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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

Thank You Grandparents!

September 26, 2011 Leave a comment

In recognition of National Grandparents Day, on September 11th Autism Speaks is celebrating the  grandparent connection in families affected by autism. During the month of September, we are asking grandparents to share your experiences, so that other grandparents across the country can benefit from your knowledge and the road you have traveled.

We extend a special thank you on behalf of your grandchildren and your adult children for being a part of their lives. You have and will continue to make it easier for them to do what they need to do and provide for the best future possible for their family.

LIVE Q & A Transcript with Co-Founder Suzanne Wright

September 22, 2011 3 comments

Suzanne and Bob Wright are co-founders of Autism Speaks, the world’s largest autism science and advocacy organization. Inspired by the challenges facing their grandson, who suffers from autism, they launched the foundation in February 2005.

Suzanne has an extensive history of active involvement in community and philanthropic endeavors, mostly directed toward helping children. She is a Trustee Emeritus of Sarah Lawrence College, her alma mater. Suzanne has received numerous awards, the Women of Distinction Award from Palm Beach Atlantic University, the CHILD Magazine Children’s Champions Award, Luella Bennack Volunteer Award, Spirit of Achievement award by the Albert Einstein College of Medicine’s National Women’s Division and The Women of Vision Award from the Weizmann Institute of Science.

In 2008, Suzanne and Bob were named in Time 100’s Heroes and Pioneers category, for their commitment to global autism advocacy. They have also received the first ever Double Helix Award for Corporate Leadership from Cold Spring Harbor Laboratory, the NYU Child Advocacy Award, the Castle Connolly National Health Leadership Award and the American Ireland Fund Humanitarian Award. In the past couple of years the Wrights have received honorary doctorate degrees from St. John’s University, St. Joseph’s University and UMass Medical School – they delivered respective commencement addresses at the first two of these schools. The Wrights are the first married couple to be bestowed such an honor in St. John’s history.

The Wrights have three children and five grandchildren.

Click here to read A Grandparent’s Guide to Autism.

12:59
Hi – I’m Suzanne Wright – Co-founder of Autism Speaks and I’m so happy to be joining this web chat today!
1:00
Comment From James McDonald

Good Afternoon

1:00
Comment From sha

thankyou for your time

1:00
Comment From Lucas mom

hi

1:01
I’m here today as Christian’s grandmother – and I’d like to talk about my role as a grandparent and advocate.
1:01
Comment From donna

Good Afternoon all

1:02
We are so excited about our new toolkit which is a grandparent’s guide to autism which can be downloaded for free on our autismspeaks.org website.
1:03
Comment From Emily

Hi Suzanne, I have a brother with Autism and just want to say thank you for your time you put into Autism Speaks.

1:04
Hi Emily.  Thanks for your kind words – I do this for Christian and for all families and individuals affected by autism.  Thanks for joining our discussion today.
1:06
Comment From Lalania Lind

I have a question. Did your family find it hard to get help from the education system for Christian?

1:09
Hi Lalania – very much so. Here is a guide that we provide from autism speaks – a School Community Tool Kit which can give you some advice – and an our IEP – Individual Education Program toolguide – which provides process and practical tips to knowing your child’s rights.
1:09
Comment From Carol

Hello Suzanne! Thank you for coming on to talk with us grandparents today. I was wondering what activities you like to do with Christian.

1:11
Hi Carol! We love to swim with Christian… he loves to go to the playground, he loves to go to the beach and swim in the waves, and he just made a beautiful little necklace for me so we’re starting on some arts and crafts these days.
1:11
Comment From Melissa

My son’s grandmother is a great advocate for our son. He’s now 8 and enrolled in a private Christian school here in Atlanta after spending 3 years in an intensive program at Emory University. I could talk to you all day about all the things she’s done for him and for us. Thank you to Autism Speaks for first jumpstarting our family into seeking treatment for our son back in 2005.

1:13
Melissa, hi. You have a wonderful mom. Speaking as a mom I knew from the get go just how important it was to be there not only for my grandson, but for his parents as well. We are glad that Autism Speaks was able to help your family at a very sensitive and critical time.
1:13
Comment From Sally

How do I share my time with my other grandchildren?

1:15
Hi Sally. This is VERY important. Not only for the sibling of the child affected but for the little cousins too. We as a family take turns with Christian when we are all together so I can spend some time with his brother and cousins. I must say that they are beginning to understand what autism is, and I do spend time trying to explain why special needs.
1:15
Comment From Annie

This Halloween we will trick or treat for Autism Speaks and ask for donations in lieu of candy! My 3 yr old son, Jamey doesn’t like candy, but he is autistic and that’s how I came up with this idea.

1:16
Hi Annie – We LOVE your idea and we’ll be posting it on our website!! I love the fact that you found a way to celebrate Halloween in your own special way.
1:16
Comment From patricia chabra

I am PAtricia Chabra,I have two son with ASD disorder,I have been doing autism walk for years,advocating for children and adults affected,you are such a mentor and inspirational person suzanne,god bless you

1:17
Hi Patricia – even though it’s not possible for me to be at every walk I am always there in spirit. I’m glad to be connecting with you now here – thank you for all your kind words and God Bless you too.
1:19
Comment From Donna McCombs

First, Thank you for giving your time to us for this chat. How can I teach my daughter’s grandparents to be more understanding about her disorder?

1:21
Hi Donna – our new Grandparent Tool Kit addresses this very issue. It will absolutely give you pointers on how to interact with the other set of grandparents who may be as supportive as your own parents. I really hope this helps – I know how difficult it is.
1:21
Comment From Stephanie

I have a grandson named Jaylin and we have been trying to find him weighted blanket he gets to hot if we put the ones he want but wont sleep without them so we was told about the blanket just cant find them.

1:22
Hi Stephanie – we have a list of sensory products on our website.
1:22
Comment From mark

hi Suzanne!:) im mark from the philippines. i’m glad about organizations such as Autism Speaks and really appreciate the facebook account. I have a brother with autism; just wondering, Whats the latest research in autism, such as its cause or new teaching methods given to autistic children?

1:24
Hi Mark! I’ll give you a link to our science which contains the most up to date and cutting edge science news. On another note we have our Light It Up Blue campaign which runs worldwide during the month of April. Can you help me light up some buildings in the Philippines blue?? We want to light up the world!
1:24
Mark – I hope your brother is doing ok.
1:25
Comment From Melanie Hobbs

Hi Suzanne and other parents/grandparents! LOVE Autism Speaks and the Light it up Blue campaign. One thing I’d love to see is resources and ideas for grandparents for toys/gifts. My son is 9 and there are tons of “autism toy” ideas for younger kids, but I would love to find more ideas for older kids. When it comes to birthday time, Grant’s grandparents are always at a loss (and sometimes I am too!). :)

1:26
Hi Melanie! First, thanks for helping us to Light It Up Blue! We actually have a Toys R Us online guide which was specifically created for differently-abled kids.
1:27
Comment From Melissa

It was actually the Autism Speaks series on NBC back in February 2005 that made us realize what we had been dealing with for 18 months despite protests from our pediatrician to the contrary. Our son was then diagnosed with classic autism that April. He’s now mainstreamed with no educational supports, is on the A honor roll, and has become a bit of a musical prodigy much to our delight. We just recently told him about his autism and he’s still wrapping his head around it. We are finding his classmates are beginning to notice his social and behavioral differences and wondered if AS had any suggestions on how to explain what autism is to young non-sibling children.

1:30
Hi Melissa – great question. There’s portion of our School Community Tool Kit devoted to peers. I’m so happy that you were able to see our Autism Speaks series on NBC. In Feb. 2005 no one was talking about autism – now we have our country but the world talking about it. If you are not familiar with our Light it Up Blue campaign I’d love to have your help to shine a light on autism.
1:31
Comment From Sally

At this point in my life it is too hard for me to talk “live” with other grandparents. Are there any Grandparent support chat rooms?

1:33
Hi Sally. We would love for you to check out the grandparent autism network – which provides support and resources for grandparents.
1:33
Comment From Guest

Hi I’m Flo from Germany. I am an SLP who has worked with autism fro many years. It is so encouraging to be able to use the web to support families affected by ASD.

1:35
Hi Flo. Yes it is very encouraging – what would we do with the internet. Please be sure to connect with us on all of our social networks. And also – help us light Germany up blue!
1:37
I need grandparents!! I feel we should have the support of the AARP with the numbers being what they are; 1 in 70 boys and 1 in 110 children. Thousands of grandparents without question are affected by autism. Here is a link to the President of the AARP: the Board.
http://pubs.aarp.org/aarpannualreport/servicesincar2010?folio=18#pg18Please ask them to help Autism Speaks and our grandparent community to raise awareness about the issues that affect our children and grandchildren with autism by making our grandparent tool kit(http://www.autismspeaks.org/sites/default/files/a_grandparents_guide_to_autism.pdf) available on their website and feature an article on autism in their AARP Magazine during the month of April, Autism Awareness Month.
1:40
It’s so important that the AARP join Autism Speaks – because autism affects everyone – the child, the parents, the siblings, the friends, the teachers, and the Grandparents – who often become the child’s emotional rock.
1:43
Comment From Lania

But how do you get a grandparent to come out of denial? We have been trying for years to help our daughters grandparent that she has autism, but she just will not believe us or the doctors.

1:44
Hi Lania – you know, everyone deals with the diagnosis differently, and I certainly feel for your situation. We have a 100 Day Kit which helps families through the newly diagnosed period. As part of the 100 Day Kit – we have a “Learn the Signs” section describes the hallmark signs of autism in detail. So maybe presenting this information to your daughter’s grandparent will help them understand the diagnosis of autism better.
1:46
Comment From Donna McCombs

Our grandparents on both sides say that if she had more discipline she would not have any behavior issues.

1:46
Donna – the misconception is that aspects of autism is about lack of discipline. This is not the case. Please go to our Learn the Signs and our Grandparent tool kit – I really hope this helps.
1:48
You can learn the signs here! http://www.autismspeaks.org/what-autism/learn-signs
1:52
It has been such a wonderful experience chatting with so many of you today. I really hope that our Autism Speaks website offers you the resources that you need as you navigate through the complexity of living with autism. Know that we are here for you and appreciate all your support. The more people who know about autism will be more willing to help ALL families everywhere. And we can raise the global consciousness by lighting up the world blue in April. Thank for the opportunity to chat with all of you today. Happy Autumn Day. Suzanne Wright

Autism Speaks Co-Founder, Suzanne Wright to Host LIVE Facebook Chat

September 20, 2011 8 comments

Join us on September 21, 2011 at 1pm EDT for a LIVE Chat with Autism Speaks’ Co-Founder, Suzanne Wright! You can read a special letter written by Autism Speaks Co-founders Suzanne and Bob Wright, grandparents of a child with autism, here

Suzanne and Bob Wright are co-founders of Autism Speaks, the world’s largest autism science and advocacy organization. Inspired by the challenges facing their grandson, who suffers from autism, they launched the foundation in February 2005.

Suzanne has an extensive history of active involvement in community and philanthropic endeavors, mostly directed toward helping children. She is a Trustee Emeritus of Sarah Lawrence College, her alma mater. Suzanne has received numerous awards, the Women of Distinction Award from Palm Beach Atlantic University, the CHILD Magazine Children’s Champions Award, Luella Bennack Volunteer Award, Spirit of Achievement award by the Albert Einstein College of Medicine’s National Women’s Division and The Women of Vision Award from the Weizmann Institute of Science.

In 2008, Suzanne and Bob were named in Time 100’s Heroes and Pioneers category, for their commitment to global autism advocacy. They have also received the first ever Double Helix Award for Corporate Leadership from Cold Spring Harbor Laboratory, the NYU Child Advocacy Award, the Castle Connolly National Health Leadership Award and the American Ireland Fund Humanitarian Award. In the past couple of years the Wrights have received honorary doctorate degrees from St. John’s University, St. Joseph’s University and UMass Medical School – they delivered respective commencement addresses at the first two of these schools. The Wrights are the first married couple to be bestowed such an honor in St. John’s history.

The Wrights have three children and five grandchildren.

Click here to read A Grandparent’s Guide to Autism.

Grandparents and Autism Education

September 19, 2011 27 comments

In recognition of National Grandparents Day, on September 11th Autism Speaks is celebrating the  grandparent connection in families affected by autism. During the month of September, we are asking grandparents to share your experiences, so that other grandparents across the country can benefit from your knowledge and the road you have traveled.

How did you educate yourself about autism? Did you find any books particularly helpful? How about websites? A community group or agency? What can you recommend to other grandparents to help them get up-to-date and be well informed?

A Grandmother’s Story

September 16, 2011 9 comments

September is National Grandparents Month, and Autism Speaks is Celebrating Grandparents! Below is a blog post by Kay Richardson, the grandmother of a young boy with autism.

I would like to tell my story. My grandson, Hunter, is 9 years old and was diagnosed at 2-1/2 with mild-to-moderate autism. He is the joy of my life.

Even though the initial diagnosis was shocking and somewhat heartbreaking, if I had known then what I know now, it would have made such a difference. This is what I would like other grandparents of newly-diagnosed kids to know. It does get better, especially if your family takes advantage of all the great information and resources available.

I have been so fortunate to be involved with Hunter’s life from the beginning. He has always loved to spend the night at Granny’s house because he gets one-on-one attention. I have the luxury of time to spend with him and we do all kinds of fun and different things his parents don’t have time to do with him.

Early on, when he was 5 or 6, I would take him along to the botanical gardens I volunteered for and he helped me weed, or he played in the dirt, watched bugs and birds. I got him a local, regional bird identification book eventually and he actually memorized it! He has grown to be very respectful and protective of nature and creatures.

Examples of other things we do (besides just hanging out at home):

  • We went for a ride on a rural excursion train. (He has been in love with trains since he was a toddler and has about 150 Thomas train cars!)
  • Our city sponsored a “Get Out and Play Day” where he experienced rock wall climbing, archery and fishing!
  • We go to the library every other Wednesday evening. He now has his own card. His favorite books are non-fiction ones about trains, weather (hurricanes, earthquakes and other disasters), animals and reptiles.
  • We go on bike rides, and bird watching hikes.
  • In a couple weeks I am taking him to a Heritage Festival where he can see old farming equipment at work, shuck corn and watch a pie-eating contest (I can’t wait for his reaction to that).

The possibilities are really endless. You just need to plan and anticipate any circumstances which might upset or confuse, but that becomes second nature as time goes by.

I feel very blessed to have been given the gift of grandmothering Hunter. His perspective is unique and pure and this is the important thing I think grandparents of newly-diagnosed kids need to know. As grandparents, we have the patience we didn’t have the first time around. Mercifully, we get a second chance! Our reward? A relationship like no other. Take it from Hunter who, when asked by a teacher or principal who I am, says, “Oh, that’s my friend Granny!”

I do blog on occasion about our escapades and my thoughts about grandmothering Hunter. Check it out here!

Click here to view A Grandparent’s Guide: Autism Speaks Family Support Tool Kit

Family Services Office Hours – 09.15.11

September 15, 2011 1 comment

Office Hours easily connects families to a wide variety of autism-related resources, including Family Services Tool Kits, and the Autism Speaks Resource Guide, an online national database of autism providers and resources searchable by state and zip code.

Family Services Office Hours is designed to quickly provide access to resources that are available and free to the entire autism community.

The Office Hours sessions are staffed by ART coordinators who are specially trained to connect families affected by autism to resources.

In recognition of National Grandparents Day, on September 11th Autism Speaks is celebrating the grandparent connection in families affected by autism. During the month of September, we are asking grandparents to share your experiences, so that other grandparents across the country can benefit from your knowledge and the road you have traveled. 

2:53
This month we are focusing on the important role grandparents play in the lives of their grandchild’s life with autism. In addition to weekly Office Hours we will focus on grandparent blogs, development of grandparent resources, and the launch of a Grandparent Support Tool Kit. We are interested in hearing from grandparents who can share their experience what it is like be involved in the lives of their grandchildren who have autism.
3:02
This month’s Community Connections will be focused on Grandparents! If you would like to subscribe, please click this link!
3:02
Comment From Kay

Good Afternoon!

3:02
Hey Kay!
3:02
Are you a grandparent?
3:02
Comment From Kay

Yes, I am…4 times!

3:03
how are things going?
3:03
Comment From Kay

One grandson, 9, lives with mild-to-moderate autism. I’m here to support others

3:04
That is great – thank you so much for joining our Office Hours
3:04
Comment From Kay

Well, it’s hard to say sometimes. It’s not like they come with a meter which tells you if they are being challenged in school to their capabilities or not

3:04
Comment From Kay

IEPs and their goals are a mystery to me. I wish i could attend school with Hunter sometimes, but that would be a huge distraction.

3:05
Kay have you checked our our Individualized Education Program (IEP) Guide? You may find this helpful.http://www.autismspeaks.org/sites/default/files/iep_guide.pdf
3:06
Kay, you may want to consider attending an IEP meeting for Hunter if your son or daughter is okay with that. You are more than welcome!
3:07
That way you can learn more about his IEP and specific goals.
3:07
Comment From Kay

No but I will. I just try to do what I can to expose him to a variety of educational fun things to do, like go to the library, the science museum, etc.

3:08
Comment From Kay

She probably wouldn’t care, but her husband might. When I ask her, she isn’t even sure if they do ABA. She’s not terribly literate on the whole thing, really. I research more than she does.

3:10
Comment From Kay

The other night we went to McDonalds and passed a phone booth. He asked me what it was!! I had to try and explain that some people don’t have phones like Mommy and this is what they use, and the phone book is where you find people’s ph #s. I don’t even think he realized people have phone #s.

3:11
Comment From Kay

At times I get the feeling Hunter’s parents think he’ll just grow out of this…

3:11
That is great that you are teaching him life skills and how to act while out in the community. They are very valuable lesson
3:11
Comment From Ali

My grandchild was just diagnosed last week. Any tips?

3:12
Hi Ali! I know this must be a hard time for you but there are many resources and options available for families.
3:12
The Autism Speaks 100 Day Kit and the Asperger Syndrome and High Functioning Autism Tool Kit were created specifically for newly diagnosed families to make the best possible use of the 100 days following their child’s diagnosis of autism or AS/HFA.
3:13
This may be a confusing time for you family and it may take some time to figure out how you can be helpful. Grandparents do play a vital role in a grandchild and family’s life to be sure to stay involved and supportive!
3:15
Comment From Kay

All the great resources out there make everything less scary, Ali. Be sure to make use of them

3:16
Comment From Caroline

My daughter doesn’t want to face the diagnosis and it is very hard for me to just sit back and do nothing. HELP!

3:16
Comment From Ali

Thanks for the encouragement Kay! It is nice to know there are people out there willing to help.

3:16
It is so nice to see the community supporting each other!
3:18
Hi Caroline! I would encourage you to sit down with your child and discuss the approaches and methods that they have put in place. It is a good time for you to share what you have learned from reading articles or books that you have found helpful. Although it is difficult for you, it probably pays off for you to be patient and let your family grieve and take some time to accept the diagnosis.
3:18
Comment From Oma

I take care of my 5-year old grandson full time… He has high functioning Autism and just started KG. He is still adjusting and it’s taking lots of communication with his IEP team, but I know we will get there. I am getting lots of help and support from local professionals as well as a Parent Advocate, which helps so much, as I am on my own with my grandson. All the resources available from Autism Speaks are such a big help, too.

3:19
Hi Oma! Welcome back!
3:19
Comment From Kay

My daughter depends alot on me, but being older and having more patience has been a blessing.

3:19
Comment From Oma

I do have a question… We need to discuss safety at our next IEP on Friday, as my grandson bolts out of sight of his teacher. He’s a runner and it is scary to think he might run off fat and into danger. Do you have anything that could help at school as well as at home, measures we can take to keep him safe?

3:21
Oma, we have a great resource called the Autism Safety Project. There is a page just for families with tips and resources about how to keep children with autism safe and out of danger.
3:21
We also have a list of safety products in our Resource Library (along with MANY other resources!) that can help you as well.
3:22
Comment From Oma

Wonderful! Thank you!

3:22
Comment From Marcella

My 8 yr olf displays the characteristics of autism, but not diagnosised. where do i need to go?? help

3:22
Comment From Marcella

I’m convinced my son has high functioning autism. He is already in special ed, speedh therapy and occupational therapy in 2nd grade(started last year) all with me pushing the schools. does he need to be diagoned.

3:23
Marcella, we have a great section of our website called What Is Autism. There is lots of information on there and tips to help you learn the signs. We also have a great Autism Video Glossary that will show you the difference in real time!
3:23
Comment From Kay

Caroline, was your grandchild just diagnosed? It may just take time for your daughter to accept it. She may be grieving. She’ll get there.

3:23
Comment From Marcella

thanks

3:24
Comment From Debbie

Kay — same here. For some reason I find caring for my grandson easier than raising my kids. Go figure.

3:26
Marcella, you can also search our Resource Guide for service providers in your area that may be able to help your grandson. Try the category “Where to Get An Autism Diagnosis” or “Psychologists”. There are over 45,000 resources in there across the country!
3:27
Comment From Kay

It seems like for me, I have more of a big-picture view of my grandson than my daughter does. She’s dealing with him day-by-day and frustrated with his behavior and obsessions, but since I only see him 2-3 times/wk I don’t go so nuts and I appreciate his uniqueness more.

3:28
That is exactly why your role is very important! You are a great value to your daughter in giving support the way that you do. It is wonderful that you are able to be an active member in your grandchild’s life.
3:28
It is great that you offer you family a chance to get a break from the day to day challenges, even just a few hours can make a big difference for them!
3:29
Comment From Kay

So I guess it gives not only her a break for me to have him with me, he gets a break from her, too!!

3:31
There is a section in the Grandparent Toolkit coming out Friday, that describes how grandparents can support their grandchild and family
3:32
Comment From Guest

What do u think of a smaller school for autistic kids. My son is in 8th grade and his class has over 600 kids in the 8th grade. He has been diagnosed with pdd and some characteristics of aspergers

3:32
Comment From Lisa

I’m the one who just wrote about a small school

3:33
Hi Lisa! Wow! That’s a big 8th grade! Our School Community Tool Kit may be useful for you. Since every child is different, some children do better in small schools. It all depends on the child.
3:33
You can download the School Community Tool Kit for FREE!http://www.autismspeaks.org/family-services/tool-kits/school-community-tool-kit
3:33
Comment From Sharon

hello everyone… reading everyone’s comments makes me cry… i recently moved over 2000 miles away from my daughter and grandsons. The youngest is 4 and we are waiting for the offical diagnose that he is an aspie… my other grandson who is 10 also is special needs but not autism… I miss them both sooo very much and worry about my daughter now that i am not there to help her

3:34
We are sorry to hear you feel so frustrated being far from your family. However, there are plenty of ways you can continue to help them and stay close to them!
3:36
Technology is an extremely helpful tool. E-mail, chats and especially video chats are great ways to stay involved on a regular basis. Also, I’m sure like all kids your grandsons would love to get letters or treats from you too to know you are always thinking of them!
3:36
Comment From Kay

I look forward to that toolkit. Is there anything like waving in front of your kid’s face yelling, “He’s not just any kid. LEARN something about autism!!”

3:37
Comment From Sharon

i know but just miss the special times w/Mason (4yr old) and w/Alex …

3:37
Comment From Kay

OMG, I would be crying, too! Can you Skype or webchat with them? My grandson loves the computer!

3:40
Comment From Sharon

also i have been trying to find out if there is some place here in the Phnx AZ area that might lend out compression vest for short peroid of time. They are coming here in Oct for my son’s wedding and we will need one for Mason cuz his the ring bearer for the wedding… does anyone know of some org that must help out for a few days w/that?

3:41
Hi Sharon! We also have a great section in our Resource Library for Sensory Tools and Products including weighted blankets and vests. http://www.autismspeaks.org/family-services/resource-library/sensory-tools-products-0
3:41
Have you tried to get in touch with SARRC (Southwest Autism Research and Resource Center)? They are a wonderful organization in Phoenix that may have some other great ideas for you.
3:41
Comment From Caroline

Does anyone have any suggestions for activities I can do with my grandson? He will be 5 next month.

3:42
Hi Caroline! We have some great resources for you! The Grandparent Autism Network offers some useful and practical tips on making the most of the time you spend with your grandchild.www.ganinfo.org
3:43
It would be very important for you to discuss what activities you have had success with. Make sure to ask your children for suggested activities. It is a great place to start!
3:44
Comment From Sharon

Caroline… i found that my grandson loved just going for walks … feeding the ducks… nothing that takes alot of consentration…

3:45
Comment From Caroline

That is a great idea Sharon. I have been trying more exciting activities, but it sounds like walking and going to the park may be better activities for us to enjoy together.

3:46
Comment From Kay

In the fall he might like collecting leaves. Hunter likes to just go to the river and throw sticks and rocks.

3:46
Comment From Caroline

Wow, it is so great to hear ideas from all of you. It makes me feel so much less alone!

3:47
Comment From Kay

When he was 4 or 5 he loved swinging at the playground a LOT!

3:47
Comment From Kay

I take my grandson to the library; we go on birdwatching hikes, Caroline. Things like that. He likes to observe nature. Just kind of try things and see what works. Mostly he’ll like being with you!

3:48
You can connect with other people in the autism community by joining our social network! You can exchange more great ideas by clicking here! http://www.autismspeaks.org/about-us/social-networks
3:48
If you are seeking more support you can search our Resource Guide for groups in your area!http://www.autismspeaks.org/community/fsdb/search.php
3:50
We will continue our grandparent discussion at next week’s Office Hours so please invite other grandparents to join us. We know it makes a huge difference when people are able to connect and share experiences.
3:50
Also be sure to look our for our Topic of the Week!http://blog.autismspeaks.org/2011/09/14/totw-g2/
3:51
Comment From Sharon

nice meeting everyone and ty for the help

3:51
Comment From Kay

I let Hunter be messy too, where his mom doesn’t. We make recipes for playdough and slime and stuff.

3:52
That sounds like fun Kay!
3:54
Comment From Kay

Thanks for this chat

3:54
Your welcome! Thanks so much for joining! Hopefully we see you next Wednesday – Don’t forget to tell your friends to join!
3:56
Autism Speaks is here for you! You can always feel free to call our Autism Response Team at 888-AUTISM2 or email us at familyservices@autismspeaks.org. We are happy to answer your questions!
3:57
We send out different tips and tools each month, and our grandparents newsletter comes out this Friday! Stay tuned!

The Grandparent Connection in Families Affected by Autism

September 13, 2011 56 comments

In recognition of National Grandparents Day, on September 11th Autism Speaks is celebrating the  grandparent connection in families affected by autism. During the month of September, we are asking grandparents to share your experiences, so that other grandparents across the country can benefit from your knowledge and the road you have traveled. 

Like the parents of children with autism, grandparents can have different reactions and responses when they learn their grandchild was diagnosed with autism. What was this like for you? What helped you through this difficult time? What gave you hope for the future for your family and grandchild?

Family Services Office Hours – 09.08.11

September 9, 2011 2 comments

The Family Services Department at Autism Speaks now offers Office Hours!

Office Hours, a new resource available on the web at www.autismspeaks.org will easily connect families to a wide variety of autism-related resources, including Family Services’ Toolkits, and the Autism Speaks Resource Guide, an online national database of autism providers and resources searchable by state and zip code. Family Services’ Office Hours is designed to quickly provide access to resources that are available and free to the entire autism community.

“Having a family member with autism can easily lead to feeling isolated without knowing where to turn. In addition, most families have little free time to search for reliable information about autism, yet they may be in need of timely information. Office Hours offers a quick connection to the Autism Response Team(ART) who can assist you in getting the information you need as quickly as possible,” states Marianne Sullivan, Assistant Director of National Outreach and Resources.

The Office Hours resource is staffed by ART coordinators who are specially trained to connect families affected by autism to resources.

In addition to Office Hours, ART is available by telephone during usual business hours at 888-AUTISM 2 (888-288-4762). You can also reach ART by email at familyservices@autismspeaks.org.

Here is the transcript:

2:58
This month we are focusing on the important role grandparents play in the lives of their grandchild’s life with autism. In addition to weekly Office Hours we will focus on grandparent blogs, development of grandparent resources, and the launch of a Grandparent Support Tool Kit. We are interested in hearing from grandparents who can share their experience what it is like be involved in the lives of their grandchildren who have autism.
2:59
Comment From Jan Molesky

My grandson has autism and is also deaf. He is 10 years old and having some behavorial issues (slapping, unable to sit still) at school. I am not convinced that ABA therapy is the what we want to try. Is there some other therapy you might recommend?

3:00
Hi Jan!
3:00
You are absolutely right. If you are not seeing progress with one specific treatment it is important to look at other options and treatments where you have a better outcome.
3:01
Here is a link to different treatments – look to the column on the left! http://www.autismspeaks.org/what-autism/treatment
3:01
It is important to have data measures on treatments to know whether or not they are working
3:03
Comment From Jan Molesky

I have been heavily involved with my grandson since his birth and am his advocate. That means, I am the one his mom turns to when we need to find information, resources, funding, etc. It takes lots of time but it is one of the most rewarding experiences I have ever had. Thanks for the information. I just researched a little about the Son-Rise program last week and think that sounds like something I need to approach his mom about.

3:04
That is wonderful – good job! It is wonderful that you are advocating for your grandchild and families need all the support they can get
3:06
Comment From Jan Molesky

Is the Grandparent Support Tool Kit already available?

3:07
Not yet! It will be coming out on September 15th as part of Community Connections. You can subscribe to Community Connections here! http://www.autismspeaks.org/family-services/community-connections
3:07
Comment From christine

my son (4 1/2) just started back to school this week. he has an i.e.p. the school just informed me that the have no speech pathologist on staff. he NEEDS speech therapy and it is part of his i.e.p. what should i do?

3:08
Hi Christine! We are trying to keep with the grandparents theme, but we are more than happy to answer your question!
3:08
If speech services are a part of your son’s IEP the school district is required to contract for them
3:11
The Interactive Autism Network(IAN) conducted a survey of 2,600 grandparents of children with autism to learn how having a grandchild with autism changed their lives and how they supported the emotional and economic needs of their adult children and affected grandchild. Here is the link for more info:http://www.iancommunity.org/cs/ian_research_reports/ian_research_report_apr_2010
3:12
This was an important survey because it told us a lot about how many grandparents are involved and the significant amount of time they are involved in their grandchild’s life
3:12
Comment From christine

thank you! sorry i went of topic

3:12
No worries! Glad we could help!
3:13
The Grandparents Autism Network offers some useful and practical tips on making the most of the time you spend with your grandchild with autism. Here is a link! http://ganinfo.org/
3:14
Comment From Pat

I’m the grandmother of a 3 year old boy that has been diagnosed with Autism this year. The only symptom I can see which would qualify him as being diagnosed with Autism is he’s slow in speaking. Would that still classify him as being Autistic?

3:15
Hi Pat – thanks for joining! I am sure it is very hard to hear that your grandson has been diagnosed with autism. Autism is a spectrum disorder and typically there are a number of different characteristics that lead to a diagnosis.
3:16
You can learn more about autism, the signs, symptoms, and diagnosis here http://www.autismspeaks.org/what-autism
3:16
Comment From Pat

Thank you very much.

3:17
As a grandparent you may grieve not only for your grandchild, but also for your adult child. It is important to recognize the ways your can support your family, but remember, you need some time to process all the emotions that you are going through.
3:20
Many grandparents wonder, ‘How can I support my adult child?’ A major concern of grandparents is that the well being of their adult sons and daughters who are parenting a child with autism. Because a child’s autism can lead to emotional, financial, and marital stress, grandparents frequently play a significant role in helping their families
3:22
Here are some ideas on how you can help”
-Reassure your adult children that you are available should they need you, and then allow them some time to come to you without any pressure.-With day-to-day responsibility of caring for their child with autism, they will appreciate an hour, an afternoon, or a day of free time to meet their own needs. As you might imagine, it is often difficult to find someone you trust to watch your child when he or she has special needs.
3:23
Comment From Nikki

Hi I am gramma to 2 boys both with autism 4 and 5 yrs old 5 yr old is pddnos and 4 yr old is an aspie, my question is how can I get through to school they say he is to smart for special ed but the arent looking at the whole picture

3:24
Hi Nikki, thanks for joining. Can you just clarify which grandson you are talking about?
3:24
Comment From Nikki

the 5 yr old and sorry I have sole custody of them

3:25
Each child should be evaluated by the school district to determine what their strengths and weaknesses are. Goals and objectives should be evaluated in the IEP.
3:26
Here is a link to our IEP Guide that will help outline the steps of the evaluation and IEP process.http://www.autismspeaks.org/sites/default/files/iep_guide.pdf
3:27
Comment From Nikki

thats the whole issue, they wont do an IEP because he doesnt qualify for special ed services although he is listed as 504

3:28
If you really feel strongly that he is not getting the services he needs, you may want to contact an advocate that will help you with this process. It sounds like you really feel like he needs more than he is getting.
3:29
Here is a link to our Resource Guide. You can search by your state and find an advocate
3:29
Comment From Raquel

HI! I have a 4 year old girl who is a fraternal twin. Her sister is her best therapist. She was diagnosed at 3 with autism. It seems mild as she’s very interactive with us, just doesn’t really communicate verbally and has a hard time with crowds (social gatherings). Going to a party or out to dinner or a function is so hard, because she can’t sit still and just wants to run around. I actually cringe when I’m invited to something as I know it will be a marathon of running after our little sprinter. My insurance won’t cover ABA which was recommended any tips on curbing that behavior? We’re planning a Disney trip for December and I’m concerned on how we’re going to handle that.

3:30
Comment From Raquel

Sorry, I just realized this was a grandparent theme. so sorry for my long question :)

3:30
Hi Raquel! It is great that you are planning a special trip, but you are right, it is best to prepare!
3:30
We are big fans of Diary of a Mom. She has two daughters, one with autism. They just got back from Disney and you may find her posts helpful
3:32
Comment From Guest

Thank you so much, will be interesting to read her experience.

3:33
We just received this question via email and we would like to share!
3:33
“I just found out my grandson has been diagnosed with autism. I want to help as much as I can. What can I do to help my daughter’s family?”
3:35
Step back and take a deep breath! Your daughter’s family will need your support, but don’t forget to take some time to process your own feelings about the diagnosis. Before your daughter’s family knows what types of support they will need, they also may need some time to process. You and your daughter’s family will go through a range of emotions, including; sadness, shock, and anger.
3:37
There are many ways you can be of support, such as babysitting other grandchild, cooking dinner once a week, helping with the household shopping and other chores, all that you can do to help will make their life a bit easier during this challenging time.
3:38
Comment From Nikki

Are there agencies that deal with autism that have advocates to help? I mean he has been in school 2 wks and injured 4 times by another student

3:39
Nikki, you have to speak to the teacher directly and as soon as possible. If you don’t feel like this issue is being addressed than you have the right to call an IEP meeting. If this involves physical trauma or behavior, you want to do that right away!
3:39
Comment From theresa

My little girl was just diagnosed with Autism spectrum disorder .

3:40
Hi Theresa, we got your comments and today we are actually talking about grandparents. But since you came, we want to direct you to some of our valuable resources!
3:40
Check out our 100 Day Kit. The Autism Speaks 100 Day Kit and the Asperger Syndrome and High Functioning Autism Tool Kit were created specifically for newly diagnosed families to make the best possible use of the 100 days following their child’s diagnosis of autism or AS/HFA.
3:41
You can download it for FREE here or request a copy to be mailed. http://www.autismspeaks.org/family-services/tool-kits/100-day-kit
3:41
Comment From theresa

oh ok thank you this is my first time im sorry .

3:41
Don’t be sorry! We are happy to help!
3:43
Comment From theresa

Thank you so much i took down the # i will be getting that .

3:43
Great! Keep us posted and we are always here to help!
3:45
We just received another email question! “I have a hard connecting with my grandchild with autism. I want to have a relationship, but this behavior makes it difficult. What can I do to have a better connection?”
3:47
Many grandparents experience similar reactions. It can be difficult to build a relationship with a child as the very nature of the disorder complicates their social interactions. A child’s behavior may be off-putting and socially unacceptable which can lead to embarrassment. Be patient, and ask your adult children for support and help. Start out spending short periods of time in a structured activity that your grandchild enjoys. Get some success under your belt and go from there!
3:52
In honor of National Grandparent Day on September 11th the Family Services Team will continue to focus on grandparent role in the lives of their grandchildren with autism. We would love to hear from you! You can email us if you know of a good resource or have any questions at familyservices@autismspeaks.org
3:52
We would like to know if you have any resources because we are compiling grandparent resources to share with the larger community.
3:53
Here is a link to the National Grandparent Day
3:55
We would love to hear some suggested activities to do with your grandchild! Email them to us at familyservices@autismspeaks.org
3:56
As always, you can always get in touch with us! Autism Response Team (ART) members are specially trained to connect families with information, resources and opportunities.Call us at 888-AUTISM 2 (288-4762) or email us atfamilyservices@autismspeaks.org.
3:57
Comment From Valerie

My son has Aspergers and my dad comes from a different time…he just doesn’t understand. Do you have any suggestions? He loves him so much but always seems to be harsh because he doesn’t understand his behavior and thinks my son is just acting out.

3:57
Valerie you are not alone. We have heard from other parents as well about the interactions between their child and grandparent.
3:59
One of the ways is through education. Offer a book or article about autism that your father can read. He may want to observe your grandson in a classroom or therapy session to become more familiar with techniques used by professionals.
4:00
Here is a link to our Resource Guide that you may want to share with your father. http://www.autismspeaks.org/family-services/resource-library
4:01
Thanks to everyone for participating! We hope to see you all back here on WEDNESDAY, September 14 to continue to talk about grandparents and the role they have in the lives of their grandchildren!

Boynton Beach Grandparents Raise Funds for Autism Speaks

February 28, 2011 1 comment

This is a guest post by Autism Speaks Board Member Gary Mayerson. Mayerson is the founder of Mayerson & Associates, the first and only law practice in the nation dedicated to representing children and adolescents with autism spectrum disorders.

From its very inception, Autism Speaks has recognized the importance of family support, and the role of the extended family.  Indeed, Autism Speaks was founded by two highly motivated grandparents, Bob and Suzanne Wright.

On February 15, 2011, approximately 150 Boynton Beach grandparents attended a luncheon fundraiser for Autism Speaks, raising more than $10,000 in the process.  They came to listen to Autism Speaks Board Member Gary Mayerson speak about the epidemic-like statistics, and the many ways in which Autism Speaks is addressing the problem.

We wish to thank everyone who attended and, in particular, the following committee members who organized this worthy event:  Gerri Ackerman, Elaine Baranoff, Luba Ditkowitch, Ellen Feller, Harriet Fried, Carolyn Holland, Shirley Meltzer, Mara Lee Nozetz, Rita Rosen, Patty Rosenfeld, Phyllis Spieler, Dee Silverman, Ruth Schwartz, Renee Telsey and Sylvia Zeidman (Gary Mayerson’s mother in law).

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