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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.

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.

‘The Doctors Are In’ Live Chat

February 29, 2012 1 comment

Please join us Thursday at 3 pm ET/noon PT for this month’s “The Doctors Are In” live webchat. Our featured guest will be pediatric dentist José Polido, D.D.S., head of dentistry at Children’s Hospital Los Angeles, one of our Autism Treatment Network centers.

Dr. Polido was instrumental in developing the newly released ATN tool kit for dental professionals. He welcomes your questions about dental issues including dental hygiene and visits to the dentist.

The live webchat will be hosted by Autism Speaks Head of Medical Research Joe Horrigan, M.D.

We hope you’ll join us!

What: “The Doctors Are In” webchat, with Drs. Horrigan and Polido
When: March 1 at 3 pm Eastern; 2 pm Central; 1 pm Mountain; noon Pacific
Where: Join via the Live Chat tab on left side of the Autism Speaks Facebook page

Collaborating in South-East Europe

February 28, 2012 2 comments

Posted by Simon Wallace, Ph.D. Autism Speaks director of scientific development for Europe.

In December 2010, Autism Speaks joined the Albanian Children Foundation and the Albanian Ministry of Health to develop a regional partnership that can advance autism services and research in South-East Europe. At that meeting, members of five ministries of health (Albania, Bosnia and Herzegovina, Croatia, Macedonia and Slovenia), the Albanian Children Foundation and Autism Speaks pledged to collaborate with support from the World Health Organization (WHO).

Specifically, the newly formed South-East European Autism Network (SEAN) pledged to:

  • Raise public and professional awareness in the region
  • Provide information resources for parents and professionals
  • Collect public health data on the locations of individuals with autism
  • Conduct professional training in the areas of diagnosis, clinical management and early intervention
  • Provide evidence-based services for both children and adults
  • Support the establishment of a regional committee to meet biannually with the goal of developing guidelines and recommendations on public health and autism

Over the last 12 months, Autism Speaks has been working with our partners in the region to ensure that the network is properly organized, identify national coordinators and grow the SEAN membership. Bulgaria, Kosovo and Montenegro recently signed the pledge; and Greece and Serbia may also soon join.

Last week, I and Andy Shih, Ph.D., Autism Speaks vice president for scientific affairs, attended the first official SEAN network meeting, held in Ljubljana, Slovenia with the support of the Slovenian Ministry of Health and the Institute of Autism Spectrum Disorder. Over 300 people attended this conference for national coordinators, local professionals, researchers and families.

Local organizer Marta Macedoni, M.D., Ph.D. and international technical advisor Connie Kasari, Ph.D., from UCLA at the first official meeting of the South-East European Autism Network in Slovenia.

Among the speakers was Antonio Persico, M.D., from Campus Bio-Medico University in Rome, who talked about the importance of multi-disciplinary approaches to help identify persons with autism. Connie Kasari, Ph.D., from University of California Los Angeles, presented on current models of early intervention and evidence for its delivery in schools. Lynn Brennan, Ph.D., an independent Applied Behavior Analysis (ABA) consultant, introduced a new video-based parent training ABA program she is developing in collaboration with Deborah Fein, Ph.D., from the University of Connecticut.

The conference was followed by a meeting for the national coordinators, the SEAN secretariat (Albanian Children Foundation) and technical advisors from WHO and Autism Speaks. Andy delivered the welcome alongside representatives from the Slovenian Ministry of Health and the Slovenian Ministry of Labour, Family and Social Affairs.

The national coordinators made short presentations on the state of autism care and research in their country. Though these countries vary greatly in the degree to which they’ve addressed autism, all face common challenges. In many cases, for example, diagnostic services are not available outside of a country’s capital city. Many countries simply lack the resources and manpower to diagnose the increasing number of children with autism who are being referred to their clinics. In addition, all the national coordinators spoke of the need to have more diagnostic, screening and awareness materials translated into their national languages. They also described a general lack of information on how many children are affected by autism within each country and a lack of public health infrastructure to identify undiagnosed children and adults.

In prioritizing SEAN’s first projects, we agreed to design a survey to assess baseline public health data from each country. This will help each country assess what it needs to improve clinical practice and measure future progress.

The network will also work together to translate Autism Speaks tool kits and other awareness materials and to increase national and regional awareness through World Autism Awareness Day and Light It Up Blue.

The network’s training priorities will revolve around diagnosis and early intervention. Autism Speaks will organize a training workshop at the Regional Centre for Autism in Albania later this year. The network also agreed to explore ways to work more closely with the WHO South-East European Health Network.

SEAN members plan to meet again in April 2013 in Sarajevo, Bosnia and Herzegovina. At that time, the national coordinators will report on the progress they have made in improving awareness and services for families within the region since these first crucial meetings.

Our efforts in South-East Europe are an important part of our Global Autism Public Health Initiative (GAPH). GAPH embodies Autism Speaks’ commitment to the global mission of improving the lives of all individuals with autism. Our international partners include families, researchers, institutes, advocacy groups and governments in over 30 countries. By working together, our partners contribute significantly and collectively to a greater understanding of autism.

What behavioral therapies can help someone with autism and severe anxiety?

February 24, 2012 36 comments

Today’s “Got Questions?” answer comes from clinical psychologist Jeffrey Wood, Ph.D., of the Center for Autism Research and Treatment at the University of California, Los Angeles. The recipient of three Autism Speaks grants, Wood has extensively studied anxiety in elementary school and adolescent children with autism.

Anxiety is common among children and adults with autism spectrum disorder (ASD). Research suggests that at least 30 percent of children withASDalso have an anxiety disorder such as social phobia, separation anxiety, excessive worry/rumination, obsessive compulsive disorder or a phobia such as extreme fear of spiders or loud noise. Indeed, many of the children involved in our ASD research suffer multiple anxiety disorders.

It’s important to remember that anxiety can range from fluctuating, mild and completely understandable to unremitting, severe and irrational. Most people experience some form of anxiety on a regular basis, and this generally involves some degree of physical discomfort as well as negative mood.

Moderate levels of anxiety can actually be a positive, motivating force to increase one’s level of effort and attention when working or socializing.  However, research on how children adapt to different settings (academic, athletic, social, etc.) suggests that high levels of anxiety can interfere with academic and social success.

Several types of cognitive behavioral therapy (CBT) have been developed to address anxiety in children with ASD, with promising results from several clinical research centers. Techniques include challenging negative thoughts with logic, role-play and modeling courageous behavior, and hierarchical (step by step) exposure to feared situations.

We and others have developed programs using modified versions of CBT that was originally developed for typically developing youth. These directly address problematic levels of anxiety in children with ASD. Several of these programs incorporate “special interests” to motivate children to engage in treatment activities during weekly sessions. For example, the therapist may use favorite cartoon characters to model coping skills, or intersperse conversations about a child’s special interests throughout the treatment sessions to promote motivation and engagement.

Depending on the program, these treatment sessions usually last 60 to 90 minutes each and extend over a course of 6 to 16 weeks. Most treatment plans also require parent involvement and weekly homework assignments.

Results from our randomized clinical trial, case studies and related reports indicate that most children with ASD who complete such programs experience significant improvements in anxiety as well as some improvement in social communication skills and other daily living skills. 1-9

We and others continue to conduct research on these and related behavioral interventions for relieving anxiety. At present these intensive and scientifically studied treatment programs are available primarily at a small number of autism treatment centers. We hope that further research and dissemination efforts will make them become more accessible to families throughout North America and elsewhere.

References:
1. Wood JJ, Gadow KD. Exploring the nature and function of anxiety in youth with autism spectrum disorders. Clinical Psychology: Research and Practice. (In press)
2. Wood JJ, Drahota A, Sze K, Har K, Chiu A, Langer DA. Cognitive behavioral therapy for anxiety in children with autism spectrum disorders: a randomized, controlled trial. Journal of Child Psychology and Psychiatry. 2009;50(3):224-34.
3. Sze KM, Wood JJ. Enhancing CBT for the treatment of autism spectrum disorders and concurrent anxiety: a case study. Behavioral and Cognitive Psychotherapy. 2008;36:403-9.
4. Chalfant AM, Rapee R, Carroll L. Treating anxiety disorders in children with high functioning autism spectrum disorders: a controlled trial. Journal of Autism and Developmental Disorders. 2007;37(10):1842-57.
5. Lang R, Regester A, Lauderdale S, Ashbaugh K, Haring S. Treatment of anxiety in autism spectrum disorders using cognitive behaviour therapy: A systematic review. Developmental Neurorehabilitation. 2010;13(1):53-63.
6. Reaven JA, Hepburn SL, Ross RG. Use of the ADOS and ADI-R in children with psychosis: importance of clinical judgment. Clinical Child Psychology and Psychiatry. 2008;13(1):81-94.
7. Scarpa A, Reyes NM. Improving emotion regulation with CBT in young children with high functioning autism spectrum disorders: a pilot study. Behavioural and Cognitive Psychotherapy. 2011;39(4):495-500.
8. White SW, Albano AM, Johnson CR, et al. Development of a cognitive-behavioral intervention program to treat anxiety and social deficits in teens with high-functioning autism. Clinical Child and Family Psychology Review. 2010;13(1):77-90.
9. Sofronoff K, Attwood T, Hinton S. A randomized controlled trial of a CBT intervention for anxiety in children with Asperger syndrome. Journal of Child Psychology and Psychiatiry. 2005;46(11):1152-60.

Read more autism research news and perspective on the science page.

Autism Journal Offers New Podcast on Gender Differences

February 22, 2012 Leave a comment

ImageThe international journal Autism released a new podcast in its Autism Matters series. Sven Bölte, Ph.D., director of Sweden’s Karolinska Institute Center for Neurodevelopmental Disorders, discusses his research on gender differences in cognitive function among high-functioning persons with autism spectrum disorder. Autism Matters podcasts are hosted by University of London psychologist Laura Crane, Ph.D.

The series is designed for a broad audience and aims to showcase the latest research published in the journal with an emphasis on real-world relevance.

Dr. Beth Ann Malow, MD, Sleep Chat Transcript

February 21, 2012 6 comments

12:50
Hi Everyone! We are going to begin in about 10 minutes!
12:53
Thank you SO much for joining us. After the chat, we’ll be posting the transcript on the Autism Speaks science blog:http://blog.autismspeaks.org/category/science/
12:55
Comment From Kristie Vick

thank you for this!

12:57
Our hosts today are Dr. Beth Ann Malow, M.D., of Vanderbilt University Medical Center, and ATN Program Director Nancy Jones, Ph.D.,
12:58
Comment From Ana

Is there any thing like maybe a foutain or something with nature sounds that can help them to sleep?

12:58
Hi Ana, This is Dr. Malow. Great question. I often recommend white noise machines or sounds of nature as they can help adults and children on the spectrum go to sleep. It works by distracting people so they don’t focus on not sleeping. A fan can also be effective.
1:01
Comment From myra

hi, my daugter age 10 has always had her days and nights flipped, recently her MT suggested melatonin ,her family doctor ok’d it to try and it does work wonders for her. My question though is this – I worry about long term use and are there other methods to help her besides melatonin? And yes we tried baths, lavender, rubbing, and most of all the other normal sleep helps? thank you.

1:02
Hi Myra– This is Dr. Malow. I am glad the melatonin is working. It is generally safe long term, although I would recommend that you look at our Sleep Booklet (you can find a link here) which has basic sleep tips for children with autism spectrum disorders. You may find some strategies there that help your child sleep.
1:06
Comment From Lise

I have a daughter who has been diagnosed with sleep apnea. We have a lot of trouble getting her to use her CPAP machine regularly. Any suggestions? She is thirteen, verbal and is not quite high functioning, but does well overall.

1:07
CPAP treatment for sleep apnea really works and the good news is that you will likely see lots of benefits once Lise is using the machine regularly, including sleeping soundly at night and being more alert during the day. To get used to CPAP, a respiratory therapist or sleep technologist can be key to success. They can help you and Lise get acclimated to the machine. I would ask your sleep specialist who diagnosed Lise if there is anyone at the sleep center who could help with this.
1:07
Hi all,
You won’t see questions post until they are selected to be answered. We’ll try to get to as many as we can. Thanks.
1:08
Comment From marie fauth

do you know what are the scientific research about sleep disorders and autism ?

1:10
Dear Marie– There is a lot of exciting scientific research going on about sleep disorders and autism! We are looking at medical causes that interfere with sleep, such as GI issues and anxiety, as well as brain chemicals that affect sleep, such as melatonin. We are also looking at issues specific to those with autism– increased sensitivities to noise and touch, difficulty understanding parents expectations about sleep. All of these causes can be addressed. Be sure to seek advice from your pediatrician who may likely refer you to a sleep specialist or autism specialist.
1:12
Comment From dee

my 6 yr old as been precribed 3mg melatonin an 3 mg m/r melatonin but it wears of at two so she is a asleep from 7 till 2 its really starting to wear me down as she i have two other children to an non of us are sleeping an i really need some help with it as iv been fighting for two years an all they do is keep changing her sleeping tablets :o(

1:13
Dear Dee– I would ask your pediatrician for a referral to a sleep specialist who is comfortable with children on the spectrum. There are lots of things to try. The first thing I would want to be sure of is that there isn’t a medical reason why your child is waking up at 2– GI issues, breathing problems, etc. Also, there are some behavioral strategies that can be tried to return your child to sleep– some are in the sleep toolkit. The important thing to remember is that there are lots of things to try– you just need to get under the care of someone who is familiar with sleep problems in autism.
1:16
Comment From Sebree

My son is 16 and up until he reached puberty, we had no problems getting him to sleep in his own bed. He now falls asleep on the couch and when we go to bed he ends up on our bedroom floor. He is a very light sleeper and wakes up immediately if we wake up. We give him melatonin, which seems to relax him at first and get him in the sleep zone, but once he wakes up in the middle of the night, he is up all night. Today, we are going to try to get him active outdoors, since he doesn’t do anything physical.

1:17
Dear Sebree– Puberty and adolescence can definitely be a challenging time for sleep! You are absolutely correct to try to increase his daytime activity, as exercise can make a big difference. Also be sure he isn’t using caffeine especially in the afternoon and evening. You might also want to try controlled release melatonin (comes in a pill as the coating is what makes it controlled release– so he will need to be able to swallow pills). We are working on a sleep brochure for teens that will be released in the future.
1:19
Comment From Maritza:
Hi Dr. Malow, Is prolong use of Melantonin harmful? If so, what is best to use. My 18 year old son (preparing to go away to college) averages six to six and a half hours of sleep. Also, if Melantonin is OK to use – What is the best brand? Thanking you, Maritza
1:20
Hi Maritza. This is Dr. Malow. Melatonin is generally not harmful if you use a reputable brand, however, it is important to seek the assistance of a sleep specialist or pediatrician with experience in sleep. This is to be sure that there aren’t any medical issues contributing to difficulty sleeping. Also, keep in mind that melatonin helps with falling asleep quicker but doesn’t help as much with how many hours of sleep a person gets. We used Natrol brand melatonin in our clinical trial as it was approved by the FDA for this study, although there are other reputable brands out there.
1:20
Comment From Guest

My son is 13 years old and sometimes does not go to sleep for up to 4 days at a time. I have caught him watching tv and playing video games. His school calls and says he is sick he is white as a bed sheet…. What do I need to do?

1:21
This is a great question and several others have asked questions about TV/’video games as well–so I am hopefully addressing lots of others with this question. It is important to realize that TV/video games can be extremely stimulating– not just the content but also the flickering lights, which interfere with our natural levels of melatonin. I recommend turning the TV/video games/phones/etc off at least one hour before bedtime and making sure individuals engage in non-stimulating/relaxing activities before bed. Getting your son to understand this may be challenging– this is where your pediatrician may be able to help. If removing the electronics doesn’t help, ask for a referral to a sleep specialist.
1:22
To all-in addition to the Sleep Toolkit, you can also check out a recent blog on Sleep that provides information about sleep management.Toolkit
http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/tools-you-can-use Blog on sleep management
http://blog.autismspeaks.org/2012/02/17/my-son-has-sleep-problems-what-can-help/
1:23
Comment From Wyayn

I work at a Transition program with students 18-21. We help students with autism learn work, independent living, and post-secondary skills. Many of our students come to school very sleepy. We spend much of our day talking about alerting strategies to help them stay awake. Parents report to us they have difficulty sleeping at night. How would you recommend we work with parents to help them sleep at night so they can be awake during the day and focused on school?

1:24
Dear Wyayn– it is terrific that you want to be proactive with these parents and that they are in close communication with you! I would suggest you set up a workshop where you can bring in a sleep specialist to work with the parents for a day and provide information on how to help their children sleep. You may also want to engage the students in the workshop as well as they will feel empowered and engaged in the process.
1:27
Comment From Amanda

My son is on remeron at night which we switch up tp clonidine I worry about him getting addicted to the point where he won’t sleep without meds So I some times switch he over to melatonin. If he has no meds he with stay with just as much energy as if he just woke up other times the meds make him relaxed but he still stays up till around 2-4am Are theses medx going to be something he has to take forever he is 7 now and has been on and off them since he was 5

1:28
Dear Amanda– Excellent question. I would recommend you go back to basics and work with a child sleep specialist to try to identify the cause of your son’s problems with sleep. See previous answer about the scientific causes of sleep problems in autism– medical, biological, behavioral. Once the cause is identified, the most appropriate treatment can be prescribed rather than just trying a bunch of different meds.
1:29
Comment From Christy Guitard

My daughter is 5 and has autism. She has had sleep problems since a very young age. After trying many methods, her doctor recently started her on clonidine, and we found that 0.15mg (a tab and a half) helps her sleep from about 7:30pm-6am on most nights. Some nights she still awakens around 2 or 3, but these are rare. We have not noticed any side effects and she has been taking this dose for about 4 months now. As she grows, is it likely she will become more tolerant to the drug? Also, are there long term side effects you have seen in kids on the spectrum that take this drug? Thank you!

1:30
Dear Christy- It is great to hear that your daughter is sleeping well on clonidine and not having any side effects. As she gets older, the dose may need to be increased. I have not seen any long term side effects but I have occasionally seen this medication and others to stop working, so I would recommend that you look at the sleep toolkit and start trying those strategies.
1:32
Comment From Elizabeth Mills

We r n the process of getting on with the agency for persons with disability because the JDC has ordered our 17 asperger’s son 2 be place n residencial care 2 help him now get 24 hr help & conseling n the many problem areas he has hopefully before turning 18. Do u have any advice? This is all so new 2 us

1:33
To Elizabeth and others-While the focus on our webchat today is on sleep, the Autism Response Team members from our Family Services department can provide information on services and other resources.
1:34
Every Wednesday at 3pm EST Family Services Office Hours is held! Office Hours is designed to quickly provide access to resources that are available and free to the entire autism community.
1:35
Comment From Chris

Do you have any strategies on getting a 6 year old to sleep in his own bed? He has always slept with his mother and when we have tried to put him in his bed at night he wakes up immediately and will usually not go back to bed. If he wakes up at night I will try to take him out of the bed so my wife can get some sleep but he will just have a complete meltdown and nobody gets any sleep. He is given melatonin and Zertec, which helps him fall asleep. He will not take any other type of medicine that cannot be hidden in a cup of milk.

1:36
Dear Chris– Lots of parents would like to help their children learn to fall asleep in their own beds so your question is very relevant! If your son can learn to fall asleep on his own, he will likely be able to stay asleep in the middle of the night or be able to go back to sleep easier. To help him learn to fall asleep on his own, I would start by finding a book for your child to read about learning how to sleep in his own bed (there are several out there — “I want to sleep in your bed” by Harriet Ziefert is one) . It helps to start out by having mom sleep in a mattress right next to your son, and then move it a few inches away each night until they are sleeping in separate spaces. Be sure to couple this with a reward program for your son.
1:37
Also, please join us on March 1st at 3pm EST for ‘The Doctors Are In!’ Hosting will be, Head of Medical Research Joseph Horrigan, M.D. and Dr. Jose Polido, a dentist with at the ATN center in Los Angeles!
1:40
Comment From Mel

How can I find a child sleep specialist? (Our pediatrician does not seem to have any recommendation.) It also seems a little excessive for my son’s situation… he is a very restless sleeper and wakes in the morning not feeling rested; but he is not as extreme as others have described, as far as being up for hours. Melatonin helps, but not all night.

1:42
Dear Mel– Below is the info on how to find a accredited sleep center which has pediatric sleep specialists. You can also look at the Autism Treatment Network website as each of these 17 sites across North America has a pediatric sleep specialist with autism experience involved.
1:44
Comment From Helena

Hello, my son is 32 years old and he started having seizures 8 years ago. He has problems falling a sleep. He will lay down but wont be sleep. This can go on for a two til three days then he will have a seizure. Do you have information on a doctor that specializes in adult autism in pennsylvania

1:46
Helena-Dr. Jones here. Our ATN center at University of Pittsburgh, may be able to help find you a recommendation for a doctor in Pennsylvania who works with adults. You can contact them at (412) 235-5412. You can also contact our ART team.
1:47
Comment From Angela

what about adults and children with ADD/ADHD and sleep i am now adult with moderate ADD mild ADHD i struggle sleep since i was baby i have troubles falling asleep my mind wont shut off or stop thinking i would write my problems or thoughts down dont work i take malentonin

1:47
Dear Angela– ADD/ADHD, like autism spectrum disorders, is also associated with sleep problems. Be sure that any medication you are taking for ADD/ADHD isn’t too late in the day when it could be interfering with sleep, and also be sure there isn’t any other sleep problem going on at night, like a breathing problem. Your primary care physician can help with that. Writing your thoughts down is a great strategy– you might also try meditation or other relaxation techniques to help promote sleep.
1:48
Comment From Ana

We are about to move into a new place that has rooms for each of my two children. My son who is a aspie has to sleep with someone at all times or he wakes up and doesnt sleep. We are looking into getting a rescue dog that will maybe sleep with him in the bed, Do you think that this will help? Has there been any study on the dog/pet influence?

1:50
Dear Ana– I don’t know of any studies, but I think that a trained assisted dog is an excellent idea as it may help your son be less anxious at night. Anxiety is a big cause of sleep problems in kids with autism.
1:51
Advance question from Cathy:
Hi, My son is 6 ½ years old and has been diagnosed with ADHD and Asperger’s and shows symptoms of OCD, ODD, Anxiety, Sensory Integration Disorder. He takes a combination of Adderall XR 15mg, Adderall 30 mg, and Intunive 3 mg during the day. His day time hours at school are very good (finally!) but it’s the night time and first thing in the morning I struggle with the most. He has many meltdowns and tantrums, though he’s on a regular diet; blood test results have shown he’s got a higher gliadin level of 38. The medicines wear out of his body by 8:30pm usually, so he’s not on any medications until the next morning when I start his Adderall (XR and regular) again.
Once Daniel’s head hits the pillow, he usually falls asleep within minutes. Problem is, he’s up like 45 minutes later with night terrors. It’s terrifying because he sits in bed and just gives blood-curdling screams. When I go in to see what’s going on, he’ll start hitting, kicking, or punching me. I’ve heard that it’s best to leave him alone, but when I do that, the nightmare seems to last FOREVER. I’m a single working mom and need my sleep as much as he needs his!
What is the best way to handle his meltdowns/tantrums during the off-medicine times? What is the best way to handle his night terrors? Thanks
1:52
Hi Cathy. I would seek a referral to a pediatric sleep specialist as night terrors are very treatable, but must be properly diagnosed. We often will do a sleep study to document night terrors and exclude epileptic seizures. As for the meltdowns/tantrums, I would consult with an autism specialist, keeping in mind that improving sleep may also help these daytime symptoms.
1:52
Comment From Julie

Just joined, sorry i’m late. My 6 year old son has autism and tends to wake around 5 am. we really struggle getting him back to sleep. He is tired but isn’t understanding it’s still night time and bed time. any suggestions?

1:53
Dear Julie– In trying to help with early morning waking (5 am), it helps to figure out what time bedtime is. If bedtime is 8 am, you may want to see if your son can stay up a little later as that may help him sleep until 6 or 7 am. As he gets older, he may be able to entertain himself when he wakes up early. Kids with autism in general seem to need less sleep, so as long as it isn’t disruptive to the family, I wouldn’t be overly concerned.
1:55
Advance question from Richard
My son has trouble sleeping at night he gets up at least 2 or 3 times a night. But when he gets up he seems to be confused and kind of really knowing where he’s at. And the next morning he doesn’t remember even getting up! I was wondering if this is normal or does he have other issues than just having autism?
1:56
Hi Richard. This is Dr. Malow. I would be suspicious of confusional arousals (a form of sleep disorder similar to night terrors or sleepwalking) or possibly epileptic seizures. Would recommend seeking a referral to a pediatric sleep specialist.
1:57
Comment From Amanda

What is a sleep specialist and how do they identify problems?

1:57
Amanda– A sleep specialist is a physician who has been trained in sleep problems– it can be a neurologist, psychiatrist, pediatrician, or other specialist. Finding a sleep specialist who is trained in autism is challenging, but there are some excellent ones out there. Take a look at the link posted below for the Autism Treatment Network– each site has a pediatric sleep specialist with autism expertise.
1:59
Comment From Lisa

My 4 yr old granddaughter has a terrible time trying to fall asleep. She says shes afraid, she has terrible dreams, and sometimes will still be awake at 1-2am…She even is developing dark circles under her eyes because she isn’t sleeping. We’ve tried various things like bedtime stories, no TV for about 2 hours before bedtime, etc…Any suggestions?

2:00
Dear Lisa– Scary dreams can be really hard on a child! You are doing the right thing to try bedtime stories and limit TV before bedtime. Be sure she isn’t watching stimulating videos even earlier than 2 hours bedtime and that there aren’t any other stressors in her life. If not, you might want to talk with her pediatrician about whether she might have an anxiety disorder, which treatment can really help for.
2:01
Advance question from Lisa:
I have a non-verbal 8 year old son that has autism. He has been on clonidine for years but he still has a hard time staying asleep and he can have some “bad” days if he becomes too tired. Are there any new, safe alternatives that might help keep him asleep without causing him to be drowsy in the morning? He is learning to read, type and doing simple math, but these “bad” days seem interfere with his learning and his therapies, so I would really like to make sure he receives enough rest. Thank you guys for all you do for our children.
2:01
To Colleen-If you are asking about what early signs of autism are, I would suggest you check out our Learn the Signs page:Learn the Signs
http://www.autismspeaks.org/what-autism/learn-signs Info on autism
http://www.autismspeaks.org/what-autism
2:02
Oops. Here’s the answer to the advance question from Lisa…. If he can swallow pills, I would recommend controlled release melatonin. If not, gabapentin may be a good alternative. Be sure that you seek medical advice, however, for a couple of reasons—1. To be sure there isn’t a medical reason (GI issues, etc) for the night wakings and 2. To be sure that whatever medication is chosen isn’t going to interfere with his other treatments. Also, be sure you review our new sleep booklet as we include some tips for night wakings.
2:03
Comment From Linda

I suspect my grandson has autism. Any tips on how to approach my son with this?

2:03
To Linda. Dr. Jones here. We have a Grandparents Guide to Autism you may find useful. The link to this document will follow.You may also find these webpages helpful. They have information on the early sigsns of autism.Learn the Signs
http://www.autismspeaks.org/what-autism/learn-signs Info on autism
http://www.autismspeaks.org/what-autism
2:04
Thank you all SO much for joining us. Sorry we couldn’t get to all your questions.
After the chat, we’ll be posting the transcript on the Autism Speaks science blog: http://blog.autismspeaks.org.
Got more questions? Please join us next Thursday (3 pm ET/noon PT) for “The Doctors are In” webchat with our head of medical research child psychiatrist Joe Horrigan and guest host dentist Jose Polida, who practices with our ATN center at Children’s Hospital Los Angeles.

A Trip to the Dentist Can Be a Positive Experience

February 21, 2012 15 comments

Posted by Elizabeth Shick, DDS, MPH, assistant professor at Children’s Hospital Colorado and the University of Colorado School of Dental Medicine, one of 17 Autism Speaks Autism Treatment Network (ATN) sites across North America.

 As a dentist, I can only hope that when I say “open wide,” that’s exactly what the person sitting in my dental chair does. When I see children in my practice, I know I won’t get my wish every time. Many children with autism spectrum disorder (ASD) have difficulty following directions during routine dental cleanings. Nonetheless, I love working with these kids and their families. So I’ve adapted my practice so that everyone involved with these wonderful patients gets the most out of each visit.

A few years ago, for example, I had a visit I will never forget. The family had not one but two sons with autism. My receptionist greeted the family and after consulting with the parents, we decided it would be best for me to see the six year old first, and then see his eight-year-old brother. He came into my small examination room with his mom and immediately began pacing and staring at the floor as if looking for something he had lost. I asked him to sit in the chair. He didn’t respond or look up. It was clear that the bag of tricks I learned in dental school wasn’t going to get him to cooperate.

To coax him into my examination chair, I asked his mom to hold his hand and help steer him into the chair. She continued to hold his hand during the entire visit. I made sure not to rush through with my typical routine. Instead, I showed him the mirror and toothbrush I was going to use and explained to him, each step of the way, what I was going to do next.

After a while, he began to make eye contact with me. He even smiled. He didn’t do everything I asked, and he struggled through certain parts of the appointment, sometimes trying to sit up or jump off the chair. But we got done what we needed to—a dental cleaning, a thorough dental exam, and a fluoride application. Then his dad came in with his older brother, and we did it all again.

During dental school, few students practice treating patients with ASD. For this reason, many dentists may feel uncomfortable when caring for patients with autism, and it can be difficult for families to find a dentist who understands their child’s needs.

I have been fortunate to work with some wonderful autism specialists here at Children’s Hospital Colorado. With support from Autism Speaks’ Autism Treatment Network (ATN), we created Treating Children with Autism Spectrum Disorders: A Tool Kit for Dental Professionals. It is designed to help dental professionals like myself understand autism and work with parents to help make office visits successful. I often use the recommendations in the tool kit in my own practice.

With autism on the rise, it’s becoming more and more important that dental providers—including dental hygienists, dental assistants and even front desk staff—have the most current information about autism and know how to interact with families affected by it. It is our sincere wish that more dentists will be empowered by our tool kit to welcome these children into their practice and help make their visits a positive experience. We hope you will share the new Dentist Tool Kit with your dental care providers. You can download for free, here. Also see Autism Speaks Dental Tool Kit for families, here.

Got Sleep Questions? We’ve Got a Webchat for You

February 21, 2012 6 comments

Please join us TODAY for a live webchat with neurologist and autism sleep expert Dr. Beth Ann Malow, M.D., of Vanderbilt University Medical Center, at 1 pm Eastern (noon Central; 11 am Mountain; 10 am Pacific).

Dr. Malow will be fielding questions on sleep issues affecting individuals on the autism spectrum and their families. This webchat is being held in tandem with the same day release of Sleep Strategies for Children with Autism: A Parent’s Guide, the latest free tool kit published by the Autism Speaks Autism Treatment Network (ATN) as part of its participation in the Autism Intervention Research Network on Physical Health (AIR-P). The tool kit will become available for free download on the ATN’s “Tools You Can Use” page the same day.

Joining Dr. Malow will be ATN Program Director Nancy Jones, Ph.D., who will be fielding general questions about ATN services and other Autism Speaks resources.

We hope you’ll join us:

What: Live “Sleep Chat” with neurologist and autism sleep expert Dr. Beth Ann Malow
When: Feb. 21, at 1 pm Eastern; noon Central; 11 am Mountain; 10 am Pacific
Where: Join via the Live Chat tab on left side of the Autism Speaks Facebook page.

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