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Advocate for Medical Care for People with ASD Transcript

 

7:00
  Hi everyone. I'm Dr. Ricki Robinson and I'm thrilled to be back with you again for a live chat with Autism Speaks. This is my 3rd visit and each time has been probably more exciting for me than anyone since my passion is all things "autism". I am a member of the Scientific Review Panel of Autism Speaks and also serve on the National Autism Conference Committee that will be hosting the first annual Autism Speaks conference for families and professionals exploring medical issues in children and adolescents with Autism Spectrum Disorders (ASD) - August 3 -4, 2012 in Colombus, OH. (www.autismspeaks.org/2012nationalconference

I welcome all of your questions. Since I am a general pediatrician whose practice is devoted to children with ASD I'm used to fielding all concerns parents have regarding their child's development and especially medical well-being.

 
7:07
  Many parents ask me where they can find a pediatrician or other physician who can help them care for their child. In an ideal world all primary care physicians would hav eexperience and understand the issues facing children and families living with autism. We are not there yet and so i recommend that parents try to find a physician who first and foremost will listen to them. Finding a doctor who listens to your concerns and is willing to learn the patterns of your child's behavir, especially when he is ill, is incredibly important. Additionally, if the doctor is willing to work together with you in partnership, together you can work through the medical concerns while finding the resources that exist within your community. Since everybody's needs are not the same I suggest that you determine in advance what characteristics in a doctor are most important to you and your child and be prepared to explore these during an interview.
7:08
 
Comment From Debbie

I have a 22 month old that has qualified for services through the school district under ASD. We are waiting to see a dev pediatrician to get an official diagnosis. Currently he has services through the school district 2 hours a week and speech therapy an hour a week through private therapy. Any advice on other things to consider while we wait to see the dev pediatrician? His biggest issues are limited eye contact, limited understanding of what is said to him and though he is vocal he does not have any words

 
7:13
  Debbie, this is a really good question that is really pertinent to our topic today since access to care for children with ASD can often be limited. Even here in Los Angeles where I practice wait lists can be long. From the time a parent becomes aware that their child has a problem to having a diagnosis actually made for them can be months to a year long. What we recommend is that in addition to the therapies that you're getting that you learn the best way to start interacting with your child. The core issue of autism is the difficulty children have communicating and relating. If we can determine the best way for a child to attend and engage in a relationship we actually are cementing the foundation for further developmental growth. There are many ways this can be done. I talk about ways in which parents can begin to understand their child's unique individual differences in sensory processing and motor responses in my book "Autism Solutions: How to Create a Healthy and Meaningful Life for your Child". Once you have clues as to the best way to intereact then getting down on the floor, following your child's interests to catch the "gleam" in his eye can jump start your program.
 
7:14
  In addition, Autism Speaks offers a free 100 Day Kit for families whose child has been recently diagnoised. You can order the Kit by calling 888-288-4762. 
100 Day Kit: http://www.autismspeaks.org/family-services/tool-kits/100-day-kit 
 
7:14
  If you're interested in my book, more information is available on my website www.DrRickiRobinson.com
 
7:15
 
Comment From Guest

My 16 year old son eats fairly well. He is autistic and does well. He does go to a special school for kids with autism. He takes calcium and multi vitamin. Should he take B6 and magnesium as well?

 
7:16
  Studies have shown that children with ASD often do not have appropriate blood nutrient levels, suggesting a possible need for supplementation. This obviously varies per individual child and is a perfect question for you to discuss with your physician who may want to measure these nutrients in your child's bloodstream and see if supplementation is required.
 
7:17
 
Comment From Susan

If my child is experiencing GI issues, should my Pediatrician he refer me to a specialist. I am concerned he doesn't know enough about GI specialty.

 
7:21
  Susan, another good question. It is not uncommon for children with autism to also have many GI concerns. There are many reasons for this The exciting news is that we are getting more and more information about this association through research and awareness among physicians has been increasing - especially with the Autism Speaks Autism Treatent Network centers of excellence for clinical care, clinical research and training professionals. There are 17 ATN sites across the country. If one is near you perhaps your physician will be willing to refer to the site. If not, I would find out if he's comfortable exploring potential GI concerns with you. If not, then absolutely request a referral to a GI specialist. The bottom line is "follow your gut". If you feel there is something going on - keep advolcating for your child.
 
7:21
  For more information on ATN sites, and recent research: 
http://www.autismspeaks.org/science/resources-programs/autism-treatment-network
 
7:22
 
Comment From brenda

what do you reccomend for the child with severe reactions to noise such as cars, motorcycles etc. ear phones ear plugs quiet area in home no help. child on risperadal x 45 days. Dx PDD MMR OCS

 
7:26
  Brenda, obviously your child is experiencing severe sensory overload through his auditory system. Sometimes other sensory input such as a weighted vest can help during a car ride. The notion is to attempt to regulate his sensory system in general so that he can tolerate what is clearly painful auditory input. Decreasing the sensory load in the car with light screens, perhaps using sunglasses, having him watch a favorite video while travelling might be useful in distracting him from the auditory assault. It is important that everyone understand that this behavior is very real and painful for your child, much like a fingernail on a blackboard might be for us. Being understanding and letting him know that you are here for him and will help him work through this will go a long way to support him through these periods.
 
7:28
 
Comment From Sherri

My Grandson has not been fully diagnosed with Autism...I believe he does have it though. his delay in speech for a child of six is so underdeveloped. He also has a hard time talking and gets frustrated easily....He excels at playing video games. I am concerned for him because his doctors just say it is nothing. Why such a brush off when you know that this child is not in the normal spectrum of behavior for his age?

 
7:32
  Often grandparents are especially confused by the response of the medical team which is amplified by the fact that you can't speak directly with them. If that is the case, I suggest that if your children are willing, you ask if you can also come to a visit to voice your concerns and to ask the physician what the next steps are for figuring out your grandchild's issues. You will also be another set of ears at the visit which could be very overwhelming for the parents to help sort out the information they are receiving and to also remember the information. If together you feel that the doctor is not responding to the needs of your family then it's time to move on. Unfortunately there are those who still think that because a child can smile at them on ocassion, he must not have autism. We now know that's not true. Every child who is having difficulty communicating and relating should have a complete evaluation to determine his strengths and challenges and to develop a plan that will help him grow and develop to be the best he can be.
 
7:32
  For more information on Grandparents and Autism go to 
This tool kit is designed specifically for grandparents of people who have been diagnosed with autism. This tool kit will help grandparents to: 

Learn about autism and its impact on your family. 
Discover ways to support your children who may be struggling with their child's autism diagnosis. 
Find out ways to develop the best relationship you can with your grandchildren. 
Feel support and encouraged so you do not feel lonely or overwhelmed 
http://www.autismspeaks.org/family-services/tool-kits/family-support-tool-kits

 
7:33
 
Comment From Donna

Our son is 4 and is biting a lot of things including his shirt. Our GI doctor thinks this may be acid reflux. Is there anything else we should be checking into? We are trying prilosec, but he is not wanting to take it with applesauce or in compound form. He does have sensory issues, but the biting is so much that we think it is more than that.

 
7:38
  Donna, the good news is that your physician is exploring a potential cause for your child's symptoms. When children are biting, drooling or spitting one of the primary causes may be gastroesophageal reflux disease (GERD) as your doctor has suggested for your child. He has begun appropriate treatment and often in medicine we use response to treatment as indication of the primary condition causing the symptoms. Clearly your child needs to take the medicine. 

Over the years my parents have found unique ways of getting their children to take medicine. For those who like chocolate, we often will slightly melt chocolate such as a Hersheys Kiss and then put the pill into the chocolate and freeze it. The children then will often take the chocolate kiss not realizing they're also getting medicine. If you're using the liquid version sometimes using a syringe and squirting it into the back of the throat with a juice chaser can do the trick. The point is, especially for children with ASD, you have to find out what technique will work for your child.

 
7:39
 
Comment From Debbie

Hi My son has been bullied in the past but now He is acting like the bully . What should we do. He is 12. thanks

 
7:43
  Debbie, you bring up an interesting question that actually occurs very frequently among children who are typically developing. The pattern of the bullied becoming the bully is not uncommon. When this occurs, and it is fortunate that you have identified this in your child, I generally suggest bringing in a professional who understands these issues and has ways to directly help you and your team and your child work through this concern. For a child with ASD, it really depends on his level of understanding on both the cognitive and emotional level what happens when children are bullied. Since children with ASD have difficulty with relating and communicating often professionals will work through play to help children develop different patterns of relating.
 
7:43
  For more information on Combating Bulllying 
Special Needs Anti-Bullying Toolkit is avaialbe on the Autism Speaks website 
http://www.autismspeaks.org/family-services/bullying
 
7:44
 
Comment From Christina

My son is 9 years old, He has Asperger's, Bipolar, ADHD, Anxiety, Chronic Constipation...you know the works. We have been on many meds with little luck to control his multiple issues. He is very aggressive and doesn't listen. We have tried everything. Where do we go from here. We want to tried ABA but our insurance doesn't cover it. One of our biggest issues is constant swearing to hurt us and others. He says really bad things.

 
7:51
  Christina, your son's issues are obviously very complex and in my experience are very inter-related. When I have a child with autism where everything we've tried does not seem to work I go back to the basics. This means starting over again to identify a child's strengths and challenges and to be certain that each of his challenges have been met. So often when a child has been in a program for a long period of time, the program doesn't change to meet his needs. That causes extreme frustration and acting out. One of the biggest issues that we see are unmet medical challenges. For kids who in particular are aggressive, we must be certain that they are not suffering from medical conditions. This means intensively reviewing his sleep patterns, nutrition, GI health, presence of chronic infections, potential seizure disorders and immunologic concerns. The biggest message here is that your child's behavior is his way of communicating that something is not right for him - either in his external environment or his internal environment. All factors should be explored. 

Finding that trusted professional who is willing to go through these potential issues with you can be your first step to helping your child re-regulate and learn better ways of communicating and relating. I cover this notion of behavior as communication in children with ASD extensively in my book, discussing not only the medical issues but also potential issues with comprehension and expression as well.

 
7:52
 
Comment From Fred

We have two sons that are autistic (moderate - severe), ages 7 and 11, and now the school has done some diagnostic testing and feel that our 2 year old daughter is also autistic. The only things we see at home that indicate that she might be is lack of speech and social skills (due to lack of ability to communicate). She does occassionally circle around objects (like sets them on the floor and runs around them, but my mom says I did that when I was her age too). Many of the things she does seem to be typical of a 2 year old. Some of the lack of socialization could be that she has never been in a setting in which she can participate in normal play with peers. The only influence she has really had besides us as parents and her grandparents are her 2 autistic brothers as all of her other siblings are out of the house. Are we looking at the right thing (autism) or could it be just some developmental delays?

 
7:58
  Fred, I am certain this must be extremely difficult for you and your family. I agree with you. We don't yet know if your 2-year old has autism for certain. However, as you mentioned, it appears that she does have developmental delays in her ability to communicate and relate. This is really a "red flag" that she should have a full evaluation and in this evaluation her functional capacities to attend, engage, and relate in a reciprocal fashion both gesturally and verbally can be identified. The good news is that if she does not fully meet hte criteria for autism yet still has evidence of delays in these areas, therapy can have great success in helping her move up the developmental ladder. It is my belief that all children who are delayed should have the benefit of appropriate therapy as early as possible to maximize their progress as they grow and develop. It appears that your 2-year old could benefit from early intervention services. There is research evidence that siblings of children that have ASD do have an increased incidence of autism and other developmental delays - particularly in communicating all of whom will benefit from early intervention. 

If anyone reading this is concerned about their child and the possibility of ASD, the Autism Speaks website offers the modified checklist for autism in toddlers (M-CHAT) as a validated screening tool to identify if your child needs a full evalaution.

 
7:59
 
Comment From Rose

My 5 yr old nonverbal son with asd is currently going through an Ed Psy Eval by an independent evaluator. He is non verbal but so smart. Through informal assessments she can see his strengths but not in the standard assessment she is doing. I am so frustrated because I want to get the most accurate evaluation but how can you get that when he doesnt always comply? I am sharing videos of him that I take to show her an idea of what he knows. Are more ideas?

 
8:07
  Hi Rose. I hear your frustration. In many ways it's my frustration as well. Often children with ASD are not able to take standardized tests that require them to have typical sensory motor processing in order to complete. This is often very true for non-verbal children who have verbal apraxia and motor dyspraxia and very slow response times. The introduction of the IPAD for childrne with ASD has been incredibly helpful for all but particularly those who are non-verbal who can indicate what they're thinking and feeling by typing. If you think that may be appropriate for your child requesting an augmentative communication consultation might be indicated. 

If the Ed Psych evaluator is experienced with non-verbal children she too may have developed techniques to find out what your child really knows. Many of the non-verbal children I follow are extremely bright but limited by these standardized tests. This really requires working "outside of the box" to understand the unique profile of each child. As I've said many times before, parents know their children best. When parents tell me their child is smart they are generally correct. I help them compose a profile of why they think this - what indications do they have that lets them know their child has intent, ideas, and feelings but is limited by what his body allows him to express either verbally or gesturally. This then allows your team to also view your child through a different lens and come on board to find ways to support his ability to express these thoughts and ideas. All children need to be able to communicate what they think and feel. It behooves us as professionals to find the right path for each child.

 
8:12
  The time has gone by very quickly and I truly appreciate all of the insightful questions you've sent in. I'd like to invite you to join us at the Autism Speaks national conference August 3-4, 2012 in Columbus, Ohio where we will discuss these issues in-depth and explore the emerging research that is not only verifying the existence of medical conditions in chidlren with ASD but also giving us possibilities for treatment that will improve the quality of children's lives. 

I realize some of you may say "why would I want to come to a medical conference?" This conference is devoted to helping parents understand what might be happening to their children and what they can do about it. We look forward to seeing as many of you there as possible. I assure you there will be expert physicians and researchers who will be excited to address all of your concerns. Thanks again for attending tongiht. The link for the conference iswww.autismspeaks.org/2012nationalconference