those were not rephrased ” like” anxiety or phonological. My daughter is 6 yrs old. How does early intervention factor in when the school chooses not to ” label” her with autism?
3:08
The doctors are typing furiously. …
3:09
Dear Carolyn: I would ask the Special Ed coodinator why they are averting the use of an autism diagnosis. There are hopefully good reasons for taking the approach that they have recommended. A lot of times the optimal approach , in terms of the actual diagnois used for an IEP, is idiosyncratic to the school system, and sometimes it is to optimize the actual class placement and array of services for the youngster. Either way, they need to provide a sound rationale for the diagnoses they have chosen to institute the IEP
3:10
Comment From Guest

My son is autistic. He is 3 years old. We are working with him on brushing his teeth… but he won’t spit out the tooth paste. Any suggestions? He also has a feeding tube and many GI problems, so we are concerned about him swallowing the tooth paste.

3:13
Hi, thanks for the question. Although fluoridated toothpaste can be particularly helpful in preventing dental caries, it is important to remember that the most important part of oral hygiene is the toothbrushing to remove plaque. You can try using very minimal amounts (smear) or various types of non-fluoridated toothpaste if you think the flavor will help you with brushing, but it is ok to skip the toothpaste altogether if you think it will cause more problems with GI if swallowed. The decision can be made together with your dentist depending on how at risk for getting dental cavities your child is.
3:14
Comment From Tash Gilbert

Is hurting your baby sibling constantly part of Autism or could that be something else? Also only 4 hours a night every night could that be a brain problem?

3:16
Dear Tash: Most likely there is something else going on. It is possible that your youngster with autism is trying to acheive something, such as shaping your own behavior, or trying to communicate (if he/she is nonverbal), through his/her agressive behavior. Either way, it is important to keep your youngest one safe, for sure, and that can be exhausting, I know. Also, there is no question that middle-of-the-night awakening can heighten a child’s irritability and diminish his/her threshold for aggression. This type of insomnia is quite common in autism and it often requires working with a sleep specialist if it is severe (e.g. 4 hours of sleep or less per night). The good news is that there are a range of behavioral approaches that could be helpful and there may also be a role for medicines to help with your child’s sleep continuity
3:19
Comment From Marsha

My grandson is 6 yrs old. Mildly autistic and has PDD, OCD, etc. School is working with us. However insurance is not. They do not believe he needs help. We’ve had him at a stress center, several doctors, etc. They are weaning him off his medicine as they think it is too strong. In the meantime, what are parents suppose to do when they are trying everything and we have to fight insurance companies to get this covered. We live in Indiana

3:21
Dear Marsha: This type of problem with insurance coverage is increasingly common, espcially with marginally adequate insurance policies. Your grandson’s parents should definitely contact HR at their employer to let them kno what is going on, and to ask them to intevene, if need be. Also, the insurance company should have a contact number that the physican can call to contest the insurance company’s decisions, and there is always the possibility of contacting the state insurance commisioner, as well, to make a formal complaint about the insurance company’s failure to provide ‘medically necessary’ coverage. You should always document the name of the individual at the insurace company who you spoke to, as well as the date and time.
3:22
Comment From deborah

my 4 year old autistc grandson will not brush his teeth or let me do it. up til 6 months ago he would allow me to do it. i was unable to take him to his regular dentist as she was on a protracted bed rest with her pregnancy. i took him to another dentist tat had been recommended by a friend and the experience so frightened him that nhe will not allow me to brush his teeth. i am currently using a toothbrushing PEC and sometimes he will allow me to touch his front teeth with a brush but that is all.any suggestions as to how i can get his teeth brushed.he gets flouride drops for his secondary teeth but has not had his last routine fluoride treament due to this experience. any suggestions?

3:25
Hi, many children with autism do not respond well to change in providers or routine. I would work in trying to create a routine at home and attempt to get him back to his old behavior, allowing you to brush his teeth. Meanwhile, consider a discussion with your dentist (when she returns or a colleague) about possible behavior management techniques, desensitization and sedation alternatives so that the procedures go smoother, since he might benefit from more frequent visits if you are not able to provide ideal home care. The Dental Toolkit will help you learn more about sedation alternatives. Also important is to control the diet, avoiding sugary foods or frequent snacks since you are not currently being able to clean the teeth. Patience and perseverance will be very important at this age so that you can get him back into good habits.
3:27
Comment From Mom of Autistic Son

Dr Joe, are we any closer to the cure and how is medical research going?

3:30
Dear Mom of Autistic Son – I wish I knew your name so I could answer your question poperly. I definitely feel like we are getting closer although we are not quite there such that I can use something like the word ‘cure’. We are incredibly busy here, in tems of our medical research efforts, and I am very hopeful. Much of the reserach work that we are either helping to fund, following closely, or initiating ourselves is leveraging the recent advaces in areas such as molecular biology, and genetics, and in some ways the collaborative work that we are doing with closely aligned organizations (such as those working with individuals affected by Fragile X, Angelman, and Rett) are synergizing our efforts, because there is ofetn a clear bridge between syndromic (eg. Fragile X) and non-syndromic developmental disorders (e.g. autism) (in plainer terms, there is a lot of shared biology, and we are definitely using the knowledge gained from this to our advantage, in terms of our current research). I also think tht the second half of 2012 will be partculary importnat in terms of the findings that will be announced in some ongoing clincial trials that will be relevant to you and i and everyone reading this. I will talk more about this in the upcoming months….
3:31
Comment From Ana

My son has aspbergers and I can not get him to brush his teeth cuase it gags him he says. He is 9 and needs to take care of his teeth! what can i do to make him realize just how important it is?

3:31
To work around gagging reflex, you might want to try different toothbrush types (smaller heads, softer bristles) and techniques so that you minimize the toothbrush going too far and causing the more severe gagging. Also, look for the time of day where he might be more relaxed and not very full on his stomach. It is OK to take your time and brush really well once a day without worrying about brushing perfectly after each meal, so long as you are controlling his diet to avoid sugary foods.
3:35
Comment From H Jul

Hello and thank you for this oppertunity. We have a 3 year old boy with autism and we are taking some beginning steps into biomedical treatment with a new doctor.Wanted to know if you have some recomendations or warnings recarding some of the known and common steps in these treatments? Thank you

3:36
Dear H Jul: this is Dr. Horrigan – the most important thing is to ask at each step of the way ‘what is the rationale?’ for the various diagnostic tests that might be recommended, especially if you have to pay out of pocket for them or for some of the customized treatments that might not be covered by insurance. I encourage parents to ask, “can you walk me through the quality of the evidence to support this approach?” and “what is it about my child that makes you think we need to do this test or take this supplement (as an example?” “What about my child’s presentation made you think of doing that, or recommending that?”
3:39
Comment From Valerie

My son is autistic and he is 8 almost 9 years old. He is an extremely picky eater and is very selective about what goes in his mouth. He will look, smell, feel and maybe lick something before he eats/drinks anything. He has gotten better in the past year and brushing his teeth has become less of a chore, he even started using an electric tooth brush yesterday which I think will help with his sensitivity (we struggle with hair cuts). Anyway, do you think that OT and dental care should go hand in hand in these cases? Is there a resource list of special dentists for my area (southern IN)?

3:41
Congratulations on the positive results with the electric toothbrush! We have worked closely with OT and other behavior specialists on oral health topics to maximize the improvement in behavior, including multiple desensitization visits to the dental clinic with the OT present, but most importantly, make sure that they are not utilizing sugary foods (gummy bears, etc) as positive reinforcement, which I have seen a little too often. I would refer you to the American Academy of Pediatric Dentists atwww.aapd.org to find additional resources in your area.
3:42
Comment From lissy

Do 17 year old with Autism and epilepsy need more sleep at night

3:43
Dear Lissy – this is Dr. Horrigan – the short answer is ‘yes’. Most adolescents need a lot more sleep than they normally get, and their sleep debt is often exacerbated by earlt starts on school days. Our schools here where i am now start at 7:40 AM, for example, which can be really challnging for all adolescents and their parents. Also, individuals with epilepsy, if they are still prone to having seizures, are definitely prone to having a diminished threshold to seize (e.g. to have more seizures) when they are fatigued or tired. So the these two things intersect with one another, in terms of risk. I would aim for at least 9 hours of sleep, at the very least, for my adolescent with epilepsy, with or without autism. We will talk more about this in an upcoming office hours, when I have a sleep specialist with me
3:46
Doctors furiously typing …
3:47
Comment From Kris

My son is 15 in 10th grade he is diagnosed with Aspbergers and Autisim.I did not know first that these were two separatediagnosis.He is on an IEP track and his test scores are about 9 years behind his current grade level.He functions at a much higher level though and I am wondering how to challenge the schools test scores and to see if he could get a GED to open up opportunities for himself

3:48
Dear Kris – this is Dr. Horrigan – the two diagnsoes are essentially the same thing. We probably need to talk about the specifics of your son’s IEP, but I would want to make sure that he has a range of approriate accomodations when being tested (e.g. untimed tests, verbal over written answers, testing in a carrel or a quiet place, etc). Generally speaking, most adolescents with Asperger’s, if that is the only valid diagnosis, can definitely get a GED and/or go on to post highschool education, whether it is based at a community college or at a 4-year college or university.
3:49
Comment From william

every time i take my 10 year old Autistic son to the Dentist, it takes 2-3 people to hold him down, while checking his teeth. we have yet to have a xray done to see if their is any inside issues that they cant see cuz he struggles. It was suggested it might be time to sedate him. but i’m not sure it is a good idea for a routine check up. Should i suggest a sedation next time so they can do a full check up without worrying about my son struggleing?

3:50
Dear William, I am going to assume that although your son needs additional personnel to go thorugh his dental visit, it is being done in a safe manner, so in general, I would not recommend heavy sedation or general anesthesia to take routine dental radiographs, unless the examination has showed some concerns that need to be addressed, i.e, dental caries, late eruption of permanent teeth, etc, where you would need to take x-rays and provide care. On the other hand if he is geeting too strong for a good examination, I would consider a full evaluation and treatment under general anesthesia so you can get a baseline and be more aware of any possible problems developing, while continuing to work on desensitization and improving his ability to withstand the routine dental procedures in the office. How often to consider general anesthesia will depend on the initial findings and his behavior on follow-up visits, but usually no more than every 2-3 years.
3:52
Comment From Gretchen

How can I get the ATN ToolKit for Dental Professionals? I think it is something that is needed at my office desperately.

3:53
It’s free for download.
3:54
Comment From Suzie

My son is 14 and mainstreamed and honor roll. However puberty has hit him hard. He likes girls but they don’t seem to like him because they say he is “weird”. How do I help him through this hard time in his life.

3:55
Dear Suzie – this is Dr. Horrigan. I read your question and it made me wonder if there is any professional in your community that has a reputation for doing good work with regard to providing ‘social coaching’ to adolescents- for example, an occupational therapist with an interest in young people with autism spectrum disorders. I also wondered about the avaiability of a mentor program through one of the local universities or colleges – (e.g. a college age male may be able to provide some useful advice and practical strategies to deal with the range of give-and-take converstaions and interactions that occur in any high school setting). I think that some of the Autism U chapters offer that type of mentoring
3:58
Comment From Gretchen

I have a duaghter with ADHD and a daughter with Aspergers and ADHD. I am a dental assistant. I try to help the office staff understand ASD Spectrums, but when a patient who suffers rom one of these issues is in the office, they are very critical and treat the patient like they have leporsy. How, as a professional and as a parent can I help them understand that this is a common disorder and that there will be a lot more patients presenting with these DX in the future? And how can I get them to react differently without causing a major battle. I work in a very cliquish office. i am the newest staff member. It is a military town in an area that is definitely not military friendly…..

3:59
The Dental Toolkit for dental professionals link above might be a way to start. A lot of communication can usually get fair minded professionals to engage in the discussion and find solutions. It might be that the solution will involve finding a good referral source in your community while considering how to best provide prevention guidance and other minor procedures in your own office. Educating them on the condition and how common it is will certainly help. Important to keep focused, objective and very professional in all interactions. That’s the hard work of being an advocate for your children and others with similar conditions.
4:00
Comment From Dee

My son is 7 and is diagnosed with PDD, up to 3 months ago, my son was only sleeping 3-4 hours of sleep at 1 1/2 – 2 hour intervals. Now he sleeps 6-7 hours and only occassionally wakes up 2 -3 times a night for only a few minutes. With his increase of sleep, he has become more hyper, a lot more short tempered and more aggressive. He doesn’t go to his specialist for another 2 months, are there any types of supliments that I can give him other than just trying to tire him out or trying to keep him calm?

4:01
Dear Dee – this is Dr. Horrigan – if I understand correctly what you have written, your son is sleeping for longer periods of time now, but his overall behavior is not as good. There are no over-the-counter supplements that come to mind immediately. Melatonin is usually only helpful with sleep onset, and it is genrally well tolerated. I am wondering if other rasons may account for your son’s behavior, above and beyond his sleep challenges. That said, your son may ultimately be a candidate for an alpha-2 agonist (guanfacine/Intuniv, or clonidien/Kapvay), to help with sleep continuity, but it is best to discuss this with the speciliast – even if you have to do it over the phone between now and when the next appointment is scheduled.
4:02
Apologies that we can’t get to all your questions. The doctors are trying to answer as many as possible.
4:06
Comment From Cora

My 16 year old son is a high functioning autistic, the schools could not challenge him and were not willing to work with him. While in school he was so stressed that they recommended a psychiatrist and meds. He is fine at home no problems just when attending school. So we took him out of school and have been homeschooling now for 2 years. Also while on his meds he gained weight and was sluggish and very mean tempered. He has been off his meds now for 2 years since the homeschooling began. My concern is that his weight has dropped now and he only weighs 105 but he is 5’6 is this normal?

4:06
Dear Cora – this is Dr. Horrigan – you are right in that 105 lbs is low, and I suspect that it might be related to his limited food choices (?) and/or not having great eating habits (similar to all adolescents). A dietician may need to be consulted. Also, you might want to look at supplementing his diet with protein shakes or protein bars (the prices at Walmart are pretty good). It was probably one of the medicines like risperidone or olanzapine that increased his appetite prviously, but if your son is feeling better now, it is best to avoid those
4:08
Comment From Valerie

When doing research how do you go about choosing people whom you use for studies etc? I am a stay at home mom and we are used to traveling is there a way to participate in research and or studies or how does this work ?

4:09
Hi, this is Dr. Polido, I have to sign off now. Thank you for the questions, I hope I was able to help. The most important thing I can leave you with is to encourage good communication with your dentist in regards to the various treatment options available. Early start in prevention and maintaining a healthy routine at home in regards to oral hygiene and diet will usually pay off in the long term. Best regards to all of you!
4:11
Valerie … answer coming from Dr. Joe …
4:11
Dear Valerie: this is Dr. Horrigan – I have to leave in a moment, but we have been talking here at Autism Speaks about better ways to let parents like yoursef know about what opportunties are present at any given moment, in terms of participating in reserach. One of the things that I do a few times a week is to look at www.clinicaltrials.gov, and I enter all of the various terms for autism into the search field, and then i look t the sites that are listed, so that i have a general sense of where the research is occuring, so i know what to say to parenst that live in a specific state or town …
4:11
Here’s a good link. PARTICIPATE IN RESEARCH:http://www.autismspeaks.org/science/participate-in-research
4:13
Dear families – this is Dr. Horrigan – thank you so much for writing in all of your questions. I am sorry that we weren’t able to get to them all today, but we will be back next month, so please attend that if you can find time in your schedules. Thanks again! take good care
4:14
On behalf of all of Autism Speaks. Thanks so much and please forgive us for not being able to get to all your questions. You can also send us questions in advance for the next chat. Our email issciencechat@autismspeaks.org.Please join us again on the first Thursday of next month – April 5th at 3 pm ET/noon PT. Dr. Dawson will be back along with guest host gastroenterologist and autism specialist Alessio Fasano, M.D., director of the Center for Celiac Research at the University of Maryland School of Medicine.
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