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‘The Doctors Are In” – 03.01.12

March 1, 2012 Leave a comment

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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Transcript of Today’s ‘Office Hour’ Webchat with Drs. Dawson and Horrigan

February 2, 2012 1 comment


Thanks for joining today’s “Office Hour” webchat with Drs. Dawson and Horrigan . Here is the transcript.

Please join us next month (March 1st) and every first Thursday at 3 pm Eastern. Look for the “Live Chat” tab in the left column of our Facebook page: https://www.facebook.com/autismspeaks

2:53
Hi everyone! We are just about to start!
2:56
Comment From Tyler Munoz hi.
2:56
Comment From Tinagood afternoon doctors
2:57 Hi Everyone! This is Dr. Dawson. We will be getting started in just a minute or so. We are glad you are here.
2:59 Hi – this is Dr. Horrigan – I’m here , too – thanks for attending today’s ‘office hours’
3:02 Advance question from Lisa, teacher of students with ASD: I have heard a few things…completely rumors…about how gluten-free diets affect those with autism. What are the affects, positive or negative, if any. Thanks!
3:02 Lisa: This is Dr. Horrigan. Yes, for some youngsters with autism, gluten-free diets can be helpful, but it is a minority rather than a majority that benefit, and it is usually youngsters that have a specific family history of GI problems and difficulties with food sensitivities, including more explicit problems like Celiac sprue related to gluten. It is worth having a discussion with the child’s physician about the potential utility of elimination diets (like gluten-free) if the youngster has persistent gastrointestinal problems and the family is motivated to shift (oftentimes the whole household, to assure the child’s adherence) to the specialized diet. The participants have to watch out, though, because it is relatively easy to become deficient in some essential vitamins and minerals if a rigorous elimination diet is pursued – so supplementing with essential vitamins and minerals would be important, too.
3:04
Comment From Tina My son is 12 years old and is still in pull ups, he knows when he needs to go to urinate but not to do a bowel movement. Is there anything I can do to make him more aware. We sit him on the toliet several times a day but with no luck. If you have any suggestions please let me know. Thank you
3:05 Hi Tina, There are some good books that offer strategies for teaching children with autism to use the toilet. Here is one suggestion: http://www.amazon.com/Toilet-Training-Individuals-Autism-Developmental/dp/1932565493 . We will be posting a tool kit on toileting on our website soon so keep your eyes out for that. YOu might also want to check with your behavior therapist, if you have one, who can develop a behavioral plan for teaching toileting.
3:06
Comment From CaraMy son is 6 and the dr prescribed him intuniv to help with some of his behaviors. Is this a typical drug? Do the drugs help?
3:07 Hi Cara – this is Dr. Horrigan – Intuniv (guanfacine) is becoming more popular. It is formally indicated for the treatment of ADHD, and it is often helpful in combination with stimulant medicines like Ritalin or Adderall. But it can be helpful on its own to soften difficulties with impulsivity and excesive emotional outbursts. It doesn’t work for everyone, though, and it has its own unique side effects, especially if the dose is too ambitious (e.g. sedation/sleepiness/fatigue, headache, and there is even a potential for decreased blood pressure). So it needs to be taken under a doctor’s supervision. Definitive studies in the area of autism have yet to be completed at the time of this writing, but they should be forthcoming.
3:08 Dear everyone, Many of you have had questions about the new revisions to the diagnostic criteria for autism. Below is our policy statement on this issue which describes the issues that we all are concerned about and what Autism Speaks is doing to ensure that the revision doesn’t end up excluding people from obtaining the services they need.
3:09 Autism Speaks Statement on Revisions to the DSM Definition of Autism Spectrum DisorderAutism Speaks is concerned that planned revisions to the definition of autism spectrum disorder (ASD) may restrict diagnoses in ways that may deny vital medical treatments and social services to some people on the autism spectrum. These revisions concern the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), scheduled for publication in spring 2013.We have voiced our concerns and will continue to directly communicate with the DSM-5 committee to ensure that the proposed revision does not discriminate against anyone living with autism. While the committee has stated that its intent is to better capture all who meet current diagnostic criteria, we have concluded that the real-life impact of the revisions has, to date, been insufficiently evaluated.Autism Speaks is committing substantial effort and resources to fund definitive research to ensure that the final definition of ASD meets the following criteria:1. Assures that all those who struggle with autism symptoms receive the treatment, services and benefits they need, without discrimination;2. Affirms that ASD can be a lifelong diagnosis, while allowing for treatment and services to change with an individual’s evolving needs;

3. Supports the importance of early ASD diagnosis and treatment as essential for helping individuals achieve their best possible outcomes and avoids creating barriers.

As the proposed diagnostic criteria are evaluated over the course of 2012, Autism Speaks will be working with leading experts in the field as well as community stakeholders to evaluate the potential impact of the DSM revision on our community and to ensure that all necessary adjustments be made to assure access to vital treatment and social support resources for all those who struggle with the symptoms of autism.

At the same time, we will actively serve as an informational resource and advocate for all members of our community, as they seek to make their needs known and understand how the evolving changes will affect them and their families.
3:10
Comment From Nancy MBI hope you can help,my daughter was diagnosed with ADD when she was about 2 now she is 20 and people keep telling me to have her checked because the way she has always been she could have a form of autism what should I be looking for ?
3:11 Dear Nancy, This is Dr. Dawson. Does your adult daughter have significant problems with social interaction, such as problems with eye contact, difficulties forming friendships, or trouble with conversational skills? Does your daughter have overly focused interests or engage in repetitive behaviors? If so, she may have an autism spectrum disorder. Having a diagnosis may open the door to services that could help. Check the following link to find resources in your area:
3:11 http://www.autismspeaks.org/family-services/resource-library
3:12
Comment From GuestSo, can I just ask a question anytime? Never done this before
3:12 Dear Guest at 3:02 – Yes- please just submit your question.
3:14
Comment From Tina SOur son has PPD and is 10 years old. He continues to write letters backwards and if something has a price of say $19 he says “$91″ We have asked and asked for him to be evaluated for dyslexia. Does anyone else have children with symptoms like this? Should we continue to pursue dyslexia along with the PPD or is the backwards spelling and seeing part of the PPD?
3:14 Dear Tina, A child with autism can also have dyslexia, that is, trouble with reading. It is important that you have your son evaluated by a person who has expertise with dyslexia so that you can provide treatment for his reading difficulties along with treatments for his autism.
3:15
Comment From LinneaI have a question: My son has been diagnosed with PDD-NOS and an anxiety disorder- NOS, but his OT has raised concerns about SPD as well. All the symptoms seem to overlap – how can you determine what is caused by what? Or how can a doctor tell if a child has one disorder or another (or both). We are going to a specialty clinic in about 6 months and I’m hoping to get some definitive answers.
3:16 Dear Linnea – this is Dr. Horrigan – I am assuming that SPD refers to “sensory processing disorder”, is this correct? There is a suite of specialized, hands-on tests that occupational therapists use to diagnose under- or overactivity to sensory stimulation, whether it is touch or heat/cold or sound, etc. I agree with you that it can be difficult to disentangle sensory prcessing problems from free-standing difficulties with anxiety. A lot of times it is important to determine if there is a high risk of anxiety disorders in an individual with autism based on one’s family history of anxiety, in which case, behavioral and medocation treatments (e.g. SSRIs like Zoloft/sertraline) can be really helpful, and you can get more traction from the desensitization techniques used by occupational therapists (e.g. brushing, as one example).
3:18
Comment From Loriif a childs does not show GI problems will a GFCF diet help in any way?
3:18 Hi Lori, This is Dr. Dawson. Some parents report that a GFCF diet can help even though specific GI symptoms are not present. If you decide to try a GFCF diet, be sure to have someone who doesn’t know whether or not your child is on the diet keep a record of your child’s behavior (such as your child’s teacher). This way, you can objectively determine if it is helping. Also, check with your pediatrician about monitoring your child’s nutritional intake to make sure he or she is getting the nutrients your child needs.
3:20
Comment From SandhyaHow do we for sure know that my kid has high functioning autism and Are there any tests to find out (lab tests) and how do we know which food are good and bad for them ?
3:21 Dear Sandhya, This is Dr. Dawson. The diagnosis of autism is made on the basis of behavior observations. There are no specific lab tests for autism. Once a child has been determined to have autism, based on behavior, your doctor would want to order specific genetic tests to determine if there is a genetic cause. Other lab tests are sometimes ordered. If you have concerns about your child’s eating, you should talk to your child’s pediatrician. Autism is often associated with difficulties in eating, such as food allergies and food sensitivities.
3:22
Comment From GuestMy son won’t eat for days or weeks at a time. We are waiting for our appt at CHOP’s feeding clinic, and I keep hearing how awful or intense it is. What can I expect? Will he have to go inpatient?
3:24 Dear Guest – this is Dr. Horrigan – that must be very stressful, having such unpredictably as to when your son will/won’t eat. It would be good to know exactly where your son is on the CDC growth charts, and what sort of medical workup has ben done so far. . I think at CHOP they will start off with straightforward things like a flat plate x-ray of your son’s abdomen (it’s painless) and they will obtain a comprehensive dietary history. They will also look at what runs in the family (e.g. things like Celiac sprue, irritable bowel, etc.). If there is specific evidence for a malabsorbtion syndrome, they will do more intensive things. They may also have to look more specifically at endocrine issues which usually means some blood tests (the blood volume they draw isn’t too bad, and they shoudl use topical anethetics or numbing meds) and they may also want to do an MRI (e.g of your son’s head), which is challenging because it can be loud and long and he will have to keep still – often means sedation has to be used.
3:25
Comment From EnidCan you recommend me a good book on autism? This topic is new for me and I don’t know anything. I will love to learn more. My son is 3 years old. I will like to help him and understand him. I am thinking to buy these two books: 1001 Great Ideas for Teaching and Raising Children with Autism or Asperger’s, / Ten Things Every Child with Autism Wishes You Knew. Please help me.
3:25 Dear Enid, This is Dr. Dawson. The Autism Speaks website is full of information and resources, including a list of books on different topics. Look under “What is Autism” and “Family Services” for information. I really like Lynn Koegal’s book – Overcoming Autism.
3:27 Dear everyone, I notice that there are many questions about GI problems, constipation, toileting, and eating. On our next webchat (next month), we will have a gasteroenterologist with expertise in autism on this webchat so we can provide more detailed information. Autism is commonly associated with Gi problems and it is important that these be addressed by a gasteroenterologist. These problems can interfere with a child’s ability to learn and behave well.
3:29
Comment From Guesti have an 8 yr old with bed wetting as well
3:30 Dear Guest – this is Dr. Horrigan – I may have missed the first part of the question or the discussion thread about bed-wetting. But what comes to mind is that there are basic behavioral manuevers that can be helpful (e.g. humane versions of fluid restriction before bed, and also humane use of bell and pad/alarm techniques – the latter can be tricky). It is also important to make sure tht he is not constipated as this can cause overflow incontinence even at night. There are some meds that can precipitate enuresis (e.g I am thinking of unpredictable responses to meds given at nightime like risperidone and some of the SSRIs), so you have to make sure that you are not dealing with a medicine side efect. That said, it is possible that other meds like DDAVP pills (0.2 to 0.4 mg) or low-dose imipramine (25 mg or less) can be really helpful if the bed-wetting is really causing a lot of distress.
3:31
Comment From JillHello, My son just got diagnosed with Autism, he is 4 years old. One of our biggest challenges right now is his sleep pattern. Lately he will stay till 10 or 11pm, wide awake, and then sleep for a few hour incriments, he wont sleep in his bed, unless we put him there after he falls asleep, and even then it is only for a few hours. Any helpful hints ? It is getting really difficult on us, and we have 2 other children that are in elementary school…who need their sleep.
3:31 Dear Jill, This is Dr. Dawson. Sleep problems are very common in children with autism. On February 14th, Autism Speaks will be releasing a new tool kit for families and providers on how to address sleep problems in children with autism. Check back on our website on the 14th. I think you will find it very helpful. We are funding many studies on sleep, including treatment studies.
3:34
Comment From JoshuaHello, Our son is four years old and his primary symptom of autism is his use of delayed echolalia. Although it seems to be very well documented that this is a major symptom of both autism and tourettes, there seems to be little research regarding what helps “cure” it. Everything just says, “it decreases as functional language increases.” Do you have any helpful information related to delayed echolalia and the treatment?
3:35 Dear Joshua, This is Dr. Dawson. It is useful to understand what is the function of the delayed echolalia for your son. Is it a way of communicating his needs and wants? If so, then modeling a simple phase for him to use instead of the echoed response (ideally, that uses part of his response) and having him repeat the appropriate phase before getting what he wants may help. Is it a repetitive behavior? Distraction and involvement in other activities could be useful. Is it a sign of anxiety? Then, addressing the source of anxiety can help. It is true that echolalia does tend to naturally decrease as functional language develops.
3:36
Comment From LoriOur son is 8 very HIgh functioning but is having a hard time focusing at school what could help with this. I hate the thought of meds.
3:37
Comment From Guestlisa pa i have a 8 yr old with autism and a 15 yr old with tubersclerosis and i belive he is on the spectrum but drs only seem to stop at the tsc i i was wondering how to approach treatment of his autism with tsc
3:38 Dear Lisa, This is Dr. Dawson. Many children with tubersclerosis also have autism and it is important that both diagnoses are made. This will allow your child to receive specific interventions to address the symptoms of autism (e.g. social impairments) that not all children with TSC have.
3:38 Dear Lori – this is Dr. Horrigan – does your son have an IEP or 504 plan that includes the classic accomodations for indivduals with ADHD? I am thinking about the use of a carrel, as needed, and the proactive use of verbal cues as transitions occur in the classroom, as well as electronic desktop cueing devices triggered by the teacher or assistnat. In terms of meds, I know how you feel, in terms of your wariness, although sometimes you can get great benefit from the judiciosus and thoughtful use of stimulants, with the knowledge that each person has unique responses to each of the stimulant formuations/preprations (e.g. it is not just about Adderall or just about Ritalin, there are a whole range of choices), and this is important because soemtimes a youngster with HFA can get a very significant effect/benefit from a low dose of a carefully chosen med
3:40 Advance question from Pamela: My question is…is there any link between taking antidepressants while pregnant (2nd & 3rd trimester)(SSRI) and autism in the newborn child?
3:41 Hi Pamela. This is Dr. Dawson. We have written previously on this topic, and I refer you to that blog (link below). This is a question you should discuss with your physician because each woman’s situation is different in terms of weighing the risk and benefits.
LINK: (http://blog.autismspeaks.org/2011/09/02/can-my-taking-medication-during-pregnancy-cause-autism-in-my-baby/).
3:41
Comment From KathleenMy son is 3 years old. He did not start speaking until he was 2 and 1/2 with the aid of Speech and Occupational therapists and a special education teacher. I have been told he has SID (sensory integration dysfunction) Some sites say SID is a disorder and some say it is a symptom of autism. I have concerns that he is on the spectrum at some level because of some of his behaviors but only 1 of his teachers agree. the other 2 and his pediatrician say i am “overreacting”. Who is right? Who should I listen to?
3:42 Dear Kathleen, Some children with autism have sensory integration dysfunction but not all do. Children with autism tend to have more significant difficulties in social interaction (e.g. eye contact, forming friendships, interactive play) and also have repetitive behaviors. You should have your son evaluated by a doctor with expertise in autism to better understand his diagnosis. You can check on this link for resources in your area:
3:42 http://www.autismspeaks.org/family-services/resource-library
3:45 Advance question from Andrew: Where can we find career guidance in the autism research field?
I’m a 24 year old patient advocate. After spending 3 months on a Nation Outdoor Leader School trip in India, on which I watched a classmate pass away, I have a renewed sense of responsibility to my community. How can I help? I want to start getting my undergraduate degree this semester, despite the deadlines having been passed for applications (I just got home from India). I want to know where I should start, what types of paths are open to me, and other ways that I can help.
3:46 Dear Andrew. This is Dr. Dawson. There are many ways to get involved! You can volunteer at a local program for children with disabilities, become an advocate (see Autism Votes LINK), join a walk for Autism Speaks (LINK), or get involved with other college students (Autism Speaks U LINK). You can find the local groups who are providing early autism intervention services and train to be a therapist. There are many career options including becoming a clinician (physician, psychologist, occupational therapy, speech-language therapist), a teacher, a scientist, or lawyer, to name a few. It truly takes a village to support people with autism and other disabilities. I’m glad you are eager to help.HERE ARE THE LINKS:
Autism Votes:http://www.autismvotes.org/site/c.frKNI3PCImE/b.3909853/k.BE44/Home.htm
Autism Speaks U:http://events.autismspeaks.org/site/c.nuLTJ6MPKrH/b.4385867/k.BF59/Home.htm
3:46
Comment From MelissaMy 11 year old son was just diagnosed with Asberger’s what are the best programs for him to get into especially for his socialism skills? What can I do to help him control anger issues?
3:48 Dear Melissa, Children with Asperger syndrome are often helped by behavioral interventions that focus on social skills training. There are also interventions (Cognitive behavioral therapy) that can help with anxiety which is common among children with Asperger syndrome. Anger/emotion-regulation is often a challenge. Again, there are behavioral strategies that can be used to teach your son to better manage and appropriately express his feelings. Clinical psychologists are typically well-trained in these therapeutic methods. You should check in your area for a clinical psychologist who works with children and/or chidlren with Asperger syndrome and also check out the resources in your area on this link:
3:48 http://www.autismspeaks.org/family-services/resource-guide
3:49 Hey everyone: When we posted the link to the resource “library” earlier, we meant THIS link to the resource “Guide.” Here it is again: http://www.autismspeaks.org/family-services/resource-guide
3:50
Comment From TrishMy 3 year old daughter has autism, and she will not sleep much. Hardly ever, no matter what I do. And when she manages to fall asleep she only sleeps a couple hours. I’ve tried schedules, melatonin, wearing her out, relaxation techniques. Is there anything that you could reccommend that works especially well to make autistic children sleep? I’m just so tired!
3:52 Dear Trish – this is Dr. Horrigan. I know it is very very tough to have a child that awakens frequently duirng the middle of the night. It will get better, I promise you, although it may take time. Behavioral contributions are always important to look at. One thing to think about is whether there are unitended reinforcers (rewards) that are occurring on a behavioral level that might be reinforcing her middle-of-the-night awakening (inlcudes letting her get in bed with you after she awakens). I am sure you have already thought about this. The other issue is whether she is accustomed to only a very specific set of cues (e.g. a CD with lullabies playing as a backdrop), associated with being able to fall asleep initially, that can be readjusted. In terms of meds, melatonin only helps with sleep onset, not continuity of sleep (staying asleep) and it shouldn’t be given during the middle of the night (e.g. after midnight) – it can make things worse the next night if it is given that way, because it can distrub the individual’s circadian rhythm. I would have a consultation with a sleep specialist, if you can do that, and this will allow you to discuss other medication possibilites that may be more effective with middle-of-the-night awakenings such as off-label miniscule doses of trazodone or mirtazepine or doxepin, although these meds for a 3 y.o. require a sleep specilist to be involved. You also could get some good behavioral tips from a sleep specilaist that are tailored to your daughter’s unique sleep habits. By the way, on February 14th, we will put up on our web site a “tool kit” on sleep hygiene that I think will be very helpful to parents.
3:53
Comment From GuestHi, my son has ASD, he is 4 sometimes appears to have visual stims when asked to tasks or when he wants something. Is this a behavior or part of the spectrum. His teachers special preschool are stumped?
3:54 Hello Guest at 3:12. This is Dr. Dawson. Is it not common for a child with autism to engage in self-stimulatory behavior when he is nervous, upset, excited, frustrated, or even just wishes to communicate something. It would be helpful to try to understand what is the function of the visual stims. You can do some detective work by recording when it happens and then making a guess what the function is. If your child is trying to communicate something (e.g. This is exciting! or I don’t like this) then you can model for your child the appropriate behavior. If the function of the behavior is to calm himself, then using other ways of calming your child may help. The fact that your child stims when asked to do a task suggest that he might be telling you that the task is either something he doesn’t like or alternatively something he is excited about. If he doesn’t seem to like the task, consider ways of changing the task to make it more appealing (easier, broken into smaller parts).
3:59
Comment From StephanieMy 20 month old daughter has had 3 EEGs and her ped neurologist said they show “sluggishness” with her brain activity. No definite diagnosis yet. However, he suggests she be seen by a Dev ped. We have an appt end of March. I’ve searched and can not find any relation between sluggishness and ASD. Any thoughts?
4:00 Dear Stephanie – this is Dr. Horrigan – I think they probabaly meant “slowing” rather than “sluggishess”, with regard to the wave length frequency of the most common waves seen on your daughter’s EEG. It is not a very specific finding, frankly. It would depend on whether the slowing is localized to a specific part of her brain, or if it is generalized (all over), to know if it is a patten that is clinically meaningful and amenable to treatment (e.g. medicines, like anti-seizure meds). . Slowing is associated nonspecifically with developmental and intellectual disabilites, and may (or may not) be associated with a future risk of seizures. Seizures are diagnosed clinically, by the way (e.g. by observing them directly in the affected individual). Enriching your daughter’s daily life with diffenet types of sensory stimulation (presuming she can tolerate this) and behavioral therapies (e.g. ABA) can also be associated with the lessening of EEG slowing, and rehabilitation, in general .
4:01
Comment From Lori GraysonAs my son gets older, he is now 10, I find he is more forceful with having to maintain an exact schedule and even less flexible than when he was more non verbal. Do these children ever become more flexible with changes. He also still has separation anxiety hen it comes to me, not so much my husband.
4:01 Dear Lori, As your son gets older, he may be developing a stronger sense of what he like and doesn’t like and now has the ability to express himself. So, that may be part of what you are seeing. You mentioned, however, that he is also showing some symptoms of anxiety and it makes me wonder whether your son’t increase in rigidity might be a part of an anxiety disorder. Autism is often associated with anxiety symptoms. I would encourage you to have him evaluated by a child psychiatrist or clinical psychologist. There are specific interventions, such as cognitive behavioral therapy, that can help. In addition, medications are often helpful.
4:03 Advance question from Krista
My 14 yo son has a diagnosis of Asperger’s. Last year he had his brain mapped with an EEG, and subsequently did 16 weeks of neurofeedback therapy. My son has done many, many therapies over the years, and neurofeedback was the first (other than speech articulation) that seemed to make any difference. His interest in engaging with others and his ability to socialize successfully increased. His executive function skills improved. Family members and others, including his music therapist, noticed as well–even his guitar playing improved noticeably. What does the research say about neurofeedback in ASD individuals? Is this an area of research you are funding?
4:03 Krista: This is Dr. Horrigan. It’s really great that your son is doing so much better, and if neurofeedback played an important role in getting him there, then I think that is wonderful. There are some small studies that have reported positive results with neurofeedback in individuals with autism, with success rates ranging from 1 in 4 to 4 out of 5. But it is not clear to me if publication bias is playing a role (e.g. only the positive studies get written up and published). My experience has been closer to the 1 in 4 success rate, and success seems to be very dependent upon the expertise and charisma of the trainer, the commitment of the family, and the level of disability of the individual with autism (lesser levels of disability seem to be associated with greater probability of improvement with multiple rounds of neurofeedback). It is also expensive, and it can be very tough to get insurance to pay for it, so that is a pragmatic consideration. If a family wants to pursue neurofeedback for their loved one, I would recommend working with the neurofeedback therapist to articulate a very clear idea of what success needs to look like, even after the first 5 sessions, so that they can get out early, before having to spend too much money, if the ultimate likelihood of success looks like it is going to be limited. One important upside of neurofeedback, when it does work, is that the rates of sustained improvement are quite good and success can be sustained with periodic ‘booster’ sessions
4:06
Comment From ShellyMy son is 3 and was diagnosed in August. We have been told by numerous people to cut out any red food dyes from his foods. Woudl this be beneficial? He had one episode of vomiting after drinking a juice loaded with red dyes and everyone is telling us to just cut them out, but everything has red dye in it that kids want to eat. Any advice would be great. Thanks!
4:06 Dear Shelly – this is Dr. Horrigan – there is decent evidence that a subset of kids (with or without autism) are senstiive to artifical food colors and dyes. Some red, yellow and blue dyes are especially likely to have this type of association in susceptible individuals. Oftentimes, after incidents like the one that you described (the vomiting), the only way to get close to a definive answer for your child is to scrupulously eliminate that potentially offensive color (e.g. that red dye, in this instance) and then see if things settle down for your son. I know it is a hassle because red food dye/color is failry ubiquitous, all over the place in foods that we all eat, but it is worth trying to get it out of your son’s diet to the extent that you can, to test out your theory. You could be right.
4:08 Advance question from Jolanta:
Hello. My son who is 6 years old is autistic. We live in the United Kingdom. We are considering having another child, but afraid of a possibility that a new child would develop autism. What are the chances? I’m 39 so I need to decide soon. Thank you.
4:09 Hi, Jolanta. This is Dr. Dawson. In the past year, there was a new study that was published that examined the risk for autism spectrum disorder in younger siblings. Although each individual family’s situation is unique, at a population level, the overall risk of a sibling of a child with autism developing the disorder is about 19%. We have summarized the new information on risk rates and had a webchat specifically devoted to that topic. I hope you find this information useful.
Here are the two links:
Summary: http://blog.autismspeaks.org/2011/08/15/risk-of-autism-in-siblings/
Webchat: http://blog.autismspeaks.org/2011/08/16/increased-risk-live-chat/
4:11 Advance question from Desray: Hi my son is 5 an half yrs old. He’s stll in nappies and I’m finding it very hard to get him out of them. The problem I’m havin is that,he nows how to wee in the toilet but he does not want to put underpants or shorts on after his visit to the loo. I’m realy having a hard time dealing with this disorder. He’s my only child and I’m scared for him. I would also like to no if Risperdal or Ritalin is ok for Autistic kids to take. Sometimes Jose has some serious meltdowns sometimes and I feel like I need to give him something. Plse help. I’m from South Africa where we don’t have much assistance. Thank u for all that yull do. God Bless.
4:12 Dear Desray, This is Dr. Dawson. It is terrific that your son is now able to wee in the toilet. That is half the battle! I suggest that you create a series of pictures (these can be photos, drawings, or clippings from magazines) that illustrates the series of steps involved in going to the loo. This would include not only weeing in the toilet, but also pulling up his pants, washing his hands, and so on.Below is a link that describes how to develop these visual supports. You should begin by giving him a reward (this can be a physical reward, praise, food, whatever he likes) after he wees in the toilet. Then, slowly add each new behavior over time, encouraging him to carry out the next step and then rewarding him. Over time, you can start to withdraw the amount of help you provide and rewards for each step as he becomes more capable of doing it on his own. Keep in mind that pulling on his underwear and shorts requires many skills – motor skills and thinking skills – so you may need to provide both the pictures and physical help for a while.Regarding your son’s meltdowns, you should start by keeping a record of when he has those meltdowns and see if you can figure out why. Is it because he is tired? Is there a specific activity or environment that is upsetting? Is he trying to ask for something but doesn’t know how? Use this information to make adjustments in his environment and routine to try to avoid the things that are upsetting. If he is frustrated because he is trying to request something, prompt him to use a more appropriate way of expressing his needs (he could point to a picture, touch what he wants, or say a simple word) and then immediately reward him for using the more appropriate behavior. Talk to your son’s teachers to see if they have suggestions too.Autism Speaks will soon be publishing a new tool kits for handling challenging behaviors – so keep looking on our website for that. We also have a tool kit that can help you decide whether you should consider medication (LINK below). It is best to see if behavioral strategies are effective before turning to medications.HERE ARE THE LINKS:
Visual supports tool kit:http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/tools-you-can-use/visual-supports
Medication decision tool kit:http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/tools-you-can-use/medication-guide
4:13
Comment From MaryMy son is now 23 has aspergers and has had stomache problems all his life I now have done some research and have him on the following B12 500mg, super b complex w/ vitaminc and folic acid , Acetyl L-Carnitine 400mg. Taurine 500 mg,Vitamin D-3 5000 iu, Co-Q Max plus Ginkgo.Advanced Acidophilus Plus , Prevacid 30 mg And Prozac 60mg We have seen great improvement since we started especially in the stomache area and he seems to be more talkitive so much so we are now doing twice a day . He used to drink 2 Monster drinks a day and ask me why he cant feel normal like when he drinks those drinks so I researched whats in them Whats your thought on this and is there anything that you would add?
4:14 Dear Mary – this is Dr. Horrigan – it sounds like your son is feeling a lot better and i am very grateful for that. In terms of what he is taking, the only thing that came to mind immediately is to make sure that he is not too overboard on the B6 (e.g. I usually go up to 100 mg, max). I would need to know the exact compostion of the Super B to give you a more sophisticated comment about other potential yellow/red lights. The Monster drinks are probably ‘benficial’ for your son due to their load of caffeine and sugar. I would rather he try coffee, if he really feels that needs that extra benefit provided by cafeine. Just being practical here…
4:15 Advance question from Mel:
Hi, I never done this before but I was wanting to ask a question. I have a 12 year old son with autism and a 4 year old daughter who I think has autism. We’ve had her tested and she shows a lot of autistic traits. I was told that because she can respond when they say hi, how are you, that she isn’t autistic at all. Is it possible that they misdiagnosed her? Should I try to find somewhere else to take her? Thank you.
4:15 Dear Mel, This is Dr. Dawson. I’m glad you asked your question. If you feel that your daughter may have autism and the doctor you saw missed it, you should seek another opinion. Siblings of children with autism sometimes have difficulties in areas related to autism, such as social and language skills, without meeting full criteria for autism. Even if your daughter is found not to meet criteria for autism, she should receive help in the areas she has difficulty in, whether that is language, learning, or social behavior.
4:17 Advance question from BA Travis:
I am looking to see if there has been any research or if any of the Drs. would be able to tell me about links to high exposure to pharmaceuticals and ASD.
The background is while I was pregnant I was working in a pharmeceutical facility that manufactured over the counter cold and pain medications. I was exposed daily to high volumes of raw powdered chemicals. I asked to be transfered but was denied. We were required to ware dust masks when pouring the powdered materials but that was it. I had a healthy baby after over 20 hrs of labor but by 2.5 he was diagnosed with being high functioning Autistic. At 5 he is on par educationally for his age but tests at around 30 months for speech and has trouble with focusing on the task at hand. Before I left the company over a year ago an environmental quality manager was brought in to do air testing and before long all personel working in the same areas as I was were being required to ware tyvek suits with battery operated air respirators.
The thought has been in the back of my mind but not being able to find anything online on a link but after the drastic change in the way the employees now have to handle the product has brought that thought to the forefront.
Any thoughts?
4:17 Dear BA Travis: This is Dr. Horrigan. While you have provided a limited amount of information here, it does sounds suspicious that the company changed its policy to require the use of specialized equipment by workers ostensibly to prevent hazardous exposure to something in the workplace. I would need to know specifically what chemicals that they had you handling, to have a more sophisticated insight into the potential relationship of in utero exposure to those chemicals and neurodevelopmental disorders. This is the type of inquiry that we are very interested in and we have funded and are funding several lines of research to help identify the relevant prenatal risk factors arising from the environment that are associated with autism.
4:19 Moderator’s note to BA Travis: You can send more info/reply after the chat to sciencechat@autismspeaks.org.
4:20 Advance question from Vanessa:
My 7 year old son has been diagnosed with pdd-nos, anxiety and adhd. Currently he is having a hard time at school connecting with other children. He is obsessed with Hello Kitty and gets picked on by the kids in his class. Recently he is telling people he is a girl or that he wishes he was a girl. He is also introducing himself as his younger brother. I can kind of deal with all this but he seems to be increasingly aggressive lately and hurting himself. I am concerned because I am afraid he will really harm himself or another student. Is there anything I can do to help him? Usually he is pretty easy to work with and calm down but recently he just seems so angry. He is currently on a low dose of Zoloft and Intuniv.
4:21 Vanessa: This is Dr. Horrigan. The first thing that question that came to my mind is whether there are any easily identifiable factors occurring in your son’s school environment that are causing him to feel so distressed. For example, I am worried that he may be getting bullied, perhaps by multiple classmates. And it may be sneaky bullying, it’s hard to tell. Either way, any type of bullying would be completely unacceptable. Have you had a chance to discuss the issue of triggers for his aberrant behavior with his teacher(s), and/or the Exceptional Children’s coordinator, and have you had a chance to observe him in the school setting yourself, to see what may be associated with his distress? I also wonder if they might be pushing him too hard, with regard to the curriculum. Again, it’s hard for me to say. You need more information from the people at school. In terms of the medications, I am not sure how long your son has been taking Zoloft and Intuniv, but both can cause paradoxical heightening of anxiety as well as paradoxical worsening of irritability (it is more common when first starting Intuniv, in my experience). If you suspect that the medications may be worsening things, then talk to your son’s doctor and discuss a trial off one or both of the medication(s).
4:24 Thank you all so much for joining us, and we’re sorry we weren’t able to get to all your questions. Please join us again next month, on March 1st, with your questions. We’re going to invite a gastroenterologist with expertise treating those with autism to address your many GI concerns. Thanks again and be well!Dr. Dawson and Dr. Horrigan
Categories: Got Questions?, Science, Uncategorized Tags: , , , , , , , , ,

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

January 13, 2012 6 comments

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

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

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

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

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

Categories: Got Questions?, Science, Uncategorized Tags: , , , , , , , , , , , , ,

Transcript of Today’s Office Hours Webchat

January 5, 2012 3 comments
Office Hours Webchat with Geri Dawson and Joe Horrigan Jan 5. Thanks to the more than 200 readers who joined us. As time allowed answering just a portion of more than 100 questions, we hope you’ll join us again next month—Feb. 2 (first Thursdays) at 3 pm Eastern.

 

Thursday January 5, 2012

2:56
Hi Everyone! We are just getting ready to begin!

 2:56
3:00
Hello everyone, this is Dr. Dawson. Welcome to the webchat. We’re glad you are here. Dr. Joe Horrigan and I are here and ready for your questions.

3:00
3:00
Hello everyone – yes, this is Dr. Joe Horrigan and I am here, too.

3:00
3:00
Advance question from LINDSAY: My 3 year old son has not been diagnosed as on the autistic spectrum at this time, however I have that gut mom feeling that he is on the spectrum. He went through the First Steps program from 18 months to his third birthday. He was evaluated by our school system and is now attending half day preschool five days a week. During that time he sees attends speech for two fifteen minute sessions. He especially needs help with his language both receptive and expressive. My question is what is my next step in finding a private place that deals specifically with autistic kids so that he can get a more intense therapy for his language delay? Also, is this kind of therapy covered by most insurance plans or are there other avenues to get it covered?

3:00
3:02
Hi Lindsay, This is Dr. Dawson. If you feel that your son might be on the spectrum, I encourage you to see a specialist – either a physician or psychologist – who specializes in autism and can provide a proper evaluation. If he does have autism, this will open the doors to intervention programs and services. Autism Speaks resource guide (http://www.autismspeaks.org/community/resources/index.php) can help you locate services. Speech-language therapy is usually covered by most insurance plans. Specialized autism treatment, such as applied behavior analysis, is sometimes covered depending on where you work and the state you live in. Follow your instincts and I wish you the best!

3:02
3:04
[Comment From Guest Guest : ]Me and my husband do not see eye to eye with our son is there anyway to find a common ground?

 3:04 Guest

3:05
Hello, It is common for parents to disagree about what is best for their child. Find a time when the two of you can spend some quiet alone time together and allow time for each person to express their feelings and concerns. Really listen, reflecting back what you have heard. Then, see if there is a way of coming up with a solution that you both feel comfortable with. If you continue to have difficulty seeing eye to eye, meet with a professional and discuss the issues you disagree about with this person, who can help you be more objective and promote a healthy dialogue.

 3:05
3:07
[Comment From Rachel Rachel : ]My son was diagnosed with PDD and Klinefelter’s in June. He had a feeding tube placed in March 2011 and is still not eating. He will be 3 in March. Any suggestions?

3:07 Rachel

3:09
Hi Kim, This is Dr. Dawson. It is not uncommon for young children with autism to recognize letters even before they start saying words. She can see the letters and use her visual skills, which may be stronger than her auditory skills. Playing games by pointing to and naming letters can be a way of stimulating her language development, so I encourage you to continue to interact with her by playing letter games.

 3:09
3:09
[Comment From Kim SmithKim Smith: ]I have a 2yr old daughter. Actually 27months old now. She doesn’t say any words at all, but she does recognize a few letters, A B C D E P T, not consistently but at times. I constantly work with her on letters. Because she has ADS/sensory issues, is she just repeating these because she’s recognizing them or could this truly be a preface to her ability to speak. what do you think??

3:09 Kim Smith
3:10
Rachel: This is Dr. Horrigan. It would be good to know if your son has had a formal GI workup completed, to look at potential biological or physical causes for his not eating, and to know what they found, especially if they did a biopsy. Also, a skilled dietician and/or speech therapist could be quite helpful, in terms of determining if there are any windows of opportunity in terms of your son’s preference for particular tastes or textures. There have been occasions, usually with older children, when we have to, out of medical necessity, use medicines in an off-label manner to augment appetite – examples would be cyproheptadine or risperidone or mirtazepine. Again, this is “off-label”, but sometimes we have to do it out of medical necessity.

3:10
3:12
[Comment From MicheleMichele: ]My Granddaughter is six years old, she can read at sixth grade reading level, she writes, she speaks a little bit of several languages self taught googler. yet, I rarely get a direct answer from her. Sometimes I do, sometimes I don’t. Suggestions on communication would be so helpful. One more thing, she has the most violent temper, what are the best means of disipline for kids with Autism.

3:12 Michele
3:14
Hi Michele, This is Dr. Dawson. Even after children with autism develop many skills, such as reading and even speaking in different languages, they can continue to have difficulty in the social use of language, especially with conversation skills or responding to questions that she might not be interested in. Before engaging her in a conversation, be sure to take a moment to get her attention and then state the question in a simple direct manner, even providing visual cues such as gestures. If she doesn’t respond, you can prompt her to respond by giving her choices of responses (“Do you want X or Y?”) or even providing the beginning part of her answer. She is fortunate to have such a caring grandmother.

3:14
3:16
[Comment From GuestGuest: ]My daughter Madi is 10 almost 11 she has autism and is just starting puberty. I have never seen her so anxious like she has been these last few months. I have a dr.’s appointment to talk about medication for anxiety but, we are currently not on any, What types of med’s do they put such young children on?

3:16 Guest
3:18
Dear Madi’s mom: hormones such as estrogen and progesterone can definitely influence mood, as can the hormones from the brain that stimulate their production. Changes in these levels can trigger anxiety, including episodes that feel like ‘panic attacks’, sometimes associated with an emerging menstrual cycle, and this is not uncommon when there is a family history of bona fide anxiety disorders. In terms of medications, I suspect that you may end up talking with Madi’s physician about options such as an SSRI (e.g. fluoxetine, sertraline), starting with very low doses, or perhaps even a low dose of a benzodiazepine such as clonazepam, if there is a clear medical need because the anxiety is becoming disabling. I suspect that the degree of anxiety may settle down somewhat once Madi passes through menarche and commences regular periods, but that come take some time…

 3:18
3:20
[Comment From DesiDesi: ]I am a concerned sister my brother has been displaying very defiant attitude about going to school and doing his routinely schedule. He also has this tendency to lash out and talk to his hands naming them Oobi and Uma… He does very forcefully and it happens about 53 times an hour. His school brought this attention to us this summer 2011. His teachers have noticed he is doing this more and more which deters and delays the time to complete a task. Would you happen to know what this is?

3:20 Desi
3:21
Hi Desi, This is Dr. Dawson. The behaviors you are describing are common in children with autism. Your brother is having trouble knowing how to express his feelings in an appropriate manner. When he gets frustrated, he likely doesn’t know how to express his frustration using words, and therefore he lashes out. Repetitive behaviors are also common. Both the lashing out and repetitive behaviors can helped through behavioral interventions and sometimes with medicine. To find resources, take a look at Autism Speaks resources library.

3:21
3:21
http://www.autismspeaks.org/family-services/resource-guide

3:21
3:22
[Comment From LaurenLauren: ]How often do you recommend having a child see a developmental pediatrician? My daughter saw one just over a year ago and is in an intensive school program, but I haven’t taken her back to the dev. ped. Should I take her every year or ever six months, etc??

3:22 Lauren
3:22
Lauren: This is Dr. Horrigan. Every six months is fine, in my opinion, if everything is going reasonably well, and there are no specific medical or psychiatric concerns that merit the use of medication. I would look at a more frequent pattern of visits to a developmental pediatrician if your daughter is not making the gains that you expect, or if you are wondering if medicine might be a useful part of her treatment plan.

3:22
3:23
[Comment From GuestGuest: ]Hello, Doctors. I am a college student majoring in biology. Last summer, I managed a summer camp for adults with intellectual disabilities, and was inspired to specialize in autism when I (hopefully) attend medical school. I was wondering what inspired each of you to enter into this field of research?

3:23 Guest
3:23
Hello – This is Dr. Dawson. Like you, I was inspired to devote my career to autism at an early age. I babysat for twins with autism in high school. At that time, there was so little known about how to care for and help people with autism. We have made a lot of progress but we have a long ways to go and we need people like you to join the effort.

3:23
3:26
[Comment From GuestGuest: ]My 3 year old was just diagnosed on the spectrum 3 weeks ago. His IEP has been developed and his first day of special ed pre k was today! One of the things we will be working with is communication thru pictures. I’ve looked up info regarding PECS and similar. It is not in our budget to purchase PECS currently. Do you know of any other resources/options? Thanks.

3:26 Guest
3:26
Hello, This is Dr. Dawson. PECS and other visual communication systems can be very helpful in promoting language development in young children with ASD. Your school should provide you with an identical set of pictures that they are using so they can be used at home. Many times, these are handmade and can even involve photos taken by parents and teachers. You don’t have to necessarily use pictures made by a company. Here is a link about the use of visual supports:

3:26
3:27
http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/tools-you-can-use/visual-supports

3:27
3:28
[Comment From GuestGuest: ]How do you decipher how to treat co-morbidity with ASD and associated disorders such as GAD and ADD? My child has a combination of these and it is difficult to tease out cause and effect or primary vs. secondary – especially in social situations where the ASD is present and so is the ADD impulsivity. THANK YOU!!

3:28 Guest
3:30
Dear Guest: This is Dr. Horrigan. You are absoloutely right – it is tough to disentangle common co-morbid conditions, such as co-morbid anxiety, especially if the youngster’s degree of developmental disability is more substantial. This is one of the reasons why I like to spend a lot of time taking a good family history, especially to look at who in the family (mom, dad, brothers, sisters) might have common psychiatric conditions that are known to be heritable and can be readily treated – you mentioned two of them – anxiety disorders and ADHD are two good examples. Then we decide if we want to use medicine as part of the treatment package for the youngster with ASD – if we do, we typically start with much lower doses than the prescribing information typically indicates, and we pick a medicine that is keyed to the specific difficulties that the youngster is facing. An example would be something like clonidine for a youngster with ASD that is very hyperactive/impulsive.

3:30
3:32
[Comment From lisalisa: ]I am an SLP and would like your insight on a client. He is 6 and nonverbal…uses some signs and pictures for communication very effectively. he has a history of aggressive behaviors that we think were related to gastro issues and underlying strep. those are taken care of now and aggression is only when he doesn’t get his way…very developmental behavior. Now, however, sometimes he gets this very confused look on his face and then starts to cry…a very pitiful cry. A hug makes it better for a while. he is also having a terrible time in public…restaurants, church….has huge meltdowns, bites, scratches…..

3:32 lisa
3:32
Hi Lisa, This is Dr. Dawson. Autism is often associated with medical issues, such as gastrointestinal problems, so it is great that you were aware that this boy was suffering and got the treatment he needed. You should keep a careful record of the times when he starts to cry to see if you can determine what is eliciting this. Perhaps it is something you can change. The important thing is to continue to help him learn to communicate his needs and feelings, so that he doesn’t have to resort to meltdowns and aggressive behavior. If you can anticipate when he is starting to get upset, you can prompt him to ask for a break or help by using a picture, word, or gesture, instead of having a meltdown.

3:32
3:33
[Comment From annann: ]My son is taking intuniv 2 mg it seems to be helping but I am being told by other parents that he should be in a combination of stimulant plus intuniv

3:33 ann
3:35
Ann: This is Dr. Horrigan. It is not a problem for your son to take Intuniv (guanfacine) by itself. If it is helpful for your son, and it is well-tolerated, by itself, that is fine. It can work well on its own for impulsivity/over-activity and to some degree for inattention/distractibility. The fact that it has been studied alongside stimulants is helpful additional information, but it does not confine how it is used by thoughtful clinicians.

3:35
3:36
[Comment From MichelleMichelle: ]How do we handle discipline in our 4 year old.. limited verbal child? My husband, our child’s school and myself are all addressing it differently and it seems none of it is working!

3:36 Michelle
3:38
Hi Michelle, This is Dr. Dawson. Is your child participating in an intervention that uses applied behavior analysis (ABA)? If not, to find out more about ABA, you can check out this link on Autism Speaks’ website. See link below. The methods of ABA should be used to help discipline your child with autism. The method involves providing a routine and structured environment, breaking down the things you want your child to do into small easily understood steps, teaching each of these steps often with much repetition, and then reinforcing each behavior using those things that your child specifically finds reinforcing.

3:38
3:38
http://www.autismspeaks.org/what-autism/treatment/applied-behavior-analysis-aba

3:38
3:42
[Comment From AishaAisha: ]My son was diagnosed with ASD at 3yrs old the fall of 2010 and now this past fall 2011 he was diagnosed with ADHD. I want to know if this is common?

3:42 Aisha
3:42
Dear Aisha: This is not uncommon. ASD usually trumps the clinical picture, especially if the if the degree of disability is more severe, and the younger the child is. Also, DSM-IV discourages an ADHD diagnosis if autism is diagnosed as the primary condition. However, for many individuals with ASD, as the severity of their core ASD symptoms subside with maturity, it is not uncommon for the residual inattention/distractibility/hyperactivity/impulsivity to be the key disabling features that remain, and this become more evident as the school curriculum becomes more cognitively (and behaviorally) demanding.

3:42
3:43
[Comment From LaceyLacey: ]Hi! I have been looking forward to this all week!! We started trying to get my almost Three year old daughter tested in September and I am very frustrated. We got a ref. from her Pedi. to early intervention. They called us after a few weeks and said that it would be better for us to go through the school board. We gave them all of our information and than weeks went by with no contact from the school board. I called them back and they said that they did not have our paper work. We did the inital testing on Dec 13th. The lady told us that she strongly suspects ASD and that she needs more testing done. They said to expect an appointment letter sometime in Feb. I did not want to wait that long with no information so I started trying to find a private dr. What a night mare. Call the insurance company and got a phone number. Called the dr and they said that we should wait until after the holidays so that she would be closer to 3 for testing. I called back Jan 2nd and was told that the dr was no longer accepting new pts. After explaining the situation they said that they would call me back after talking to the dr. The did not call me back despite me leaving 2 more messages over the next Two days. I got in touch with them again and they told me that she could start seeing a social worker that will be out until March. Should I wait that long? If so what do I do in the mean time? I feel like I dont know what to do with her. Like when she has a melt down I just kind of hold her.

3:43 Lacey
3:44
Hi Lacey, This is Dr. Dawson. What you are going through sounds so frustrating. I know you are eager to get started helping your child right away. I recommend that you check out Autism Speaks resource library which will show you the providers in your area. Keep calling until you find someone who will see you as soon as possible. Your local Birth-to-three center should see you right away. You can get started in speech-language therapy even before you have a formal diagnosis for your child. Also, there are many good books that explain things you can do at home to help your child. I recommend Overcoming Autism by Lynn Koegal. Check out Autism Speaks 100 day kit for more information about how to get started and find resources.

3:44
3:44
Resource Library from Family Services:
http://www.autismspeaks.org/family-services/resource-library100 day kit:
http://www.autismspeaks.org/family-services/tool-kits/100-day-kit

3:44
3:47
[Comment From CourtneyCourtney: ]My Son has been Biting the Inside of his Lip happens when he is upset, board, Or super excited! Now It is A big sore!! Witch is now Reacting with his eating!! What can I do to Stop or speed up the Healing?

3:47 Courtney
3:48
Courtney: This is Dr. Horrigan. You can also speak with a dentist, but it sounds like your son may have one or more apthous ulcers in his mouth from the accidental biting. Sometimes l-lysine can be helpful, but you have to really crush up the pills to make them easy to swallow if the ulcer(s) really hurt. Occasionally oral herpes can masquerade as, or look like, SIB mouth sores, in which case there are other medicines for that. But I think a dentist should take a look, to figure out what might be going on….and to make a proper diagnosis.

3:48
3:50
[Comment From RobinRobin: ]My son is 11. DX with Asperger Syndrome. He hates school and seems to be very angry all the time. He is extremely bright but of course is lacking in social skills. Are there major behaviour changes related to puberty? is this anger normal? He is not angry all the time but he gets very frustrated easily and he screams at people!

3:50 Robin
3:50
Hi Robin, This is Dr. Dawson. The problems you are describing are not uncommon but it would be good to see if there is a way to help your son be happier, especially to enjoy school since he is so bright. Puberty brings many changes – both hormonal and social – can result in higher levels of emotional outbursts and anger. The first thing is to try to understand what it is about school that he hates. Is it the classroom structure, the academic material (is it interesting, boring, too challenging), his lack of friendships, or possibly bullying or teasing? Meet with his teachers to discuss your concern and see if you can make changes at school that will help him enjoy it more. Social skills training, which includes teaching a child had to manage their emotions and outbursts, can be very helpful. Check out Autism Speaks resource library to see if you can find a psychologist or behavioral specialist or social skills group in your area. You can find the link here:

3:50
3:51
http://www.autismspeaks.org/sites/default/files/documents/atn/transition_from_pediatric_to_adult_services.pdf

3:51
3:52
Hi JM, This is Dr. Dawson. Your brother is fortunate to have such a caring brother! Check out Autism Speaks transition kit (above) – it describes in detail how to help an adolescent with ASD transition successfully from high school to college.

3:52
3:53
[Comment From JMJM: ]My brother has Asperger’s and is getting ready to go to college this semester. How can my parents prepare him?

3:53 JM
3:55
[Comment From ShannonShannon: ]Hi, my son is 7 years old and has aspergers. He is also diagnosed with ADHD, sensory, and anxiety disorder. He has had so many changes in his life, we recently had to move in with my parents because my husband lost his job as a manager. My son is on focaline (15 mg AM), intuniv, and ritalin (5 mg at 4pm). He is having major issues at school and anxiety. He worries about the smallest thing and freezes answering the simplest questions (like 2 plus 2). He does see a therapist without any luck and the school feels like there is emotional barriers. But he is failing second grade regardless of us or the school helping. He use to be a straight A student and now he pulls C’s, D’s and F’s. Is there anyway (without medications) to lesson his anxiety or help him through this? We do play therapy but he seems to be getting worse to the point of effecting his gastrointestinal. He seems to pick fights and lie quite a bit at home. At school he runs to the nurse for every little thing or is late to class regardless of us dropping him off early. I believe it’s avoidance? Anything to subside his anxiety?

3:55 Shannon
3:56
[Comment From DonnaDonna: ]I am a bus aide for special needs children and I was wondering what is the best way to introduce change to autistic children

3:56 Donna
3:56
Hi Donna, This is Dr. Dawson. As you probably are aware, children with autism often resist change and can become upset by any change in routine. If you can anticipate a change ahead of time, it is most helpful. You can explain that things will be different (for example, the bus will be coming at a different time or take a different route) and illustrate this using pictures, if possible. Check out Autism Speaks visual support tool kit at this link:

3:56
3:57
VISUAL SUPPORTS: http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/tools-you-can-use/visual-supports

3:57
3:58
Shannon: This is Dr. Horrigan. I think that the difficult changes that have occurred in your family’s life, mostly of which are not directly amenable to simple interventions, are influencing your son’s behavior. I am sure you are doing an excellent job at giving him the most emotional support that you can, given all that is happening. It would be good to know if there have been any recent changes in his school setting, as well, that could be contributing to how he is feeling and acting. In the meantime, to focus on the last part of your last question, when stress reaches ‘catastrophic’ levels, we sometimes use a small amount of risperidone or aripirazole, as examples, to dampen down catastrophic reactive outbursts. SSRIs are also an option – see my previous comments about this class of medicines in one of my earlier responses. I am also left wondering why your son is simultaneously taking Focalin and Ritalin; I would want to make sure that there is a good reason for that…sometimes, they make anxiety worse…

3:58
3:59
[Comment From Suzanne B.Suzanne B.: ]My 8yo son has had chronic constipation since birth. Dx with ASD at age 3.5, with ADHD at 6. We’ve been using Miralax for years, but he sometimes gets backed up and requires an enema. We are trying regular toilet training (after breakfast and dinner) to encourage his system to regulate. My question is about diet. He is a “good eater” (when the amphetamines aren’t suppressing his appetite), and loves all kinds of food. So, I’ve been reluctant to try the GFCF route with him (add inflexibility to an otherwise relatively flexible Aspie). I wonder what you folks think — have you seen benefits to removing casein and gluten in this situation?

3:59 Suzanne B.
3:59
Hi Susan, This is Dr. Dawson. Psychologists and neuropsychologist both have training in behavioral health, but a neuropsychologist has special expertise in testing specific functions of the brain, such as attention, memory, and so on. The neuropsychologist can be especially helpful if you are concerned that your child has a learning disability.

3:59
4:02
[Comment From LisaLisa: ]My almost 4 year son was recently diagnosed with ASD. We also have a daughter in first grade (6 years old) not ASD. What is a good age for us to explain her brother to her? Is too young to understand what autism is?

4:02 Lisa
4:03
Hi Lisa, This is Dr. Dawson. This would be a good time to explain your younger child’s autism to your daughter. She is old enough to understand and it will help her explain her brother’s unusual behaviors to her friends. Check out these links on Autism Speaks’ website that provide resources for siblings.

4:03
4:03
[Comment From GuestGuest: ]What are your thoughts about the value of weighted blankets and weighted lap pillows? My 11 year old son was diagnosed with Aspergers in the 1st grade. His biggest challenge is the ADHD symptoms for which his physician put him on Ritalin. I, however, prefer non-drug methods when possible. He also suffers from sleep issues and is rarely rested… I made him a lap pillow from rice and an old pillow case and he says it “works” but sometimes he just tries to tell me something works because he thinks that’s what I want to hear… I don’t have time (or skill) to make a (safe) weighted blanket, but didn’t want to spend $ on one if it may not be helpful… any other suggestions?

4:03 Guest
4:04
Dear Guest: This is Dr. Horrigan. My experience with weighted blankets has been hit-or-miss. Sometimes they are helpful when there is a clear-cut degree of tactile defensives or if just-the-opposite (flat-out seeking of pressure/contact/hugs/body contact) is present, but you don’t know if it will help until you try it. I would try going up progressively on the weight (e.g. adding progressively more amounts of rice), and asking your son in a clear manner how it feels, if he likes it. If his answers are fuzzy or unconvincing, I wouldn’t persist. They are not for everyone, and I know the branded products can be expensive.

4:04
4:05
From S. Wong
Hello, I have a question regarding my 6 year old son with Autism, who has many food allergies. In a routine urine dipstick and culture test at his Pediatrician’s office in May 2011, we found out through 2 separate urine tests that he repeatedly has a small amount of blood in his urine, but no infection or fever. Again in a follow up in December 2011, he showed a trace amount of blood, in addition to a small amount of protein, with no other symptoms. I suspect that this is a chronic problem with my son, who eats a lot, but has not much weight gain(less than one pound) in the last 6 months. The pediatrician suggested a follow up urine test in a month, but she does not show concern about the small amount of blood and protein.
I would like to know if the blood and protein in urine is considered normal, and if not, what other tests should be pursued to determine the cause? The only supplement that my son is getting is Culturelle and methyl B-12 shots/ once every 3 days. Thank you!

4:05
4:06
SW: This is Dr. Horrigan. There are instances in which people can have a very small amount of blood in the urine and it is not associated with a disease or disorder, and the same would be true for a small amount of protein. What is seen when the urine is looked at under a microscope is important, as is the result of blood tests such as creatinine and BUN. This helps determine whether more substantial testing (e.g. renal ultrasound, or other type of imaging, or maybe even a biopsy) is needed. Also, I would want to know if your son is anemic (low red blood cell count), and whether that influenced your decision to implement methyl B-12. In terms of growth, it would be good to know if your son is staying on his height growth curve, and the degree to which he has shifted away from his normal weight curve – this CDC web site gives an example of the curves that I am talking about (http://www.cdc.gov/growthcharts/data/set1clinical/cj41l021.pdf ).

4:06
4:07
Advance question from Shane: I currently work for an agency that offers an intervention program for infants and toddlers with autism. The program is family-focused in that the vast majority of intervention is aimed at teaching the parents how to intervene, rather than the more traditional aide-based model. In our view, the family is the centre of a child’s life. Teaching parents how to support their child independent of external supports is the greatest strength of our intervention program. However, this model is not without barriers. The most notable barrier to providing this intensive parent intervention is that many of the parents are only weeks from their child’s diagnosis and have yet to adjust to how their life will be different having a child with autism. Understandably, many of the families are simply not ready to participate in the intensive training; they are often not in the right ‘head space’ to participate in the intervention process and would rather Aides provide the support. What advice would you offer to families who find themselves in this moment in their lives? Further, what strategies would you offer to the staff of the organization in finding the balance between helping to support the family while maintaining the intensive philosophy of the parent-focused intervention?

4:07
4:08
Hi Shane. This is Dr. Dawson. It is important to meet parents where they are as you begin your work together. First, if a parent is showing signs of depression or anxiety or is having significant marital distress, referral to a specialist –either a physician or psychologist working in these areas – is recommended. Second, talk with the parent about the things that matter most to his or her. What does the parent find most challenging right now? Is it the inability to communicate? Is it a problem with eating? Is their child having frequent tantrums or aggressive behavior? Start by having the parent identify an area of concern and then help him or her learn strategies for dealing with that concern. If needed, start slow and establish very small goals so that the parent can quickly experience success. It could be as simple as finding appropriate toys or establishing a bedtime routine. Once a parent sees progress – however small – this usually helps alleviate stress and increases optimism and motivation.

4:08
4:09
[Comment From MichelleMichelle: ]Hi! I have a 9 year old son with autism. Lately his flapping has gotten really bad. He flaps near his hear so bad that his ears get red and he scratches his neck. I don’t see any other symptoms that are out of the ordinary, could this just be a phase or should I be concerned? Any suggestions?

4:09 Michelle
4:11
Dear Michelle: This is Dr. Horrigan. Yes, it could just be a phase, as you suggested, but I am wondering if your son is choosing this specific reptetive behavior for a reason. What is coming to mind is whether he has an ear problem; I am thinking about everything from lots of itchy ear wax to a foreign object (e.g. bead in the ear canal) to an ear infection. Has your son’s pediatrician been able to use an otoscope to look in his ears? Otherwise, it will be important to determine the context in which the flapping is occurring, to see if there is a behavioral manuever that can be implemented to redirect it before it gets too severe…

Thursday January 5, 2012 4:11
4:12
Hello. My name is Annette. I am a mother of eleven children. Seven boys… four girls, three of my boys are Autistic, ages 12, 11 & 9. My oldest daughter passed away in a car accident on Dec. 04-11. I explained to my children all at the same time about the death of their sister. I wonder if my three boys really understand what happened and what it means that their sister is now in heaven??? Please help me understand if there is a way to explain it to them that I might try. It’s kind of like the Groundhogs Day movie…. repeating itself over and over with my boys. Thank you

4:12
4:13
Hi Annette. This is Dr. Dawson. I am really sorry to hear about your daughter’s death. You have your hands full with so much responsibility. This must be a very difficult time for you. If your three boys are asking you about it again and again, then you do want to help explain what happened. I suggest you create a “social story” – in other words – a set of pictures that illustrate that their sister was in an accident and her body stopped working and she is now in heaven. Remember that kids with autism are very literal. They may have a hard time understanding that she won’t come back. Even though they are 12, 11, and 9, their ability to understand what happened will be more like a preschool age child. Here is a website that explains how to talk with a preschooler about death: http://www.babycenter.com/0_how-to-talk-to-your-preschooler-about-death_65688.bc?page=2#articlesection2 . Even though it is tiring to respond to their questions again and again, calmly reiterate what happened. Be sure to find the support you need. There are local support groups, as I am sure you know, for parents who have lost a child. Talking with other parents and professionals will help guide you and provide support.

2 4:13
4:14
Advance question from Sheetal: Do autistic babies/toddlers often start to babble much later than typical babies/toddlers and does their babbling differ in any way. Why do teachers and speech therapists often say that it’s a “positive sign” when an autistic baby/toddler produces consonant sounds in babbling even when they have not begun to speak any words yet?

4:14
4:15
Hi Sheetal. This is Dr. Dawson. Studies have shown that infants and toddlers with autism are delayed in babbling and, when they do babble, often they don’t make the same sounds as a typical baby. They make fewer consonant-vowel sounds, such as da-da and ba-ba. Babbling sounds are the building blocks for language, so it is a very positive sign when a toddler with autism begins making these sounds. Therapy can then build on these sounds to “shape” them to become simple words. For example, ba can eventually become ball. When a toddler with autism makes sounds, it is important to reinforce them by imitating them and playing sounds games

4:15
4:16
Comment From Andrea:
Hi Doctors! I have a 22 month old daughter who has been getting aba therapy since she was 18mos.Research has shown that 40 hours a week of therapy gives the best results. So why is it that all of my daughter’s providers don’t agree? She is currently getting 6 hrs a week of aba which will be increased to 10 and we will be adding 1.5 of speech too.

4:16
4:17
Hi Andrea, This is Dr. Dawson. Although early studies on ABA were based on 40 hours of therapy per week, more recent studies have used fewer hours with positive outcomes. For example, in a study that my colleagues published in 2012, toddlers received 20 hours of therapy from a trained provider and parents provided additional help at home by using the therapeutic techniques during their daily routines. The National Research Council, a body comprised on independent experts that inform policy, recommended that young children with autism receive 25 hours of structured intervention each week. This can be comprised of different therapies (ABA, speech-language, and so on). For more information, download Autism Speaks 100-day-kit (http://www.autismspeaks.org/family-services/tool-kits/100-day-kit).

4:17
4:18
Advance question from LS: Not to identify myself and anger my family involved… may I just ask: Could it be possible that a parents life, pre-parenthood, be responsible for creating risk factors of autism in future children? Such as, doing a large amount of drugs in adolescents and early adulthood? Or just certain kinds of illegal drugs being more likely than others to effect their reproductive organs, in either or both future parents?

4:18
4:19
LS: This is Dr. Horrigan. “Epigenetics” is an emerging field that examines the factors that influence whether or not a gene or genes are biologically active. This is different from the study of “genetics” which tends to focus on whether a particular gene or a version of a gene is present or absent. We now know that a wide range of factors such as substance abuse (e.g. cocaine) to stress (which can raise internal levels of hormones that can impact gene expression) are important epigenetic influences, in general, and they can play a material role in the expression of subsequent psychiatric disorders as well as medical illnesses. However, the study of relevant epigenetic factors in autism is at an early stage, and it is too soon to make definitive statements about the role of particular influences such as substance abuse in parents. I anticipate that several relevant epigenetic factors that can clearly influence autism expression will become evident within the next decade, as this is a focus of a lot of ongoing research.

4:19
4:19
[Comment From clairclair: ]i have a 17 year old daughter who is severly autistic and over the last year has displayed rapid cycling behaviour how difficult is it to seperate mental health problems from the autism?

4:19 clair
4:21
Dear Clair: This is Dr. Horrigan. I have to leave in a moment, but I think the best approach is to systematically gather data to look at your daughter’s pattern of cyclist. Then you would look for whether there are environmental/programmatic/contextual things that are occurring that sync up with the times when things are going bad. If not, you then think about psychiatric (or neurological) co-morbidities. For example, bipolar disorder certainly has a cyclical pattern, when it is actually present, and we look carefully at the specific behavioral changes that occur to see if they fall into the manic/hypomanic spectrum before rendering that diagnosis. To make that diagnosis, a family history of mood disorders is also critically important, as is the presence or absence of common accompanying medical difficulties such as migraine headache, atopic disorders (e.g. eczema) and asthma…as examples…. also it would be good to assure that features of a seizure disorder are not present (e.g. complex partial seizures)…this would require a formal neurological evaluation…as a final note, we oftentimes use anti-seizure medicines to treat bipolar disorder

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4:23
Advance question from María in Argentina:
Thank you for this opportunity. I live outside USA but I do think that the situation is similar to USA in these topics
1-Why the psychiatric paradigm is considered the most helpful when there are many unmet needs in families with children diagnosed with ASD of Concomitant medical problems (CMPDs) from immune dysfunction to abnormal answer to strep/herpes infections through GI problems?
2- Why the Early intervention programs do not include biological exploring of CMPs as a routine- not the usual ones, but considering the state of the art in the abnormalities of different subgroups of children with ASD? The combination biology-education has been the most helpful to us in practice- not the psychiatric-genetic.
3-Why are there not efforts to include protocols in practice that take into account the CMPs in children diagnosed with ASD?
4-Why the inflammation and oxidative stress are not routinely explored and treated if present in different subgroups of ASD children?
5-What efforts are being done to these problems to be addressed in practice ?

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Hi Maria, This is Dr. Dawson. What we now know is that autism is not solely a dysfunction of the brain. It affects the whole body. Autism is associated with a wide range of medical conditions, including as you point out, gastrointestinal problems, oxidative stress and metabolic problems, such as mitochondrial dysfunction, among others. In addition, it is important to screen for exposure to toxins, such as lead and others. Autism Speaks Autism Treatment Network (http://www.autismspeaks.org/science/resources-programs/autism-treatment-network) is devoted to understanding and treating these medical conditions. In addition, we are funding studies on immune dysfunction and infections, mitochondrial dysfunction, oxidative stress, exposure to toxins, and so on. We are investigating biomarkers that could identify children who have specific medical conditions. If these medical conditions are not addressed, we know that children cannot fully benefit from educational and behavioral interventions. Medical conditions can also contribute to problems with aggressions, self-injury, and attention difficulties. Treating the “whole child” is essential to any intervention program and requires a multidisciplinary team.

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Advance question from STACY: Can an aspergers diagnosis be made if there are minimal to no repetitive behaviors present and the child has some language impairments?….language was slightly delayed but really just more scripted with echolalia till therapy interventions. Language is much more meaningful now. I would like to discuss this with my son’s developmental ped but just wanted some more info first.

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Hi Stacy, This is Dr. Dawson. Children with Asperger syndrome do not show significant cognitive and language impairments, although slight delays in language are possible. To qualify for a diagnosis of Asperger syndrome, there needs to be evidence of a restricted range of interests/activities or repetitive behaviors, although this can be manifest in many different ways. I recommend that you talk with your doctor about getting a referral to a clinician who specializes in the diagnosis of Autism Spectrum Disorders. To find one in your area, visit Autism Speaks Resources page (http://www.autismspeaks.org/family-services/resource-guide).

4:26
4:27
Thank you all SO much for joining us. Please join us next month, Feb. 2, and every first Thursday at 3 pm Eastern. Be well!

4:27
Categories: Got Questions?, Science, Uncategorized Tags: , , , , , , , , , ,

Can Topotecan Relieve Angelman Syndrome?

December 21, 2011 6 comments

Posted by Eileen Braun, executive director of the Angelman Syndrome Foundation, and Joe Horrigan, M.D., Autism Speaks assistant vice president and head of medical research

Today brings the publication of findings on a group of compounds whose potential for treating Angelman syndrome deserves both kudos and cautious optimism. This rare condition, often classified as an autism spectrum disorder (ASD), is marked by developmental delays, lack of language, seizures and difficulties with balance and walking. Many individuals with Angelman syndrome require lifelong care.

In research initially funded by the Angelman Syndrome Foundation, neurobiologist Ben Philpot and his team at the University of North Carolina, Chapel Hill, screened over 2,300 compounds to find several that, in mice, activate production of a brain protein whose absence causes Angelman syndrome in humans. The tremendous public interest in this report stems from the fact that one of the compounds identified in the paper is available as an FDA-approved chemotherapy drug (topotecan, or Hycamtin) for small cell lung cancer that fails to respond adequately to first-line treatments. [See our related news report, “Topoisomerase Inhibitors and Angelman Syndrome.”]

While we are heartened by the UNC team’s identification of potential medicines for the treatment of Angelman syndrome, we are deeply concerned that this news could produce  expectations that lead some families to prematurely seek this drug for their loved ones–that is, before it is safe to do so. As a community, we should welcome the news, but we cannot let it risk unintended harm by side stepping the proper due course of research. The next phase of research is critical to assessing safety and effectiveness.

Our concerns are several-fold: First, the findings from this study represent a very early stage of the drug discovery process. As the UNC scientists are quick to point out, they have yet to determine whether these compounds actually relieve symptoms in animal models of Angelman syndrome—let alone whether they can benefit children or adults affected by this disorder. Along the same lines, it is unclear if medicines like topotecan affect human cells in the same way that they affect the cells of mice. In addition, these agents can have serious side effects. For example, we must remember that chemotherapy drugs such as topotecan are designed to kill cells—primarily cancerous ones, of course. But they also affect healthy cells. Potential side effects of topotecan include bone marrow suppression, which is associated with a sometimes dramatic decrease in the production of blood cells. In addition, topotecan can cause fetal harm when administered to a pregnant woman.

On a practical level, determining an effective but safe dose of a medicine like topotecan can be difficult for even a cancer specialist. Also, a medicine like topotecan was not designed for use over extended periods of time, but rather as one of the last resorts for patients with a deadly form of cancer that does not respond adequately to other treatments. All of these factors need to be considered carefully by the readers of this important paper by Dr. Philpot and his colleagues.

We feel it is especially important to view this study’s promising findings in the light of other experimental medicines now entering the autism research pipeline. We look forward to these potential medical treatments being carefully studied for safety and effectiveness first in animal models and human tissue samples. Only then should the safest and best candidates be considered for advancement into clinical trials.

The critical point is that there are no short cuts to drug development when it comes to safety.

This raises a second, very important issue for our families. As promising as any experimental medicine may be, one needs to carefully consider what it means for you or your child to be part of a clinical drug trial. The potential benefits and risks associated with being a research participant can be quite different from those experienced as a person receiving medical care from a personal physician or other healthcare professional. As a result, the decision to become a research participant should be approached with careful thought and discussion.

For these reasons, we’re working together to create a “Participant’s Guide to Autism Drug Research.” Please look for its release on this science blog and on the “Participate in Research” page of Autism Speaks website in the coming weeks. You can also stay up-to-date with this research as it relates to Angelman syndrome via the Angelman Syndrome Foundation’s website at www.angelman.org.

Have more questions? Send them to GotQuestions@autismspeaks.org and bring them to “The Doctors Are In,” our monthly live webchat with clinical psychologist and Autism Speaks Chief Science Officer Geri Dawson, PhD, and her co-host, pediatric psychiatrist and Autism Speaks Head of Medical Research Joe Horrigan, MD. 

Categories: Got Questions?, Science, Uncategorized Tags: , , , , , , , , ,

Are there effective medicines for treating core autism symptoms?

December 9, 2011 12 comments


This week’s “Got Questions” answer comes from Joseph Horrigan, MD, Autism Speaks assistant vice president, head of medical research.

First, it’s important to note that medicines for treating autism are most effective when used in conjunction with behavioral therapies. Ideally, medicines are a complement to other treatment strategies.

Medicines for treating autism’s three core symptoms—communication difficulties, social challenges and repetitive behavior—have long represented a huge area of unmet need. Unfortunately, few drugs on the market today effectively relieve these symptoms and none of the options most often prescribed by practitioners work well for every individual.

In fact, while the Food and Drug Administration (FDA) has approved two drugs for treating irritability associated with the autism (risperidone and aripiprazole), it has yet to approve a medicine for treating autism’s three core characteristics. Nonetheless, medicines such as risperidone and aripiprazole can be beneficial in ways that can ease these core symptoms, because relieving irritability often improves sociability while reducing tantrums, aggressive outbursts and self-injurious behaviors.

The good news is that the range of medication options may soon change, thanks to recent advances in our understanding of the biology that produces autism’s core symptoms. This has made it possible for researchers to begin testing compounds that may help normalize crucial brain functions involved in autism. Early experiments suggest that several compounds with different mechanisms of action have great potential for clinical use, and many are now in clinical trials. [This link takes you to the search engine of the NIH clinical trial network, with results under the search term “autism.”]

Although these developments are exciting and hold real promise for bettering the lives of people with autism, we will have to wait at least a few more years before we know if any of these drug studies produce enough information on safety and effectiveness to merit FDA approval for the treatment of core symptoms.

Today, most medicines prescribed to ease autism’s disabling symptoms are used “off label,” meaning that their FDA approval is for other, sometimes-related conditions such as attention deficit hyperactivity disorder (ADHD), sleep disturbances or depression. Such off-label use is common in virtually all areas of medicine and is usually done to relieve significant suffering in the absence of sufficiently large and targeted studies.

An example in autism would be the class of medicines known as selective serotonin re-uptake inhibitors (SSRIs), including fluoxetine. Several of these medicines are FDA-approved for the treatment of anxiety disorders and depression, in children as well as adults. Although large clinical trials have yet to demonstrate their effectiveness, parents and clinicians have found that they can  ease social difficulties among some people with autism. However, it has proven to be difficult to predict which medicines in this class may produce the greatest benefit for a given patient with autism. Similarly, determining the best dose can be quite challenging.

Another example would be naltrexone, which is FDA-approved for the treatment of alcohol and opioid addictions. It can ease disabling repetitive and self-injurious behaviors in some children and adults with autism.

These medicines do not work for everyone, and all medicines have side effects. And as noted above, each person may respond differently to medicines. In addition, changes in response to a medicine can occur as time goes on, even when the dose is not changed. Over time, some people develop tolerance (when a drug stops being effective) or sensitization (when side effects worsen).

Because using these medications in children and adolescents can be a difficult decision for parents, you may find it helpful to use our Medication Decision Tool Kit, a guide for actively working with a physician to find the approach that fits best with your values and goals. You can download it free here.

These are exciting times in the development of new medicines for relieving autism’s most disabling symptoms, and Autism Speaks is increasing its funding and focus in this promising area, while placing great emphasis on ensuring the safety of promising new medicines. Please stay tuned!

Read more science news and perspective on the Science Page.

Categories: Got Questions?, Science Tags: , , , , , , , , , , , ,

Meet Joseph Horrigan, MD, Autism Speaks’ New Assistant Vice President of Medical Research

October 28, 2011 9 comments

Posted by Joseph Horrigan, MD, Autism Speaks assistant vice president of medical research.

In introducing myself to the wider Autism Speaks community, I’d like to start by conveying how thrilled I am to be part of its mission. It’s an exciting time for autism research, especially when it comes to finding  new treatments for autism spectrum disorders (ASDs).

Today, we know so much more about the biological mechanisms behind ASDs than we did just a few years ago. We are now poised to make a big leap forward in the development of new medicines and therapies that address the core symptoms. I’m so grateful to be part of an organization that’s leading the charge.

I came to Autism Speaks after almost ten years helping pharmaceutical companies such as GlaxoSmithKline develop clinical trials for safely and effectively testing pediatric drugs for conditions such as bipolar disorder, attention-deficit/ hyperactivity disorder (ADHD), and autism spectrum disorders (ASDs). I have also led clinical programs testing new medicines for chronic diseases such as  multiple sclerosis, Alzheimer’s disease, and schizophrenia. These experiences have given me valuable insights into the process behind bringing new medicines through the clinical trial process and into the hands of doctors.

Above all, however, I see myself as a physician. As a child psychiatrist, I care for people who face complicated clinical challenges. Since 1992, I have consulted at a residential treatment facility for children, which I continue to do on a pro bono basis. About a third of the youngsters I care for have ASDs, and I have always loved working with them. Their families are so motivated and passionate, and I enjoy the partnership of working with them, often shoulder to shoulder, to optimize treatment and outcomes.

And I’m most satisfied when we can craft a treatment program that fits a child’s unique needs. I’ll admit, it’s seldom an easy task—given the complexity of ASDs.

As a parent of two children who have experienced significant illnesses, I feel particular empathy for the distress family members feel when treatments fail to provide adequate relief for their loved ones. This inadequacy redoubles my passion for expanding and improving the treatment options available for ASDs. Working with Geri Dawson, Rob Ring and the many passionate scientists at Autism Speaks, I truly believe we will make tremendous progress in the years ahead.

In the last five years, we have greatly advanced our understanding of the underlying biological mechanisms of ASDs. Scientists have not only identified genetic changes associated with autism, but have gone far in understanding how these changes affect the internal workings of brain cells as well as brain development. Such insights open the door to the discovery and development of safe and effective new medicines and other interventions.

Five years from now, I anticipate seeing the many tangible ways that all of us at Autism Speaks—including our families, friends, donors, and volunteers—have helped accelerate the development of better medicines and other tools that truly improve the lives of those on the autism spectrum.

I’ve been following Autism Speaks since its genesis in 2005, and I can’t think of a better team of people for the job. I’m honored to be on the same team with you all. Let’s get started!

Categories: Science, Uncategorized Tags: , , , , ,
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