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How common are anxiety disorders in people with autism, and are there effective treatments?

January 6, 2012 14 comments

This week’s “Got Questions” answer comes from Rob Ring, PhD, Autism Speaks vice president of translational research.

Without question, anxiety is a real and serious problem for many people on the autism spectrum. We hear this from parents, teachers and doctors, as well as from adolescents and adults with autism spectrum disorder (ASD). This disabling anxiety can take the form of one or more disorders, including panic disorder and phobias.

A recent review of scientific studies on autism and anxiety revealed that we have no clear gauge of how commonly anxiety disorders overlap with autism. A few small, relatively short-term studies have produced starkly different results: from 11 percent to 84 percent. (For comparison, the prevalence of anxiety disorders among the general population is about 18 percent.) A reliable estimate will require a study that tracks many more individuals with autism over longer periods of time and that considers the distinctive way that anxiety oftentimes expresses itself in those affected by ASD.

Fortunately, Autism Speaks is funding the Autism Treatment Network, which collects systematic data on a wide range of medical conditions, including anxiety disorders, in children with ASD.  This data will help us better understand the proportion of people with ASD who are suffering from anxiety symptoms.

Meanwhile preliminary studies have provided insights. They suggest, for example, that adolescents with autism may be particularly prone to anxiety disorders, while younger children on the spectrum may not differ at all from the average population. Some studies likewise suggest that high-functioning individuals on the spectrum experience higher rates of anxiety disorders than do lower-functioning individuals. Still we must emphasize that these results are preliminary. We don’t know nearly as much as we should about how anxiety disorders affect those with autism.

recent review of studies found that behavioral interventions can help many children and adolescents with autism who also struggle with anxiety. Along these lines, some studies  suggest that cognitive behavioral therapy can be particularly helpful for high-functioning adolescents and adults with autism and anxiety. We will explore behavioral interventions further in a future “Got Questions?” blog. My own expertise is in the medical treatment of anxiety in persons with ASD.

Currently, we have no medications approved by the Food and Drug Administration (FDA) expressly for the treatment of anxiety in children, adolescents or adults with autism. Some classes of drugs commonly prescribed for treating anxiety disorders in the general population likewise help some of those on the autism spectrum. These include the selective serotonin reuptake inhibitors (SSRIs) such as Prozac. For those with autism, anxiety drugs are best used in combination with behavioral interventions. Among high-functioning individuals, they may be particularly effective when combined with cognitive behavioral therapy.

However, some doctors report that anti-anxiety medications seem to be less effective overall in people with autism spectrum disorder than they are in the general population. This observation needs to be verified with controlled research. It suggests the possibility that the biological root of anxiety in those with autism may differ from the “norm” and, as a result, may respond best to different treatments.

At Autism Speaks, we are actively supporting research into anxiety disorders and other medical conditions frequently associated with autism. This includes both basic research on the underlying biology of autism and the safe development of drugs that can relieve disabling symptoms and improve quality of life.

If you are considering anti-anxiety medication for a child with autism, our recently published Medication Decision Aid can help you work with your child’s physician to sort through the pros and cons in the context of your values and goals for your child. You can learn more about the medication tool kit and download a free copy, here.

Got more questions? Send them to GotQuestions@autismspeaks.org. And bring them to  our next webchat with Autism Speaks Chief Science Officer Geri Dawson, Ph.D., and  Autism Speaks assistant vice president and head of medical research Joe Horrigan, M.D. More information on their monthly webchats here.


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

4:21

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 ?

4:23

4:24
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.

4:24

4:25
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.

4:25

4:26
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

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. 

Autism Boom: An Epidemic of Disease or Discovery?

December 16, 2011 24 comments

Today’s “Got Questions?” answer is from Autism Speaks Chief Science Officer Geri Dawson, Ph.D.

Earlier this week, the LA Times ran a provocative article under the questioning headline above. It suggested that autism’s twentyfold increase over the last generation may be “more of a surge in diagnosis than in disease.” In fact, scientific evidence suggests that autism’s dramatic increase is only partially explained by improved screening and diagnosis.

Some of the clearest evidence of this increase comes from research documenting a 600 percent jump in autism caseload in California between 1992 and 2006. In related studies (here and here), Peter Bearman estimated that around 42 percent of the increase can be explained by changes in diagnostic methods and awareness with another 11 percent possibly due to increases in parental age at the time of conception (a known risk factor).

Taking into account all the factors that have been studied, this leaves approximately half of the increase due to still-unidentified factors. Through research, we’re increasing our understanding of these influences. For example, we now know that prematurity and extreme low-birth weight increase autism risk in babies. Certainly survival rates for premature and very low birth weight infants have increased considerably over the last twenty years.

While no single factor is likely to explain the marked increase in autism’s prevalence, researchers agree that a number of influences likely work together to determine the risk that a child will develop an autism spectrum disorder (ASD).

Bottom line: It is undeniable that more children are being diagnosed with ASD than ever before. The need for increased funding for autism science and services has never been greater. Autism costs society is a staggering $35 billion per year. And with more cases, that figure is likely to increase. Fortunately, there is clear evidence that earlier identification and intervention and supports throughout the lifespan can improve outcomes and quality of life.

If you are concerned about your child’s development, please see the “Learn the Signs” page of our website. If you are an adult struggling with issues that might be related to autism, please follow the hyperlinks to our resource page for adults and our page on Asperger Syndrome.

Got more questions? Send them to GotQuestions@autismspeaks.org. And join our next live webchat with Dr. Dawson and her co-host, Autism Speaks assistant vice president and head of medical research Joe Horrigan, MD on January 5th. More information on their monthly webchats here.

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.

How can visual supports help children and adolescents with autism spectrum disorder?

December 2, 2011 1 comment

In a recent blog post on helping nonverbal children communicate, we let you know that our Autism Treatment Network (ATN) would soon publish a pamphlet on visual supports. Yesterday, we were pleased to release Visual Supports and Autism Spectrum Disorders, available for free download on our website. For perspective on its usefulness, today’s “Got Questions?” comes from the pamphlet’s authors:

 Clinical Psychologist Whitney Loring, PsyD, and

 

 

Behavior Analyst Mary Hamilton Morton, MEd, BCBA.  

Both work within the ATN at the Vanderbilt Kennedy Center’s Treatment and Research Institute for Autism Spectrum Disorders (TRIAD), in Nashville.

While working with hundreds of families of children with autism spectrum disorders (ASD), we have seen firsthand the benefits of visual supports. For some families, these tools bring immediate improvements in how their child and family function on a daily basis. Others find they need a few weeks working with these supports to see clear benefits emerge. Either way, they report significant improvements in their children’s communication and understanding, as well as increased compliance, adaptive behaviors and independence, along with decreases in challenging behaviors.

We are definitely believers in the power of visual supports!

Yet many of the families who come to us have yet to be introduced to these valuable tools. Some parents have heard that they should use visual supports. But they admit to not exactly understanding the term, where to begin, or why visual supports are important in helping their children communicate and understand others.

Often, we find ourselves explaining visual supports in the midst of answering the many other questions and concerns a family brings to us. As a result, parents may leave our clinic with “visual supports” being just one of many things they’re trying to remember and implement on their own.

Ironically, we came to realize that part of the problem was that we were attempting to explain visual supports quickly and verbally without having a visual way to communicate their importance!

Our answer is the newly released Visual Supports and Autism Spectrum Disorders, a step-by-step, easy-to-understand introduction to visual supports and the ways that parents and other caregivers can begin using them.

The pamphlet provides practical examples of how to begin integrating visual supports into a child’s daily routines. We’ve also included a variety of actual visual supports for parents to print, cut out and use, along with links to resources that provide more detailed information for those who want to go further.

So far, the response from families “test driving” this tool has been overwhelmingly positive, and the enthusiasm is not just from those new to visual supports. Some parents tell us, for example, that the guide helps them explain visual supports to other important adults in their child’s life—from grandparents to teachers and doctors.

We hope this pamphlet will help empower parents in both how they use visual supports and how they expand use among others who care for and work with their children. And we hope you find this tool useful in ways that make a positive difference for your child and your family. Of course, we continue to learn from you, as well. Please let us know more about how your family uses visual supports by leaving a comment on this blog and/or sending us an email at atn@autismspeaks.org.

Development of this tool is the product of on-going ATN activities. To learn more about the ATN or find a site in your area, please visit www.autismspeaks.org/atn. For more tools for parents, grandparents and clinicians or to find resources in your area, also visit our ATN Tool Kits page and Autism Speaks Family Services

How does research help my child today?

November 25, 2011 3 comments


 Today’s “Got Questions?” reply comes from Rebecca Fehlig, Autism Speaks national director of field and chapter development

I still remember the day in 2009 when I was sitting in the committee hearing room of our state capitol. We were waiting for the next parent to testify in favor of our Autism Insurance Reform bill—in its second year of battle here in Missouri. Many moms and dads sat in the back with me, clutching their note cards, printed testimonials and handwritten pages. Though we were all nervous, we were eager to tell our stories to the legislators whose decision could make such a huge difference in our children’s lives.

Megan was a local volunteer, autism advocate and parent of two children, one of whom (Henry) has autism. Her hands were shaking a little, but she delivered her message in a calm and confident voice. She was confident the legislators would respond to her personal testimony. Megan explained that she was in extreme debt, had declared bankruptcy and had to sell her home—all to pay for Henry’s autism behavioral treatment. But Megan was not there to complain. She wanted to share Henry’s progress and positive outcomes. Thanks to more than 20 hours a week of early behavioral intervention, Henry had uttered his first words. She told the legislators that her financial sacrifices were well worth that precious reward. But she asked that other families not have to sell their homes and declare bankruptcy for their children to receive treatment for autism. I was not the only one wiping tears at the end of her story.

But the next individual who testified opposed our Autism Insurance Bill. He represented an insurance provider, and he used the same argument that insurance lobbyists were feeding the legislators across the country. “Although we empathize with Megan’s struggle,” he said, “the simple fact is that behavioral therapy is an experimental treatment for autism.” He said it was reckless for insurance providers to pay for experimental therapies and that despite Henry’s improvement, there was no predicting whether other children would benefit.

His words produced gasps around the room. My heart sank.

But wait, this is where the story gets good. Next, Lorri Unumb, Autism Speaks vice president for state government affairs, took the stand. She too shared the progress of her son from intensive applied behavioral analysis (ABA). But it was the next part of her testimonial that every legislator in the room heard loud and clear.

Countering the insurance industry testimony head-on, Lorri stated unequivocally, “ABA is not experimental!” And she had the published research studies to back up her statement.

It didn’t matter whether the studies were done in Missouri or another state. Each study had been vetted and published by a leading scientific journal. The evidence made clear that ABA is far from experimental, and it demonstrated the importance of early intervention in producing the most successful outcomes.

The Missouri House of Representatives voted our bill out of committee that day. It went on to our governor’s desk to be signed into law—all because we had the scientific research to back up our efforts.

Never before had the importance of funding research become so clear to me!

Currently Autism Speaks is funding additional studies that can provide a firm foundation for our advocating that insurers cover additional types of behavioral therapy–such as social skills training, infant-toddler interventions and cognitive behavioral therapies focused on social and communication skills.

And that’s crucial because the downside to our story was that the Missouri bill mandated coverage for some but not all autism treatments. Many more treatment options need to be further investigated to ensure they are safe and produce tangible benefits for those who struggle with autism.

The great news is that Autism Speaks just funded $1.8 million in treatment grants that will further our understanding of the most promising new interventions—not only for children but for all those on the spectrum—from early intervention therapies in underserved communities to job interview training for adults.

We look to these studies to give us the ammunition we’ll need the next time we are sitting in front of a room full of government decision makers. And they would not be possible without your support at our Walks and other fundraisers.

When it comes to helping our children and all those with autism, scientific evidence of benefit puts us on the road to affordable access to therapy. And that means better outcomes. This is what our families deserve and our mission supports.

Autism Speaks continues to work for state-mandated medical coverage for autism interventions. To date, its advocacy efforts have helped secure autism insurance reform laws in 29 states. To learn more about Autism Speaks advocacy efforts, please visit http://www.autismvotes.org.

For more news and perspective, please visit the Autism Speaks science page.

What is mitochondria disease? What does it have to do with autism, and are there treatments?

November 18, 2011 22 comments

This week’s “Got Questions?” answer comes from Deepa Menon, MD, assistant medical director of the Center for Autism and Related Disorders, at Baltimore’s Kennedy Krieger Institute—an Autism Speaks Autism Treatment Network (ATN) site. Her research interests include metabolic and mitochondrial disorders and their association with autism.

Mitochondria are cell structures, or “organelles,” whose primary function is to supply a cell with energy. In essence, they turn sugar and fatty acids from food into the energy-carrying molecule adenosine triphosphate (ATP).

Virtually every cell in the body depends on ATP and mitochondria for energy. As a result, mitochondrial disorders can produce a wide variety of symptoms. The most common involve body systems that use a lot of energy. Muscles are a classic example, and mitochondrial dysfunction often produces muscle weakness and fatigue. When mitochondrial dysfunction affects the gastrointestinal system, symptoms can include constipation or diarrhea. When it affects the immune system, it can lead to frequent infections. Mitochondrial disorders can likewise cause failure to grow, kidney dysfunction and a many other medical problems.

The brain is another energy-demanding system. Here, mitochondrial dysfunction can produce such symptoms as developmental delay, hearing problems and seizures.

Over the last decade, there has been great interest in the possibility that mitochondrial disorders may underlie some of the symptoms of autism spectrum disorder (ASD). Currently we believe that around 5 to 10 percent of children with autism have mitochondrial dysfunction as the underlying cause of their symptoms.

Research suggests that many children diagnosed with autism and underlying mitochondrial dysfunction experienced regression following a simple childhood illness (ear infection, common cold, etc.) or other cause of fever or inflammation. Regression refers to a loss of developmental skills such as language or motor abilities. It may be accompanied by other symptoms of mitochondrial disorder such as fatigue, gastrointestinal distress, seizures and/or motor delays.

Laboratory testing of blood samples and urine show that many of these children (with ASD and mitochondrial dysfunction) have abnormally high  levels of certain amino acids and cellular waste products. This suggests that their cells are generating energy inefficiently with an excess of damaging byproducts.

When a child is diagnosed with ASD and mitochondrial dysfunction, treatment goals include a bolstering mitochondrial activity and protecting the mitochondria from further damage. Parents and affected individuals may be counseled to avoid (as much as possible) situations that stress mitochondria. Examples of these stresses include going for long periods between meals (prolonged fasting), infections that produce fevers, inflammation associated with dietary sensitivities and certain medications such as the antipsychotic haloperidol (Haldol), which is known to impair mitochondrial function.

Supportive treatment can include a prescription nutrient mixture containing the protein L-carnitine and the B-vitamin pantothenate, which is thought to bolster mitochondrial activity. This prescription mixture usually contains additional nutrients such as thiamine, nicotinamide, lipoic acid, and vitamins C and E. Coenzyme Q10 may be added for those who show low levels of CoQ10 on testing.

[Editor’s note: Autism Speaks continues to support research into the association of mitochondrial disease and autism and their effective treatments. For more information on these and other funded studies, please explore our Grant Search portal, here.]

Have a question? Email us at gotquestions@autismspeaks.org. For more news and perspective, please visit the Autism Speaks science page.

How helpful is the casein-gluten-free diet?

November 11, 2011 58 comments

 This week’s answer comes from pediatric gastroenterologist, Kent Williams, MD, of Nationwide Children’s Hospital, in Columbus, Ohio—one of 17 sites in Autism Speaks’ Autism Treatment Network.

Many parents of children with autism spectrum disorders (ASDs) report that behavior improves when their children eat a diet free of the proteins gluten and casein. Gluten is found primarily in wheat, barley and rye; casein, in dairy products. Last year, clinicians within Autism Speaks Autism Treatment Network (ATN) investigated the issue and found insufficient evidence of clear benefit.  We called for clinical studies, and these studies are now underway.

While we’re awaiting the results, it’s reasonable to ask what harm could result from trying a casein-gluten-free diet. Certainly, dietary changes can be worth investigating and trying, and many parents report improvements in behavior.  However, until more clinical studies are completed and more evidence of safety and benefit is available, parents who place their child on a casein-gluten-free diet need to take extra steps to ensure they do so in a safe and reliable manner.

First, when parents decide to try a casein-gluten-free diet for their child, I strongly urge them to consult with a dietary counselor such as a nutritionist or dietician. Although it’s easy to find casein-gluten-free dietary plans on the Internet, few parents—or physicians—have the experience and knowledge to determine whether a child’s diet is providing all the necessary requirements for normal growth and development.  Keep in mind that foods containing gluten and casein are major sources of protein as well as essential vitamins and minerals such as vitamin D, calcium, and zinc.

I recommend that parents bring the nutritionist or dietician a 3- to 5-day dietary history for their child (writing down what was eaten and how much) and have this reviewed to determine whether there is a real risk for nutritional deficiency.  The nutritionist or dietician can then work with the family to add foods or supplements that address potential gaps in nutrition.

After establishing a plan for a safe and complete diet, I encourage parents to set up a reliable way to measure their child’s response to the diet. This should start before the diet is begun, with a list of the specific behaviors that the family would like to see improve. Examples might include angry outbursts, inability to sit quietly during class, problems sleeping at night, or not speaking to others.

Next recruit teachers, therapists, babysitters, and others outside the family to help you objectively monitor these targeted behaviors and verify your perception of changes. If you reach a consensus that improvements are occurring, continuing the diet may be worth the cost and effort.

However, one should still question whether the improvements are due to the removal of all gluten and casein from the diet.  The changes might be due to removal of just one of these proteins. For example, some parents report improvement with a casein-free diet, and others report improvements with gluten-free diets.

In fact, the behavioral changes may be due to dietary changes other than the removal of casein or gluten.  For example, the improvement might be due to the fact that the new diet replaces processed foods high in sugar and fat with healthier foods such as whole grain rice, fruits, and vegetables.

These alternative explanations are important to consider because a strict casein-gluten free diet requires hard work and can be costly.  For example, it may be difficult for your child to eat from the menus in a school cafeteria or restaurant. Birthday parties present another challenge. As a parent, you’ll likely be faced with the task of sending or bringing special meals and treats when your child eats away from home.

Autism Speaks ATN continues to support research and clinical improvement endeavors on nutritional and on gastrointestinal issues associated with autism through the HRSA-funded  Autism Intervention Network for Physical Health.

Have a question? Please email us at gotquestions@autismspeaks.org.  Read more news and perspective on the Autism Speaks science page.


I see more headlines about autism risk and antidepressants in pregnancy. What am I supposed to do?

November 4, 2011 3 comments

This week’s ‘Got Questions?’ answer comes from Rob Ring, PhD, Autism Speaks vice president of Translational Research, and Joe Horrigan, MD, Autism Speaks assistant vice president, head of medical research.

To bring readers up to speed, the above question stems from two reports: In July, a group of California researchers reported a modest increase in the risk that a child would develop autism if his or her mother took selective serotonin uptake inhibitors (SSRIs) during pregnancy. The results were based on a very small sample of children exposed to antidepressants during the time their mothers were pregnant—just 20 children with autism compared to 50 without autism. This past month, another team of scientists reported that rats fed SSRIs as newborn pups exhibited abnormalities in brain development.

Given the great hunger for information about what causes autism, both studies made headlines. Unfortunately, the media stories may have served to alarm without putting these early and inconclusive scientific findings into perspective.

First and foremost, research with animals and investigations looking at a small number of cases are both important for guiding larger, more informative studies. But in and of themselves, these two particular studies don’t come close to reaching the bar at which scientific evidence is reliable enough to warrant a change in behavior. We feel this is particularly true of important medical decisions such as the need to treat depression, which can be a serious and life-threatening illness.

Take, for instance, the small number of children in the California study. This small “sample size” increases the likelihood that the results were due to chance or other unrelated factors. In other words, they may not represent real differences in risk. It is very common in science for such preliminary findings to vanish when researchers repeat the analysis with a larger, more “statistically significant” number of cases.

In addition, among women taking SSRIs, there may be other, hidden factors responsible for raising autism risk among their future children. For example, we know that anxiety is common among persons with an autism spectrum disorder (ASD). In fact, many of those who learn, as adults, that they have an ASD do so when they seek treatment for anxiety and/or related depression. A common type of medicine prescribed in these instances is SSRIs. We also know that ASDs tend to run in families. So it may be that family genetics—not SSRIs—produced the above-mentioned finding of a modest increase in the prevalence of autism among children whose mothers took these antidepressants during pregnancy.

And the rat study? While it’s useful for guiding the focus of further research, we simply can’t extrapolate results from rats to humans.

Finally, we worry about the consequences of women going off antidepressants when they truly need these medications. Certainly if a woman is pregnant or trying to become pregnant, she should discuss all her medicines with her physician—so that with guidance she can weigh the risks and benefits of continuing or discontinuing one or more of them. Certainly, a woman’s untreated depression can itself pose a danger to her pregnancy or newborn child. The bottom line:  If you have concerns regarding your medications during pregnancy, discuss them with your physician, who can help you make the best decision for you and your family.

We hope that we’ve lent some helpful perspective to this issue. Please keep your questions coming (GotQuestions@autismspeaks.org).

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